Our autism journey began on December 19, 2002. Nico was 19 months at the time. Momma was 6 months pregnant with her second child (another boy) and suffering from placenta praevia to boot. It was a typical Canadian winter, grey, cold and snowy. A month prior, my husband Tom and I, had seen Nico’s pediatrician for his 18th month old check up. We had voiced some concerns about his development at the time: no eye contact, would not react to his name, his language was extremely delayed compared to his peers and he would have no joint attention (no pointing with his index finger, nor sharing to communicate). In addition he had trouble going to sleep every night, had unexplainable tantrums and wouldn’t sit still. I had my first suspicions that something wasn’t right at about 15 months. Given that Nico was our first child, I just thought that he had little development delay and that everything would be fine soon…
The pediatrician made a referral to Montréal’s Sainte Justine Hospital for Nico to be seen at their Developmental Clinic by an multidisciplinary team of specialists ASAP….ASAP meant that this was not just a minor developmental delay. My son’s condition needed to be evaluated immediately. That day I went home and started what would become my ritual for the next several years – searching the internet for whatever I could find about my son’s condition. I began my searching with the words ”language delay”. However, upon going thru several websites and connecting the dots with the other symptoms, I realized that it was not only a language delay but a communication delay and a delay that was pointing to the dreaded word: AUTISM.
When I was making the appointment, the secretary had two spots available, one before Christmas and another one on the second week of January. She politely tried to convince me to take the one after Christmas, BUT Christmas holidays or not, we just HAD to know what was wrong with our child’s development.
Nico was seen first by an audiologist, a speech pathologist, an occupational therapist and then a child psychologist. The diagnosis at the time: ”suspicion” of an autism spectrum disorder. Because he was so young (19 months) we would have to wait until he was 2 1/2 to have a definitive diagnosis from a child psychiatrist. Then and there our heart sank. From my research, I knew that the earlier the autism symptoms could be spotted, the more definitive the autism diagnosis would be. Although I secretly prayed that it was just a problem with his hearing, I KNEW then that my son was autistic and that this suspicion would only be corroborated by the child psychiatrist later.
But there was NO TIME TO CRY, my first reaction was : what should we do know ? Unfortunately, not many answers were given to us. A tentative diagnosis was made but no specific treatment was proposed. Just a referral to our local readaptation centre to put our name on the waiting list for behavioural intervention services (ABA), the only therapy services that were offered at the time for children on the autism spectrum. And THIS is one of the hardest moments a parent with a child with autism goes thru in their journey. You are told that your child suffers from a long term condition which will affect his overall functioning for the rest of his life and all you are given is a paper to register him in a waiting list for public rehabilitation services that may or may not come in a couple of years, if your child is lucky.
Needless to say, it was a very stressful Christmas. I was on a daze from that point on. On or about December 27th, we met with a psychologist at the same hospital who had kindly offered to meet my husband and I to answer some of our multiple questions about autism, the treatments and services that existed out there and ultimately how to cope with such a diagnosis. I’m still grateful to him for meeting with us on such short notice. But more importantly, I’m grateful to him for being frank and to the point with us. And I still vividly recall his last words: ”just be aware that your days of living carelessly and with abandon are probably over”. And he was right. Has been right ever since.
Thus began the autism whirlwind or rather the autism tornado. First staying up all night doing research on the internet for treatments and therapies, going to the library and reading all types of books related to autism, trying to figure out where to go from here.
As expected, the waiting list for the readaptation center was about two years !! And of course, that was unacceptable. We needed to act NOW.
Stay tuned for the next chapter in our Autism Journey: the early intensive intervention days and my ongoing battle with the readaptation center and the Québec Health Ministry for better services for my son.