Tag Archives | Autism

Is IBI right for my child? What is IBI?

Intensive Behavioural Intervention (IBI)

IBI is the application of the science of ABA in an intensive manner. As a general rule, it is done for a minimum of 20 hours per week no matter the severity of the child.

This comes up right now, for my family, because it was almost 3 years ago that we were told that my son, Cameron, has Autism and it was then that we were told that he would be put onto a 3 year wait list for….  drum roll…. IBI.

TherapyThis is a big deal. One to One IBI therapy is the only intensive therapy funded by the Government of Ontario for children with autism. This means that it’s really the only option for parents that don’t have a lot of extra money lying around for therapy.

As part of the program, the child would be removed from their school for about 2 hours a day and put into a very intensive therapy session focused on key areas of development, ranging from being able to sit up to spelling out words on their own. The questionnaire was something akin to registering for the space program. A few hundred questions later and you’re put onto a waiting list.

Our 3 year waiting period officially came to term this month and we found ourselves at a cross roads of frustration as we are forced to weigh the pros, cons and opportunities.

3 years ago we found ourselves with a non-verbal child, not toilet trained, unable to do most things that a 2 year old should. His diagnosis put him at moderate – to – severe PDD-NOS. Finishing the check list found us answering mostly “no”s to everything and feeling very discouraged.

At this point, we took it upon ourselves (my wife mostly) to learn all we could learn about IBI and ABA… with every appointment, therapy session and meeting we had with people, we took away binders, books and pamphlets of information as well as all that they could ‘teach’ us.

The thing I find most frustrating, and what I’ve been repeating since the very beginning is… if a teacher, school, program, therapist, company, organization or government doesn’t offer all that you want or need, you as the parent MUST MAKE UP THE REST. Do not rely on anyone or anything to provide for your child all that you need.

So, armed with all the information we could get, we began our own IBI/ABA program here at home… population 1. We worked (99% my wife) with Cameron every single day, even if only for a few minutes, an hour… what ever, we worked on his numbers, colours, shapes, holding things, using things…  all that IBI/ABA would have had him doing.

I introduced the Nintendo Wii (Mario Kart specifically) because it had just one button to press and just a turn of the controller and that’s it. It greatly advanced his gross motor skills.

All of this found Cameron progressing more and more and more. It wasn’t easy and certainly didn’t come over night. It also went hand in hand with everything else we could learn and try… such as the gluten free diet.

2 years later, Cameron was accepted into a wonderful school that has ‘regular’ children on the main floors and the basement dedicated to Autism. In a class with only a few others and many adults, he was further given the guidance and support he needed to grow and learn even more.

And now, he’s in school for his second year (senior kindergarten) and is now spending many of his days with the ‘regular’ 1st and 2nd graders because not only is he smart enough for it, but he’s getting to be social enough too!!

IBI came calling once Cameron’s name came up and we had to weigh our options. Would he benefit from getting more of what we started so long ago, or would he benefit more from the social life that he now had in school?

First, let me tell you, a lot has changed in 3 years. Northern Ontario had recently made a rather drastic (in my opinion) change to their program and now insist on full time IBI sessions, which means no more 20 hours… it would replace school completely!

The children in the IBI program here in this city are all quite severe and the only children that could possible be on the same level as Cameron are 9 and 12. Cameron would NOT relate to them at all.

All of this, however, didn’t impact our decision nearly as much as what my very clever wife had decided.

You see, this school that Cameron is in is so awesome that they have a 2 way mirror in it, such that any parents, at any time, can enter a private room and watch their children in the classroom without anyone knowing.

So she had the IBI lady come to the school and join her in that room to witness Cameron’s progress, they brought the checklist.

This time, all of the “no”s had become “yes”s… Cameron had surpassed all that IBI had to offer for him and in fact, would hold him back as he’d lose all of his social interactions, not just with other children with Autism, but with other children without Autism.

And so, at the end of their observations, even the lady from IBI had to agree that Cameron’s best place was in the school. That there wasn’t much that they could do to help him progress since he’s already surpassed what they cover.

That was what we really wanted to hear… that we were making the right choice and furthermore, that we had made the right choice all along.

Now the question is, is IBI or even ABA for that matter, right for you? Well, I guess that depends on what you would get out of it and what you wouldn’t. Also, you must consider if your child isn’t getting something out of it, can you do it? Can you find a way to compensate for it? Are you dedicated enough? Resourceful enough? Determined enough?

If your little one needs strict guidance and personal development, maybe IBI is a good choice. If your child need a social setting, then maybe not. For us, we feel that if we took Cameron out of school and put him in IBI for any period of time, it would be a huge set back once it came time to re-introduce him back into the social scene. He’d lose that ability to wait his turn, put up his hand, follow directions and seek out people on his own to play or work with.

Only you can know for sure, questionnaires and observation can only take a professional so far. You need to know how much further you and your child can go.

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Autism has made one thing easier: family listens to us

My wife and I were talking this week-end about how things have changed with our family, both hers and mine. In the beginning, as we found out that we were expecting our first child, we got a lot of the usual “get ready to get no sleep for the next 18 years!” type of remarks, as all expecting parents do.

AdviceThen we faced the ridicule of wanting to keep up with todays standards in safety: “Bah, my kids never had to sit in a car seat and they’re fine!”

We continued to get the “we were parents long before you were” speeches long after our first child (Cameron) was born and even after our second child (Tyler).

Even when we began telling everyone of our Autism concerns, we still got all the ‘advice’ you’d expect, such as “some kids are just like that” or “he’ll grow out of it, stop being a worry wart”. What is a worry wart exactly anyway?

It was very frustrating because every parent wants to set limits, rules and boundaries for their children and we all know that grandparents love to spoil their grandchildren. But all family has this “we are parents too, we can spoil your kids, they’ll be fine” attitude and it can be very frustrating for parents that just want everyone to listen to your wishes.

Autism has a way of changing all of that because suddenly it puts them on the same level playing field as you… the unknown.

We found that all the remarks, all the advice, all the ridicule for our choices faded away in that moment, but never really left because what would parents (who are now grandparents) be if not supportive?

Even still, what really made the largest difference was when we were able to really make them “get it”… and for us, that defining moment was when they watched the Temple Grandin movie, or when they could find their own videos on Autism.

Once educated on just how very different it can be and how well versed they had found out that my wife and I had become on what is going on in the world of Autism, they really backed off.

Not just the remarks and such, but also on questioning our decisions. If we decide something is best for Cameron, or if we decide that he goes to bed at a certain time, or if we decide no one in the family feeds him without us being there… they do not question it anymore. They certainly don’t argue it either.

That is huge.

It has been a long and very frustrating road at times but it’s great knowing that finally, after all this time, they see that we are capable, that we do know what we’re doing and most of all that we not just like every other parent that’s had a kid.

To be clear, we still value input from our families and our own parents, but the fact that the questioning, doing things against our wishes and ‘spoiling’ is over… is so very much appreciated.. I can’t even put it into words.

The big shock, for me, is when other parents started coming to me for advice, which also comes with the Autism diagnosis, but that’s for another article.

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Do you carefully select which photos based on whether or not you can “see the Autism”?

My wife and I took some photos in the backyard this week-end, she wanted to try to get group shots right without having someone be out of focus… this meant that I had to get my 2 boys in close with me for some family photos.

As we went through the dozen or so photos, we settled on two pictures that were ok and put those online. But even out of those two, we only ever really used one of them… I use it for my Facebook profile picture right now.

We’ve always done it but it wasn’t until this week-end that we really started to put some serious thought into it.

On one hand, we want these pictures to look back on and we want to see the wonderful little boy as we always see him, a regular kid living his life as he should. And being rather well versed in Autism now, we know that later we’d look back and go “oh… yeah… you can see the Autism so clearly”.

On the other hand, is it kind of deceiving, or even lying? To be showing these pictures to everyone as if to say “this is it, there’s nothing more.. no other pictures.”

I like to think that we all do it, right? Bad hair pics, blinking, food in our teeth, acne breakouts, gut hanging out the wrong way…. we pick the best pics of the best and share those ones. It’s quite a natural thing to do, we want to look our best.

Still though, I can’t help but feel like I’m doing something wrong when I do it. I love that I can put a smile on people’s faces when they see this great kid being happy and being a kid… but I feel like I’m not telling the whole story too.

On the flip side, almost every photo I see online where you can blatantly “see the Autism” is usually accompanied with some caption like “Can you tell which child is Autistic?” and that kind of bothers me. They say that you can’t just see that a child is Autistic like you can some other disorders/disabilities but as parents we know, if you take a hand full of pictures, you’ll see it.

I think I could talk in circles about this for a very long time, trying to convince myself the goods vs the bads…

This post wouldn’t be complete without some examples, so I’ll use the two I mentioned earlier.

Cameron, Tyler, Stuart

Notice Cameron's jaw pushed forward, hand sitting awkward, awkward hug...

It’s so subtle and yet, so glaringly obvious. Keep in mind that this is one of two that made the final cut out of more than dozens. And in comparison, the next photo, which is the one I used on Twitter and Facebook.

Nice smile, just a natural part of the picture

You can see how much of a small difference there really is but when you know what you’re looking for, or avoiding in this case, it’s a big difference. And as I said, I feel like I’m not telling the story accurately by favouring one photo over another, but I just can’t see myself changing that. I choose the better photo because that’s what I do, that’s what everyone does.

Do you find yourself choosing the photos where you don’t “see the Autism”?

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Do Unto Others – Or in other words, if it would hurt you, it would hurt them

This week-end was a big family week-end, there was a lot going on at all times. To cut right to the chase, my boys were playing with their cousin and while wrestling, Cameron jumped and landed with his butt on his poor cousin’s head… while she was laying down on the floor.

My son is not small. He’s only 5 but he’s about the size of an 8 year old. His cousin is 12.

Suffice to say, it hurt her quite a bit and the playing promptly came to an end.

The boys came to find me and told me that she was crying but didn’t tell me why. We had to track her down and find out what happened.

I don’t think anyone ever questioned it but I could just tell that if anyone else had put much thought into it, it would appear that Cameron had no remorse about it at all, he just went off and played with something else.

But I could tell, because he was in the opposite end of the house on a different floor, playing by himself. You wouldn’t know it just to look at him, but he felt bad about it.

A little while later, when I was alone with him, I tried to talk to him about it. The only way I could think of to get it through to him, which is what I’ve always done with him, is to ask him how he’d feel if it was someone jumping on his head.

It seems that, for the most part, he does not understand nor realize in the slightest just how much his actions will hurt someone else, but he does know what would hurt him.

And so the only way I can make him understand how to be careful or avoid certain things is to think first about how it would feel if it was done to him. Naturally, when playing, there simply is no way for him to stop and think about it like that. He just does what he thinks is fun.

I mean, this is a tricky enough topic for any child to learn but when you have Autism in the mix, there’s just no way for a child to understand how their actions will affect the person they’re doing it too. Especially when it comes to another person’s 5 senses, such as touch. Pain is just too foreign a concept to know how others would experience it.

But like everything, this is a learning experience and he felt really bad about it. So even though he likely doesn’t quite get the whole concept of what happened, he does know what he did wrong.

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Understanding Autism: Autism Life Histories

Yesterday I received an email asking that I help spread the word about a study on Autism. Not just Autism itself but on life histories of those involved with Autism. This is the email:

Dear Stuart Duncan,

We are researchers at Columbia University's Institute for Social and
Economic Research and Policy studying autism. We are currently
collecting life stories from parents about their experiences in
recognizing their child's autism, seeking professional help and
navigating the available service systems. We think participation in
this study would be of great interest to your readers, and we would
like to invite you to write about our survey on your blog.

The goal of this project is to gain a better understanding of the road
to diagnosis. Parents have different experiences and observations of
their child's development and they have different personal resources
with which they access care and services. Parents also differ in the
type and extent of their support networks and social relations. And
finally parents make different decisions in their quest for obtaining
the right diagnosis and care for their child. We would like to give
parents the chance to tell their stories. Participation in the survey
may help us understand the heterogeneity of autism as well as how
children develop over time.

We are collecting life stories of parents of children who have autism
through an online semi-structured survey at our website,
http://www.understandingautism.columbia.edu. You could help our
research tremendously by encouraging parents to participate in our
study. 

We thank you in advance for taking the time to read through this
invitation and considering writing about our survey on your blog.
Please feel free to contact me via e-mail at
understandingautism@columbia.edu or telephone at 212-854-3440 with
any questions that you may have.

Sincerely,

Peter Bearman, Principal Investigator
Cole Professor of the Social Sciences
http://www.understandingautism.columbia.edu

Please give them a visit and get involved if so inclined. Information gathering is so important and sharing our stories is what helps others live out their own stories.

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