Autism: My Story

It’s hard to believe it’s been almost nine years since I heard the words that would change my life. Our son and his twin sister had just turned three.

My husband and I were sitting in the office of a Developmental Pediatrician, with our little boy.  We had just spent an exhausting few hours with a  multi-disciplinary team of professionals, including a speech pathologist, occupational therapist and the doctor, answering questions and watching them try to interact with our son as they completed their testing.

 “Ryan has an Autism Spectrum Disorder.”

For months, I had suspected this was the case. Ryan was not developing according to the expected milestones, and we’d been trying to find out why. Although I didn’t have any real knowledge of autism, it had come up in a Google search one day when I had been trying to make some sense of Ryan’s developmental delays and behavioural challenges. 

From our son’s lack of language and absolute terror at loud noises such as the vacuum cleaner, to his unusual preoccupation with certain objects, and inability to adjust easily to changes in his routine or unfamiliar situations, many of the unusual things I had noticed seemed to fit within the list of possible symptoms of autism.

Still, it didn’t really seem possible. When I dared mention it to others, they were quick to reassure me. Ryan couldn’t have autism – or so they told me. People kept pointing out that Ryan didn’t “need to talk” – his twin sister did the talking for both of them! Plus, twins have their “own language” anyway, and girls always develop faster than boys. I remember keeping my concerns to myself after a while, and hoping that everyone else was right.
We had been referred almost a year earlier for this assessment, and the day was finally here. We were hoping for some answers. Now we had one – Autism.

I don’t think I will ever forget the rush of emotions I felt that day.

Fear – I was afraid for my son and our family. What would the future be like? Were we strong enough to deal with this?

Relief – After all of this time and worry, we finally knew what we were dealing with, and there were services and resources that could help us. We could now make a plan.

Anger – Why him? Why us? How come it took us so long to find out?

Guilt – What caused this? Was there something I had done or could have done to prevent this?

Those initial emotions took a long time to go away. The next few years were a roller coaster of emotions, as we learned to navigate the system – one in which we had no prior knowledge of, and which we quickly discovered involved long, long waiting lists. We kept hearing how important early intervention is to helping children with autism reach their full potential, and yet we were told we would have to wait months, and in some cases, years for the limited services available.

I poured myself into learning everything I could about autism. I read books, took courses and workshops, got involved in my local chapter of Autism Ontario and most importantly talked to other parents of children with autism.

We learned to help our son find ways to communicate with us, since speech eluded him.

We found ways to manage Ryan’s anxieties and behaviours to help him learn and be able to handle the challenges of everyday life.
We hired private therapists to help teach Ryan the skills he needed, and were lucky enough to get therapy through the Ontario government’s ABA program after a three year wait.

And you know what? Things got better. They really did.

It wasn’t easy, and it wasn’t quick, but Ryan has come a long way since his diagnosis. He continues to inspire us with his progress and is a joy to be around.  I have no doubt in the world that he has made me a better mom, and I can’t wait to see what his future holds.

Guest Post by:

Kathy Sima
@katsima on Twitter
www.savingkathy.blogspot.ca