Wednesday, April 28, 2010

So Now What?

The short and concise answer is not much.

The question comes after our family has been going through battles with the school and the school board, struggling through an almost year long process of getting a diagnosis and trying to find some help for our son Christopher.

Last week we finally got the official diagnosis - Christopher has autism.

Christopher also has ADHD, which we have known about since he was 3. There is also the very distinct possibility that there are also other issues going on such as Central Auditory Processing Disorder.

Life can be very difficult when you are "different." I was so relieved when the diagnostic process was over because I believed that now we would be able to provide Christopher with some much needed assistance to help him navigate the rocky road that is his life.

Instead I find myself angry and upset. It turns out that we live in what is known to the rest of the autistic community across Canada as "the waste land." There is so little government funding for autism programs in Saskatchewan that the waiting list for services is about 10 years long.

We are luckier than a lot of families. Christopher's autism is relatively mild. My heart bleeds for the families who need intensive therapy if their children are to have any hope of improvement. At least we aren't put into the position of having to remortgage our home, borrowing heavily from anyone we can or even being forced to move to another province where there are better services in place.

There are some changes currently being made to try and address this huge embarrassing deficit. The problem is that a lot of children can't wait. They need help NOW. Waiting for the slow wheels of bureaucracy to turn can mean the difference between a life of total dependancy or a chance at a meaningful life. At the same time, however, the same government is cutting back funding to the school boards for educational assistants.

In Christopher's case little interventions could have the potential to make a big impact on his life. We will just have to get in line and hope. You can only listen to your child cry himself to sleep so often before your heart completely breaks. He knows he is not like the other kids.

If you can, please please make autism a cause you support. In Saskatchewan there is The Autism Resource Centre. There is also The Casey Foundation, which was started by a parent of an autistic child to try and provide financial support for families needing services. The foundation was started in 2005. Casey is still currently only on the waiting list.


Puddytat purr said...

Hi Sweetie,

Oh yeah, I been through all those emotions too. It took 5 years of hassling to get my oldest a statement of special needs for school and a further four years for the autistic diagnosis.

I gave up trying to get help for my youngest and I now home educate him.

The most important thing you can teach Christopher that he might be different, but you guys all still love him!

I'm always about if you need a chat!


Ash said...

I know I know you very little, but my heart aches with you for your son. My friend's son was diagnosed with Autism and it has been a struggle for them here in the states.

Positive thoughts, hope, and love for you and your family.

Mary said...

Hugs to you! I am the parent of a 15 year-old with high functioning autism and an almost 13 year-old with severe autism. This is a tough journey, but since your son is on the milder end of the spectrum, there is hope! My older son had speech, OT and social skills training from an early age and is fully included in high school. Please feel free to contact me on Ravelry (same user name) if you want to chat.

Take care,

(silmiriel on Ravelry)

Darcie said...

Thanks, all, for your good wishes. We did manage to get Christopher into a week of camp this summer so that was really good news.