Monday, 23 November 2015

Our Autism

When the developmental pediatrician told us that our 22 month old son had autism spectrum disorder, I was not surprised. I had already diagnosed him in my mind. It actually gave me a feeling of peace to hear the words uttered by a professional in the field of autism. Nothing had changed. He is the same boy that we love and laugh with, before and after the diagnosis.

The main thing that I have learned about autism, is that no one knows anything about autism.

Autism is a neurodevelopmental disorder characterized by impaired social interaction and repetitive behaviour. Neurodiversity can be a beautiful thing. People who think differently are vital to society and innovation. There is no "cure" for autism (nor should there be). No one knows what causes autism. The rates of autism diagnosis have been rising steeply, most likely due to improved diagnostic criteria and awareness. I have met many lovely people with autism, and none of them are even close to the same in their skills or deficits.

After diagnosis, in Ottawa, your child's name goes on 2 waiting lists. One is for ABA (Applied Behaviour Analysis), the other is for IBI (Intensive Behaviour Intervention- just another method of administering ABA). Wait times for these services is around 2 years. It is the parent's responsibility to figure out how to get on these lists, there is often confusion because there are two lists and two separate procedures involved.

While waiting for services, my son, Mr. K, and I did some communication courses, I trained to be his primary therapist in a parent training occupational therapy program, which was very expensive and paid for out of pocket, and we hired a private speech pathologist, which is also very expensive and not covered by our health insurance.  I attended autism conferences, read countless books, and Husband and I changed the way we interacted with our son at home to facilitate maximum communicating opportunities.

We learned through a friend of a small government funded nursery school with only 9 spots and quickly put our name on that list, not really thinking that we would get in. We did get in, and our son had 2 excellent years with fantastic teachers, speech therapy, occupational therapy, and a behaviour specialist. It was a wonderful community of support and I will be forever thankful to everyone at Thursday's Child Nursery School in Ottawa.

ABA therapy has been somewhat helpful, we do 6 week sessions and have a lot of control over the focus of those sessions. In Ottawa, a parent is involved in this process, so far Husband has been able to attend all of these sessions and it has become a special bonding time for Mr. K and his dad. I do think that ABA therapy can be harmful if misused. Because we had parent involvement in every session, we were able to make sure that everything was play based and fun!

IBI therapy was a negative experience for us and most of the friends I have spoken with who had children participate in the program. Unfortunately, it is very stringent (although apparently it used to be more so- terrifying). The individual therapists were kind people, but the program did not shape to each child's needs, so did not benefit all children. We actually found that our son had more regressions than gains during this time. A lot of our friends were "kicked out" of the program after only 6 months because they failed to meet their IBI goals (which seemed to be the same for all children). We were told that Mr. K "barely made it" at the 6 month mark. The program was very focused on negatives. It is despicable to me that IBI is looked to as the main course of therapy in Ontario when it so clearly does not meet all children's needs. We did learn a lot during this time about what is important to us when it comes to therapy for Mr. K.

Now we are in a world of school placements and IEPs (Individualized Education Plans). After a rough start to the year, we have found a school and a program that suits Mr. K perfectly. He is happy to go to school everyday (even a little sad on the weekend that there is no school).  His teachers care about him, he has friends, and he has been improving steadily in all areas. It makes such a difference to have Mr. K surrounded by people who see our smart boy's potential. We continue to see his Speech Pathologist and do the occasional ABA session.

My advice to family members of autism individuals is acceptance. Autism is a big part of a person's identity. Can you imagine if people were constantly trying to change you to fit their own agendas? Help with communication and life skills is great, but it is important to not get caught up in "normalizing." Read books about autism, read books written by people with autism (this has been huge for me), make friends with children and adults with autism, your life will be richer for it.

In our house, Autism is our normal. We love Mr. K, he is such an important part of our family. Yesterday, as we were sitting down to eat together, Mr. K was excited to eat (he takes after his parents in his love for food). When he is happy, he stims. Stimming is a repetitive body movement that self stimulates one or more senses in a regulated repetitive manner. Most of us stim and don't even know it. Mr. K's stimming is more obvious than most. We call it his "happy hands." So there he was, flapping his hands in happiness at the leftover pizza (it really is the little things that bring us joy), his twin brothers joined in and flapped their hands as they usually do, which prompted Husband and I to join in as well. So there we were, a family of "happy hands" and happy hearts. Life is sweet.

Thank you to Tristan Laroque-Walker for the family photo!

10 comments:

  1. Such a wonderful post! Thanks, Danielle.

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  2. You're a better person than I. I wish there was a cure for autism. William's personality shines through all the time, but his melts downs, his trouble processing and speaking, and the fact that he'll probably never live on his own or have a family makes me want to puke non-stop. If someone could cure autism, I would be all over that.

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    1. I am not saying that I don't have bad days. I just have more good days than bad.
      Wish we lived closer for no judgement hanging out. Our boys could play while we swapped stories! I bet we both have some crazy stories ;)

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    2. Keifer has a lot of trouble speaking and processing as well. I am fine with him (and all my boys) living with me forever (they might not agree when they get older).

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  3. Thank you for the insight. God bless you as you journey through this world with Mr. K. I can't think of anything better than you and your husband who will fight for what is best for their son. Marg Layton

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    1. Thank you for your sweet words! It means a lot!

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  4. What a lovely post and wonderful photo. Perfect for a Christmas card. It is good that you are young and have a committed partner. I wonder how many men (or women) have gone AWOL with special needs children. Or how many parents do not have the mental or financial resources to explore what is available and best for their children. I have talked with my son recently about the importance of community. To find the place we fit is a responsibility to ourself. We also talk about how having a minimalist environment allows you to think and to focus on what matters - the people we live with and interact with - (and my old dog who will not always be with me.) So even though, I don't know much about Autism, I know that having a happy family is the goal of most of us. Thanks for sharing your life. . .

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    1. I am very grateful for my husband (love of my life since I was 16). We are a great team! I think being a single parent would be extremely challenging.
      It sounds like you and your son have some wonderful discussions. I hope that my sons have a relationship like that when they are older!

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