Stranded in Motherhood

I Don't Think, And Yet Here I am...

2012-02-15T11:13:00.000-05:00

That title is the motto of the minds that set up services for autism in our social welfare system.

At least that is my opinion. Don't quote me on it.

I would be more than happy to have LESS money from the government and do FEWER hours of quality therapy with FEWER therapists and make huge strides in K's development and learning with people who are invested in their jobs and in him.

But guess what? That is not allowed.Instead I have to be forced by the police-like, "I know what is better for you" inaneness, to hire more people, to do MORE hours of therapy, compromising therefore on the QUALITY of the delivery, just so MORE money is spent in a shorter period of time, so that the STUPID people running this bogus operation can say, "Sorry there is no money left now so we have to withdraw all funding from your program so your child can now have NO therapy. Here is a place you can send him to, where more rigid stupidity culminate to create an atmosphere of incompetence ensuring failure. It is called SCHOOL". BYE BYE.

It reminds me of a John Taylor Gatto quote: "Self reliance is the antidote to institutional stupidity."

I have to find ways to make myself self reliant with my son and his learning.

There desperately needs to be more flexibility in funding for autism therapy and education in general in this country. But for that, state would need to relinquish some of the control they have over dispensing OUR money that we voluntarily give them every year. And that would probably cause civil war.

Dot To Dot

2012-02-14T18:29:00.000-05:00

Successful teaching involves learning about your student through observation. That is what I am telling myself these days as due date gets uncomfortably close and I find it hard to squeeze everything in to a day against the tide of viruses, my son's crazy mood swings and this awful weather.

We still have not begun any formal Math instruction. It is part of one of the ABA programs (correspondence counting) but the futility of the exercise does not escape even my therapists, thank God.

K does enjoy dot to dot pictures and mazes, but he likes to practice so I had to laminate the pages. This way he can erase an error and do them over and over.

It is an activity he sort of chooses to do on his own. There isn't much to do for a teacher or in RDI terms in this, it is just his break time or free time activity.
He does ask for help if he can't figure things out.

Here is a video of him at it.

I like how he added his own imaginary "rain" and "funder" (thunder) to the picture. Very cool. I don't get any looks from him despite my commentary. He still has very limited emotion sharing referencing and rarely feels the need to engage another just for the sake of their attention by looking at them.

That baby really is a distraction when we are trying to do stuff together, which is why she often gets shipped off to the baby sitters when we are working together on reading and other objectives a couple of times a week. She wants to do everything we are doing and is quite the attention sponge.

When The Boy Gets to Work

2012-02-12T17:20:00.001-05:00

We had a round of some kind of nasty stomach flu and this time everyone got hit, me being the last to go down of course. K was hit the worse. It wasn't like the stomach flu of last year (around the same time) when he ended up in hospital for two days because of dehydration, despite drinking and being looked after at home, he was pooing bile and vomiting blood. This was much milder, but it is always interesting to see how his digestive system just cannot manage the upsets that others recover from relatively quickly.

Anyway, he sure is back to his usual self now because in the space of a few hours he has broken these cupboard doors....

Uprooted this Ikea lamp from its base with such force that the metal has stripped and it cannot be fixed.

And yanked the curtain rod out from his room, which I couldn't be bothered to photograph.

This has happened so many times that we have lost count, so it shall be logged as another day in the life of.

I have to admit, while he was sick, it was as if I was on holiday. For two days he sort of just kept to himself, not moving around, not breaking anything. He just sort of lay in bed or in front of the fan heater, warming himself. Poor thing. I didn't realize how awful this bug was until I got it, and kids do so much better when they are ill.

He also made this bird out of popsicle sticks. This is a first. He draws, but I have never seen him make anything from scratch, on his own, without being asked, prompted, assisted or given ideas. Its the same bird that has been popping up in other pictures and on his doodle board (which is also broken from being stood on constantly).

So we are glad he is feeling better.

Canadian Association of Muslims with Disabilities Annual Gala Dinner

2012-02-07T18:45:00.001-05:00

Come to this event organized by this most excellent group of dedicated people.

Support your local community. Especially Muslims, we desperately need to increase community involvement and the spirit of charity and mentorship within our social circles.

For tickets and more information go to www.camd.ca

If Pictures Could Talk

2012-02-04T17:46:00.000-05:00

When K is more regulated, he sometimes choose to draw on paper or his doodle board. This happens maybe once or twice a week for a few minutes, that's all he can manage right now!

But it is a beautiful little window in to his imagination. We hope one day he will be able to describe his pictures to us, and find more ways to express himself more consistently.

Some kids have a bad day. We have had a bad week. We used to have bad weeks. So this is good. Hopefully next week K will be more physically regulated and we will see more pictures, time with books, focus and hear more words. And a little less breaking of cupboard doors, running in to walls, breaking curtain rods, whining, jumping off things and flinging stuff around the house.

Here are some he did last week before he went in to lala land of physical chaos.

That's a sun. I am not sure what the lolly pop things are.

That's a "Dot to Dot House". That is what I was told it was. I think he made the house and put dots around the border because he really enjoys dot-to-dot books, but can only do the ones up to 10 or sometimes 15 with help. That is a car next to the house, both have smoke coming out of them!

A train on a track with box cars and steam.

Another train with roundy cars and steam!

And a doodle board bird.

Setting up Your Home Based ABA Program From Scratch Part 2

2012-02-02T11:11:00.001-05:00

A couple of months ago I did a post about setting up your home based ABA program. I focused on hiring people, which really is, in my opinion, the major difficulty in the process and also determines the quality of your program.

People read that and emailed me lots of questions. I will try to answer them here.

Salaries

I have been told by our therapists and also other new parents of the lack of regulation for therapist salaries in this field, in particular the Greater Toronto Area. Some sad and disturbing news was that there are some new graduates (within 6 months of experience) charging families $80/hr for therapy!!!

Three exclamation marks for greed and soul-lessness.

I will repeat some things again in this post. As a parent of a newly diagnosed child or one who is setting things up for the first time, you can become the target of greedy soul-less people very easily. Remember when you were looking for work, what did employers look for usually? Think like an employer.

I have not run this program for decades, it really has only been 3 years. So whatever rates I am going to post are current ones.

New graduate with minimal experience $15-$18 max.
Newbie with 2+ years experience $20 - $25 (usually the ones with a proper bachelors degree will charge the higher end).

Remember that just like in the real working world, some universities are BETTER than others. So don't pay everyone the same. Why should someone who graduated from some crummy, disreputable institution get more?

Experienced therapist with 5-10 years - $30+
This individual should know what they are doing, and be able to work with minimal supervision. They really should have worked hard to build on their qualifications. If after 10 years they are still working with a ECE diploma, then DO NOT pay them $30 per hour. I know girls who are decent and honest and do not charge this rate despite their experience because they do not have the qualifications. Look for such decent human beings.

Senior Therapist - 10+ years of experience and BOARD CERTIFIED. I would not work with a Sr Therapist who did not get supervised and certified by the Board. A minimum BCABA should be there. This is the only level of therapist who can charge 80-90.

These are rates that we have paid, that other families are currently paying good therapists.

If the government will not regulate rates in this profession, then we as employers have to do it ourselves. Please be informed. Share this information with others and do your research about universities and programs.

Is there a difference between George Brown graduate and a York Psychology graduate? Do your homework and bring it up in the interview so the person knows they are not dealing with some idiot. This is your hard earned money and your child's future. Autism is an expensive disability but it isn't some black hole where you just throw your money away.

How to get Financial Help

Many people have emailed me to ask me if they should take out loans to fund therapy. I am not a financial adviser. I can direct you however to organisations that do provide help:

President's Choice Charity - has a salary restriction of I think $60K (if you make more you don't qualify). Win their hearts with some photos or DVD of your kid. They give a one time sum of around $6000 dollars.

There is the governments Disability Tax Credit. It is not really enough to run a program, but you can start saving for your kid's future or use it to buy some materials. Everything helps.

Jennifer Ashleigh Children's Charity - for some reason their website is not working this week, but hopefully they will fix that. Keep checking.

Easter Seals Ontario - They fund camps and special equipment.

Special Services At Home - This is a government funding. Many parents I know have used it to run ABA private programs for years. Unfortunately in Toronto it is not available and you will not be refused but put on an indefinite waiting list for the rest of your life pretty much. Its not coming. I have heard families in Peel still get it. Move to Peel :D

Assistance for Children with Severe Disabilities - A government funding often used by parents for respite (parental relief qualifies as eligible). It is based on income and we never qualified so we never used it.

As for loans, that's a personal decision. I would not personally take out a loan to fund early intervention. Simply because there will eventually be middle intervention, adolescent intervention, adult intervention and so on. I mean how many loans will you take out? If I had to take out a loan, I would take one for my OWN education. So maybe one to fund RDI, which educates parents ALOT. Or take a Vincent Carbone workshop and so on. Then I could save myself from taking out loans by doing the work myself :D. But that's just my opinion.

Other Help

These organisations may not help with funding, but they do help sometimes find people that you can pay for, who are actually decent, and you can depend on their credentials and police checks etc. I know parents have used workers from these organisations for respite and camps.

Reach for the Rainbow - I have never used them, but I know a family who have used their support staff to send their son to various camps and are very pleased. They are not free, but can be subsidised.

Extend-A-Family - They have various local support groups run by parents and family members in church basements mostly. They are a lovely bunch of people who have lots of experience and advice to share. Community support is very important I believe in supporting a disabled individual through to adulthood. You need friends. They do workshops, friendship circles etc. In the summer they can pair your kid with a student to help him/her out at camp or some other community program. For free.

SmileCan - They also provide a small amount of financial assistance and organise integrative events, parent workshops that you and your child can attend. Volunteers assist the children at the events. The turnout is mainly Muslim, as they are run by a bunch of Muslim volunteers and students.

CAMD - The Canadian Association of Muslims with Disabilities. They also organise Eid parties, parent training workshops and other sporting events for the older group of Muslims with ID's. However they are a large organisation for ALL disabilities (including deaf and blind etc). I am a member so you might meet me at one of those events :D There is a bonus! lol!

Psychologists and Testing

People have also asked me if they need a psychologist and need ADOS or other testing for their kid to start an ABA program. Honestly, if you are short on cash and running a private program then I would say no. Its always nice to have a test and a baseline, but many psychologist know as much about autism and ABA as a butcher about neuroscience. You may need one to diagnose your kid privately. I mean they have all the checklists and tools that can be used to diagnose a person, if you cannot wait on long waiting lists to see developmental pediatricians (who are just as hopeless).

An excellent senior therapist is your best bet. Get a diagnosis and start working on a flexible and individual program.

I am not against testing, I just don't feel there are awesome tests to assess change in behavior. Isn't that more important?? This guy does a much better job of explaining this. My knowledge is limited and I cannot explain these things as well.

All I can say is, we have run a decent program for 3 years without these two things.

And I hope that answers more questions!!

Welcome to Guiltville You Will Be Here Indefinitely

2012-02-01T09:11:00.001-05:00

Do parents ever stop feeling guilty?

We had family visit us this weekend and stay in our home. Arare occurrence, one that we are desperate for, being as isolated as we are, yetprepare for with dread because of our special autism issues.

As lovely as it isto see smiling faces of family members, it is not so lovely to watch ourautistic kid start bouncing of the walls, feeling incompetent and completelyfailing at initiating or sustaining any kind of interaction with the otherlittle kids that would fall within the bounds of non-pathological. I don’t wantto use the word normal because we rejected that word from the English languagea while ago. It’s usage is banned and if you find me using it, please alert meto my slip up, and I shall immediately administer a suitable punishment tomyself.

The guests departed Sunday morning and I did not realize thegravity of the dysregulation until I noticed my son asleep on the couch lateSunday afternoon.

Then to add to the chaos, the next day, my husband decidedto take him for a haircut, to a new barber in a new place. Nice. K screamed “nohair” while picking up bunches of his curls from around him trying desperatelyto put them back on his head.

So I feel guilty today for not being able to scaffold theweekend adequately for my son. Perhaps scheduled activity breaks outside orbetter planning may have made things easier for him. Perhaps taking him to thesame barber he is used to and has been going to for the last 3 years, and NOTusing a trimmer (but plain scissors, that he is less nervous with) might havegiven us the opportunity to reinforce success and positive episodic memoriesassociated with hair cutting.

I have been meaning to take him out to an indoorplayground so he could let off some steam. My current pregnant state, and a oneyear old make it difficult to watch K all the time in public places now.You have to be on him literally. Last time he tried to “play” with a littlegirl, and dragged her down the inflatable slide with him despite her protests,so he could “crash” down together in a heap. Something I have noticed kids doon inflatable slides, but she was not interested and her mom was not pleased atall. We had to remove K from the play area for a while as he screamed and had ameltdown because he did not understand why he was being punished.

I need anextra set of eyes to watch my daughter in emergencies such as these, and so Ihave been putting off going. The result is we are home a lot and for the pastthree days all K has wanted to do is run in to walls, cupboard doors and flingthings around the house.

He is refusing to use words to speak, and all we get to hearis an incessant whiny voice until around 10 or 11 pm when he has been cryinghimself to sleep.

And of course, yesterday I may have uttered some obscenity inthe car when everything was out of control, and K has been repeating thatparticular phrase like a stuck record.

So it’s that time again when the guilt piles up and you feela total fail of a parent for either not knowing how to connect with your childto ease whatever he is going through, or you know what to do but just cannot doit.

Looks like another day of jumping off shelves with a plasticbin on his head. I feel truly bad forthe guy downstairs. Have to make some effort to send him a present or somegesture of neighbourliness. More guilt.

What's On Our iPad

2012-01-30T15:49:00.000-05:00

I have been asked by a few people if the iPad has "helped K communicate" or heard remarks along the lines of "I have heard the iPad helps treat autistic kids".

Usually these do not come from people who work with children with autism or parents of kids on the spectrum, but from those in the outside world. People want to believe autism is fixable and people with autism can have great outcomes and so on. People like be optimistic.

Sometimes this can be frustrating to those living with autism 24/7 because they feel their challenges are being trivialised or others just don't get how difficult it is for their kid to learn and function. The truth is that no one is going to spend hours upon hours reading about autism, learning about the various ways it expresses itself in individuals, the different interventions and treatments, the different behaviors and their functions and so on, unless they are directly affected by it i.e. unless it is their own kid. Even family members sometimes just want to hear the good report and want you to tell them the hopeful bits. These expectations from people to understand your situation or be truly sympathetic to it are often unrealistic in my opinion.

Anyway, no the iPad is not the next autism intervention. Like the chalk, the paper, the pen, token board or computer, it is just another tool you can use. It is portable, has a touch screen and pretty graphics and lots of "apps" that can be bought for a small price or downloaded for free. Some of them have some educational value, mostly it is another screen for entertainment.

We do not use our iPad except as a reinforcer for ABA therapy or in severely difficult situations (like the twice a year Eid prayers, or when we are forced to go to a new restaurant with some people and cannot turn them down. This second scenario almost never happens because we are socially handicapped :D)

But people want to know so here is the list of stuff on our iPad, right now.

Angry Birds - no need to explain.

Labrynth Lite - a maze game, where you have to guide a ball through a maze and not let it fall in to the holes along the way.

Cordy- little robot guy needs help navigating a strange grassy world. Very simple and easy controls.

Float - balloons falling on spikes, you have to use your finger to diver them away from their inevitable end.

KP Balloon - a hot air balloon kind of floats at increasing speed in the sky, avoid the dark clouds, winds and birds and bump in to the sun and rainbows.You just tilt the pad to control which way your balloon goes.

Talking Tom - annoying cat repeats everything you say in chipmunk voice.

Shape-O!'s ABC - drag shaped puzzle pieces to fi ta picture and spell the name of the object.

Dot to Dot numbers and letters - use your fingers to join the dots. Very popular with my son.

Fruit Ninja - addictive pointless game where you slice fruit but avoid slicing bombs that are flying around. Obviously my son has no concept of scoring and winning so he just really likes slicing the bombs.

My Play Home - my favourite app. A virtual home where every household item works, from the CD player to the shower. My son loves it and tries to live it in real life!

Bob Books - Probably the only educational thing we have on our iPad. If you haven't experienced them in real world life, then they are little books available at any bookstore with simple word families or sight words and give kids the confidence of having read a book on their own. The app has the same books. We don't use them much yet.

And that's it. Not the most exciting list, but there are a lot of websites that list iPad app by age, interest and function and you can google them.

I don't feel the iPad has any breakthroughs for us, except that it is a fancy toy that has kept my son interested enough to answer a few questions for it during table work. Its easy to give him some reinforcement with a few minutes on the iPad. It is quick, tangible and easy to control for the therapist. Two of my therapists have their own iPads and when they work with K, they use their own apps. Youtube app is popular because of short videos.

The fact is that it is small, easy to use and portable, which make it less distracting to have the kid get up from his chair and move to a computer or lug something bulky like a laptop around with you in times of need.

There are iPad apps with flashcards, PECS and other VB/ABA tools, but we don't use those.

If you can afford a cool toy like the iPad or have someone gift you one, then go ahead get it. As these people have made the brilliant discovery that "Autistic kids are fascinated by screen-based technology", so that's lovely that someone took the time and money to prove that blaringly obvious fact that can be applied to almost any subset of kids.

I will say however that if your kid struggles to use the computer, can't read yet, struggles to understand and play computer/video games, then the iPad offers some good ways to take a break, find reinforcement and build some confidence. For this reason it can become easily addictive and an easy escape tool, like any other screen technology. So be wary.

Salad Spinners and RDI

2012-01-20T21:10:00.000-05:00

There has not been an RDI post or update on this blog for a while. (Compared to the numerous posts and videos we did when we first started a couple of years ago. I cannot believe it has been that long!). There are reasons for this. A recent email on the AutismRemediation mailing list (a mainly RDI mailing list) prompted me to write an update on the state of our RDI.

This blog and I have been through many changes over the years. We fluctuated on our biomedical protocols, our views on ABA therapy, Autism, Islam and just life in general. But this is an honest blog, honestly :D
Because such is life. Why should I pretend to cultishly stick to something, some school of thought, or some group, when I am still figuring things out in our journey through autism, parenting, Islam and life?

The only constant on this blog is our love for our son, and the desire to see him flourish. A quest for self improvement and most of all, learning.

First let me tell you about this cool salad spinner painting we did. Apparently painting with salad spinners is all the rage among homeschoolers. We do crafts with K lot. I particularly enjoy making/constructing stuff and painting. Gluing, cutting and glitter and all that frilly stuff, we leave for the therapists. I like big projects. And we don't post about all that.

But once in a while we will do something that is so simple, and provides such a great framework, with actual quality output that I am compelled to put it in a post.

That picture pretty much tells the story. You stick a paper plate in to the salad spinner. Some acrylic paint and spin to your hearts content. It was a hit with K, required no preparation or waiting for things to dry or stuff falling apart. And I mean, the salad spinner spins, like crazy. So enough said.

There are many ways to make this nicer and prettier, and you can google all those. The homeschool blogging community is abuzz with salad spinner art. I did not come up with this.

RDI

It was a silent activity. I modelled the first two plates for K and "expected" him to join me and he does not need prompts or invitations for such things anymore, especially when you do something cool for the first time. By the third plate, I kind of just sat there and waited for him to regulate his body. He flopped around on the chair and the bean bag for a bit and then gathered himself to take charge. His movements are jerky and not very controlled. It is amazing for me to watch him.

3 years after his diagnosis, he is going to be 6 very soon. In many ways, physically he is still as clumsy as my little girl, who is 1. His "hyperactivity" is just a guise for severe physical dysregulation.

He is not a hyper kid by nature! No one would believe me if they met him. No. Instead what I have learnt about my son over the last few years is that he is a thinker. He is creative and has an amazing imagination. He actually LIKES to sit and color, but he cannot do it, physically. He likes to sit and look at books and try to read them. He is an easy going person. I feel if I peeled off the layers of physical chaos from him, he would emerge a calm, sweet, intellectual type who likes to read and write stories. Someone who would probably enjoy creating something with his hands or solve a complex problem, more than a physical activity. I don't know. I am just guessing.

Anyway, I got lots of great referencing during the salad spinning/painting. Even while he was spinning (which is really stimmy) I got some genuine joint attention and sharing without having to do anything to coerce it. It was fun.

There was shared anticipation when we lifted the lid each time to discover what new design the spinning had created.

He wanted to touch the paint and the patterns it left on the sides of the bowl and on the plate. I got to practise more emotion sharing.

So we still try to use simple frameworks and RDI principles in our interactions, when we can.

Where are we in our RDI?

We are actually at a roadblock in our RDI. Which brings me to the email I mentioned earlier. Someone on that list is always arguing about the ABA vs RDI debate. For us thankfully it was never an either or situation. This has to do with getting the correct guidance and training from the beginning from people who have done both for years with various children. We were so lucky. Something I have learnt over the last few years is to not be cultish about any one thing.

There is no one key, one therapy or one technique that will solve all your problems, regardless of the negative or positive impact of one or the other. You have to pick and choose and maybe even change whatever you do. We chose ABA and we changed it. Our ABA doesn't even look like ABA anymore. It is natural, flexible, flowing, creative and individually suited to K's particular challenges. It is just good teaching. Thanks to great therapists.

In our RDI, we have stopped seeing our consultant for a while. We are kind of at a standstill, where we have made progress but cannot move further. RDI is great in theory and I think they have really nailed the autism deficit and what to remediate and why. However the how is still very murky and that is expected because of the nature of the disability. Every kid comes with some splinter skills, some other deficits. There is no typical autism. A lot of great RDI techniques work for us, and we now truly appreciate that "Its a marathon not a sprint" phrase, because we are now at a point where we cannot speed up to any new RDI objectives. We have to go at a steady pace for a while. We did the Education (phase 1) and when we got to phase 2, our son's obstacles, or co-morbid conditions, or whatever you want to call them did not allow us to move any further.

I have concluded, for now, that due to K's physical dysregulation we may need to just constantly work on the same RDI objectives for years before we can move on to the next phase. Perhaps as he developmentally overcomes these hurdles we will be able to move on to more RDI objectives.

Where to from here?

So that is really the summary. The cultish people will come at you from all directions. ABA is the only research proven thing, nothing else works. ABA is cruel and mindless and will ruin your child's life. Floortime cured my kid. Put him in a hyperbaric oxygen chamber. Son Rise made my kid typical and now he has a girlfriend. I have been filling my own capsules to give my child the best biomedical treatments for years. We live on chicken soup. And so on and so forth.

You know, I am going to sound like a broken record, but keep an open mind. Slow down and apply wisdom to whatever you do with your children. Unfortunately knowledge and wisdom are not directly proportional, nor does the presence of one guarantees the other. But rather the presence of both is required to make the right choices. We continue to make choices on a daily basis about how to best raise our kid. Sometimes we are wrong, and sometimes we get lucky.

I feel we have finally moved on from our hyper, panicked, post diagnosis phase and are prepared to look at the bigger picture.

New Definition of Autism - DSM-5

2012-01-19T18:15:00.000-05:00

Don't like the rise in Autism? The words "Autism Epidemic" scare you? Don't worry. These guys will change the definition for you, so that according to them “The proposed changes would put an end to the autism epidemic,”.

Read entire article here

Also from the article:

"The likelihood of being left out under the new definition depended on the original diagnosis: About a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three quarters of those with Asperger’s would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not."

Look forward to a future where it is even harder to get services and justice for vulnerable individuals on the spectrum.

If this doesn't reek of denial and injustice, I don't know what does.

Reading Progress II

2012-01-17T15:36:00.000-05:00

Reading is still going.

The online program we use has several companion books you can print off the Internet. K loves the characters and we colored in the first book we printed together. So now when I print a new book, he takes it to his room and takes out his color pencils and starts coloring them in.

Coloring is not K's strength as you can see.

Here he is reading those pages (with a plane landing sound at the end?)

He got a little agitated today because the particular pink he wanted just wasn't there. We have pink crayons, color pencils, various shades of pink markers and even wood less pink color "pencils", but I wasn't sure which pink he was upset about.

It's interesting to watch him try and search for whatever lost item he feels he must have. He rummaged through the craft shelf in his room and sat defeated in a corner with everything out in front of him, whining. When I walked in he whimpered a meek "Help". Oh the drama.

Today's lesson was teaching to blend the sounds "sh out s" to make "shouts" and that was just taking K to autopilot.

For some reason he has real trouble recalling sight words like "out". We don't practice enough. He needs a lot of maintenance work to reach mastery. I want to do some fluency exercises with him, with the words he has learnt, but not sure how to structure them. Any one got any ideas?

We need to make this thing a bit more formal, with a decent amount of practice in between lessons and some fluency.

I was trying not to take reading too seriously. My expectations put pressure on K and it comes out in his behavior or affects other completely unrelated things he does in his life. By the time you realize that something is happening because you were putting too much pressure in therapy/school or some other activity, you've already crossed the line.

Could be anything, like waking up at night, grinding teeth in sleep, extra dysregulated during the day, even on the days you are not doing anything together.

Its hard to find that balance.

Gems from Sisters Conference 2012 at Khalid Bin Walid Mosque

2012-01-16T22:26:00.000-05:00

I was really fortunate to be back at the 2nd Annual sisters conference this year. Although I am not a long time member of this community, I am in love with the Muslim Community here in Toronto. And one of my favourite events of last year was the sisters conference at Khalid bin Walid mosque. I was eager to return to it this year.

I love hanging out at Khalid bin Walid mosque so much, you would think I go there just for the community and the food. After all, the crowd is 99.9% Somali. At this conference you will not find modern Hijabis, people whose Hijab comes off after prayer is over, and at least the times I have been there, I have not seen bad Akhlaaq (Islamic Manners) from anyone, All Praise to Allah.

The young ladies at this conference are serious about their faith, learning it and following it according to the correct teachings. You will find young girls sitting in the mosque after prayer is over, reciting Quran to their friends, practising their Tajweed or memorization. You don't see that in other mosques I have been to.

And of course you get that super sweet, gingery, free Somali tea.

This was my lunch. MashaAllah! (Gluten Free if I might add.)

And they were selling this frozen mango smoothie thingie, with strawberry at the bottom and cream on top! I think you have to be Somali to have this two days in a row, because I had one on the first day of the conference, and I skipped dinner.

You can go to the mosque website here to check out future events and regular talks and lectures. Please donate your time or money to support this awesome mosque.

I learnt many lessons and would love to share some of them. However through some of the stories and sentiments shared at the conference by the speakers, I came to another personal realisation which I would like to share only for the purpose of maybe helping someone rethink their challenges and difficulties in life through another perspective.

Sometimes we can have the completely wrong picture of our own righteousness and we need some reminders that encourage us to critically analyse our relationship with God. I often get caught in a web of negativity about my journey through youth, and present life. However when I view my life through another perspective, I realize that I have never, ever been tested with difficulty. How can this be?

Consider this. No one is perfect. I have many sins over the course of my life. Many of my sins Allah chose to cover for me, due to His mercy. Yet there are people who committed the same wrong and they were exposed and humiliated for the same sins. People forgave me, thought well of me, want good for me, sought to encourage and protect me. Not because I am an excellent person, but because that is the ease that Allah has provided me with in my affairs. So the hardship of being hated, shunned and demonised, never really happened despite actions that could have easily led to that end.

I have never been tested with poverty, debt (didn't even have to take a loan out for uni), hunger, war or ill health. That really automatically implies, that all my life has been a test of ease.

However I am not too sure how I have been faring in this test, because feeling like you are going through hardship and feeling depressed and hopeless, despite having all this ease, has to be an expression of ingratitude at least. Which would mean I have not been doing well in my trials of ease at all.

During ease we need to maintain if not increase gratitude, charity, seeking forgiveness and remembrance of Allah.

Those are some things to reflect upon inshaAllah, for me, and for anyone who reads this.

Even in our difficulty with our son, we have experienced nothing but ease so far. My journey with my son is a testament of that fact.

It has been a very solemn reminder for me to stop thinking of my ease as hardship and continue to seek forgiveness.

I know I have promised many a "series" on this blog (Homeschooling Autism, Indoor playground review, and I am sure something else that has been forgotten!). I do intend to fulfil those as and when I get time.

I am going to try and do a series of short posts about gems from the "Glass Vessels" sisters conference at Khalid bin Walid Mosque 2012, Allah willing.

Boys Can Draw

2012-01-13T09:07:00.000-05:00

Here is something K made, by himself, without any prompting or ideas from anyone. He has been navigating this cute little website about animal poop.

And I guess it inspired some art.

I was told that that's "a goat poop". And I have to say that is pretty accurate. The creature is the goat and the dots are poo.

That is supposed to be "a chicken poop". The circles with dots in it are the poo. I think. The strange creature with the tail type thing is the chicken.

On an entirely different note, guess what gender and age did the bottom drawing? A kid in our mosque playgroup (of all typical kids) did this and I loved it so much I brought it home with me.

It was a 4 year old boy. Yes boys can draw. They can draw girls in hijabs and colour them in all pretty.

Bracing for 2012, Waiting for the Inevitable

2012-01-11T20:58:00.000-05:00

Often K will wake up and declare "Tina is gonna come", she is one of his therapists. It doesn't necessarily mean she is going to come, but it is his way of asking me who is coming today or confirming, because he cannot ask a question. He never says What, Why, Where, When or How. He also has trouble getting a questioning tone right. He makes a statement and waits to be corrected or reinforced with a reply. It works for him, for now and maybe one day he will start to ask questions the way people typically ask them.

This morning he declared and I corrected him so he knows who to expect. However, very soon there will come a time when no one will come. This is when our funding from the regional provider will end and we will be exited from the DFO program for Intensive Behavioral Intervention or IBI.

Legally a regional provider cannot exit you from a program without the go ahead from the psychologist who supervises the program. When we initially received news that our turn to receive government assistance to provide ABA therapy to our son had finally arrived after a two year wait, we tried to get a psychologist. However our choice was rejected for no reason other than the person in charge has been given absolute autonomy over who to reject and who to accept. When we tried to argue, we were threatened and bullied in to apologising.

Because I know the realities and my own limited resources, I gave in and accepted someone from their recommended "list" of approved psychologists. He has been a blessing in that he is honest about the politics of this exchange. In honesty he gave us an estimate of when we could expect to get exited, if not earlier than that. This has nothing to do with the child's learning, progress or lack thereof. This is the game and this is how it is played.

When the money started coming in, you see the numbers and feel a relief that finally some help is coming your way. For the two years I was waiting, I constantly reminded myself of how when the help comes it is going to be very very temporary and that I should have no hopes attached to it.

In the 6 months that have passed since this relief, I have tried very hard not to become comfortable with the idea of government funding to prepare myself for when it will inevitably end. But it is hard to stay in that frame of mind.

There is no surprise that almost every parent in Ontario with a kid on the spectrum will at some point send put them in school. Regardless of the fact that the "teaching" they receive in school does not do them any justice and after a decade of baby sitting, your adult child will be returned to you with even fewer options for his future.

It is deplorable and shouldn't be like that, but this is the reality for families in Ontario.

My five year old autistic son of course is oblivious to all this.

He doesn't know that the people who come in here every day are paid. He doesn't know about funding, or hours or benchmarks or politics. His therapists are the only people in his life, besides his mom, dad and baby sister, who mean anything to him. Who know how to communicate with him, make him feel competent, and reinforce him.

In a few months his life will change from what he has known for the last three years and the people he has grown to value will move on because his parents cannot afford to keep them.

And there is nothing we can do about it. We cannot sustain his therapy on our own anymore after we are exited because all our means were exhausted while waiting two years for our turn to receive the funds from the government.

I have to plan for something for my son for when that happens. Who will he see everyday? Who will talk to him and spend time with him besides me? He has no friends, teachers, community helpers. There is no one.

This is my thought for 2012. Just a countdown to what next.

Fallen Soldiers

2012-01-10T09:21:00.000-05:00

The Autism Enigma on David Suzuki's The Nature of Things

2012-01-09T17:43:00.000-05:00

I found this very interesting. If you haven't watched this episode yet, it is available for viewing on the CBC website.

http://www.cbc.ca/natureofthings/episode/autism-enigma.html

Click on above link.

The reason I find it of particular interest is because my son was placed on broad spectrum antibiotics from age 3 months, every single day to age 1 when he had surgery on his left kidney. It was for no other reason but as a "preventative" measure, in case he developed a UTI due to a kidney not draining properly. I would like to add that he went off antibiotics at age 1, and his kidney is the same as it was before surgery and he has NEVER developed a UTI to this day.

He did however get diagnosed with autism at age 3 due to behavioral changes and speech loss that he started to experience around age 15 months.

It is important I believe to keep an open mind and I will always consider every possibility for the sake of my son and for the pursuit of truth.

To Vaccinate or Not Vaccinate

2012-01-06T11:01:00.000-05:00

My daughter has not yet received any of her routine vaccines. This time around I wanted to make an informed decision about everything I put inside my child. Some people consider this paranoia or fear. Call it what you will, some of us will choose not to spend our lives with our heads buried in the ground.

Some people believe that vaccinations are completely unnecessary and offer protection against diseases that are already removed from the population, thus rendering vaccination simply a redundant money making enterprise by pharmaceutical companies. Anti-vaccine groups will often push this theory at you.

On the other hand, pro-vaccine groups will adamantly defend vaccinations and consider your choice not to vaccinate tantamount to neglect and irresponsible.

Children and adults die of diseases for which there exist vaccines. Many of these are not treatable, and that is why you need to protect your children from contracting these infections. We are protected because vaccines have created a herd immunity. Diseases like Pertussis, Rotavirus and Pneumococcal disease are still common despite vaccinations and I would not want my child to suffer them. The question is do vaccines actually protect you from these, if they are still common infections? Should you rely on herd immunity in light of possible reactions and controversial ingredients in the vaccines?

Information like this has been condensed in a book by (pro-vaccine) Dr Sears, called The Vaccine Book. It is easily available at public libraries. I got mine from the Toronto Public Library.

This book does NOT go in to the controversies surrounding vaccines. It has simply condensed already available information about vaccines (from pharmaceutical companies) in to an easy to read format for the layman.

The root cause of concerns still remain: The vaccine-autism connection has not been debunked. Parental observations continue to be adamantly ignored and rubbished.

Although I have not attributed my sons's autism to vaccines, no study has yet proved otherwise. I am still trying to figure out what happened to him. In the meantime, I continue to learn more about the immune system, environmental toxins and human behavior. I continue to use available techniques to help him which include ABA, RDI, dietary intervention and a healthier more informed lifestyle.

We do intend to vaccinate our daughter, but have decided to delay to learn more about what she will be receiving and to observe her natural development.

Then there is a whole other side to vaccines which often people do not consider. Which is, how controversial are their ingredients. Muslims will put toothpaste, cheese, lotions and other items under scrutiny for their halal nature, but has anyone ever considered what you are injecting in to your child?

Some ingredients found in some brands of vaccines contain monkey kidney cells, fetal cow blood, formaldehyde, DNA and protein fragments from human fetal cells and so on.

My advice to parents would be to try and educate yourself as much as possible. Do not go with a fad, or make rash emotional decisions. God has instructed man to use his intellect for matters of this world.

The Vaccine book is a good place to start for some mainstream information.

Indoor Playground Review - Toronto, Ontario

2012-01-03T18:28:00.000-05:00

I am going to do a little series of reviews of the various indoorplaygrounds we have experienced in the Toronto and Mississauga area.

Most indoor playgrounds carry the same price tag in the Greater Toronto Area(around $8) but not all are as exciting or worth the dollars you spend.

I will rate them according to the following criteria:

Play - This will be the excitement and creativity criteria. Arethe play structures exciting? Are they dull and repetitive? How creative is theset up? Is there enough space to play? Can children of various ages play at thesame time? On a scale of 1 to 5, with 1 being worst and 5 being the mostexciting.

Cleanliness - ever get the feeling you need a bath, after you'vevisited the indoor playground? Do you smell old socks and poo in certain areas?Are the toilets filthy? How often do they clean their toys? On a scale of 1 to5, with 1 being worst and 5 being the cleanest.

Staff - Are the staff hostile and inflexible, or are they fun andaccommodating? Sometimes kids are on special diets and staff will not let youbring your own food in. Sometimes if kids are loud they keep telling you off. Isstaff discriminatory in any way? Sometimes a bad experience with the peopleworking at the playground really spoils the fun. On a scale of 1 to 5, with 1being worst and 5 being the friendliest staff.

Safety - Are the structures deflating and falling apart? Are thetoilets always out of toilet paper and flush not working? Is something alwaysbroken in there? Are the balls in the ball pit squished and pointy giving youscrapes and bruises? Nothing worse than jumping in to a ball pit and landing ona pile of squished, pointy balls! Are there exits in the back which areunmanned and kids (especially autistic ones) can wander outside without beingnoticed? On a scale of 1 to 5, with 1 being worst and 5 being the safest.

Let’s get started on the very first one that we have been to a varioustimes over the past 2 years.

IKEA SMALAND - ETOBICOKE

I wasn't going to review this as it is free, but why not.

The IKEA SMALAND we have experienced is ONLY the one in Etobicoke. Thisreview does not reflect on the SMALAND's of other stores in this city.

Play: 2 out of 5. Considering it’s free, and it has a time limitof 30 minutes, I think it is OK. There is one coloring and drawing station,some toys and a small play area. Not much here to do for the autistic kid formore than 15 minutes. They also have height and age restrictions. Not for abroad range of ages or abilities.

Cleanliness: 4 out of 5. It is possibly the cleanest indoor play areayou will find.

Staff: 0 out of 5. I did not specify a zero rating, but I willinvent one, because that is how bad they are. I understand the job has a highturnover, but until summer 2011, every visit was a negative experience becauseof staff. The last time I went I complained to the customer service people. Idoubt anything came out of it. Incidentally my son’s therapists have alsocomplained about this particular store's SMALAND, when they took other autistickids there. Staff here are afraid of children with special needs.

Safety: 4 out 5. It is so safe that even you cannot go insideto get your own child. That puts some people off, but it is a bonus for thechild with autism who often cannot even tell someone their name or answer thequestion "Is this your mommy?” There are two staff watching the childrenand usually only one entrance/exit. But what use is safety when theydiscriminate against children with special needs? Special needs are considereda safety hazard at the SMALAND, judging from the attitude of staff.

That gives IKEA SMALAND ETOBICOKE a disappointing 2 out of 5. Hey, if youdidn't have a good time at the Smaland, all is still not lost; you can alwaystry the cheap, tasteless food upstairs.

Just leave the kids home and do IKEA for what they are good at - cheap household stuff, that looks great and has a increasingly short life span. I got two cute looking lamps from there just last week for just $10 on sale!!

Curious George: Boy's best friend

2011-12-31T14:30:00.001-05:00

K’s relationship with his books is a development that Iwould never have anticipated. I alwaysenvisioned a more sporty, athletic or physically stimulating outlet for him. Our children are mysterious and parents ofchildren with autism are often afraid to have expectations. I don’t dare imagineK’s future abilities. He doesn’t talk to me or share his thoughts with me.I don’t dare dream.

But the following is the scene in my house most of the day.This has become K’s number one choice of stim, pass time, whatever you maywant to call it. When he can think of nothing to do he will pull out a bunch ofbooks and stare at the picture, talk to them, repeating scripts, sometimes“reading” the letters, kissing the pictures or labelling things.

He has favourite ones, most of them are curious Georgebooks. He wants to be alone with them, and will often shut the door to his bareroom and sink in to the bean bag or lie on the floor and spend time with thepictures.

I feel as if to him the characters in his books are real. Hetreats them like real people, kissing them and talking to them. The other dayhe dropped a book behind the bed, hung upside down to retrieve it and wiped itwith his hands saying “Its OK, I going to clean you Curious George Finds a Friend”(that’s the name of the book: Curious George Finds a Friend).

He takes in more than we think, but due to his inability to express his thoughts we never really know how much. Today as he was helping me clear the table, he picked up the baby's spoon and said "It's a tadpole spoon". We have been reading a Curious George book about tadpoles. He has never seen one in real life.

I really really want him to learn how to read. I hope oneday he can read, comprehend and really enjoy the world of books and literature.So he can take his beautiful imagination on exciting journeys. A major goal or aspiration for any special needs parent is to help their child find constructive ways to spend their time as they get older.

His decoding is progressing very very slowly. The problemwith any kid with severely limited verbal abilities is that they will soonstart decoding words they don’t comprehend. So many words are not in K’svocabulary, because he has such a limited vocabulary. A typical child’sreceptive and expressive vocabulary is way beyond their ability to read anddecode, so you have already laid a groundwork for language and communicationbefore you start tackling the written word.

It will take K a long time and I am not sure what hisreading comprehension abilities or limitations will be.

Watching him, baby poi has developed a strange obsessionwith books, flipping through books and wanting to be read to, almost constantly.She will stalk people, holding a book, repeating “booka booka” trying to gettheir attention. If you look at her, she takes that as affirmation and willseat herself wherever she is and expect you to follow her lead and startreading to her.

Amaranth Flour Pancakes

2011-12-30T11:00:00.000-05:00

An early morning request for pancakes and realisation that we had no brown rice flour left, led to some experimentation in the kitchen. Which, as you can probably guess, was successful. (Otherwise why would I post my kitchen failures?)

Ingredients

1/2 cup Amaranth Flour
1/2 cup Tapioca Flour
4 table spoons Arrowroot Starch
1/2 tsp baking powder
3 table spoons ground almonds (or almond meal)
1 tsp honey
1 table spoon melted butter (or clarified ghee)

1 Banana mashed
1 egg
almond milk (or water)

Use non-stick pan and low-medium heat.

These were MUCH better than the rice flour version. Fluffier, tastier and definitely healthier.

The milk, I did not measure, just go by consistency (not so runny and not lumps).

Enjoy with whatever syrup (we have Organic Agave Nectar) and gluten free margarine. YUMM.

Being gluten free, we often find ourselves feasting on rice. I am going to be making Amaranth Pancakes from now on.

These passed the test with our brutal food critic. Some bits were willingly placed inside mouth and ingested, instead of being regurgitated or thrown down the high chair with cruel nonchalance.

Aftermath of a Meltdown

2011-12-27T20:20:00.000-05:00

Often,despite doing all the right things a meltdown is a physically and mentallydraining experience for person with autism and their caregiver. K usually has ameltdown to the point of exhaustion or until whatever it was that wasoverwhelming him or making him anxious has abated by itself.

Sometimesyour behaviour is not the antecedent to the meltdown. The meltdown is aboutsomething that is not under your control and you cannot control the emotionalstate of the child. The only option then is to wait for it to be over. In themidst of the storm all you can do is try to keep everyone safe, and make sureyou are not reinforcing anything negative and not overreacting. This might notmake any difference in the short term but at least you will not make thingsworse. All the while you are fighting feelings of embarrassment, failure, helplessness and so on.

Preventionis the best cure, but not every scenario can be anticipated and you cannot makeevery single environment bend and contort to suit the specific needs of yourautistic person.

A few yearsof meltdowns and screaming fits have trained me to become relaxed, analyticaland easy going about tantrums, while they are happening, but at the end of itall I still find myself exhausted. There is effort required to be relaxed,analytical and easy going, although does not seem like effort while you are inthe moment, I will notice its toll later when things are calm.

Giveyourself time to recover.

Sometimes itcan take several hours to a couple of days.

A feeling ofresentment towards your kid is a naturalhuman emotion. I am not a saint (yet). And although he has gone back to “normal”being his usual self, I feel no inclination to be near him or have anything todo with him outside of necessity after he has screamed himself purple for hoursthrowing things around and banging doors.

I feelstrongly, that as a parent you are definitely not allowed to pity your child.And it will take me some time for me to forgive him despite knowing that hisbehaviour is often not under his control.

Unlike a lot of kids on the spectrum his age, K is aware of someone's upset with him. He tries to repair after he has regained his composure. He will follow me around the house saying "Look at my face. You want kiss". Or something of that nature.

I used tofeel guilty about these emotions, but now I recognise this as a part of myrecovery process.

As long as thereis recovery, repair and you are ready to face another battle for the sake ofyour child and his/her learning, then why should there be any shame in beingtruthful about the difficulty you are facing?

There is noneed to deny the existence of your frustration and paint a false fairy talepicture of harmony and joy for the world. Whining and complaining is wrong, butbeing honest is not.

Autism is difficult to live with. I wish my son was easierto live with. There is no shame in that.

Why Homeschool? Some Lessons From The Muslim Homeschooling Conference 2012

2011-12-23T12:34:00.000-05:00

Sometimes energy levels are low, kids are sick for weeks,and you are feeling like all your great ideas and awesome plans are too Utopianto ever become reality. It helps then to actively search for some kind ofinspiration somewhere.

A few weeks ago I attended the Toronto Muslim homeschoolersconference. The Muslim homeschooling community is young and small right now butone that is active and really ambitious. Many inspiring ideas were shared atthe conference.

I would recommend any education related talks by ahomeschooling father and teacher by the name of Michael Reist. He has a website here.

Another topic which seemed to be one of great significanceto most families was "Why we homeschool".

My reasons for homeschooling were morelack of choices for special needs education and my lack of financial resourcesto send K to a private direct instruction school. However it wasinteresting to see that many families, with no learning disabilities or otherapparent barriers (financial or otherwise) were still debating the subject. Inever considered homeschooling from a typical parent’s point of view.

Everyone’sjourney is different. People find challenges in their particular situations,that seem easy breezy to us raising kids with special needs. It doesn’t meanhowever that their struggles are any less challenging to them, as ours are tous. It is all a matter of perspective.

In the homeschooler's meeting following the conference, thiswas the topic up for discussion. I was encouraged to hear about the challengesof other families (none of whom have special needs children, we are the onlyones in this community homeschoolingthat I know of yet). At times it made me feel very fortunate that I have a realgrasp on what is really important, as a result of the challenges anddifficulties I face in teaching my son. A lot of people are not in touch withthat kind of reality and that kind of “biggerpicture” attitude. I was grateful how having an older child with autism hasmade me so easy going, perceptive and sensitive to the needs of my secondchild. There were also times when Irealised there are some challenges we will never face with K, that some ofthese parents are currently facing in raising and teaching their typicalchildren.

Most of the time the environment, people’s experiences andtheir children are a constant reminder of our disability, the things we willnever get to do, and joys we will never experience with our son. So it was kindof refreshing to feel that in some aspects we are in fact ahead of the game.

The sisters discussed many wonderful reasons why theyhomeschool and I am going to list a few here.

Preserving thechildren’s Fitrah and providing an Islamic education

This was of course the number one reason for everyone in thegroup. As Muslims we believe that all human beings, are created with an innatenature or Fitrah. It is an encoding within human nature that makes them capableof knowing God, believing in a divinepower and accepting religion.

This is mentioned in the Quran in various places. It is afact supported by studies of human behaviour and psychology. It is not a new oralien concept. What you do with this innate nature is another story. Allah saysin the Quran:

[And mention when your Lord took from the children of Adam-from their loins- their descendants and made them testify of themselves,[saying unto them]: Am I not your Lord? They said: Yes, we have testified. Thislest you should say on the Day of Resurrection, Indeed were of this unaware]Quran 7:172

So pretty much the fact that humans know there is a God isthat it is within our very own souls and denying it is denying human nature.That is what Muslims believe.

Many parents (not just Muslim) are concerned about the lack of God in schools. It is also ourIslamic duty to nurture this Fitrah or nature, and to protect our familiesfrom the punishment of the Fire, which is also a command of God. So manybelieve that protecting their children’s nature to believe in God is theirdivine duty.

Questioning the existence of God, Denying it, considering that itis OK not to believe in God, and other ideas are a threat to this and corruptthe true purpose of mankind's existence, which is to believe and thereforeworship and obey God. Secular public schools have no room for this kind ofattitude in their curriculum. Rather they foster an atmosphere of tolerance to any and all beliefs. Concern and respect for all humans is essential, but clear distinctions between right and wrong and the obligation to convey this message to others is also an Islamic duty.

The condition of Islamic schools

Many parents were not happy with the way Islamic schools arerun and the values they are teaching. There were sisters who mentionedthat they had withdrawn their childrenfrom Islamic schools due to the teachers’ ignorance about Islamic ways ofteaching, disciplining and Islamic manner.

A vital point that one mom made during this discussion wasthat when homeschooling, the parent educator needs to constantly evaluate hisor her own behaviour for negative habits that they may be passing on tochildren. You may be protecting your children from the negative in schools andIslamic schools, but to pay attention to protecting children also from wrong culturalpractises mistaken for true Islamic teaching and your own failings as a humanbeing. I thought this was an excellent point. Just because you are a parentdoes not mean you are perfect. If you have taken the responsibility to educatethis child, then ask if you have really received an education in Islamyourself?

Bullying and anxiety

This was also a common thread. Many families had withdrawntheir children from schools and had not sent the younger siblings to school at all, because ofthe bad experiences of their older children. The bullying and pressure to conformhad taken its toll on some children’s physical and mental health.

Effective use of time, preserving individuality and teaching social conduct rather than "socialisation" (aka being like everyone else)

This was also an excellent reason many stated forhomeschooling. As children we were once curious and individuals. Over the yearswe were schooled out of this important human trait. The one method foreveryone, one curriculum for everyone and one time for everyone to learn systemhas put many people off institutionalised schooling.

The prison model of “time served” in each grade/credit wasalso mentioned. Homeschooled children are learning faster, making better use oftime and resources in the community, have better social opportunities and soon. Instead of being lumped together with everyone of the same age in a coupmentality similar to that of a prison, the homeschooled kids learn to socialise with peersand also with people of various ages. They are self motivated learners notdriven by envy, competition with others, but are taught to compete with theirpersonal bests.

You can find various articles and books on this subject, Idon’t want to go in to this in too much detail or the post will never end.

Attachment parenting and the guide apprentice relationship

This was my favourite. Homeschooling for many is a revivalof the parent’s role as a the main guide in a child’s life. You are not a pickand drop service, the enemy, the dummywho doesn’t understand your kid and so on. It is a means of empowermentfor the parent and a way to re-establish this ancient, God given responsibilityto prepare a child for adulthood.

Many moms also talked about how they lovedhaving their children at home. They stressed the importance of always being ina dialogue with their kids about what they wanted from their education andgiving them the choice of school. Homeschooling mothers of older children saidhow their kids do not want to go to schools and when they had been sent forpersonal reasons ( new baby, travelling etc) they had begged to come back.

Older children who chose to attend high school for ease ofcollege entry, after being homeschooled all their lives, are grateful to theirparents for not sending them to school and recognise their education as a realprivilege when they were around their high school peers.

So these were some reasons the mothers in the Muslimcommunity are homeschooling. There is a Christian homeschooling conferencecoming up that I intend to attend. The Christian homeschoolers are decades oldhere and I would love to benefit from their experience and knowledge.I will post about that conference later inshaAllah.

For more information on the Toronto Muslim Homeschoolers click on this link.

Declutter - How To Be Special On An Average Income

2011-12-21T10:51:00.000-05:00

Once upon a time we used to live in a two bedroom apartment. (A year ago actually). There were two bedrooms but we all lived in one. The second bedroom was K's therapy/school room. The only storage area was crammed with games and toys and other items required to run a home ABA program.
However with a new baby, I felt it would be very difficult for four people, one of them with autism and the other a new born, to live in one room. So we moved upstairs to a larger, 3 bed apartment.

This obviously increases our living costs. Try doing a 3 bed in the city of Toronto. I think we live in the only building in the city that gives you the best value for your money.

K and his baby sister share one room (most of the night! People migrate in this house in the middle of the night to various locations). My husband and I got one room to ourselves at last.

And this is the third (master, although same size as the others) room. It is the therapy and homeschool room. It is K's space in this house that is exclusively for him.

We are fortunate that we have been able to provide a space for him that is a room on its own. But sacrifices have been made and will continue to be made to achieve this. There is a third baby arriving in April. (What? Did she really say that? More on that later, lets focus on "decluttering" for now). So four people will be living out of two rooms and two small closets.

We also have an L shaped living room. This is one arm of the L.

It is also a space for people to read, and for me to work. We have no television. Kids watch and do stuff on this computer.

That is the other arm of the L-shaped living room. That's it.

That is my living room. There are no tables or anything. If we get more than four people coming over, well they just have to make use of the floor. That dining table that you can barely see in the corner, I am thinking of getting rid of it for a smaller one. So more space can be created if the need arises.

The storage again is filled with K's materials. I do not hoard. I have no pictures, decorative ornaments, vases, plants or pets. My husband and I share a tiny closet, so do the kids.

If you have a house with children, large sofas and coffee tables, huge entertainment centre, TV blaring, designer dining area, decorative ornaments, loads of furniture in the rooms and so on, then chances are you are NOT decluttered.

Why declutter?

For Homeschooling

Decluttering is important for homeschooling. The children need a designated space for themselves and easy access to their own materials. These need to be organized in bins and shelves not piled up in a box on top of one another. Children also need to be taught to clean up after themselves and for that there needs to be a place where everything goes.

When you add a special kid in the mix who will experience sensory overload at the mere sound of footsteps walking in his direction, then it becomes even more essential to do your best to provide a decluttered and simple environment.

Organisation has been key in teaching K independence too. Last year when we would sort our laundry together as an RDI activity, in the end he would only be able to put his underpants away in their respective area in his closet. He would often put shoes in the sink, dishes in the garbage and so on, when asked to put stuff away. I would have to follow him at a distance and if he was going to make a mistake then I would physically step in and point or guide his reference to the correct area and he would either get it or need further prompts to the place where he needed to place the item.

All this practise has finally paid off. Now K's receptive understanding of where dishes go, where socks go, where underpants go and where shoes go and so on. These are great frameworks for teaching problems solving. For eg, what happens if the sink is full of dirty dishes (happens a lot around here)? Then dishes need to be put in other empty spaces. On a good day he can figure this out, placing them on the counter and even the hob. Many many dishes have broken in this process of learning. I shop for my dishes from dollar stores or used stores like goodwill.

Inclusion has to start in the home.

The moral of this post is that when one person in the house has special needs, everyone has to work together to incorporate their needs in their home, their sanctuary. This does not mean you prefer them over your other children, but they are special due to their inability to function in certain situations. So those who are able need to adapt and make the compromises. They also need to be taught how to interact and behave around their special family member, to the best of their ability. That is inclusion. Inclusion is not that you throw a person in a situation they cannot handle and then tolerate them or have pity on them. Which seems to be the case in almost every environment we go to, whether its someone's house or in the community.

(Hopefully we can teach our daughter how to be the best sibling for K and in the process teach K to do his best in return.)

Inclusion is to pay special attention to the needs of the special needs individual and then design the environment or interaction around that so it is mutually beneficial.

Declutter your space. You don't have to have a house, backyard and beautifully finished basement to do it. We are a single income family. There are many expenses, but the rewards of a peaceful home, an organised space and a happy child are priceless. Mind you, it is not always clean or tidy, but always a work in progress.

I dont have so much room, what do I do?

I find you can still create space to have some sort of designated area however small for your child to work and de-stress.

Noise can be reduced by eliminating TV altogether or at least when the family is sitting together. Its hard enough to hang around "people" than to add TV and other noise to that environment. We do not watch things together as a family. If K watches a short show or something on the computer, it is for a few minutes by himself. If I want to watch a lecture or use the computer for something it is on my own time.

Get smaller, compact furniture. Don't get more than what you absolutely need. This place is your home, not a place for other people to come and hang out and go wow. If you have limited space, cater it more to your needs than the need to entertain others.

Use space effectively. I use a lot of under-bed storage. Don't store things for years thinking you will use them. Except for a few toys, I have nothing from a few years ago.

I will try to do a follow up post on how to shop and be special on an average income. InshaAllah (If Allah wills).

Story of a man and his kelp

2011-12-19T15:59:00.000-05:00

I have been slowly trying to purchase more organic groceries over the past year. We started eating organic meat over a year ago, starting only with K first. It is expensive and we never thought we would be able to afford it ourselves. However as we tried to eat healthier over time, we found that our grocery budget was able to accommodate healthier and organic foods more.

This is mainly because we eliminated the other junk and eating out from our diet. As we become more conscious of our grocery bill and consumption we also wasted less.

Now almost 2 years in to a diet and lifestyle change we eat only organic meat at home. Our produce is organic too. Our diet is slowly changing as we try to do less grains. K can't resist gluten and we just cannot eat breads in front of him, so we slowly just stopped eating them!

Recently I watched this video of a doctor who cured her Multiple Sclerosis using a diet composed of mostly raw foods.

We are biryani eating people of South East Asia. We cook all our vegetables. To us salads are cucumbers and tomatoes, and sometimes spinach. I have been trying Kale for a few months but just crush raw Kale in smoothies. I know you shouldn't cook leafy greens and I cannot bring myself to eat the tough leaves raw.

So a raw food diet is like alien world for us.

But we also have health issues, like autism and ataxia in our home. Watching that video was very inspirational and my husband (who does not always like our organic food bill) went out and bought some sea weed of all things.

I have no idea what to do with Kelp. We tried cooking it, it was so chewy and salty. We tried frying it and it became salty chips. Fascinating. I read you can make broth out of it.

Anyway, he decided to create this concoction of power foods. My husband cannot cook to save his life. When he makes something it is usually everything mixed together and ground in to powder form ready to just drink in a glass of water!

So he ground boiled chicken, raw beets, raw kale, raw carrots, cooked sea weed and some other stuff (I think onions?) in to this power powder :D

It actually wasn't bad. I mixed it in my pasta with some olive oil and mayo. Quite yummy I must say. K at some in his rice pasta. We made sandwich spread out of it.

Here are some photos of my husband doing his thing. For someone who is utterly useless in the kitchen, I think he did great!

Well done Kelp Man.

Autism: It must be something else

2011-12-16T22:33:00.000-05:00

So many times in the early days of post diagnosis I would read stories online or on message boards of people whose children with autism were suffering serious medical problems. People would endlessly discuss seizures, severe gastrointestinal problems, medical neglect and other horrific issues that often accompany this disorder.

Despite our son's intellectual disability and his mysterious behavioural and physical dysregulation issues for which we have no answer medical or otherwise, we would still consider ourselves one of the lucky ones. Because in my 3 short years on this road I have, by now not just read about the horror stories on message boards but met them, spoken to them in person and witnessed their frustration.

Kids who will have strange episodes where they fall from standing, go in to complete brain death for a few minutes, their bodies becoming like dough, recovering shaky and confused. Neurologists shrugging their shoulders, not able to diagnose these as seizures because EEG's were "normal".

I know two such children. Both of them have very different circumstances and are very different in their functioning, and the medical community will not acknowledge their illness as directly related to their autism.

I thank God every time I talk to their parents that we don't have this in our house.

I also live in a kind of fear, for my little girl.

Because along with these stories are also stories of children who were developing typically until age 18 months, or 2, or 3 (it varies from story to story) and then one day a throat infection developed, the child went into a coma and their mental health deteriorated from that day onwards. Or the child had a vaccine, got seriously ill a few weeks later and regressed to an autism diagnosis. In all cases, parents distraught, confused and baffled. Many of these families dealing with a strange sense of loss for years (strange because they haven't really lost a child, but in fact they have, because a once healthy, speaking, interacting, happy child transformed in to someone else).

Its one thing to read articles and emails and another thing to actually speak to a family describe their child's before and after. I wonder did that child really do all that their mom is saying when they were younger? Its hard to imagine when you see them now at 7 or 13 or 10, unable to speak or engage in any interaction.

It keeps me up at night, and I have irrational thoughts of never leaving my house to protect my daughter.

I no longer debate with myself if K's physical dysregulation and learning disability is a result of underlying medical issues he may have, that mainstream medicine has yet to identify and relate to his disorder. I have already accepted that conclusion and I would rather spend my time trying safe, easily available solutions, that my family can financially afford.

But the fact remains that the large numbers of children seriously suffering every day of their lives, being medically neglected and their medical issues not acknowledged as linked to their autistic disorder are a testament to the chronic misrepresentation of autism spectrum disorders.

I believe in an after life and I am generally very optimistic about the plan of God. I wonder however what drives people to vociferously defend autism as something to celebrate and preserve.I celebrate God's love for me that He chose to guide me through whichever means He thought best. I celebrate the progress of my son and his beauty. I celebrate human beings who are able to find beautiful expression DESPITE their autism. I celebrate being alive and able to be a mother and have a family. But I denounce delusion and denial. Most of all I reject oppression, injustice and neglect.

When will this attitude change? When will autism spectrum disorders be considered a serious medical illness that deserves money being spent on researching cures to the various symptoms so many autistic individuals suffer from?

This attitude of "autism is not a medical problem but must be something else" (such as statistical anomaly, a different point of view, personality disorder, natural selection, consequence of nerds mating, purely genetic and other ridiculous nonsense) has to change to do justice to the really vulnerable individuals and their families.

Reading Progress

2011-12-10T16:42:00.001-05:00

I am hesitant to post this for a number of reasons.

Firstly, I am not sure what I am doing. Secondly, I don't know where all this is going. Thirdly, although we do a lot of activities together, this just never turned out to be one of those "homeschooling" blogs where moms will post every detail of the teaching they do with templates and links. I mean its great they do that, because thank God there are great ideas out there for us to get inspired, but it just takes too much work.

But we are doing something we never did before. It may not lead anywhere, but so far we are enjoying ourselves. We do claim on our header that this blog is about homeschooling so I will post some homeschooley type things once in a while. Who knows it may help someone out there or inspire them.

Those of you who have been following this blog from the start, will know that many old posts have gone missing, and the video links are broken. Since I started hijaab I have deleted hijab-less videos of myself. I video tape a lot still but can't be bothered to dress up for them just so I can post them online. In this video I sat down to work with K right after I finished praying so I decided to keep my prayer outfit on and it worked. Alhamdulillah.

Also loyal readers over the years, who might remember some of my older videos (although they have been removed) might like how things have changed around here. Things get better, and I guess if you keep working at it, the relationship does eventually become less of a fight. Sometimes. Video tape your journey, for yourself, it can become your biggest inspiration.

So we are doing this online reading program called Headsprout Early Reading. K learned to use the mouse only a few months ago, but he is slowly mastering the use of the computer. He also knew all his letter sounds before we started. I am not sure what will happen when we get to words with silent letters and vowels. We may have to stop in the middle and continue when he is developmentally and receptively ready to take that kind of instruction. Who knows. AllahuAlam as they say (Allah knows best).

So here is the story so far.

K can join some letter sounds and is learning blending. Who would have thought eh? Alhamdulillah.

We have to do a lesson a few times to move on. You have to be mindful to sound out big words like "feels". He is finding it really hard to do that. Mostly its automatic behavior and relying on rote learning that gets in the way of K's processing. He knows how to join sounds, he knows the sounds, but to stop, sound out, join and then comprehend it as a word he recognizes, like feels, that is just too hard for him. But we are going to keep going until it fails.

He is a very rule based kid, duh. He has autism. But reading and comprehension has a lot of exceptions to the rule and we will deal with them as we encounter them.

He is also very mindless and resorts to mindlessly giving answers (without listening to the question or spending any time thinking about an answer). Teaching mindfulness is a work in progress. It is very much a developmental thing in this house and a case of tireless practice. But he has shown us, slowly that he can slow his body down enough to think, even if for a second and he has shown us in various ways how capable he is MashaAllah.

So here is a book of "sounds" we made together.

They are sounds he already learned from the online program and I wanted him to find them in words. So I gave him sticker letters and asked him to stick the sound on the paper. For the two letter sounds I gave him only those two letters and he "spelt" them correctly. Next time I will try to get him to pick from a bunch of letters and see if he can spell the sound correctly. For instance give him f, r, a, n and ask him to spell the sound fr and see if he can do it.

The pictures were placed on the table, three at a time. I sounded out each word in the picture and asked him to pick the picture with the sound he just spelt on the paper. He got all of those right without having to think about them too long.

InshaAllah as we progress we will try to do this without visuals i.e. listening to words and picking out sounds that he has learned.

We practiced some blending with magnetic letters.

He sat through it all because I promised him that we would do headsprout reading on the computer after we finished. But you can see he is engaged and enjoys the activity regardless of the prize in the end. And really thats all that matters to me at this point. That we enjoy doing stuff together and gets lots of smiles.

Here is the video:

You can see when I ask him the simple sound of ee, he says "ull eeeee" because he learned to sound the word "lee" and did not even bother to think that there was no l there. That is the mindlessness I am talking about.

Also whenever we work with K, we do high probability teaching. I am not doing any ABA in this video. But I scaffold things for him and give him the answer and then test him again to see if he was paying attention and remembers. This is the only way to teach him because he is motivated to stay in activities in which he feels competent. He repels failure and the smallest breakdown or challenge takes him to the dark side of uncertainty and then the behaviors start. So we try to make sure he is successful most of the time. It takes a lot of scaffolding to do that. I also have to make sure I do things quickly and move to the next thing quickly.

I also don't bother to think too much about my instruction and making sure I always ask the right way. I have to fix that, but he deals with that pretty well. At one point I point to "fran" and instead of saying "sound out that word" or "read that word", I say something like "whats that sound", which doesn't even make sense! But he is OK with it Alhamdulillah, he knows what I mean.

You know what I love about this video the most and what shows that he is actually thinking when he joins the sounds? The fact that he moves the letters both ways - to the left and to the right to complete the words. This isn't rote. And who cares if he isn't perfect. For me his natural and flexible behavior and level of comfort is the real prize.

Science of Tantrums

2011-12-06T20:36:00.000-05:00

I usually do not post video or audio links that are not my own because I figure they eventually make their way around to the relevant people through facebook or mailing lists, so why post them on my blog?

But this one was really interesting. Particularly because our number one behavior issue is unnecessary screaming and whining.

Find out about the science of tantrums here.

A couple of years ago there was the towel tantrum, then the bath tantrum, and so many others I cannot remember (the really ridiculous ones sort of stick in my mind). One weird one these days (which is thankfully on its way to extinction) is the bandage tantrum.

K will out of the blue start screaming for a bandaid. Initially I would ask him if he got hurt, and he would point to some ridiculous part of his body, like his teeth, or a finger nail or his hair. Later as they unfolded more frequently (possibly because he was being reinforced due to my genuine concern) I noticed they were unfounded and there was actually no hurt. Or he would walk, and then do a pretend fall and go in to screaming that he got hurt, requesting a bandaid. Obviously catching on to his drama, we started to put him on extinction. He followed us around the house getting more and more upset. He would work himself to the point of no return which is full volume screaming, red eyes, red face, tears and all that, and sometimes falling asleep for a few minutes from exhaution at any given time of day.

He gave up on me eventually, but would look for dad if he was home. Giving way to explanations, questions or reprimanding, would just prolong things. Eventually as dad tried to be more patient a few times, we successfully bored K out of his OCD bandage request. (He tried to change it in to asking for stickers, to use them as bandages, sticking them all over himself, but I knew what he was up to so I did not let that escalate). Now if he is found sticking stickers on himself, no one pays any attention and just moves on. Eventually he will satiate and move on too.

Its an old pattern and we have learned to recognize them and deal with them.

This has gone on for 3 weeks, several times a day.

Needless to say, K has been sleeping well at night, because a few (2-3) of these tantrums a day (often lasting 20-40 minutes) and its exhausting for a 5 year old kid. If you ever really worked yourself up, or had a complete emotional breakdown or panic attack, just one, remember how it exhausted you for days?

Anyway, that's life and we live it Alhamdulillah (All praise is for Allah). I am grateful for the patience and self discipline Allah gives us in these moments and we are able to (most of the time) be consistent and not give in to anger, frustration, depression or any of that stuff. If we ever do give in, the nature of the beast is that you get lots more practice :D

Here is a picture from someone with a great sense of humor obviously

Being Me - Muslim Women's Conference

2011-12-03T06:42:00.000-05:00

Another exciting event coming to Toronto.

I will be there inshaAllah, will you?

For more information go to Being Me.

First Snow and Winter Observations

2011-11-30T15:20:00.000-05:00

I know. Two outdoors-ey posts in succession. But what is one to do, when there is so much weather? K loves weather. His first few words were commenting on the weather. "Its cold", "its windy", "its sunny" and so on.

We are so fortunate to see the same scenery transforming through the seasons and K always shows us in his own way, that he notices all the changes too.

We had our first snow fall today. K wound his scarf round his neck early morning and had been wanting to get out. The snow didn't stay, but was still there when we were out.

I was glad K remembered a lot of his winter vocabulary like "its slippery", "footsteps" when he saw boot marks and "its ice" for the snow in the boot marks was a more icy color than the snow around it.

When I put some snow on his hand he declared "its in the water snow", which was a good observation because the snow quickly turned to water on his hand. He also stood still in a field for the longest time making different sounds to watch his breath!

Here is a video of him doing that. I am against feeding him words or asking him questions, but I get just as excited when I see snow or see him notice and take interest in his environment, so its hard to shut up.

There were many other things to notice, such as the water in our creek suddenly over flowing and muddy, when just a few weeks ago we were down there walking in the creek and throwing rocks around.

The kind of learning that happens in these situations cannot be taught with flash cards, at a table or even reading in a book. I find it hard to figure out how else to teach a child with autism and intellectual disability about concepts like "balancing" until I put him in a tree or on a balance beam. How else do we teach K that snow is actually water, that the stuff coming out of your mouth and nose is breath, what slippery means and feels like?

I find that he needs quiet around him and for someone to just let him experience things and then put words or a concept around that experience in order to learn. Later we can build on that concept developmentally in books, stories and hopefully one day conversation, reading and science as he matures.

Can we really accomplish that in a class room setting or in a group? Not with K's autistic deficits. He may enjoy the stimulation of lots of kids and people driving him in to a state of frenzied physical dysregulation to the point that it takes him days to return to "normal" calm and focus. But he cannot learn in such an environment like his typical peers.

Snow will make even dead bits of wood and leaves look pretty.

Climbing Trees

2011-11-29T11:40:00.000-05:00

Blog readers probably have seen our love of nature, especially perching ourselves on trees, expressed in various posts over the years.

K was whining a lot in the park yesterday about it being cold, and kept asking to go to the beach. Although it was 9 degrees Celsius yesterday, I figured that's still warmer than -9 degrees Celsius, but still not warm enough to go to the beach! How to explain weather, freezing cold water and all that to an autistic five year old with limited verbal ability?

When I had enough of his whining, I found a tree and put him in it. Because that is what a fed up parent does sometimes.

He likes climbing trees, but he was scared of this one and he was therefore informed that unless he stopped his whining, he was not going to be brought down.

It stopped the whining, but once he was down, he kept asking to go back up!

So we found easier trees for me to perch him in.

Here he is in his third tree and you can see the mix of fear and slowly building confidence. I love catching moments like this on video so I can watch them over and over again, and we can watch and "comment" together. That is one cool episodic memory we built there. I am very pleased.

Oh the little script about hand dryers in the end. K has always had a fear/love relationship with hand dryers. These days all public places are replacing slower hand dryers with those super fast ones that dry your hands in less than a second or something and he is absolutely terrified of those. However sometimes he musters to courage to do it. Scripting "You did the hand dryer" is I suppose his way of congratulating himself for conquering the tree. (Who would know that but a parent?! Another case for never sending your kid to school.)

He was all smiles from here on and even attempted one all on his own. I like how he chose one he could get in and out by himself.

We found a squirrel trying to copy us.

We also found this baby.

She wouldn't stop following us.

But we later discovered she was just after our pancakes. So we decided to keep her.

As for the beach, not only am I a supporter of experiential learning, it is often my only teaching option. So next week I might just take him to the freezing beach and that should hopefully stop him asking me to go there for the rest of this winter.

The Future of Food

2011-11-28T17:30:00.000-05:00

I saw this documentary on this website: The Future of Food

I urge anyone who cares about their food and what goes in to their bodies to watch this video.

We believe that eating and drinking, as Muslims, is a command from God Almighty. Shouldn't Muslims think about how they are fulfilling this command? Is our intention to fulfil this command only driven by our stomachs, palates and our desires?

This documentary infuriates me and makes me feel helpless.

Eating organic whole foods is one way to fulfil your need to eat and do it with what I consider Ihsaan (roughly translated as the best manner, or a beautiful manner).

I have already lost a son to an intellectual disability. The prophet Mohammed peace and blessings be upon him said in a hadeeth that the stomach is the home of all diseases and prevention is the best cure.

Allah knows best.

Gluten Free Halaal Deli?

2011-11-24T12:13:00.001-05:00

Yes you better believe it. Zabiha, Halaal and Gluten Free (and in pretty zip lock bags).

Thank God for living in Ontario, Canada. Actually even Ontario is going too far. More like the Greater Toronto Area. I doubt anywhere in the Western world would we have as many options for Halaal food. I know because I have lived so many places.

Thank you Muslim community of Canada. You are well informed, educated, peaceful, vibrant and so diverse. I am so grateful to be here.

We also boast an excellent homeschooling group, that is well connected and super well organized. Go their annual conference this weekend and discover Muslims doing amazing things MashaAllah.

Qawlan Sadida and Email

2011-11-22T08:25:00.001-05:00

People with a "qawlan sadida" problem should stop using email. Seriously.

"Qawlan Sadida" or قَوْلاً سَدِيداً is a term used in the Quran to describe a type of speech. It literally means, to say that which hits the mark. So speech that is to the point, straight forward, fair and clear without any hidden meanings or insinuations.

My terseness, which in person is usually softened by other components of speech and body language, just doesn't work in emails.

I need to start using emoticons or perhaps lots of those little abbreviations like lol and @TEOFD and ^5 and <3 and so on.

Proper punctuation and breaking things in to paragraphs also gives too much of a formal, "thought out" look to an email. Might give the impression that I am too serious and might be easily offended. I need to switch to lots of trailing ................ ....... errrm's .... maybe a few !!!!! lol ^5^5 (thats a high five by the way) and ,,,,,,,,,,,,,,. a few capital letter errors. Just.....makes it less....terse....don't you think???

Who am I kidding? I will die before I send out an email like that.

Come to the Toronto Muslim Homeschoolers Conference

2011-11-20T10:10:00.001-05:00

Very excited about this event.

To buy tickets go to Toronto Muslim Homeschoolers .

Setting up Your Home Based ABA Program From Scratch

2011-11-17T21:33:00.000-05:00

After my long whine about running a home program, I thought it might actually have been better if I had posted about how to start one and other helpful tips for parents new to all this.

Mind you, we are also new, because we have only been doing this for almost three years now. There are parents who are now in their 5th or even 9th year of home based ABA programs.

There is a great website that does a much better job of this, you can skip this post entirely and go there. I am going to however post my personal experience.

A self-funded program (i.e. one without government assistance).

Find a Senior Therapist.

This is the backbone of your program. They should be Board Certified. BCaBA (or Board Certified Assistant Behavior Analyst) is one level below a fully certified BCBA. The difference is just in the hours of supervision they received. Honestly it doesn't matter that much in my opinion. You can find out more about this certification here.

There are many many bad Senior Therapists circulating in the GTA. I have seen some horror stories, and horrible programs. How will you be able to find the right person?

References are not enough. Anyone can get a good reference. When checking up on a Senior Therapist go through some of their existing client's programs. See a session in progress. Invite them over and watch them interacting with your child. Demand these things. At a rate of $80 per hour (and rising in this market) its the least they can do.

ABA has moved on since the Lovaas days. Find out how many verbal behavior programs your therapist has done. Has she attended any workshops? Who supervised and trained her?

It is easy to make a fake resume. For that much money, people are doing it, and they are ruining the lives of children.

Word of mouth is the best way to find a good Sr Therapist. Advertise on the various yahoo groups like AutismOntario or abatherapyontario. ( go to groups.yahoo.com and enter these group names in the search field). You can also go through the Abacus List website and call the ones who have written down supervisor next to their name.

I stayed away from centers because to me it was a black hole. Once I drop my kid at the door I don't know what is going on in there.

I have had therapists working for me who have told me that centres they worked for would make them work with groups of kids and lie to parents that the child got 1 to 1 therapy.

I know a few senior therapists and some centres that everyone in the GTA should run far away from. Email me, and if I trust you, I will tell you who they are :D

Finding other staff (i.e. instructor therapists)

In a home program turnover can be high. Be prepared for disappointments, liars and strange people selling you their wares. Since I never hired anyone in my life, I think all this was weirder for me.

I have had people come to see me, show me some hand drawn colored graph of how the kids they worked with progressed.

Use your instincts.

The same job boards work for finding therapists. Network, speak to other parents. I also posted a lot of adverts on university job boards in the hopes of finding students/alumni.

York, Ryerson and UofT have free job boards you can post on. I am sure there are others like George Brown, who are churning out therapists like they were running a factory. Try them. I never got anyone off these, but I have heard of other parents having success in that area. Its free and worth trying. You can even call the student career office and ask if they can circulate your posting to the newly graduated students or print and post it somewhere. The Ryerson lady did this for me.

Most Senior therapists have a network of Instructor therapists they are used to working with in other homes with other clients. If you are lucky enough to fit in to their schedule that is the best option as you will be spending less money training them.

Attitude and work experience

Although this involves hiring, references, paychecks and watching for cheats, this is not a business. This is a human job, working with a very vulnerable person, with stressed out families with often limited resources. Look for the right attitude in your therapist. Look for a human being, who is interested in learning. Someone with an open mind who doesn't think they have all the answers or a formula.

Look for someone who walks in, shuts up, listens to you and is paying attention to your child,SILENTLY. Not someone who thinks they are so good, that they know exactly how to interact with an autistic person they met for the first time. Look for someone who is observing your child and you, rather than making a lot of noise.

If you know anything about autism, you will know that no one knows anything really.

Someone with varied background (and not just autism or behavior therapy) is better. Look for someone who has actually spent time with a TYPICAL child. Maybe a past ECE teacher or someone who also worked with troubled teens or disabled adults and so on. These people come with a wider perspective and not just a narrow view of behavior.

Most of all look for someone who is interested in your child (and hence their career/job) and not just certifications, accomplishments and money. There is money in this job, but you cannot put a price on compassion, creativity, humanity and sincerity.

I often don't even bother replying to emails where they only ask me "what days and how many hours you looking for?".

Only bother with the people who call you or ask you about your CHILD. "Could you tell me a little about your son/daughter?" is usually a keeper.

This is a tough job. How many people do you know who work for a living and hate their jobs? Pretty much everyone. Find the one who loves their job.

These therapists are expensive, but trust me they are worth every penny when you see them bringing in their own toys, crafts, ideas. When you see them coming up with their own solutions to YOUR problems. When they take the time to search for community programs or things for your child to do. When they attend workshops, read books, share stories and take responsibility.

The going rate for a therapists in Toronto is $20-$25 per hour. A brand new girl can cost up to $15-18, but good luck finding one who thinks she is brand new enough to charge that. Most of them think they already know everything about autism the moment they graduate.

Its tough, keep looking.

The Program

Most regional programs want you to use the ABLLS for ABA. A more modern and developmental tool is the VB-MAP. At the end of the day, they are all just tools, and a good teacher uses many tools to teach. She finds the one that works for the child. She is not a slave to a method or technique, rather she has many methods at her disposal and is willing to try something else when one thing is clearly failing.

We use many tools. VB-MAP, Denver Model, RDI, Fluency and Precision Teaching and so on.

The program is based on individual needs. The days of mass trials and mountains of data are gone. Stay away from this method. There are more human ways to do ABA and teach autistic children. Find out what they are, and find people who know them.

Educate yourself constantly and keep an open mind. Don't get stuck in the corner of "Whatever we are doing is right". There is no known cure or treatment. There are some that have been studied scientifically and have produced some results, but your child wasn't part of that study, so keep an open mind.

Hopefully this has been helpful to someone out there.

Materials

My Senior therapist purchased her own binder, and other stuff. She brings in her own flash cards, although I have a large collection myself that we sometimes use.

I have an enormous collection of toys and educational material. The Dollar Store, Kijiji.ca and Craigstlist.ca are great for purchasing cheap or used items. It really depends on your kid and what his/her interests are. However no home program would be complete without Mr Potato Head, surely :D

Most of my therapists have their own collection and bring things in time to time. One of them makes her own toys!

Video taping therapists and sending this to the Senior Therapist for feedback has been our single most effective training tool. Use it.

Hours

Do not get fixated on hours. Most people will do what they can afford. If you have loads of money, usually more is not necessarily better. I don't believe in the 40 hours a week torture of mass trial ABA. Children (even autistic ones) learn in many ways and need time to consolidate learning. You cannot teach swimming and making a salad using mass trials using M&M's or tokens for reinforcers, but these are fun things to do and learn and can be taught using behavior management techniques that are more natural and flexible.

In the real world, the reinforcer for making a salad is the salad. Think about that for a second. Think about what you are actually teaching a child by repeatedly asking him to get you the cup, and then giving him an M&M or thomas tank engine token when he gets the cup. If it looks stupid to you, it usually is.

I will post more about Funded Programs and their jargon later.

Government funded home based therapy - a blessing and a massive challenge

2011-11-16T10:38:00.001-05:00

Every homeschooling mother has her challenges. The more your kids' abilities increase and diversify, the more you take on to keep them challenged and learning.

One of my challenges as a homeschooler or just a human being, has been delegation of tasks. Inability to delegate usually results due to a lack of trust in people available for delegation. Perhaps you are aware of their expertise and abilities, but do not trust them with your task, even though you know that you are unable to do it yourself. This is harder when it comes to major responsibilities like children.

I am more than happy to delegate cooking, cleaning and laundry. Although I cannot afford to delegate those at the moment.

Part of running a home program requires trust in your child's therapists. Most of the work they do, I don't. So rarely does anyone cross in to the realm of activities I do with K. However since we got funding for our home therapy program we have had to meet the government's requirement for what they have standardized as home-based therapy for autism.

Although we are fortunate that we have a team of flexible, open minded people, these requirements still sometimes become an obstacle to streamlining homeschooling, life and therapy.

To meet the hours per week requirement for instance, I have had to hire more people. Ideally I would have liked to increase the hours of the existing therapists and schedule it around K's needs, but this has not been possible.

Therapists work independently for various clients and ours have busy, full schedules. They cannot just make room for you where you would like. Inevitably if you want someone for a particular time, you have to find a new person to fit the team. They have to be the right fit for your program, time and requirement. (An impossible combination in itself).

For some reason, I cannot seem to pull this off. For this reason I have to do sessions on weekend mornings because someone can only be available on a weekend. This gets in the way of my life with my family because I do not want anyone coming in on a weekend. I have to do a session at 3-5 pm one day and then 6 - 7:30 pm on another day.

Either I am unlucky and incompetent or the entire framework for funding home programs is flawed. Wouldn't it be great if we could save the money we waste on these garbage hours on weekend mornings and evenings, just keep our regular morning weekday hours going and then make the funding last LONGER for more YEARS and really use it the way it suits the disabled person and their family?

Why must I compromise by either sending him to school, a pointless childcare or after-school program or have him cooped in the house for more hours just to meet government requirements?

I want him to have a normal homeschooled life and be able to go to arts or sports in his afternoon hours. Finding such a program that will accommodate him and also be effective has been impossible to do. Every place is either overcrowded or teaching the same old anti-autism structure of circle time, story or group craft. Group instruction, over-stimulating environments, ignorant staff are the many walls that we hit whenever we try community things. Its fortunate that K actually enjoys a few things in his life, like swimming.

So last night when I had to leave my baby at home, to drive my son to a local pool to meet his new therapist there for the only public swim time available in the afternoon in our area at 6 pm, I wondered why does it have to be this way?

K is awake 5:45 am every morning (and so do I). Around 6 pm I would rather be giving him dinner and winding down with some books or quiet time with something else, in my warm and comfortable living room. Delegating swimming, an activity K and I enjoy together, has been difficult for me. Is he going to enjoy himself? Will he continue to learn? Will the new regular people in this new community pool be accepting of his strangeness? Am I doing him an injustice by taking his tired little body swimming at this hour? His emotional, social and physical well being consumes me to the point of ulcers.

I couldn't even bring myself to sit and watch them swimming from the viewing area. I spent the hour in my car trying to fight thoughts of baby falling off the bed, or spilling hot liquids on herself becoming scarred for life, or being run over at the traffic signal, due to the negligence of her caregiver (as my paranoid imagination would like to believe is the case).

I am really tired.

As he emerged from the changing areas looking content, I figured its not the end of the world. At least there are places here he can go to with someone competent and responsible. At least my ulcers will not be as a result of something worse like no therapy, or no funding, for now anyway.

He fell asleep on the way home, still smelling of chlorine and I was met at the door with a happy, fed, excited baby (who stayed awake for a few more hours!).

It is what it is.

We have to make it work the best we can, with whatever options we have available. It is not ideal, but at least we have something going for the next year or so. Who knows what will come next in our therapy/autism/homeschooling saga. Allah makes easy what He wills and no one change that and whatever He makes difficult no one can make easy.

Are you motivated by failure?

2011-11-13T10:34:00.001-05:00

K likes to get in the way of closing elevator doors, revolving doors, kids coming down slides, or swinging on swings, and then quickly gets out of the way just before they hit him.

I guess he likes the adrenaline rush or thrill of it, and it makes things difficult in these places for us.

Yesterday however he tried to do that on the road with traffic.

A few seconds of fixing the baby's hat and from the corner of my eye I saw him standing in the road. It was not a main road, and cars were very far that I had enough time to run and get him.

It has been difficult getting around with baby and stroller, and K always on his own agenda where ever we go, but this one takes the cake, or at least my sanity.

As adamant as I am about getting out despite baby, weather or social challenges, even I need some time to get over this little incident before I step out the door with K again.

Although he is the same, and he will always be him, I have found myself increasingly frustrated with having to manage him everywhere.

In the pools, changing rooms, mosques, gatherings, outings, super markets, and so on. It is almost as if life is changing and I need K to change and keep up, and he is, God bless him, but he will never be able to match the rate of change of his peers, his family, his siblings.

Only the family with autism knows the challenges of these little things, which no one outside our world can truly comprehend. Where others will take on more challenging situations and activities, motivated by their children's progress and desire to do things. We will do it despite lack of progress and our child's lack of desire to do things.

We are sleep deprived, tired, under-resourced, isolated, thick skinned, determined.

We are insane and motivated by failure.

No more funding available in BC

2011-11-10T10:14:00.000-05:00

Well there goes our escape plan to BC after our funding here ends.

Government shortchanging vulnerable people again.

Also seems like anyone advocating for redirecting budgets to meet these dire needs will be promptly removed from office.

The year of seasons

2011-11-08T15:57:00.001-05:00

I know there have been a lot of photos on this blog lately, but what to do, I never fail to find something to photograph in the fall.

We had the longest, nicest summer, and now the fall seems to be going on and on. I wish winter brings a lot of snow, so we can slide down hills in our toboggans!

Eid

2011-11-06T18:34:00.001-05:00

Today was Eid-ul-Adha or Eid of Sacrifice in North America and most of the world. The countdown to Eid was filled with reminders of the sacrifices that prophet Abraham and his family made for the sake of Allah and His message. Peace and blessings be upon them.

We had a great day. K was patient and calm at the mosque, and I had a little help from our friend the iPad during the sermon.

Eid Mubarak everyone!

Canada continues to ignore the needs of individuals with autism

2011-11-05T14:52:00.000-04:00

Here is a nice dose of truth of our every day reality.

Last night I came across someone, in my community, whose family had broken up due to the stresses of raising an autistic child on top of all the other things that normal, middle class to lower middle class people, not blessed with unlimited resources, face every day.

Please watch this important documentary and continue to support the effort of these brave families.

I will tell you now, that after all these decades of advocacy for correct autism treatments, it was only by chance that three years ago, upon diagnosis, we heard of ABA as a treatment for autism by our forward thinking paediatrician. So many families I meet still have not been recommended this by their health care professionals. They are given no advice nor any direction. Instead they are often already entangled in a web of deceit before they even realize what it is that will actually benefit them. We were lucky that we met the right people at the right time, who exposed for us the hoops we would have to jump through in order to get the minimal help for our son.

Now that we are getting that help finally after years of waiting, we are always under pressure to deliver and perform up to certain standards otherwise that funding will be taken away. I am under more stress after getting government funding, finding ways to play all the little bureaucratic games, still jumping through hoops, and juggling a normal family life, waiting for the day this funding will inevitably be removed from the equation leaving us with no options whatsoever.

Unbelievably our contract states that government funded ABA only benefits children for one or two years! This is the level of hypocrisy and red tape that the government uses to protect it's interests and ignore the needs of families with autism.

How would you feel if you were told, that your child would only benefit from one to two years of school?

Medicare's Orphans. from MedicareForAutismNow on Vimeo.

Today is a gift

2011-11-02T16:03:00.000-04:00

Homeschooling Autism - Part 2

2011-10-27T07:17:00.000-04:00

This post is second in a related series I am trying to do on our homeschooling. Click on Part 1 to read previous post.

In this post I want to write a little bit about curriculum and schedules.

There is no such thing as an autism curriculum.

In Ontario there is no such thing as a special needs curriculum, as all students with special needs are identified as being exceptional students with individual needs. They therefore have an IEP or Individual Education Plan and undergo continuous assessment at school to update this IEP. It says on the Ontario Ministry of Education Website that "It is anticipated that, with appropriate special education programs and/or services, many students with special needs (whether formally identified or not), will be able to achieve the grade-level learning expectations of the provincial curriculum. "

Therefore the goal is to bring the child on level with his typical peers. No matter what anyone tells you at your school board, or at the autism early intervention services in Ontario, know that this is the goal or expectation from the child with autism. This ridiculous expectation therefore never really bothers to take in to account atypical development and its sole focus is conformity. It also becomes an excuse to exit children with autism from early intervention programs, set up weird benchmarks for their achievement and so on. But we are homeschoolers and we have moved past critique of standardized government education. Right? Yes.

Due to the nature of the disability you are teaching many things that are not on any curriculum, but are learned as part of normal development by typical children. Some of these things you might never be able to teach. But you don't know that until you start trying to teach them. The autism diagnosis does not come with a neat list of things your child can and cannot or will and won't be able to do.

Most parents of typical children can safely assume for example that their child will learn to communicate in words, develop executive functioning abilities, and their job is therefore to "teach to" these abilities using tools like communication, discussion, collaboration, creativity and so on.

Here many of the tools of teaching are missing. We are unable to communicate, discuss, collaborate, solve or be creative - or maybe we are able to be creative, but due to lack of communication, we cannot express creativity.

Also many of the abilities that traditional education or schooling, or unschooling etc teaches to, are missing. Many children with autism are for example unable to make choices. K definitely has preferences but he cannot make a choice. I don't think he realizes that he can in many instances and it is a work in progress. It is one of the things on our "curriculum".

When teaching K we need to first figure out what we have to work with. When we started three years ago, we had

1) ability to rote repeat or echo back sounds and "words"although to him they were only sounds.

2) ability to imitate

And that's pretty much it. When people hear that they often make suggestions that are based on assumptions that K at 3 was able to do all things that most babies can do. Let me tell you something using my baby daughter as an example.

She is 8 months old. She initiates this pattern all on her own. No one taught her this. She sees a ball, she throws it. Her throw is more like letting go of the ball in your general direction. She stares at you with a serious expression and you give the ball back to her. She does this again and again. If this pattern breaks and the ball wanders off, or she throws it but it doesn't quite get close to you, she takes responsibility to go and get the ball and re-initiate the exchange. She expects from me standard facial responses of joy or "uh-oh" if the ball goes off somewhere. If I do something wacky like a somersault or excited laugh at the wrong time, she does not respond. She merely stares at me surprised, looks away and then either focuses on getting the game started again, or gets dysregulated and moves on to something else. Sometimes she comes back to this game after this break and sometimes she doesn't. This innate ability to sustain back and forth interactions, taking responsibility for your own learning, using the parent/adult as your guide to new experiences and information, and ability to repair, this is still missing in K who is now 5.

That is autism. To me. To me this defines autism. Because every learning ability be it talking, asking questions, solving problems or whatever stems from these foundations. It may not define your autism, but it defines our autism. To me autism's learning disabilities DO NOT stem from an inability to speak, or inability to imitate or inability to sit down and so on. Those are all consequences or external manifestations of the deficit in those other foundational abilities that baby Poi already has and K never developed.

So does it make sense then to teach K to sit down, to speak and to roll a ball, without him realizing WHY he is doing all those things (except maybe to earn an iPad or some gummy bears?) NO.

So how do I teach and what do I teach?

I don't know honestly, I am still trying to figure that out. What I do know is that it is not happening at school. Because at school they don't know what autism is or what behavior is, or you could argue, what even typical development is and why it is the way it is. This level of mindlessness exist throughout the fabric of society, but I feel at such an early age, it is a dangerous place to send a child, especially a child with autism. I am willing to suffer abuse from other parents who will go so far as to accuse me of neglect or even cruelty by keeping K away from traditional school. Go on call the child services. Thank God for living in Canada, where we still reserve the right to homeschool without nanny-state like rules. For now.

Then there is also a level of compromise. We cannot wait until K is 22 and maybe then able to have the tools of learning in place to learn some things typically. Some things we HAVE to teach in the pathological way by behavior modification. Such as some aspects of self-care, some academic abilities (although there are people who argue never to make that compromise for academics) and so on.

K may not understand why he has to use the toilet, but we are not waiting for him to figure that out thank you! Similarly I have started to attempt to teach him how to read. It is not really going smoothly, but what does? I am doing this because I am aware of his high level of comprehension when he is being read something that interests him. (The latter part is key- interest). Therefore I felt teaching him to decode now might be good idea,I feel once he figures out what reading is and that he can do it, he will be more motivated to learn or even teach himself the rest.

However the tools of teaching are still missing - and its VERY HARD to find out how to teach him such that we don't compromise his interest in reading, and also teach him in a way that he learns. Right now these two goals seem at odds with each other. If I use ABA to teach him decoding, he will start to hate learning to read. Without this teaching tool, I have got nothing to rely on except repetition, his own natural development and hope. So right now I am using the second approach and if we make no progress, then we will default to mass trials and prompts. Yuck.

For those who logged on to see what curriculum I will be talking about, I will write about somethings we try right now. We could give them up next week or later because K is not ready or needs a break or they are no good. But here they are:

Reading

Headsprout Online reading

Home made flash cards

Games with magnetic letters, printing and stuff to reinforce whatever we do in our online reading

We only started this formal curriculum a month ago. We did lessons 1-3 and I felt K had not grasped blending two sounds together. So we are back to lesson 1. I am going to stick to this as our main method for now. It is natural, fun and really really slow at the moment. I don't want him to get the whiff of the fact that he is being taught something or it all goes to pot and I will have to start dealing with behaviors.

We also do writing, but I am going to lump this together with Reading. I have a curriculum I like but I don`t regularly use it yet. It is the houghton writing program. I like it because of it's precision teaching style.

Language

We are still plodding along with NET and Verbal Behavior. Every morning he has a few hours with a therapist who plays games, does simple crafty activities and works on his language skills and communication using these methods. That many hours has become possible thanks to government funding which began in July this year. Sometimes there is work with cards in the typical ABA way - where you give directives and expect responses and teach from most to least prompt. I am not a fan, but I see it as necessary to maintain some level of instructional control. We are under a lot of pressure from our local government agency to increase table programs and behavior protocols or they will kick us out of funding. That is another post for another time.

Math

I have no curriculum for Math yet. Math requires a lot of verbal instruction and there is not enough receptive language in K right now to understand. He is still struggling with correspondence counting. But in observing his play I see him grouping things, able to recognize number symbols and also count. I truly believe that I cannot teach K any math without instructional control and until he gets a firmer grasp over his self regulation. We can however work on Math concepts and we do that in other activities such as baking, setting the table, making pizza, outdoor play, building Lego and other structures is fantastic for math concepts such as give me all the green pieces, and so on.

I tried patterns and he is good with continuing ABAB patterns but unable to fill in the blank in the same patterns...so AB?B and he cannot fill in the A. He was getting frustrated, even with real 3D objects and we have given up this pursuit and are sticking to finding ways to do patterns in more natural settings like building.

In an ideal world I would love to get K's language ability and instructional control to the point that we can start the Direct Instruction curriculum for Math.

Schedule

Every morning (7 days a week) someone comes in for a few hours to work one on one with K on language goals. This involves games, VB table work, arts and crafts.

The rest of the day from 12 or 1 onwards he is with me. We work on RDI goals, we read ALOT and I am always looking for that new book that will spark K's interest in a new topic.

We hang out with our homeschooling families as much as we can in mosques, conservation areas, indoor playgrounds and so on. We try to have a schedule outside of therapy hours for our sanity and for consistency, but it is not always possible with young children and K's severe mood changes.

nature and active living

I put that as a separate 'subject' simply because we do so much of it! It is a major framework for us to practice our RDI skills. Walking trails, swimming, biking when weather permits are some things and I am always looking for the next new thing to do outside. We have always failed to use formal programs in this area for a long list of reasons I will discuss in another post.

In time I hope to introduce K to rock climbing and canoeing. I would love to give horse riding another go next year. It was a spectacular fail this year. It started so well and then we got in to a routine of screaming, crying and just plain refusal to have anything to do with the horse. The failure of this activity is still a huge surprise for me and I have not figured out what went wrong. Just shows that I have so much to learn about autism and my son.

Some other activities I would like to try are working with clay and carpentry. However for that I need to find more support for myself at home and more space. Here is hoping that one day we get to try all the things we want to try.

Homeschooling has taught me that I love spending time with my children. Autism is an every day challenge and I do carry around all the emotional baggage of any parent with a disabled child. But I cherish my role as his guide and teacher. We are both not particularly good at our roles, but I love learning together with my kids. And I think in the end that is what homeschooling is all about.

It would be nice to have some family around or at least a maid. But you do the best with what God gave ya!

In subsequent posts I will talk about obtaining support from community and other resources and socialisation.

Fall is when we await the beautiful silence of winter

2011-10-19T07:58:00.000-04:00

Life after 6....(pm) and some helpful suggestions

2011-10-17T17:50:00.000-04:00

The Jekyll and Hyde nature of the autism in our home makes things consistently unpredictable. At around 6 pm everyday, I am almost done figuring out the complexities of the pathology of control motivated behavior and want to assume a vegetative state in front of some kind of screen.

Since we threw out our TV almost a year ago, we have been forced to do such arduous things as thinking, reading books, listening to thought provoking YouTube lectures, and right now blogging, at this most trying hour of the evening. I have goosebumps just from the discomfort of having to put together a comprehensible sentence to express this train of thought.

Outside this room K is screaming his head off, because he got hurt supposedly and no one acknowledged this incident with the routine script he expected. Dad has decided to play this game by threatening to shut the door to K's room if he is not quiet. This is old and intervention could manifest itself in the form of breaking dishes and screaming, so the quiet of this room was a better option. Until of course, dad decides to bring the baby in here proclaiming how K's behavior is going to have a negative effect on her and she should not be exposed to this until she is at least four or five years old. This room might protect one from screaming tantrums and losing your cool, but apparently my fortitude is permeable to stupidity. So after a brief spat outside the fortress of fortitude, I am back in here, blogging, with the baby. Whose attention is satisfied with an array of USB sticks, for at least the next 30 seconds.

My initial idea for this post was to blog about purportedly helpful things people say to me, what I actually say in response, what I really want to say, how we can remove "purportedly" from the definition of these helpful suggestions (I mean who really uses that word anyway) and turn them in to real helpful suggestions. Something I thought of earlier in the day, when things were going down completely differently around here.

So in an attempt to make this post have some meaning, I will do that. Now. After I replace the USB sticks, which are no longer interesting, with a bag of (unused) urine sample bottles. (I don't know why we have them). They have bright orange lids and baby likes them.

Purportedly helpful suggestion #1

You should get out more, to take a break (for instance to extremely unstructured social environments requiring mastery in self regulation, collaboration, and instructional control such as library groups, pottery classes, after school drop-ins and so forth)

What I should say.

No actually, I should get out less. All such outings are physically and emotionally exhausting for me and K. They are also mostly (not always) counterproductive to building episodic memories of success and actually lay out a foundation of failure after failure for an already anxious kid very aware of his incompetence in such situations. Actually there are people who get paid anywhere between $20-35 per hour to take children with autism to such places, they call themselves behavior therapists. No one pays me. I have to pay taxes so that I can wait for 3 years to get paid to pay these therapists. I wish someone paid me, but I am expecting a big pay check in the Hereafter inshaAllah. Amen.
To get a real break, I should stay home give my kids a few things to stim with, while I sip a cup of coffee and text my sister.

What I actually say.

Yes/InshaAllah/We are always looking for a good program, can you recommend any?

Real helpful suggestion.

How about we come over to your home/the park/favourite fast food place, just me and my kids and hang out with K in a setting where he is already comfortable, keeping uncertainty and anxiety low. My kids can play with your unique, vast collection of awesome toys and K can slowly build some kind of relationship with other kids based on familiarity and memories of successful co-existence with peers on his terms, without being constantly "behavior controlled", learn to generalize personal boundaries and over time become accepted and not always shunned and ridiculed by kids his age.

Purportedly helpful suggestion #2

Lets everyone have a big potluck party, get a clown, craft table, and play lots of games. Lets invite the special kids also. Their behavior does not bother us, we are inclusive.

What I should say.

This is a great idea, for typical children. Cooking, then watching my kid kiss, hug, push and snatch things from other children is absolutely draining and useless for me. It may not bother you, but it is painful for us, we have to mentally prep ourselves, have little pep talks with ourselves, and plan every minute of the few hours we will be spending there. It is not relaxing or fun. Plus I can't cook for more than 5 people. We still do it though, because you have to pretend to be normal at least sometimes or no one will talk to us anymore.

What I actually say.

Yes, why not. Let me know what you would like me to make.

Real helpful suggestion

Lets get together at each others houses, just the two of us, maybe invite one other person to change things up once in a while and add variation. We can take turns making the food. This way K will get used to the same two or three kids in a setting he is already comfortable in (his home) and slowly become comfortable in a new setting (our home). We don't mind because we want to help him and really get to know him. Autism does not have to mean you are always socially awkward and isolated. Lets be consistent and do this regularly to really see a difference. There will be no circle time, craft table, clowns or "organized games".

Purportedly helpful suggestion #3

You should leave the kids with your husband and get out on your own once in a while.

What I should say.

No you should offer to watch my kids so my husband and I can get out once in a while. I don't mind doing the same for you.

What I actually say.

Yes that's a great idea.

Real helpful suggestion

Once every month or every other month you should drop the kids over to our place so you and your husband can get some time to yourselves.

I am sure there are more, but this post is getting stale. So if you know an autistic family in your community, try making these helpful suggestions to them if you are able, inshaAllah.

MONEY

2011-09-29T10:08:00.001-04:00

It is my precious 2 hours off in the morning when K's therapist is here and my baby takes a nap. I should be listening to my Quran lectures and making notes so I can do my assignments before the weekend. But something has been on my mind. Actually it is always on my mind, somewhere, pushed to the back or underneath other clutter.

Recently in an attempt to declutter my head and my life, and to start properly planning and scheduling my homeschooling, housework and studying, I took this online seminar by Sheikh Muhammad Al-Shareef on time management and managing other aspects of your life.

As a result I did some basic things, but the larger items still clutter my head. It has left me wondering, am I too far down the road now to accomplish the things I wanted to a few years ago. Do I need to find new goals and aspirations? What do I want to do and where am I going? We did various visualisation exercises and one of them was visualising yourself a couple of decades in the future. That was a painful exercise I tell you.

It was a good seminar in that it helped me be honest with myself, and take more action to do the things I keep adding to my to-do list. In fact we had to make a to- do list and mine was more than 8 typed pages long!

It also led me to question, are we as a family ever going to get over the shock of having an autistic child? Families who have older children with severe impairments, are you in some kind rhythm now where you don't always find yourself in an emergency, or in a constant struggle to do basic things like going to the store to get stuff? Or maybe a sleeping routine? Or a weekly schedule for your child?

In the last almost three years, we have spent over $60,000 in K's therapies. Yes you read the right number of zeroes there. That's sixty THOUSAND dollars. My husband and I were good savers when the two of us were working. So we have so far avoided debt. Now that we are penniless and living on a single income and we are finally receiving money from the government to continue these same therapies, I question the wisdom of this great expense.

So in my visualisation when my husband and I are sixty with thirty-five year old K sitting at home with nothing to do, not able to pay his bills or his expenses or support himself independently, I envision only poverty and disability. Should I have spent that money on another pursuit where the return on my investment would be greater? Like my education, or save it for my other children's education, or save it for my old age?

Will we ever be able to save such an amount again, with more kids and me wasting away at home looking after them? If I go back to work in five or eight years, will I even find a job that pays what I used to make? I will most likely have to re-train, and re-invest in an education and start from zero. Will that be sane considering the costs of childcare and the larger cost of having someone else raise my kids?

What will happen when all income stops? The other day my husband was waiting at the grocery store checkout with our groceries and an elderly lady behind him was waiting with a cucumber, some deli that as on specials, and broccoli, and after doing her math that was $8.47 and she was holding a ten dollar bill. Possibly that was her grocery budget for however long that food would last her.

As practising Muslims we cannot take out a mortgage or invest in non-shariah compliant financial things, which even if they were shariah compliant are now no longer the safest or the smartest investments.

Some interesting points Sheikh Muhammad Al-Shareef brought up in the seminar were that in Muslims we have a habit of glorifying poverty. As if money is the root of all evil and being poor is bringing you closer to God somehow because so many righteous Muslims of olden days were poor (something that is not even true! There were plenty of filthy rich Companions of the prophet as well).

Lets be honest. Being poor sucks. Being poor is a bad thing. Being poor means you are always worried and concerned about how to pay your next bill and meal. Being poor means you can contribute even less time and resources to your community and to the Muslim cause. Being poor is not good for you or the ummah at large. Being poor is not a sin, but it is not a good situation and as a Muslim it is not sinful to want to be wealthy and have provision. Sabr (patience), Shukr (gratitude), humility and obedience to Allah are required in all circumstances, but taking proactive steps to increase your wealth is not ingratitude or evil and sometimes Muslims are using these as an excuse for underachievement and procrastination.

I really liked all he said, but it was very disturbing for me too because I think in my mind I had sort of given up to my circumstances. I have a disabled child and no money so that's just my fate chosen by God and I have to be patient - sort of attitude.

It was great to hear that, that is not the right attitude and I should not let anyone tell me that is the halaal attitude.

Our situation is dire. We are first generation immigrants, with our previous home fast deteriorating and becoming uninhabitable for those who are still there. We have outdated skills and wrong and narrow attitudes about wealth. We have a growing family and one of our children at least is a source of our weakness and a massive drain on our finances as well as other invaluable resources like time (at least in this worldly life he is).

We are by several standards still quite young, but I feel very very old and tired most of the time. Years of moving around, unsettledness, struggling and now this disability has taken a toll on my motivation and ambition. It is sad but I feel detached and unworldly. As if I am content with the downward spiral of life towards my hopeless visualisation of my future.

We need to find hope and drive from somewhere, my husband and I. For the sake of our family and ourselves. We owe it to ourselves, to God who has given us this time here, and also to the Muslim nation to really find it somewhere in ourselves to CHANGE our situation.

Running Jumping Falling Boy

2011-09-24T20:07:00.000-04:00

After two weeks of flu and recovering from flu, K did not know what to do with all his renewed energy.

I wish I felt as great as he does in these photos, because now I am down with the same bug. Despite cold, cough and feverish conditions, it is STILL better to be outside with crazy children. I just lay in the sun hoping to melt away the stuffiness. It didn't really work, but K ran around me in circles to his heart's content.

Running, jumping, falling boy, is a happy boy I guess. Also notice how he suddenly became huge? I don't know what happened. One day he was little and then a week later nothing fit anymore.

Eid Mubarak

2011-09-02T10:03:00.002-04:00

Here is a filler post before I get back to some serious blogging about serious things. I just feel guilty ignoring my blog and writing hundreds of posts in my head only to forget about them.

Ramadan has come and gone (actually so has Eid, as this is a delayed post, but better late than never sometimes). We celebrated Eid in the usual humdrum style that we have been doing since I married and move away from Pakistan.

I brought out the strobe lights for K, and he stomped on the dots and sang "A aa Alligator, B bb Ball" to his heart's content.

Right now K doesn't know what Eid is, it is very hard to make a big deal out of it here. He does not understand the significance of or even notice new clothes or other people dressed up and greeting each other. We avoided the big gathering at the Metro Convention Center and Ontario Place because he cannot stand in line or handle large crowds. We could have gone, but it would have been an exhausting exercise in pulling his arm and behavior management. And we do that all the time anyway so why torture ourselves on Eid.

I got him some presents and made him his favourite "horsey" cake. We went to the mosque and I told him it was Eid.

It did not feel like Eid. Still there was too much to be grateful for to complain, so I shall not (complain).

I love my kids and I wish I could have given them a better Eid. InshaAllah next year I will plan in advance and make more of an effort to have a more enjoyable Eid.

Hope yours was way more memorable.

Non Linear

2011-08-25T10:20:00.000-04:00

These days K is a happy boy, but he is a crazy boy. It is as if his mind is racing way way ahead of him and his body as usual cannot keep up. They are two entirely different entities that have yet to learn to coexist.

He is also full of words. Scripts from starfall, toy story, other movies and people. He can be heard singing "My head is on my body I can move it like this" at 2 am. He wants to come up and touch my face ALL the time and tell me "Look its a Jaan, I love the Jaan" (thats what he calls me).

He routinely squishes the baby, almost folding her in half, proclaiming, "I like this baby". He wants to pick her up, have her hang on the monkey bars, slide down slides and spin on swings.

Baby, as if picking up on this high energy around the house, is already crawling and cruising along furniture. She is going to turn 8 months old in a couple of weeks. She loves him, and wants to do whatever he is doing, but she is also afraid for her safety.

Of course the rest of the world does not understand the states of Kand the other day at the park, when he cupped a little boy's face lovingly in his hand, he got yelled at by the boy's mom. "DO NOT TOUCH HIM!". I wonder what K thinks when strangers talk to him that way. As they left the park, the boy's elder sister (around 6 yrs old) commented to her mom, "He touched me too". To which her mom said. "Yes he is just aggressive". That is social conditioning. The little girl was curious, and mom was well, like most people in these parts of the city.

As a result of this however, we got the park to ourselves with some other friendly and less spoilt Chinese kids.

For a brief few moments, I imagined running away to another place. Maybe a remote village on the coast of West Africa. Where I would live among "savages" who did not mind being stroked on the face with affection by random strangers because they had somehow managed to preserve their humanity. Away from these artificial lands where beneath the thin superficial covering of human skin, reside angry savages. As if reading my mind, dishevelled Chinese mom decided to break the play ground ice by asking that classic mom ice breaker question of all time, "How old is he?". These days the conversation usually leads to explanations of why baby Poi is so much lighter than her brother, and eventually special needs schooling and so on.

I guess we will go back to that park again while we are still living here. The beaches of West Africa will have to wait.

Productivity in terms of his programming or any teaching has been pretty much zilch. There is no instructional control. K is as high as a kite and its been a few weeks. He is not coming down. He is up most nights and all day in a perpetual state of stim. I wonder during these phases, what it is he is going through. Growth spurt? Perhaps its the change in baby's behavior that has him this excited.

To teach you need a student, but what we have right now is a tornado with legs. I have been looking in to curriculum's (like I do every 4 months or so) only to give up and just continue with taking walks, watching videos for joint attention and some emotion sharing language and basically just holding the fort. Sometimes it seems such a waste to just always spend all energy and time holding pieces of K together and getting through one week to the next, and not be teaching and creating like other homeschoolers. K is brilliant. But 90% of the time we are stuck, together, in this storm of behavior, dysregulation and stim, wondering if we will ever be able to teach him anything.

There are so many things I want to post about. Such as my experience with government funding, the sate of our RDI intervention, learning Arabic, the sky, the developmental milestones of baby Poi (not the ones that are on the pediatricians list, but the RDI ones that matter), homeschooling and so on. Eventually.

Peekaboo blogging

2011-08-14T13:30:00.000-04:00

I have not been consistent in my blogging for a while now. Naturally life changing events like having a second child, trying to pursue an Islamic education and trying to be a better (practicing) Muslim have laid claim to most of my time. You can do all these things and blog (as many people do online) but I know it will take time before I have found a new groove amidst all these changes and resume my online activities.

For my beloved non-Muslim readers, I have been observing the holy month of Ramadan since August 1st along with 2 billion other Muslims all over the world. As a nation we are divided in many things but I love Ramadan for many reasons, one of them being the display of unity among Muslims across all walks of life, race, ethnicity and so on.

The previous Ramadan (although I was not observing fasting because of my pregnancy) was one of the best of my life. I came out of it with an increased motivation to change many aspects of my life and I have seen the fruits of that effort the whole year in my attitude, peace of mind and daily life. All praise be to the one God, Allah.

So this Ramadan I was determined to raise my game a little bit more. Although breastfeeding women are exempt from fasting if they fear it will affect their milk supply or infant's health, I have done my best to fast. So far things are good for both baby and I. May it continue to be so. Amen. So that in itself is a change from last year.

The biggest difference I noticed was the excitement and anticipation with which I was waiting for Ramadan. Most people who do not understand a Muslim's connection with God, will wonder why any person in their right mind would await not eating from dawn to sunset for an entire month in the month of August. We have an easy 16 hour fast this year. Alhamdulillah!

This is difficult to explain, but here are some things I have felt while fasting this year and maybe they will help give those who have never experienced Ramadan, a glimpse in to the Muslim's love for it.

Establishing daily discipline.

Never throughout the entire year do we experience the extreme discipline that we often practice in Ramadan. The idea is to make this discipline a habitual thing by doing it for a month. Waking up at 345 am to have breakfast. Praying and thanking Allah. Making schedules for prayer, study, time with K, what to cook, what to buy etc to make sure that time, which is our most valuable resource is not taken for granted and maximised for worship.

This is the true spirit of Ramadan. And with children and chaotic people like me, this is a real challenge. It feels great on a day when I have accomplished some of my goals.

Looking at the bigger picture.

Ramadan is about telling your morning coffee "Listen Coffee! If I decide that I don't want to drink you, I can do it. I am not a slave to you. Coffee!". Ramadan is not a ritual for Muslims, but an all intensive regimen set up by God to help free us from becoming slave to our desires. I am not a slave to my morning coffee, and I prove that every year alhamdulillah to myself. Similarly abstaining from vain talk, arguments, being calm, forgiving and letting go of anger and so on. All big issues for me and its a real effort to keep on track with these.

I have always felt a slave to my anger. I cannot control it. But this is my chance and I am going to defeat it.

Are you a slave to something? Over spending? The latest technical gadgets? Food? Laziness? Your kids?

Even K, his therapies, his homeschooling worries, that consume my mind and drive me mental have taken a back seat. I have bigger and better things to do. I have to prepare my body, mind and soul for a meeting with my Lord Allah after death, and Ramadan reminds us of that. To not become consumed with the things of this life. To look at the bigger picture.

What a relief all this has been. I am in a great mood and so is K.

Surge of Charity.

A Muslim has been asked to give from whatever Allah has given him, and give in such a way that no one finds out about it. The reason is to do it sincerely for Allah and not to show off, or gain the approval of the people. So I don't want to talk about what I did and reduce the reward for myself. But I will say that most Muslims find they experience a surge of charitable spirit in Ramadan.

To those who are holding back, Allah has promised 700 times the reward for every unit of wealth you give for His sake. So give a dollar and get 700 dollars back, never was there such an investment. Invest in your Hereafter account. Do it now Muslims! Its better than pension.

I want to write more but duties call. I will be back with updates on K, Autism and life.

Here is a photo of the kids. We are doing OK.

Here is a very very short little video telling people who is Allah. Muslims use that word a lot, what does it mean? Is it the moon God? Watch and find out :)

Dare you to be sad

2011-07-22T10:40:00.000-04:00

There is great stigma attached to depression and feeling sad. Sadness is also viewed as an extreme form of ingratitude. Although this last statement is not entirely wrong, it can put a whole negative connotation to feelings of sadness that are sometimes just beyond your control! Often depressed people are told that it is just the work of Satan and they should increase worship to relieve themselves of this disease.

I agree with some of that remedy, but it is very important to identify the cause of a person’s depression and get counselling and support for it. It is not something that will just disappear on its own, although Allah is upon all things always all-able. But Allah also gave us intellect and put us on this earth as families and communities. We are connected to each other and it is also His command to offer each other support.

And also in the Sunnah of the prophet (Saw) in the many instances he offered counselling and advice to his followers. So many times he gave them hopeful words of advice, good tidings and supplicated for them in their times of distress.

Muslims will often cite the command about not grieving over the dead for more than three days as an excuse to shoo away anyone who complains of sadness. If you cannot grieve over death for more than three days then you have no reason to be sad over other things that are less severe than losing someone to death, seems to be the argument. Didn’t Ya’qub (peace be upon him) go blind crying for Yusuf (peace be upon him) when he went missing for years thanks to his brothers?

Islam and our relationship with Allah is the cure for all sadness, but IT IS OK TO BE SAD in Islam.

Things happen that make you sad. Do not feel guilty for feeling depressed. Islam gives us solutions to our natural inclinations and sets limits for us to reign ourselves in for our own benefit.

Depression is not the sin, but rather the sin lies in what you do about your feelings and how you choose to cure your depression. If you select for instance haram means to make yourself feel better like alcohol, music, drugs, or other hobbies that lead to haram like sharing your feelings with people of the opposite sex and so on, then your affairs lie with Allah and he is the best Judge. There are halaal ways of dealing with depression and I can tell you from my personal experience that they work, long term!

InshaAllah here are some that have helped me and may anyone who reads it also benefit from it.

Learning the Quran

We all read the Quran, but we do not study or learn it. Try it and by the will of Allah, your focus and time will shift to something that will cause your mind to reflect on some amazing things. You will reflect on your behaviour, your past, your actions, and become a more mindful human being. One who is more aware of Allah’s constant presence is more mindful.

Memorize the Quran and estabilishing salaat

I have been very inconsistent with this, but memorizing the Quran has many benefits. Apart from the obvious sense of achievement etc, it greatly improves your Salaat. Once you start changing up your regular rote surahs in salaat, you will find more focus and comfort in your prayer. Multiply this by 5 and you will realize why the prayers are scheduled when they are. Don’t need to be a scientist to figure out physiological changes in the body at dawn, midday, afternoon, dusk and just before bed. Don’t need to be a genius to realize the depth of focus of doing something in the middle of the night when the whole world is sleeping. A good, mindful, focused salaat is the true gift and cure from Allah to us.

Other people

We have to tread carefully when reaching out to other people to cure our depression. Many times people start leaning on, or over sharing with others making them the source of their temporary “fix”. Best friends, mom, whoever. People are your support but not your remedy. Find comfort in company but do not burden others with all your inner thoughts and feelings. Keep that for Allah and for prayer.

So how can you enjoy and laugh with other people if you are not feeling so good yourself?

Making an effort to really listen to other people and their problems, really making an effort to enjoying their achievements and their reasons to be joyful and taking a real interest in what they are sharing with others has been the ticket to enjoying other peoples company for me. In short, put aside your baggage when with others, do not think about yourself, and think of them, their kids, their lives, their stuff etc. It works. They also love you for it!

This applies to even those closest to you. The misconception is that you can unload your troubles on your mother, husband, sister etc. I find that never solves any of my problems and the reverse is more helpful, that I sigh, nod and listen to them instead. Much more therapeutic for me alhmadulillah.

Diet and exercise

An obvious cure for many things but one that is largely ignored when it comes to mental health issues. Diet and exercise however are not about a 5 week detox or 12 week exercise plan, but only works when it is a lifestyle change.

With busy parents it can become an added burden to go to the gym. I got my membership but haven’t used it in two months. Now I am guilty or just frustrated for wasting money and feeling like I have poor time management.

Find other ways to be active with your kids or just on your own. Thinking about what you eat and following Allah’s command to eat what is good on this earth, not only becomes worship but makes you feel great that you are looking after yourself. Islam after all is not just a creed or a bunch of rites, but an entire way of life. Find out what Islam says about eating, hygiene and so on. What is the Sunnah (way of Mohammed peace by upon him) for eating, sleeping, drinking, staying healthy?

Go easy on yourself, who is in control?

Often i will find that the cause of sadness, sense of failure or frustration is that I have placed unrealistic expectations upon myself, my children, my husband, life and so on. Reminding yourself constantly that it is not you but Allah who is pulling the strings will allow yourself to go a bit easy on yourself.

Comparing myself to other moms, families and what they do is seriously unproductive. On top of that people will give you well meaning ideas and advice about what you should be doing. Remember that no one really knows what it is like to raise your kid, except you. I know the difficulty of getting through the day without mommy doing my laundry, my kids spending hours playing with the computer or sitting in school giving me lots of "me time", or some best friend taking my kids out to give me a break. There are somethings that you just cannot do, so go easy on yourself. This is the decree of Allah for you. Accept it. Submit to it.

Stay away from blame

I have often found myself blaming various things for any particular state I am in. If only I had been raised this way and that, if only I had studied such and such thing, if only I had not moved to that place, if only this and that. Blame placing is like a catalyst for increasing sadness. Do not go down that road. Even if it is true, it will not bring any benefit. So whats the point? This is a contant nagging feeling and it is a very effective ploy of Shaytan. Don't let it get to you and cause you pain and suffering.

Make dua for yourself

An obvious one but if I forget almost every time, I am sure other people do too. In your rush to get going with other stuff after Salaat, you may only make time to pray for your akhira, forgiveness, the ummah, war and famine in parts of the world, your kids, their lives and so on.

It was the way of the prophets to supplicate to Allah for the smallest things. Make dua for the littlest thing, because it really means that you are aware that you depend on Allah for even that littlest thing.

Once you really start to feel that way, it takes a huge burden off you.

Some seemingly silly things I have made dua for: Lost part of toy (drives me mad), getting time to make dinner, lost cell phone, baby’s constipation, Tim Hortons ice cap machine working as I pull in to the drive through.

Sadness, like happiness is not a permanent state. Surf the ups and tread the downs and so on.

Feel free to share some things that have helped you out of long periods of sadness or depression.

Homeschooling Autism - Part 1

2011-06-24T09:19:00.001-04:00

This post has a bold title and I am afraid I will invite criticism for "generalizing" homeschooling based on just my personal situation and my sons's specific autistic disorder. But I see a few other families with autism with similar issues so I am going to go ahead and write this article anyway.

Once upon a time, I thought I could home school my son with autism without too many difficulties. Just find some other families and homeschooling groups to hang out with, put him in some community programs with support and keep going with the home therapy program and there you have it. My version of no-public-schooling and hence "homeschooling".

Let me break it down for families considering homeschooling a child with autism. Not just special needs, but AUTISM. Because those of us with an autistic person in the home, know that often the real frustration is not of lower intelligence, less understanding, lack of motivation to be with others, but rather the inability to express through the body what is happening in the mind.

Introduction: A little about the student and the teacher.

The student

Imagine for one instance, having thoughts, needs, ideas, high intelligence and desire to share them with others, but a body that is so disobedient. The words are not forming themselves in to conversations. When they are uttered they don't make sense, and you know it but you have little control over it. People cannot read your mind and so you are stuck in an endless cycle of miscommunication and being misunderstood.

So you either behave negatively knowing you will get in to trouble, because it is the only thing that you know is predictable; Or you don't really make an effort convinced that you will fail anyway. Later you sulk and punish yourself. Slowly this makes you lonelier, more frustrated, angrier, more depressed and erodes your self esteem.

No matter what new communication trick you take months to learn, you find that by the time you have acquired it, your peers are light years ahead of you. You do not understand or speak their language. When they come up to you, it is like an avalanche of information. You are still trying to figure out their body language, when they start uttering words. You are trying to figure out their words, they change their tones. You try to learn the tone and the context has changed. You try to pick up contexts but turns out they weren't really saying what they mean anyway, you were supposed to read between the lines.

Unless everyone who meets you quietens down, limits their channels of communication, and makes painstaking effort to get to know you and your nuances on a very personal level, there is no hope for any successful communication. Every encounter is a series of downhill tumbles in to inevitable breakdown.

Your disobedient body, will not comply with your cognitive abilities and your desire to communicate.

Perhaps not all autistic individuals experience physical dysregulation (or what I like to call body disobedience) quite to the extent that K does, but many will experience this phenomenon to some extent.

Now imagine being a lot smarter, determined, sensitive, receptive and motivated than the average person and being at the far end of the physical dysregulation scale as you can possibly imagine. That is K. Unfortunately.

He is the student of this home school.

The teacher

I get to watch and observe this phenomenon 24 hours a day.

It is hard to even type and put it in to words. Separating emotion from this complicated science of behavior is near impossible for me as his mother. Factor in my own ignorance, lack of resources and imperfections as a human being and you have the equivalent of a mind being slowly compressed in a G-clamp.

I am the principal, primary teacher and administrator of this home school.

I have no formal training and there is no system in existence that trains or supports this kind of teacher.

Stay tuned for more in this series. In future posts I intend to talk about curriculum, socialization, community resources, alternatives to homeschooling and other exciting stuff.

It's Summer and the Belly Buttons are out

2011-06-07T18:58:00.001-04:00

I hope everyone has been enjoying the continuous beautiful weather. One advantage of not being part of the school and work going machine is that you get to enjoy these days without the usual weekend or after school crowds.

However despite our best efforts we do run in to the odd character at popular locations like the beach.

Show K an animal, and he will immediately find a way to rub himself all over it with affection. I usually try to restrain him to buy enough time to ask the owner if they mind, or if the dog is used to children. But sometimes K, with his gazelle-like running skills, will beat me to the animal that his dog-radar has picked up, and my typical-person slow reflexes just cannot keep up.

Most people are lovely about having their dog hugged, kissed and rubbed by a jumping boy. Today as I scrambled to run after K at the beach, I was a little late as he had already jumped over a sitting dog. Dog seemed unperturbed, but owner was found shaking her head and we got the classic, "Does he not understanding English or what?" statement.

Now before you go judging such a person for making this remark, please be advised that we do go out in public looking like this:

So it is perfectly natural for a person to wonder if we speak English. I mean we don't even look alike for goodness sakes! He is blue and I am green. We have square heads. Its just weird.

Laughing it off, apologizing and explaining the disability part will almost always soften even the most annoyed, but today we got, " Well then you should keep an eye on him, shouldn't you?"

I don't understand? Maybe disabled aliens should be kept on a leash.

So that second one made me a bit sour I have to admit. But we walked away and found a quiet beach area.

The sun disappeared leaving a warm breeze, baby fell asleep, and K threw giant rocks in the lake to his heart's content.

I tried not to think about the challenges of growing K , raising baby Poi to be strong and confident enough to deal with embarrassment and self-consciousness, ~~running away~~ migrating to another country and perfected my rock-skipping instead. I did not know I could skip rocks, seriously, because a few years ago, before kids, I remember being totally rubbish at it. Now I am good.

Some things I heard myself saying today that cracked me up:

K I don't want you walking around doing absolutely nothing.

K walk away from the belly button. NOW!

(As he walks, grinning, towards giant flabby shirtless man)

K I know you really want to touch that man, but please try really hard. I know you can do it.

(Giant naked flabby man just wouldn't go away).

OK you had to be there.

Later That Evening...

2011-06-03T08:35:00.002-04:00

Remember yesterday's post about the epic kite flying fail?

Well, such was the determination that we went back in the evening, with reinforcements.

Normally I would be too embarrassed to post this photo of myself, but I thought I'd do it anyway because it kind of shows how clearly all this kite flying fuss was all about me and everyone else is just along for the ride! Lol! Dork-fest.

Poor moaning Poi still didn't get why she had to put up with all that sunlight, wind and screaming people running around her.

Maybe I can't do everything, but with a little help, I can definitely fly a kite :D

Oh and K had a ball. His idea of flying a kite however is to let it go (and he can live his Curious George fantasy in his head). Anyway, lots of referencing and shared enjoyment.

Life is like a kite

2011-06-02T14:36:00.000-04:00

It is a beautiful, bright, clear, day with a little wind. It is perfect for staying outside, enjoying a picnic and maybe flying a kite.

We set out to do exactly that this afternoon, but as I am finding out, nothing is that straight forward with two children who are so vastly different than each other in age and needs.

We got our kites, snack, I changed and fed the baby. It was her nap time, so I thought she would nap for a bit in her stroller which I parked at the edge of our football field and I would fly our kite with K (who loves flying kites).

5 minutes later, baby was wailing like someone was killing her and I realized I did not know how to fly a kite.

Not one to give up so easily, I spent the next hour trying, and the baby crying!

K shifted his attention between the kite (every time it would fly and go really high) and a bag of chips (when it crashed down a few seconds later).

Trying to, fly a kite, ignore a wailing baby, keep an eye on K and yelling to get his attention every time I got the kite up in the air, was so stressful, that I did not realize other people might be watching us.

Nothing more frustrating than, "concerned" middle-aged lady out for a walk or whatever, glaring at you failing to do pretty much everything, from across the field. (Why is this woman yelling at her child, while her baby cries like a tortured wolf cub). I eventually gave up, picked up the baby, and K resumed his bag of chips. She decided to leave. I am so glad she did not walk up to me and say anything, because I am not sure if I could have stopped myself from stabbing her aorta with my kite spine.

Anyway. The moral of the story is, no matter how much I try to convince myself I can do everything, I cannot.

After giving up, I made the 5 minute drive back home and of course the baby had decided to now go in to a deep sleep. K was in a great mood today though and I couldn't help drawing lots of depressing parallels between my kite flying skills and my life in general. (My life is like a kite that never really took off or this worldly life is like a kite that soars for a bit and then comes crashing down and so on and so forth).

So we are back home each of us in front of our respective computers. I am typing this post, while K plays his ABC game.

I did however teach myself how to fly a kite.

It is a really nice day outside.

Amaranth Flour (Rajgira) Roti

2011-05-28T20:27:00.000-04:00

One of our local homeschooling moms sent me this recipe for a Gluten Free flatbread. K loves bread and although the Jowar (Buckwheat) Roti I usually make tastes great, it takes more effort to make.

Jowar roti is a bit sticky and the flour has a bland taste.

Amaranth flour however has a wonderful flavor. The health benefits of Amaranth are easily available online, but essential amino acids and high iron content were what I was looking for. Plus great taste of course and ease of preparation.

Ingredients

2 cups organic amaranth flour
1/6 cup organic potato starch (Bobs redmill)
1/3 cup organic arrowroot starch (bobs redmill)
pinch of salt
olive oil

Preparation

Mix flour and starches and salt. Add boiling water. You could start with one cup of water and add slowly checking the stickiness of the flour. You don't want runny dough! So caution is best. Mix with a spoon first because it is hot.

Get some olive oil on your hands and knead.

Rolling this dough was a lot easier than the Buckwheat. It lasted well over night in the fridge too.

The above will make maybe 6-8 or so medium size rotis.

Here's K "kneading". He preferred punching. Notice the scooter in the back. That has been the mode of transportation around the apartment for a few days. Its all very interesting with a new baby rolling around on the floor.

Delicious with stew beef or any vegetable or lentil curry. I added some black seed to the dough today and ate the roti with plain yogurt and honey! Yumm.

Respecting people's space - not sure how to teach!

2011-05-26T21:42:00.000-04:00

I ventured out to my first ever shopping trip with two children today. I haven't bought anything from a store since my sister was here last summer, so almost a year. If we go to the mall, it is only to walk around, have a smoothie, hang out in the nursing room and come back.

Now that it is summer, the mannequins are sort of naked. So I picked out some walking pants and maxi dresses while K stroked the mannequins' exposed bits. Sounds disturbing. And it is. Looks even more so. But I sort of ignore it right now because I am selfish and I want to buy pants.

He chose to accessorize his "growing out of my clothes" look with a pair of purple swimming goggles. Not sure why. He knows they are swimming goggles and not sun glasses. I explained we are going to the mall NOT the pool. But he insisted.

Thankfully he eventually decided to just hang them around his neck. God knows we don't need more reasons to attract attention to ourselves.

In the nursing room a posh lady walked in with her cute baby. K immediately walked up and tried to touch the baby, but even as he approached the lady gave him several resounding NOs! And was holding out her hand almost ready to push him if he hadn't noticed her No's. A disgusted look from her was our cue to exit. We were done anyway. Usually our nursing room experience is much nicer. Most people don't mind little kids wanting to come up to, or touch other little kids.

Reminds me that I cannot always protect K from prejudice. Next time you see a scruffy looking person, not perfectly dressed or groomed stand next to you in the bus, elevator or train, don't immediately be disgusted. Think positive thoughts. Its hard right?

We are getting used to just shrugging things off and moving forward.

Social Boundaries

We are having some real personal space issues with K these days. Naturally, now that he is not a toddler anymore and cannot get away with going up to people and holding their hands. After the initial shock, most people either laugh or say something friendly. I think most of them understand that something is "not quite right" with the kid.

I do cringe sometimes though when K will look at some random person in the elevator, say hi to them then hold their hand and kiss it! Or he will hug them.

I am not sure how to explain to him that he cannot go up to strangers and touch them or their stuff (or their babies), let alone kiss or hug them! He is a sweet, friendly boy, and he just treats others the way we treat him at home. How to explain "strangers"??

"Stranger caution" is something that typical kids are hard-wired to understand. I see it in baby Poi. She gives cautious smiles to strangers, and will start bawling if a new person holds her. Even as they pick her up, she constantly fixes her gaze on me and eventually starts to look at them and cry. She will continue to watch them and cry and has to be distracted with some other object. She will still continue to look around and check for them!

I don't know what to do about this new social boundaries problem. He does say Hi and Bye to people and keeps repeating it so they keep giving him the same response, until they walk away and can't (or pretend not to) hear anymore. But he will often also grab their hand or touch them. I guess he is looking for something more and doesn't know what to do. I don't want to suppress his desire to reach out to other people, and I don't want to teach some rote interaction. I am not sure if at his current expressive and receptive language level I can even teach him any rote thing he could say and when.

What have some of you more experienced parents of kids with autism done about it?

Love my local homeschooling families

2011-05-25T10:05:00.000-04:00

Throughout my journey in Autism (so far only 2.5 short years since diagnosis), I have been blessed with countless mercies from Allah (Glorious and Exalted) to help me navigate Autism and make sense of it.

If I begin to count, it will fill pages and I will not be able to get anything done today. But a very short list of some of the top ones:

Being able to move back to Canada after diagnosis
Finding loving relatives welcoming us with open arms
Finding the perfect therapists from day one
This location where we live, with a beautiful creek flowing behind our building and acres of parks close by that I just found by accident while I was alone without my husband here and very stressed at the time.
Great neighbours
Lots of guidance and increased understanding of the disorder from the best of Guides (Allah).
Halal provision and husband leaving job in the finance sector after years
Muslim homeschoolers
Good friends

Just one glance and I am regretting even making this list because I know I have left out so many other important things. But Allah knows that I know what they are so its OK. Alhamdulillah.

But our local homeschooling families are a big gift for me for a number of reasons.

They provide a stable network of families who really strive to teach their children in the best manner, live in the best manner, share and encourage good with others.

I have never met people like this before, so it is a real learning experience and a means for me to improve my behavior, speech and way of life.

Autism through its very nature can not only isolate a child in his self-involved world, but also the parent. The parent can become overwhelmed and obsessed with the disorder and its huge demands on their time and resources, burning us out. So it has been a great blessing for me to find a way to do something for my child, while also doing great benefit for myself inshAllah.

It also provides K an opportunity to meet and mingle with the same group of people in various environments. We got something better than a private autism clinic, or public school. Allah gave us our own group of sweet children, that we can meet when we like, and who will accommodate us and want to learn about us and who are eager to help us fit in.

It takes patience for people who know better to forgive the mistakes of those who don't know better. That is what makes a good teacher. So my local homeschooling mothers are not only teachers for me, thanks to their patience with me, but also for K, because many times I notice they prep their kids and try to teach them about K.

Here are some photos from a farm trip we did with them recently. Its great that all the children are in his age range too! May Allah reward these families, protect them from all harm.

I read recently about three types of rocks in the explanation of Chapter Baqara (chapter 2, ayat 74) of the Quran. Allah uses the parable of rocks to describe kinds of people.

There are rocks that fall down and I suppose erode. These are people who out of fear of Allah become humble.
There are rocks that split open and water comes through them. These are people whose faith causes them to bring goodness (water equates with goodness) to those around them.
Then there are rocks that burst open and many many springs and rivers gush from them. These are the people whose faith brings forth unlimited good to those around them.

We have lots of such rocks in the Muslim community here in Toronto. We are very lucky.

How To Benefit From Haters

2011-05-23T18:04:00.000-04:00

Often times when you strive to do some good, such as revive your faith, especially in older age, it is no surprise that you are met with some degree of skepticism from many people.

The sister who started doing hijab, or the mom who started taking some classes to increase her knowledge can in their excitement forget that not everyone is as excited and full of beaming joy as she may be.

The real issues start to surface when you start to enjoin the good and spread the khair. People are often fine as long as you don’t say anything. The moment you open your mouth be prepared to be drawn in to nit picking arguments, often for no reason except to make you look like a fool or just awkward.

Patronizing remarks and other judgemental attitudes are easy to deal with if you are sincere in your intention to do things only to please Allah.

It is therefore often best in most situations to remain silent. Being quiet is also the best way to increase your humility. Just because you know something, doesn’t mean it should always be announced. You don’t always have to be the smartest person in the room or conversation. Know when to walk away from an unproductive discussion and never lose your temper or cool. I have since the course of my personal Islamic revival, systematically failed all of the above at some point. Hopefully some lessons have been learned and there is no way to move but forwards.

However the real awkward tests come from those who insist on reminding you of your past sins. For reasons known only to such people and to Allah(Glorified and Exalted), there will always be that one person who will make it their mission to make you realize who you used to be, and how your current efforts are doing nothing to convince them (even though you are not trying to convince them of anything!).

They will constantly try to test you, provoke you and when you eventually fail, they will jeer at you. (Often times these are the same people who played and laughed along when you were doing wrong. Notice a pattern here? Why didn’t they stop you before? But now that you have something good to say and do, you are making them sick.)

So what should you do?

After some contemplation I see the following course of action for myself.

When being called names and being taunted about past sins, remember that everything is a sign from Allah and His decree. So this too is His decree for you. Allah only wants what is best for you so this too must be in your best interest.

How?

You may have forgotten your past sins so a reminder will make you turn even more desperately to Allah in repentance. This has to be a good thing.
You may have developed some hidden arrogance about your new found knowledge and blessings of Allah, so nothing like being humiliated to be reminded to remove any traces of self-importance or kibr (arrogance). This too has to be good for you surely.
You may have forgotten that some people just need to be removed from your acquaintances as they have nothing of benefit to bring to you in the form of knowledge, encouragement or positivity. It may be a great reminder to clean up the list of people you interact with without feeling guilty about ditching them. This too is a good thing for your general wellbeing.
It may be a reminder that you need to focus more on your tawbah (repentance), strive for a higher standard and increase yourself in humbling yourself before Allah through maybe other acts of obedience like fasting or night prayer etc. How is that ever bad for you?

So if you are feeling a bit jaded as a result of such behaviour from other people who really want to hasten to bring you down because they have some delusion about knowing you better, then there is a lot of benefit in it if you look for it.

What not to do

Don’t call your mom, sister or husband to discuss. This may lead to backbiting and all hell will break loose on you (literally).
Do not sit there contemplating why this person is behaving in this manner towards you. You will start thinking ill of them (because their imaan is weak, because they are a mean person, they are jealous of me etc.) This is a waste of time and leads to further confrontations and falling in to traps. This is hard not to do, so distract yourself (see below).

Most importantly:

Seek better company. Find people who have more knowledge, whose behaviour you want to emulate and who are setting an example of service to Islam and beautifully balancing deen (faith/religion) and dunya (world). Critically analyse yourself constantly. Find these people, hang out with them, follow them around and copy them.
Make a lot of dua (supplication) for yourself.
Protect yourself. Seek protection from Allah, and if you seem to find yourself in such situations a lot, then protect yourself by staying away from them. Loyalties are only for the sake of Allah, not because someone helped you with your homework 15 years ago. Don’t let niceties, guilt or fear of angering people, get in the way. It is after all a matter of life and death (and Hereafter). Take no chances. This is hard. Keep trying.
If you slipped up and fell in to someone’s trap, then seek tawbah and forgive yourself. No need dwelling on it. Distract yourself with something like remembrance of Allah or some other act like going out and doing something nice for someone.
Write a long blog post narrating your thoughts and hope people will relate and benefit. InshaAllah!

Also try to forgive. Forgiveness doesn’t just mean you forget and say I forgive them, but you actually want GOOD for the haters and don’t want Allah to punish them. Yeah right. I am not there yet. InshaAllah I will get there.

Inna lillahi wa inna ilayhi rajioon. To Allah we belong and to him we shall return.

Some Kind of Mom

2011-05-21T22:53:00.000-04:00

Some days I want so much to help my son

But I am not sure how

I want to help him enjoy something

I want to help him feel competent

My eyes follow him around the house as he runs and skips

I wish he would let me hold him and help me calm his body

I wish we could share a laugh together or a smile

My mind is always searching

If there is a way for me to show him

To teach him and to know him

Some days I want so much to help my son

But I am not sure how

When he is happy, I wish I knew

When he is unwell, wish he’d look for me

I want to be his mother.

Trials and Gratitude

2011-05-20T09:28:00.001-04:00

A person loves their health, wealth, family, children, environment and peace. Allah (all praises to Him) can choose to test you through any of these.

It is hard to say which is hardest. Would you rather be blind but have lots of knowledge and wealth? Would you rather lose a child than your entire family to war? Which child would you rather lose? Impossible questions to answer of course. A person cannot make these choices.

The trial of children however would probably classify under ONE of the hardest. A person loses his wealth and health looking after them and wanting the best for them.

But as a Muslim there is an even harsher test for mankind. The test of Faith or Emaan or the loss and weakening of it.

So although usually we count our blessings. It is important to count the trials, as they too for a Muslim are a blessing from the Most Merciful.

So Alhamdulillah (All praises to God), on this Friday, I am grateful that my trials, difficult as they may be for me, are not of the worst kind.

Alhamdulillah for Autism which brought me closer to Allah. Due to which Allah has opened for me doors to seek knowledge and find righteous company.

Alhamdulillah for K.

Alhamdulillah for the hardship of being on my own without family members.

Gratitude has three aspects:

Gratitude of words.
Gratitude in your heart. (That you indeed mean when you say I am grateful).
Gratitude of obedience. (That you indeed obey all, and not some or what you fancy, of Allah's commands and stay away from the prohibited).

InshaAllah everyone is doing all three this Friday and making the intention to keep doing it until the next Friday and so forth.

Happy Friday!

Nemo Emotions

2011-05-19T18:26:00.000-04:00

Here are the many faces of K during a Nemo movie.

He still screams and cries with tears when Dory and Marlin are in the Whale. And he also smiles briefly when Nemo reunites with dad, only to start crying again when they all get stuck in that giant net with all the ugly fat fish.

He usually starts getting anxious just before the scene, saying "No Nemo", but he still wants to watch the movie. I can't provide any comfort to him or help him regulate his emotions.

And this is what the 100th time we have watched this movie?

The dilemmas of running a home autism program

2011-05-18T10:32:00.000-04:00

And that's me pretty much. These days anyway.

I am in a place of overwhelmedness with regards to how to help K.

The great betrayal

Since the last months of pregnancy, K has definitely picked up on the distance between me and him. In the beginning he tried to be adamant about having me around on trips with his dad and clinging to me when the Therapists were here, but he sort of gave up.

We have now entered a strange phase in our relationship where the trust between us has deteriorated significantly.

We have betrayed him by having a baby pretty much. Regular kids too go through this period of loss of trust and uncertainty after a new baby arrives BUT let me tell you, no in fact let me challenge you, to try and and earn the trust of an autistic child.

K had a really hard time adjusting to the new baby. He can kind of tune out her crying, but even the few minutes I get with him during the day alone, (some days not even those!) are almost always interrupted and as soon as he hears that teeny scream of the baby, he has this look on his face which says he understands that whatever was going on is now over.

Unlike typical children he cannot find a way to engage with the new addition. He tries really hard though to make sense of it all, and I try to find roles for him in the baby stuff like bath time and diaper change etc, but at the end of the day we have a super clingy baby who will not be left anywhere for even a second and an attention deprived K sort of giving up on his relationship with me.

If I try to join him he escapes. If I so much as stand next to him while he is looking out the window he escapes.

So I am kind of stuck trying to find days I can just take him out and walk around, pack picnics or such. But the weather has been specially unkind so far and since April we have had a non-stop cycle of viruses.

K's therapies and therapists are another story altogether. On the face of it we have the best people working with us, but I am relying heavily on them due to the demands other things are making on my time like the baby and just basic stuff like making lunch or taking a bath!

It is painful for me to stand there and watch a session taking place where the therapist is making all the classical mistakes and I can do nothing but retreat to the other room with the baby and just stick my head in the sand.

I hate it. So much.

My husband does keep reminding me that it is a small phase in our lives that will soon get better. I am not of the opinion however that things just get better magically on their own. Kids with autism don't just magically learn to cope with things without the right supports in place. But I need help and I have help, its just not the right kind of help. Everyone makes such grave mistakes when dealing with K and they just don't see it.

Such as:

Over prompting
Focusing on the activity too much
mindlessness
relying on tangible reinforcement too much
Doing activities that may be cognitively within his grasp but are far and BEYOND his regulatory capabilities.
Not enough communication between team members
Too many team members
Inflexible session timings

And they don't even realize it. Somethings people just take as the norm, because that's life, like inflexible session timings. Therapists have other clients, they can't just flip things around to suit the child's needs. Which is in itself contradictory to their purpose for being there in the first place.

Every day is like a series of steps to get to the end of the day. And its starts all over again the next day.

I don't know what to do. I am just failing him and there are no solutions except just wait and wait and see.

And this is all after we have a good team with good knowledgeable people!

Ideal situation

I fire everyone
Move in to a house with a yard
Hire one nanny
Get my life back on track with K

Its so tempting. But we can't right now (or can we?)

K will start getting funded from July. The anti-autism, anti-child, anti-family, autism funding program offered by the government of Ontario, requires that we have a 20-25 hour per week program for the child. That there must be a Psychologist overseeing it. A clinical supervisor and a bunch of therapists. There must be table work and there must be certain targets that must be met.

There is no other way that the government will support my family's needs. I feel cheap. Like I am letting K down so we can get some financial assistance.

Give or take I give it 18 months to 2 years before the government kick him out of the program. That is their budget and it is a system based very much on economics and not on individual needs.

In an ideal world, the government would give us a big tax relief every year, or a small lump sum that we could spend any way we liked to help our son. That's not happening of course.

Perhaps until then all I can do is keep my head stuck in the sand? Because there isn't much else I can do.

Cherry Blossoms

2011-05-15T08:34:00.000-04:00

Despite the worst flu, ever, we made it to High Park to see the newly bloomed Cherry Blossoms.

The sweet scented, delicate flowers sprout from gnarly looking trunks. They keep pruning them though. But I caught some sneaking out of spots on the trunk.

K did enjoy them for a few seconds. He wanted to shake them and watch them fall, of course.

Don't have to wait for the weather to be bright, shiny and 20 degrees Celsius. Rain and fog is also weather to be enjoyed. Everything was damp, fresh, still and as it should be. I remember back in England it was always like this, so all our park trips were in wellies and rain coats.

All Praise to Allah, who created this and all that is even better than this.

Some early observations about my baby daughter

2011-05-13T16:31:00.000-04:00

I have been keeping some notes about baby Poi’s development. It isn’t a series of data logs or some sad worry-driven attempt to check all the milestones or anything, but more like an awestruck student or journalist fervently jotting things down that blow their mind.

Here are short summaries

Referencing (also known as looking at a person)

Baby Poi learned to look at us in the first couple of weeks of her life.
At 6 weeks she was able to give a slight smile, and was not uncomfortable being held by others or in other people’s houses. She cries if K kisses her or is rough with her.

At 2.5 months she started to display a strange fear of new sounds, places and people. She knows if she is in a new apartment or home or being held by a new person. This makes her so afraid that she screams, looking here and there, and is inconsolable, even with me. She would not nurse to calm down but rather had to be taken somewhere quite like her car seat and rocked, while fixing her gaze solely on me the whole time.

She does not respond to her name, nor has any instrumental referencing (to ask for objects etc). She also cries if her dad holds her too long. She only feels safe with me.

At 3 months she routinely references my face if I make strange noises or sounds, as if confused or searching for a meaning. If I smile she smiles. If I make those sounds again, she smiles. She is clearly borrowing perspective about new things from my face. Her emotional referencing is laying its foundations and I am the reference point for emotions and new experiences.

She is not bothered so much by K’s “hard kisses” and does not cry easily if he holds her now.

At 4 months. (i.e. present day)

She has learned to reference instrumentally (i.e to ask for things). If I give her a lick of pancake syrup, she turns her head to look up at me (a difficult job for a 4 month old who is still learning to hold her head up for long periods). I give her more. I stop. She looks again. This goes on for a few iterations. She gets excited, kicking and doing air punches to reach for the table. She looks away for a while. She comes back to the pattern for more syrup.

For another half hour after breakfast is over, she is trying to grab either my finger or my husband’s and sticking it in her mouth. Still anticipating syrup? She can recollect that memory.

She laughs out loud now.

She turns to look when you call her name.

She still cries when people hold her, but is happy to gurgle and try to engage them with cooing sounds if she is in my lap. I am the reference point for the exploration of her world.

She routinely reaches out for whatever is in front of her. She laughs at K if he is jumping or doing something very physical and repetitive where she can see him. She coos at him and hardly ever cries unless he pokes her very hard or causes pain.

She is uncertain around him as his responses to her coos and other familiar patterns are not predictable.

She can be entertained with books, toys and the phone. She wants to manipulate things with her hands and put them in her mouth.

She starts working the moment she wakes up, she is focused, industrious and very persevering.

Baby Poi rolled over and won’t stop. She cries to get back on her back.

Baby Poi has a different relationship with everyone in the house.

She stares at and studies K. She is still a bit nervous when he just runs in to her to kiss her and abruptly leaves. She tries to coo at him or reach out to him if he is nearby. He either does not respond or gives her a “hard kiss” (which is his stim and escape mechanism with us).

She is always trying to get her dad’s attention through cooing, laughing and kicking excitedly. Now she will stay in his lap and feel safe too rather than just with me.

I am however her main guide. In unfamiliar places like elevators, she is very serious and constantly studies my face. If random people look at her, she immediately references my face. She routinely gives me smiles for no reason. Her referencing is now beyond instrumental or emotional. It is multifaceted. She is looking at me for reasons I don’t even know. When I hold her close she makes sweet purring sounds. She can distinguish that proximity as being something special.

Patterns

Baby Poi does not know what peekaboo is yet. However she can sustain other patterns.

If I make a repetitive sound like smacking my lips and smiling broadly at her, she laughs. When I stop she goes completely serious (she does not have a residual smile for the pause). She can sustain this pattern for long periods. However if in between I lengthen the smacking lip sound or the pause in between, her response is sometimes different. Her smile is more cautious or she stays serious almost confused. Which I guess means that she is not only following the pattern’s repetitive actions but ALSO its timing. If the timing is off, she goes back in to a state of uncertainty.

Her laugh is more excited and louder if the pattern involves physicality. For eg. Kissing her on her neck and then smiling at her, or poking her gently in her chest while making a broad , wide eyed open mouthed “haaww” sound ( that you see people making with babies and kids. Why do we do this? Across cultures, I have seen this. Is it God’s programming?)

How all this makes me feel

Baby Poi, to me is an enigma. She is an experience so intense and consuming in its nature, that it stuns me in to a grateful silence every time I behold anything she does.

Baby Poi reinforces me constantly. She has no words, and she does not do anything for me. But her smiles and her desire to study me and from me, is the reinforcement. If you think about it, it is perhaps the strongest reinforcement for mankind. And I realize after having her that I have never known what it is like to be a parent, because I have never really been treated like one by my son.

Baby Poi reminds me of gratitude. She isn’t grateful in the way that people are grateful, but her developing bond with me is gratitude. In turn I am reminded to be grateful to Allah, who has shown me, by depriving me through autism, and providing me through this baby, what gratitude means.

I live in this imbalance therefore where K’s increasing disconnectedness from me overwhelms me with a kind of grief, and baby Poi’s eagerly growing bond with me keeps me connected to hope.

Crazy wildly flapping bag kite like thingy

2011-05-06T20:10:00.000-04:00

Windy days are not to be wasted indoors.

However when it is cold and windy, and you have a new baby that is still overwhelmed with things like wind and bright light, then you have to stay inside.

But we also have a boy who is fascinated with the wind. How do I know this?

One of his first verbal declarations was, "Oh its windy". (We had just moved from England, so no surprises there).

K has always enjoyed watching and chasing his hats blown away by the wind. He gave me a confused, inquiring look when he saw the wind causing ripples in a puddle in the park last week (priceless for a kid who doesn't look at you much!).

He likes holding himself against the wind with his arms out.

Pinwheels spin. Enough said.

There are various Curious George episodes (obsession) that include Curious George being flown away via balloons, kites or something.

Like many autistic kids he likes to watch things fall (what is it??).

We live on a really high floor. (The downstairs guy is nice enough to leave a bag of our belongings outside our door). Don't stress, there is a huge padlock on the door and he is never outside unsupervised.

Last week we had a mad windy day here in Toronto (like highway-sections-closed-impossible-to-control-child-plus-stroller windy) and found ourselves stuck at home early morning. All I had were plastic bags. And then there was....

Crazy, wildly flapping plastic bag kite-like-thingy attached to a string and a very happy boy trying to control it.

(He actually wanted them to fly away, and let one bag go, proclaiming "Oh no, it fly away like a curious George"), but was warned he would be taken back inside and deprived of crazy flapping shopping bag if he let any bags go in to the atmosphere.

We have repeated this on other days with different bags since then (but not with as much success on that one crazy windy day).

How to take a walk in the park with Autism

2011-05-04T16:53:00.000-04:00

K's rigidity and obsession with perfection (aka OCD) will not allow him to do even the simplest of tasks without working himself up in to a mess of teeth grinding frustration.

I really feel bad for the kid, because he is smart and tries so hard. His disability gets in the way of everything he wants to do and tries to do. He is therefore unable to enjoy himself. He is always worried about getting it right, pleasing someone or not upsetting someone.

Wailing at markers because he can't make the right kind of line/picture/alphabet. Screaming because he cannot find the specific shirt that goes with his favourite shorts (which I am going to burn/throw away soon). Complete non-compliance and disinterest in the park because we did not take the train to the park as usual, but drove there instead.

We used to think we can "behavior train" him out of it. But its not just behavior. It is real frustration from a real kind of fear or something. It needs limit setting and empathy not suppression and control.

Why won't ABA work for him in this particular scenario?

ABA works for us in many teaching situations. But not in these. In this situation it makes things worse.

Trying to fight control with control is like missing the point completely about where the OCD is originating from. An underlying extreme anxiety related to that particular activity/situation or something else that may not even be known to you, or maybe even him.

Meeting control with control only makes anxiety worse. The more you control someone else's OCD the more it morphs in to something more sinister. Some examples that I experience with K would be, incontinence, teeth grinding (even in sleep), a cycle of self-punishment and repair, desperate need to control the other person's behavior and many others.

What to do then??

At the risk of sounding like a broken record, patience and rational thinking are the only effective tools in these situations.

You must not take it personally.

You must have some level of empathy for the difficulty he is experiencing.

Try to cut him some slack, without crossing limits **

Almost always assume that the child thinks you know what he is thinking. He may have an entire agenda in his head that he thinks you know already, and he is in trouble or being punished because you are not letting him do it. When in fact you have no idea what he is thinking!

If you know this, accept it, relax, stay in the moment, patiently, consistently, you will find the situation de-escalate quicker and you may even come out the other end more successful.

(** for eg. You are in in a new situation, he is resisting and trying to establish control through strange demands or just working himself up. Have some small routine type thing ready to establish order in his confusion. For eg, when in nature/park, we often take a snack. He knows this and so often the best thing to do in a new park is to maybe find a quiet place, give him the snack then proceed.
Or when walking down the block he always has to put sticks through the storm drain gutters. One stick down the gutter won't kill anyone, so I will allow him a stick or two and then we move on. However he is never allowed to throw rocks/sticks around or perseverate. That would be crossing limits, if that occurs then for sure consequences are required.)

It just depends on what the goal is. You cannot train/block every behavior. If throwing a few sticks in the gutter means he will appropriately participate and try hard to be engaged with you for the next long while, then why should I sabotage the entire experience? A successful episodic memory is the goal, always. Not one of failure.

Repeated consistency in such situations sets a tone for your relationship with K.

At the end of the day, you have a kid who is trying desperately to make all this work.

It is very easy to sabotage the relationship by always giving consequences for behavior and increasing demands on him. But sometimes all you need is to make him feel less wrong and more right.

Finding the tiniest moments for positive reinforcement is also very important. Look for that window of opportunity to reinforce with praise etc but be careful because these kids are not dumb, and know when they deserve the praise. Faking usually does not work with K.

Keep it functional and natural. If he is pulling on your arm to perseverate on his gutter/sticks stuff then bribing with candy, or going back and starting the walk again until he complies is pretty unrealistic.

(I have seen ABA therapists do this meaningless exercise! Walking around the block with a piece of paper marking the discrete trials!).

Sitting and waiting out the storm of resistance (perhaps even blocking the drain, or physically standing in his way without touching him) is best. SET THE LIMITS in your relationship. When there is the slightest window of opportunity for reasoning, distraction works well and positive reinforcement for ANYTHING worth reinforcing will hopefully repair and build the trust.

Keep the mood light and don't let him get to you so he knows you are really on his side. This way if you have to change your tone/face to give consequences for behavior, then you are more effective as he wants you to be happy with him again and tries really hard.

Go out again the next day and repeat :D

Recall the successes when you get back home. When I list to him all the things he did right, he always reminds of the one he did wrong. "You whining", he says (He uses "You" for himself). Or "You threw the rocks, why you did that K!", he will remind me. I try to casually disregard it, "Yeah but you did xyz really well, you were great". Just shows he is disappointed in his own failures and hangs on to the negative.

Drawing - must be perfect

2011-05-03T10:59:00.000-04:00

K has shown an interest in writing and drawing. Last year all he did was draw a face. It was repetitive and he would accept a new feature to the face but would not accept a whole other drawing.

This year I find him opening up to the possibility of other things. His rigidity around drawing, I now finally understand (doh) was because of his knowledge of his incompetence.

Typical kids will draw a blob and after being reinforced by the adult, they will be quite pleased with their blob.

K will draw a blob which was supposed to be a train and doesn't matter how many times you tell him its wonderful! Wow! Masterpiece! He knows its a blob and he doesn't care for such ego-building social reinforcement. This is because he has autism.

However he is also 5 and not some art prodigy. We are still working on his pencil grip.

I love that he has an interest but it causes him a lot of frustration. He will wail, whine, smack himself in the forehead and keep erasing and re-doing.

I am trying to teach him ways to make it easier for him. So if he wants to draw a house, I made four dots (because his lines weren't straight and he was punishing himself for it). We have lots of stencils too and use other things like chalk and cut up crayons to help.

Yesterday he did one by himself, by drawing his own four dots. He seemed pleased with the result.

When asked what it was, he said "Its a Moni Hala house, its a Ibrahim house" - (Moni Hala = my sister, and Ibrahim = my little cousin brother, 10 yrs old, he loves going to their houses).

Notice he is still doing the fist hold for the pen. He reverts to it when I am not looking.

So where did we go?

2011-05-01T13:30:00.000-04:00

When thoughts overwhelm a person, they will often seek seclusion. In our case really it was a series of realizations, life changing events (having baby) and need to critically analyse our state that led me to stop doing most of my extra curricular things (one of them being blogging).

Realizations

Going through my posts I realized I was not proud of most of them.

There was much ingratitude, ignorance and whining, however subtle or hidden between lines, it was there.

There was over sharing. There is a fine line between honesty and stupidity.

Our words will be the most formidable testimony against us before God on the last day, and I have not done very well in that department. Hence the desperate need for reform in every aspect of expression. This is a work in progress and very difficult.

Speaking without complete or accurate knowledge. This is a very grave sin and I want to avoid it God willing.

Seeking the approval of people. If I am questioning why I really wrote a post, best to not post it.

A mission to do everything to please Allah, made me realize I am seriously unequipped to go on such a mission due to my lack of knowledge of my religion.

Reform

If you are one of my (handful of) regular readers then you will notice many posts missing. They have been removed.

I am going to, inshaAllah (God willing), try to use my blogging and any Internet presence to either provide some service to the people and to please Allah. Again figuring out how is difficult, especially if you feel you have nothing to provide!

The blog therefore will try, its best, to fulfil this purpose to please Allah, instead of being a sad ode to the trials of life.

I am also on another mission of self -improvement for the sake of Allah, so I may not have time, but hey I have already done three posts in one week, so maybe I will make the time!

Raising awareness for autism

Why are we raising awareness? What will it accomplish for autistic individuals? A very important question and what is the best way to go about raising awareness without complaining and therefore being ungrateful about the blessings Allah has given to my family, that is going to be a real challenge. How to talk about autism with the correct Islamic perspective?

Going beyond talking, and translating awareness in to action. This is me getting ahead of myself, because until we carve out a definite picture of our purpose in life in relation to our Creator, how can we be off any use to anyone else around us? Have to do the basic stuff first and maybe Allah will help me figure out the rest.

So thank you for coming back and I will try to keep my promise of replacing the old with a better new!

Please feel free to email or post ideas on how you feel I can start to reach some of my goals - say anything!

GFCF Friday Pancakes - Happy Friday!

2011-04-29T19:26:00.000-04:00

Friday is a gift from Allah (glorious and exalted is He) to the Muslims. So a while ago I decided I was going to try and make Friday sort of a big deal in our house. Culturally Friday has been a day off in Muslim countries, until a few years ago they started to change that to keep up with the business days and economies of the West.

So children today are sort of deprived of that anticipation of Friday that we had. From breakfast to dinner, it was pretty much a celebration (also because it was the weekend). Bathing, wearing your nice clothes, going to the mosque, shopping and hanging out with the family. Unfortunately in the Pakistani culture women never went to the mosque, although I heard this is now changing, thankfully. It is a great injustice I think. It is a missed opportunity to keep women away from mosques in Pakistan and the consequences of keeping the women generally away from Islamic education has caused the biggest loss for our generation, many just left to wander blindly in our ignorance.

Anyway, it is a massive topic which cannot be addressed in this post, because this is about pancakes.

On Friday we have pancakes for breakfast and I would take Kon our infamous bus/train trips (that I have often blogged about) as a special treat. We also have no therapies on Friday and try our best to make it to the mosque to be with the community.

Here is the recipe for Friday pancakes. It does keep changing though, which is the best part about pancakes, you can't go wrong!

INGREDIENTS:

My measurements usually go by "some of xyz" but I tried to keep track of quantities today.

Organic Brown Rice Flour 1 cup
Organic Tapioca Flour 2 tablespoons
Organic Coconut Flour 1 tablespoon
1 really ripe banana
1 egg1/4 tsp baking powder (maybe 1/2 ?? I am bad at measuring)
1/4 cup ghee or sunflower oil (or was it more? aargh)
Almond milk - seriously this I just kept adding until I got the right viscosity. Lets just say 1/3 cup! (or more!)

Sometimes we add cinnamon. My husband (if he is around to make them, wants chocolate chips in his!! K hates chocolate).

The only time K will set the table mindfully on his own, without being asked is for pancakes.

Mmmmmm.

After The Storm

2011-04-27T21:54:00.000-04:00

When there is a thunderstorm forecast one must immediately pack a picnic and head out to the nearest open space, preferably near an open body of water, for instance the Credit river. Because the smart nature lover knows that it is super fun watching a thunderstorm from a covered picnic area, and after a storm there is glorious weather and sunshine. And no crowds....

and puddles...

and worms...

and dead toads with warts and all...

and cool fireman doing river rescue drills...

with their cool fire trucks just sitting in the parking lot for boys to jump off of...

every angle must be investigated...

Some people left this baby lying around. Poor thing. Maybe because she has giant ears?

And just like that, we are back!

Blog is Offline

2010-12-31T09:07:00.000-05:00

This Blog is offline, indefinitely.

InshaAllah I will replace it with something better soon.

Thank you. Will miss you all!

Bariah

Gluten Infraction chaos

2010-12-27T11:21:00.000-05:00

After two weeks of gluten-infraction induced stomach problems, night wakings, all-day screaming, violent ear smacking and serious dysregulation, K is back to his regular happy self.

All he had were a few crackers at a Chinese restaurant. They serve these deep fried wheat strips with the soup, and he grabbed some and stuffed them in his mouth. I hate grabbing food away from him, and next time I have to remember to ask them NOT to bring those with the food.

I tried to think of other reasons, like a "stomach flu" or something, but he was not ill, just seriously uncomfortable and irritable and the infraction timeline fit perfectly with his behavioral and regulatory deterioration.

Its all guess work, this diet connection.

He is smiling, and joking around again. He is able to sit and get through a book reading with me. He has stopped smacking his ear like mad. Not to mention no more rank, smelly gas!

We just helped him through the two weeks, keeping expectations low, giving him exercise, water, lots of soups and limited his sugar intake. Alhamdulillah it worked.

Here he is enjoying his favourite movie, Monsters Inc. The first scene is a bit scary!

Stranded

2010-12-17T11:03:00.000-05:00

There was a time when pregnancy and birth was a family affair. There were a host of women relations, neighbours and friends involved in everything from giving advice, making preparations, administering care to the mother before and during birth, to postpartum assistance and raising the child!

I don’t know what happened to that model of family life.

Today, there is one woman. She gets pregnant and sees her doctor for a few minutes every few weeks. There is housework, other children and all the internal and external responsibilities of managing a home, raising and educating the children and providing emotional, nutritional and spiritual stability. You have a tired man, who plays the role of father, provider, nanny, occasional housemaid and emotional support for the mother. This is expected to work and people are expected to thrive and live fulfilling, stable lives in this dysfunctional model. There is a lot of social pressure for success.

However this isn’t really any kind of model except an overfilled, overstretched balloon of existence, bursting at the seams. There is no room for anything to go wrong, because then the balloon inevitably bursts.

But things do go wrong. Throw in this volatile mix a mentally challenged child, a chronic illness or any other sort of breakdown and you have people struggling to maintain any kind of normalcy in their lives. The people in this model of family life are slowly being driven either towards developing their own mental health problems or stress induced physical breakdown.

The education that my generation has received and the model of successful life that has been defined for us, inevitably leads the members of this dysfunctional family to believe that the only way to make this model work is the acquirement of material wealth.

If I have more money, I can hire people to do things for me and delegate some of my responsibilities. If I have more money, I can send my kids to a better school, so they can have a better chance at acquiring more wealth and therefore will never need the help of any other human being, because lets face it there are no other human beings around to help them, so the only to way survive is to purchase stability.
If I have more money, I can continue to support myself in my old age. If I have more money, I can leave a large estate and people to care for, for my disabled child. If I have more money I can guarantee my happiness. I can make this work, if I just have more money.

And that’s what everyone is busy doing.

There are no extended family members, no friends, no neighbours, no helpful strangers, no elders or teachers or guides around to create the stable framework of family life that is central to the existence of mankind. The sanctity of the family is at risk.

There does exist an economic, legislative, spiritual and social system that makes the family and all the needs of a human being the center of its establishment. This is a divinely ordained system, because none other than the Creator of mankind can define a system that can help creation regulate itself and sustain itself within its environment. This system is lost and caught in the throes of innovation, division, corruption and chaos. The casualty is the human being, the family, my family.

I, along with the millions of other stranded humans on this earth are fighting an invisible force of change. Some people are so lost in the battles they have forgotten who the enemy is, what side they are on, what their purpose in life is and even who they are.

So most likely in a few days I will be off to give birth to my second child, who is coming in to this world to become part of this unstable, dysfunctional entity we call a “family”. I am expected to fulfil all my worldly and spiritual duties and put in a great performance.

A beautiful Nasheed for Autism (with subtitles)

2010-12-14T20:44:00.000-05:00

I am so glad this song exists. I like the message in it of being patient with your child, of showing compassion, and also to look forward to the future with hope.

Khaled Today

Today Khaled went to Walmart with his therapist and she took him to the toilet. He loves hand driers (and all things machine) but he is terrified of those new hand driers that are really loud and expel air with real force.

He calls them "scary hand drier".

Today Khaled tried to talk about them over lunch and later in the evening.

Khaled: (Lots of gibberish sounds at first). You hand drier.
Me: Yes you went to walmart with Tina.
Khaled: Yes you walmart with Tina. You scary hand drier. You wash a hands.
Me: Yes its so loud, its scary.
Khaled: Yes its so loud. Scary hand drier. ABCD.
(There is a label on those hand driers. I think it says "Excelerator". He cannot read, but he calls that text ABCD because they are letters.)
Me: Yeah they are called Excelerator scary hand driers.
Khaled: You Chucky Cheese.
Me: Yeah you went to chucky cheese too. Its so cool.
Khaled: Horsey. Train.
Me: Yeah I love the horsey ride and you put coins in it.

I am excited when he brings up something to express himself, I don't care if he perseverates on it. These are the only words my son said to me all day. Some days he says nothing to us.

I tried to tape it, and get the story out of him again, but he doesn't like being taped too much and was having real difficulty saying anything to the camera. He was too dysregulated in the evening to even look at me or say anything or sit in one spot.

اللهُمَّ لا سَهْلَ إلا مَا جَعَلتَهُ سَهْلا وَ أنتَ تَجْعَلُ الحزْنَ إذا شِئْتَ سَهْلا

O Allah! There is nothing easy except what You make easy, and You make the difficult easy if it be Your Will.

Patience

2010-12-09T09:20:00.000-05:00

These are not my words, they are by someone called Dr McMullin.

I really liked this little summary of what patience really means and where it comes from. It does not just come from shutting up and putting up, but from a real change in attitude and who you are as a person. Which is why it is difficult and a constant challenge.

Patience in RDI - What Good Guides Do

While fidgety children may be told that patience is a virtue, a philosopher at University of Arkansas says patience is much more profound than passive waiting - it s "the living heart of ethics".

The self-restraint specific to patience is oriented to the other person's ability to act. Letting a young child take his time tying his shoelaces, for instance, requires holding yourself back from doing the task for him. This "hovering attentiveness" is recognition and encouragement of his struggle. Your attitude is directed not to the goal of tied shoelaces but to the child's achievement of that goal. It involves both a willingness to share one's time with the child and an acknowledgement of the limits of human agency.

"In patience I share an orientation to the other's future that is attentive to the struggle involved in its accomplishment," Dr McMullin stated. This contrasts with impatience, which can include an element of contempt for another person's abilities or a refusal to acknowledge the difficulties of an activity.

Impatience is "a type of rage in the face of human finitude," she said.

The impatient person who taps a foot while someone negotiates ATM instructions communicates a sense of being offended, even wronged, by the failure of others and the necessity of sharing time with them. The very fact that the other person is in the world seems to take away from the impatient person.

Patience is different from tolerance in that it "involves a deeper form of recognition and accommodation of the other's presence as an individual struggling to act in the world," Dr McMullin observed. A person subordinates his or her own wishes and goals to another's future, sometimes a future they will not share. An individual practicing tolerance simply waits for the other person to walk away from the ATM, while a patient individual encourages the other person to take the time necessary for successful completion.

"Though we may not be able to characterize patience as a heroic virtue, the ability to accommodate and forgive the limits of human agency in its struggle for self-expression is the bedrock of our public life," she said.

I felt after reading this article, that so many people think they are patient, when in fact they are just being tolerant. As a parent I switch between patience, tolerance and impatience several times a day and need to try to be more patient. For this I need to literally step outside of my own self and really experience the difficulty of my son from his perspective.

Also people tend to think that being patient will just drain you completely because it will be so mentally challenging to be in such a state all the time. This is not true. I feel that in a state of submission to the difficulty of another person, and a state of true empathy, we experience greater ease. Whereas when you are just gritting your teeth and being tolerant, or worse, being impatient, you experience greater exhaustion and frustration.

Missing Autistic Boy Found in Mississauga

2010-12-06T11:19:00.000-05:00

Robert Capovilla found after wandering off from his home on Saturday afternoon.

This happens a lot, with really sad endings. This was just down the road and it was a happy ending. I love happy endings.

God bless this kid and I am so happy for his family.

This could be anyone of us, high or low functioning, it doesn't matter.

At 4 years of age, K knows the way to our bus stop. I am not sure about the extent of his knowledge at 16, but I have high expectations. However when it comes to common sense, a sense of safety, awareness of the dangers of being on your own, those are hard to teach and there is no guarantee how much your kid will learn.

You can't chain a teenager to his bed. May Allah protect our children.

Canadian Association of Muslims with Disabilities

2010-12-02T09:19:00.000-05:00

CAMD (Canadian Association of Muslims with Disabilities) are a group of Muslims who are trying to bring about social change and opportunities for inclusion within the Muslim communities here in the GTA.

I joined this organisation last year and have participated in their monthly meetings and a social event they held last Eid.

Disability within the Muslim Community

Since I moved back to Canada with my son's autism diagnosis I have been eager to find other Muslims families living with autism and other learning disabilities. I have been keen to find ways to include myself in the activities of Muslims who are often blissfully unaware of the severity of autism and learning disabilities (until it happens to them).

Other than lack of awareness there seems to be a general consensus that "making dua and doing sabr" (i.e. praying to Allah and exercising patience) is going to solve your problems. This is the advice I often get from my community members, who are very loving and supportive of us.

I love my sisters and brothers in Islam for the sake of Allah. However only making dua and doing sabr is not going to make these issues go away. There needs to be programs and a genuine effort to include families and children/adults with disabilities in your lives.

But call for volunteers, space in mosques for programs, funding and other help is ignored or just met with a kind of helpless apathy.

I don't know what it is. So I will use myself as an example. I am in this now because I am personally affected. However if someone had called me or asked me to volunteer at some event for say the blind, a few years ago, when we did not have autism in our lives, I probably would have behaved in a similar manner. My husband comes late from work, I am pregnant, I have got little kids that need to be put to bed, its a week night and so on could have been my excuses.

People do seem to come out when there is a social event that involves food and sitting around tables and talking, but when it comes to a regular commitment to getting work done, that is hard. It is hard because it takes away from your regular routine, you have to choose something else over what you normally do in your daily lives.

You have a lazy teenager playing video games in the basement, or a university student who is out wasting time on nights out, but when it comes time for involvement in such activities, it is getting in the way of assignments, exams and other more important things in their lives.

Ask yourself why?

CAMD Effort

CAMD have been trying to secure space for a drop-in night for children and adults with disabilities to give their families some free respite and provide an opportunities for the disabled individuals to interact with others in the Muslim Community.

Most of the mosques in the GTA have refused to provide space for various reasons ranging from liability issues to costs, to "Who will lock up at night after you guys leave". Seriously? You mean none of the young brothers, and responsible sisters who are lounging in their homes can't spare a few minutes once a week to take on the responsibility of locking up a few doors?

Our organiser, who has been running this thing for 12 years made a point yesterday that if they had gone to a church, they would have got the facilities, and maybe even a few bake sales.

I was so happy to see a young university student and a grandmother who has recently completed her ECE at the CAMD meeting last night willing to volunteer.

Where are all the passionate supporters of Islam and reprimanders of sin? Come out of your homes and enjoin this good. Take ownership and responsibility for your brothers and sisters. Don't leave them to go asking for help from other people when you have the time, man-power and the money. Do it like it is for your family.

CAMD are now organizing a Drop-in Activity Night every Wednesday from December 1, 2010 to June 15, 2011.

Time: 6 pm to 9 pm
Location: Applewood Public School
3675 Thomas Street, Mississauga

They need volunteers to manage the activities. They need funding and support.

Now that you have read this and know about it, you are accountable for inaction.

For more information you can email camd@camd.ca or just contact me and I can point you in the right direction.

K reciting from the Quran

2010-11-28T20:28:00.000-05:00

Version 1

Version 2

Now if only we could teach him intraverbals and the correct use of pronouns.

I Love You "New Vacuum"

2010-11-21T20:48:00.000-05:00

These pictures (and K's love for our new vacuum cleaner reminds me of this song)

First Annual Sister's Conference Toronto

2010-11-20T21:59:00.000-05:00

I had the pleasure of attending the first annual sisters' conference in Toronto today.

I am tired but it's all fresh in my mind and I will attempt writing a post about it and see how I do.

There is something most awesome about being in a hall full of women, and even more awesome when all those women are believing women, my sisters in Islam.

The crowd was largely Somali, which was strange because there are so many Muslim women of other cultures and ethnic backgrounds in this city. It was the first time and I think a bigger hall and more advertising might have drawn in a more diverse crowd. I live in Etobicoke, near Rexdale and that is a largely Somali crowd, and this is where the conference was so I think that might be one reason for the Somali bias.

I have to say, that although I grew up in the middle east and have seen many Somali women in my life, I came across such beautiful faces today, the like of which I have never seen. Maybe I was never really paying attention. Somali women, your features are so unique and so sensual looking, SubhanAllah. I couldn't get over how lovely some of the girls were and how graceful they looked in their flowing Khimars. May Allah bless them and keep them steadfast on the righteous path.

There was a really good mix of speakers. The zealous and cheeky, the experienced and mellow, the funny and diplomatic and the soft spoken and witty. I really enjoyed every lecture and although my personal preference has always been the no-nonsense, strict teacher who tells you things straight up whether you like it or not, I did appreciate all the approaches. Not everyone learns the same and not everyone likes the same.

I had intended to stay for a few hours but I ended up staying the entire day and that gets a bit much for a pregnant lady in her third trimester, but there was enough yummy food and places to lean over and massage your belly. After all, it was a woman only conference (only the speakers were male).

The Misunderstood Muslim Woman

That was the theme of the conference. I don't want to go in to all the topics discussed and issues raised, because that could become a book. I will say however that I felt blessed to be part of a community that Allah has honored with the last testament. A conference won't turn you in to an overnight scholar, but I walked out of there knowing a few more things. I felt empowered and privileged to be part of this unique sisterhood.

Although I felt fortunate to be able to attend, I also constantly felt emotionally overwhelmed. I couldn't help but reflect on my utter misfortune at only beginning to explore my true purpose so late in life. I am no old lady, but gone are those young carefree days, when I had very few responsibilities besides my own education, living off my parents in my comfortable home with all the time on my hands. I wasted that time learning things that are of little use to me, and will be of little use to my Hereafter.

I felt sad for so many of my young family members who are wasting their youth in a similar way right now.

I felt sad for parents who are so misguided thinking they are doing their children a favour by placing all the importance on their secular, worldly education and leaving their true objectives on the periphery of their student lives. We are so afraid, so in love with the world and all that we want our children to have, that we are totally lost and getting weaker and weaker as a nation, as a result of it.

When I was standing in prayer with the ladies today, I noticed many very young teenage girls around me. One of the major signs of the more knowledgeable Muslim is in the perfection of his prayer. Her body language, her hijab, her silent movement and her confidence is a sign in itself of her superiority in knowledge and taqwa (god consciousness).

I was nowhere near that when I was a teenager. In fact many elderly women in my family have not accomplished the beautification and perfection of their prayer in their old age, that these young girls have managed in their early youth. MashaAllah.

So I also came away with a humility and an increased awareness of my ignorance.

That's all I have energy to write right now.

There were many discussions about Hijab and what is permissible and what is not. About family values, responsibilities of man and woman, relations between men and women, careers, marriage, sexuality, current perceptions of non-muslim people about Muslim women, the politicisation of the hijab, cultural baggage, education, financial aid, college, menstruation and so on. It was all just really great.

I am sure I will be bringing them up as my blog matures.

What I will say is that:

My dear sisters in Islam. Those of you who have perfected your hijab, who have the courage to do it in the right way, in the best way. Those of you engaged in this struggle at work places, universities, schools, within your homes, on the subway and out on the street. Those of you who are constantly trying to increase their knowledge of the religion of Allah and finding the way to adhere to the tradition of the Messenger of Allah (peace be upon him). Those of you are the truly liberated women. You are the best of women. You are free of the shackles of fashion, culture and all the "isms" (be it racism, feminism, socialism, chauvinism, whatever-ism). You bow to no man, woman, stone or star. You serve only your Creator and your obedience is only for those who worship Him. You are the only really Free Women in this world. May Allah reward you for every single second of your adherence to His deen. Amen.

Hey he must be autistic

2010-11-15T10:47:00.000-05:00

K has never lined things up, or been obsessed with Thomas the Tank Engine, or flapped his arms, or walked on his toes, or memorized the phone book, or been able to count matchsticks that fell out of a box on the floor, so I had my doubts about the autism.

But look at this photo. I think we can safely accept his diagnosis now, right?

(Haha lame joke.)

Why are there lines of blocks coming out of the wheels of that truck? Only he knows. Maybe its a road? He wouldn't say.

I walked in to the room, and said "Wow K", and he looked at me with a crooked smile and completed, "Its Beautiful".

Of course.

Something Powerful

2010-11-15T07:22:00.000-05:00

I remember watching some amazing documentaries while I lived in England. You don't see awesome things like this on TV in North America (lets not get in to the why not).

Just watch.