What's On Our iPad

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

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

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

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

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

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

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

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

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

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

I am going to do a little series of reviews of the various indoor playgrounds 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. Are the play structures exciting? Are they dull and repetitive? How creative is the set up? Is there enough space to play? Can children of various ages play at the same time? On a scale of 1 to 5, with 1 being worst and 5 being the most exciting.

Cleanliness - ever get the feeling you need a bath, after you've visited 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 to 5, with 1 being worst and 5 being the cleanest.

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

Safety - Are the structures deflating and falling apart? Are the toilets always out of toilet paper and flush not working? Is something always broken in there? Are the balls in the ball pit squished and pointy giving you scrapes and bruises? Nothing worse than jumping in to a ball pit and landing on a pile of squished, pointy balls! Are there exits in the back which are unmanned and kids (especially autistic ones) can wander outside without being noticed? 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 various times 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. This review 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 limit of 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 for more than 15 minutes. They also have height and age restrictions. Not for a broad range of ages or abilities.

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

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

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


That gives IKEA SMALAND ETOBICOKE a disappointing 2 out of 5. Hey, if you didn't have a good time at the Smaland, all is still not lost; you can always try 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!!