Chalk Wall and more Drawing

Excited by K's interest in drawing pictures, we painted a chunk of wall with chalk board paint to create another canvas for his art.

He has been using it but not much on his own like he does his white board or paper. If I go in there and start drawing without inviting him, he joins me and takes over.

So I drew a house and clouds and he decided to add to the drawing by himself.



Here is a short video of him doing his thing.



He didn't like my green grass and erased it ( didn't get that on tape). He wants to share his drawings but is not always open to radical new ideas (like green grass) that are maybe too different to what he had in mind.

My yakking in the end is just trying to prolong the declarative statements about the grass but it didn't work. Too much all at once as usual.

I like drawing pictures as an RDI activity because it allows me to guage how open he is to intereference by me in his activities, how rigidly he clings to particular ideas about what "belongs" in a picture. Some ideas he accepts and some he rejects. Some he "seemingly" rejects but then I see him trying to do them himself a few days later.

His pictures are almost always the same, but I have noticed him doing his own variations to repetitive drawings. Which I love. He drew apples in a tree the other day on paper. He also did helicopter and then decided to add clouds which was new.

Here is tree I did to which he added apples.



And of course his tree that he did on his own was way better.

As Ready As I am Ever Gonna Be

With 4 weeks left to arrival of new baby, I wanted to assess my state of readiness for the new life changing event.

1.  I am not nesting.

Nesting is for people who read parenting magazines, and articles and calculate their due dates and know how many weeks pregnant they are all the time. Maybe slowing down and not being able to finish and do everything during pregnancy makes people realize their house look like a dump and they feel the need to clean up. Or maybe the inevitability of life changing events starts to dawn on the pregnant woman and she feels the need to do something about it. Nesting is not for people who live in a perpetual state of crisis from one day to the next. To them nesting seems like another stupid thing, forced by societal pressure on to their “to do” list and so they would rather just make a sandwich and text their sister.

2.  I have not taken any prenatal classes.

Prenatal classes are for people who have a lot of time, child care, and probably have never attended one before, so they don’t realize what a total waste of time they usually are. Unless you are doing some weird ball special stuff like hypnosis birthing or giving birth around dolphins, I don’t see what class can prepare you for actually giving birth. A quick review of signs and symptoms of normal labor, and a knowledge of what is definitely wrong and not supposed to happen should be sufficient. Classes might be useful in building some confidence in those who are having their first baby. If you are actively exercising before pregnancy you will remain active during. No amount of kegel exercises will help avoid the pain of pushing a human out of a coin sized hole.

My pain management technique last time was to keep walking around waiting for my sons’ therapy session to end and for someone to come pick him up. That kind of worked. When it was too difficult I sat in a tub of hot water. So I made it up as I went along and it worked. I made it to the hospital minutes before my daughter crowned. Because Allah is cool like that.

3. I have bought no new baby stuff.

Because someone gave me hand me downs and I don’t stereotype genders by color in the first year of life. I didn’t buy formula and bottles because breast feeding saves time, money and makes healthy humans. I have no new baby furniture because we just had a baby last year.

However I do need to get ear plugs.

4. I am not preparing any food and freezing it.

Because most days I don’t have food prepared to eat today, so where would I find the time to prepare and freeze stuff for later?? Plus pita smeared with almond butter and honey is a fine meal.

5. I have sort of prepared my home birth bin and my hospital bags.

Because I am cool like that. And also because there is not much in them. Half the things people want you to take to the hospital you don’t need. What you desperately need during labor is privacy and after giving birth is some decent food. Both of which you never get at the hospital, unless you have loads of money and can get a private hospital, or someone waiting on you and delivering you meals at odd times of the day.

6. I have not prepared my children for the new arrival.

Because one is 1 year old, and the other has autism and doesn’t have a clue what I am talking about. So far every time I have asked him if he wants a new baby, he has said “new baby” (which means yes).

7. I have not guaranteed post natal support.

Because I am not sure if my mother will be able to fly half way around the world to be here for me and if she does then for how long. I don’t know anyone who can hang around and manage my affairs. So far the plan is that I will have a normal birth and manage my affairs myself, much like the last time.

8. I have not prepared any baby art work, journals or scrap books.

Because I am not very sentimental and I couldn’t be bothered the first time so why would I bother now for my third?

9. I have faith in God coming through for me, because He always does.

10.  I keep stocking my fridge with dates.

Because every smart person knows that you can’t give birth without dates.

And so I am ready as I am ever gonna be for a new baby (minus the ear plugs).

A Withering Tree

There is a conversation that I have been having with myself for the last few weeks. It is always lurking in the recesses of my brain mostly suppressed unless I am by myself driving, or in the early hours of the morning before everyone wakes up in the house and I am staring out the window watching the sun rise with my cup of tea. It has been bubbling to the surface during these solitary, contemplative moments and is now over taking my otherwise busy time. So much that I am unable to focus on other things now, and I feel I will never get anything done until I either write something down somewhere, or have a nice long conversation or discussion about it with someone who will get it, or take some action to do something about it.

Unfortunately there is no one to speak to who will get it and I am not sure I will be able to articulate myself well in spoken word anyway. It needs to be written down and put out here, where it will stay in Internet limbo for strangers to stumble upon and I will take comfort in the fact that I may have shared it with someone with whom my thoughts resonate. Perhaps I will be able to then move on and get things done around this house!

I have been lamenting the hopeless lack of community.

 I feel like we are in the middle of a crisis.

We are always throwing that word around. Muslim community, homeschooling community, autism community, Pakistani community and so on. Does anyone even understand the meaning of the word? From where I am standing there is no community of any sort. There are networks and committees. There is a Muslim network, a homeschooling network, an autism network, a facebook network and so on. In this network people associate with others in a transient manner, based only on shared interests. If tomorrow I was to walk away from all these things, I wonder if I would even feel the need to stay connected to any of these individuals. What does that say about the strength or meaning behind any of these connections?

Much like the school friends, university friends and so on, they too will be lost in time.

Where are the loving aunts and uncles who see you regularly and talk to you about life and their own youth? Where are the grand mothers who held secrets of another era and would pass some of those on to you? Is it just me and my family that is suffering this sad state of disassociation? Or is everyone so well insulated and compartmentalized that the pathetic transient encounters and empty professions of friendship and so called community are now viewed as the best that we are ever going to get.

Am I letting my fantasy world of real human connections and meaningful relationships get in the way of the reality of my near anonymous existence in all these networks and pseudo communities? Perhaps I should accept this as a sign of the end of times and keep on trucking the best I can with what is out here and hope for the best for myself and my children?

You see, many years ago I had a taste of a real community.  This community consisted of people of various ages from the elderly to the very young. They did not meet monthly or weekly but their interactions were intricately woven in a beautiful symphony of daily encounters. This community was made up of aunts, uncles, cousins, neighbours, neighbours’ relatives and so on.

Then we migrated to another country and it was all over.

From there started full time schooling and transient associations with strangers.

Pursuit of a “better life” kept my father out of the house most of the time, kept me and my siblings in a secular school for most of the day. After school there was television and dinner and so went the next twelve years of my life until university where pretty much the same thing continued.

Those who never had a taste of community probably do not even realize what they are missing. “Better” schools, more expensive private tutoring, expensive extra-curricular activities, technology and more ephemeral connections fill the void until that is the norm.

But I had it and I long for it, for myself and for my kids. I know what it’s like and I know what the lack of it can do to a person.

My kids do not have those loving aunts and uncles who will take time to teach them to ride a bike and take them for walks. I will most likely have to buy such a person, hire a therapist or apply for the services of a community volunteer.

There are no elderly. They have been either left behind in “back home” nations or segregated from the young. They no longer serve the purpose they served in the old days of child rearing and family life.

Most of today's grandparents are glued to TV screens themselves, plagued by their own mental health problems, watching the news or day time television.  They have no skills or secrets to pass on to the young kids, only complaints of a life filled with physical, financial and emotional difficulty. Television, immigration, delegating child rearing to schools and strangers and a lack of community robbed them of their purpose too.

If there are a lucky few families on this earth where grandparents read books, have special skills, have religious knowledge and other wisdom to impart to their grandchildren, then when in the week are they getting to spend time with the young to transmit this knowledge?

As a child my own grandmother was always in another country. By the time we had access to her in our university days she was a withered old woman addicted to various medication after years of a lonely existence, unable to give any aspect of her lost secrets to us. I heard she used to knit, crochet, sow and was a fierce single mother. I never knew that woman unfortunately, except for a few short weeks of summer holiday trips to the home country.

Today I am a fragment of a poor legacy of institutionalization and lack of community. I am alone in my day to day affairs. My kids do not spend daily time with members of family. There are no elderly. There are no wise adolescents with whom they can develop binding ties who can mentor them.  I meet people I know by name in monthly “xyz group” meetings or run in to them here and there, but only when there is a shared interest. When these individuals (or me) have no shared interest, we are content to ignore each other for weeks oblivious of the state of the other. This is not a community. This is a pathology.

What is the antidote?

People talk of escaping, perhaps moving to Muslim lands for a more religious education. Another  foreign place, more strangers. They talk about homeschooling and moving out to the country side and living on farms.

In my conversations with my mother or relatives who are still “back home” I hear stories of a world that I no longer recognize from my childhood. My mother complains of gun fire and constant power cuts, depression and regret. My friends talk only of money and how to acquire more of it. My relatives lament the departure of more relatives to other nations via immigration. 

I fantasize sometimes of returning but I know what I want to return to no longer exists.

The plague of fragmentation leaves no one untouched.

Surely this cannot be just my dilemma. Are you out there? What are you doing about it? Should I just give up, stop fantasizing and accept this reality and hope for the best?

I want something better for my children. I want a real community.

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

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

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

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

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

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

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

Do parents ever stop feeling guilty?

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

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

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

Then to add to the chaos, the next day, my husband decided to take him for a haircut, to a new barber in a new place. Nice. K screamed “no hair” while picking up bunches of his curls from around him trying desperately to put them back on his head.

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

I have been meaning to take him out to an indoor playground so he could let off some steam. My current pregnant state, and a one year 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 little girl, 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 do on inflatable slides, but she was not interested and her mom was not pleased at all. We had to remove K from the play area for a while as he screamed and had a meltdown because he did not understand why he was being punished.

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

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

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

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

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