Tuesday, April 02, 2013

World Autism Awareness Day ... Because We Already Know

Today is April 2, World Autism Awareness Day. If you are here to find out more about Autism and/or our journey, this post is for you.

Be aware. Be very aware. You are your child's best advocate.

It's been over 6 years since I felt in my bones that something was off about our beautiful boy. At 18 months, he didn't exhibit the same burst of development that his sister did.

He was happy and smiled, but did not "talk much." He rolled over a bit late; tried standing much later than his sister's 11 months. Once he started standing, the speech babble went away. His communication resembled a parrot's squawking.

His pediatrician told me I was being a worry mom; that I should not compare him to his precocious, older sibling.  Boys can often develop a little late, especially if they have a talkative big sister, he explained. Besides, he assured me, "he can't be autistic, because he looks you in the eye."

Do not be afraid to insist on assessments. Don't let fear of a diagnosis or well-meaning reassurances of family and friends put you off getting your child assessed.

By age 2 James started to scream and bite with frustration. He started zoning out on us, looking dreamily off into the distance and not responding to his name or attention-getting noises right next to him (yet he could hear a pencil drop on the other side of the house).

I came back to that pediatrician, who wanted to "give him 6 more months," and told him that what I needed was for him to call in a referral to have my son assessed for autism/developmental issues. I needed to know, I said -- if only if to be told to stop worrying. I needed that call NOW. He did call, but afterward was never comfortable in discussing my son's developmental issues.

There is help out there, and services are available that can help your child. The sooner you start, the better the response and results.

Within a month, a caseworker from the North Bay Regional Center came out and started giving me questionnaires to fill out. She chatted comfortably with me as we exchanged information, focusing attention on James as she tried to engage him with simple activities. After about half an hour, she started writing. When I asked what she was doing, she explained she was writing up purchase orders. What a lot there were: speech twice weekly, in-home and group developmental play therapies (each weekly), and weekly occupational therapy. Our lives changed with this visit, before we realized what was going on.

1 in every 50 boys. It can happen to your family. The numbers, when we started this journey, were 1 in 120 children. Every year there's been a scary march closer to 1 on 1 odds of a child being born with autism. Every year thousands more are diagnosed with spectrum disorders.

It took 5 months on a wait list to get James into the CAD clinic, where he was examined by a panel of medical, behaviourist, and developmental specialists.  The thought, going into the assessment, was that James would be found to be PDD-NOS. He actually scored a solid Autism Spectrum Disorder, which is technically more severe. Since then, we have become very aware. AndI have found the importance of building relationships with schools, doctors, and more people than I ever thought possible.

Communities and relationships are vital to stay afloat in a life or family that has been swamped with Autism or special needs.

The impact of James' diagnosis and special needs constantly strains at our family. We love him dearly and would not change him. We think his autism is part of who he is. We don't think it's caused by food allergies or vaccinations. I know that every child on the spectrum is unique, and presents as individually as "normal" kids do. I have learned the power of asking for help, felt acute relief and thankfulness for the kindness of someone who reached out to do something nice for me or mine "just because." Being with others who "get" what I am going through and don't attempt to brush off my worries, accepting it is what it is ... has never been more welcome.

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