Thursday, January 28, 2010

Are We Crazy?

This week, we attended our "Parent Orientation" session at Thames Valley Children's Centre for the Autism Intervention Program.  There were six children represented, including ourselves (three couples, two dads, and two moms).  The kids ranged in age from 3.5 years old to age 6.  Alanna was far and away the youngest kid in the group at 26 months.  Every parent in the room relied on the public system for their diagnosis, waiting an average of 1-2 years for a diagnosis.  Not a single child has had any ABA intervention (or probably any intensive intervention of any kind) except Alanna.  Many parents were not even aware ABA services could be purchased privately and most were not aware of the costs.  I felt like a chump seeming "holier than thou" in the group since we've done our research and almost everything presented we learned months ago.

This has gotten me thinking - are we crazy?  We are killing ourselves to pay for Alanna's therapy and while some may argue we have the means to make it work (single parents with other children - it's not going to happen), most parents in the system aren't even aware treatment is possible outside of it.  They are unaware psychologists can diagnose autism and a 1-2 year wait just to get a diagnosis is not necessary.  If one used "the system", a two year old suspected of autism would not receive intervention until they are five or six if they are lucky.

So on the one hand I have to ask myself, if we are the only parents doing this, are we nuts?  Should we back off, restore some sanity to our lives and let the system take over? 

Is the reason the Ontario government can under-fund autism treatment because 90% of parents with children with autism don't know anything about how it works?  It's one thing to be aware of what is available and not be able to afford it, it's a completely different thing to have zero knowledge of it.

Seeing Alanna's progress, I can't bring myself to think of stopping.  We have to soldier on.  The system is a failure.  Crazy or not, our path is set until relief comes (17 months away and counting down) or we collapse from exhaustion trying to make this work. 


  1. My little guy Tristan (3.5 years old) just started a playgroup for kids with ASD at Kidsability where speech and OT happen in our region and like you I was surprised by the other parents ignorance about ABA. We are lucky enough have had ABA for Tristan for 2 months now and he's doing incredible!

    There's no way I'd let the system take over, it is broken, and is intent on marginalizing our kids. We have a three year wait list here, its so short sighted on the governments part.

  2. You will not collapse from exhaustion. You will learn, internalize and it will become easier. Most people I know, know everything, they know it sucks, they're trying their best with whatever resources they have.

    I moved here from England, where no one does ABA. It is only just starting to catch on in the private sector and most of it is really bad ABA. (Hence we moved back to Toronto). We had to give up jobs, my husband his university masters mid-way, it was total chaos. Now we have a handle on things.

    I will not let a broken system that makes claims such as those on Paul's twin's court ruling letter, to ruin our hard work. Have you seen that thing? There is no research backing any of those claims.

    So we're probably going to be those who live outside the system, possibly homeschooling, there are many others like you. You just have to find them.

  3. Kudos to you. You are not crazy. Similar to you, our son with an ASD dx is 26 months old. I suspected autism before he turned 1. It was nothing evident to others but very subtle red flags that had me concerned (poor eye contact, delayed babbling, delayed speech and delayed pointing worried me). Our pead reassured me nothing was wrong because he saw our son smile and interact with him- but I didn't ignore that nagging feeling that something was different. Some seasoned autism moms told me not to wait for a dx to start treatment and so we started private ABA a year ago. It was the best advice I ever got. Do not wait for our public systems to help or guide you. There is no meaningful help for children with autism in the public sector. You are not crazy.

    I feel sorry for parents that have faith in our public systems. However, I also know that a ASD dx can be debilitating to parents and the task of finding help independently can be painful and burdensome. It's a huge burden to coordinate all the treatments a child with autism requires, and by burden I do not mean only financial. There is huge emotional toll. It forces us to really examine our child's deficits and work through them. The land of denial can be a safer and more comforting zone to live in. Navigating through all the information and finding help is tough. Also, living in Canada we are taught to believe that as taxpayers, social programs and assistance will be available whenever we find ourselves in need. I can't blame other families for putting faith in our public programs.