Its amazing how “NOT” comforting “Don’t worry, all children develop differently” actually is. Family and friends play the role of making you “feel better”, even some family physicians are equally guilty of the same. But when my second child was born, I knew something more was off.
Ignorance really IS bliss, it may have been easier (for a very SHORT while) to pretend as though nothing was wrong, but I am SO proud that I didn’t. Because our first child was born prematurely at 32 weeks we were offered the services of the Central Okanagan Children’s Development Association (COCDA)’s Infant Development Program (IDP). I have to say it was wonderful as a first time parent to have an IDP Consultant work with us to recognize when and what our child’s development milestones should be. I often felt guilty that Sydney did so well, (if not normal, she often exceeded her goals) and I considered periodically that I should forfeit the service; however fate had another reason for putting me in touch with our fabulous IDP Consultant, our son, Joshua.
My pregnancy with Joshua was a good one, he went full term, and both his health and mine were great, all evidence pointed towards a happy, healthy boy. In the beginning the clues were small, but troublesome. He seemed to be born “grumpy”, and our first was always such a happy baby. It continued with his lack of eye contact, there didn’t seem to ever be a connection when trying to play singing games or silly noise games as I changed his diaper. He seemed intent on looking ANYWHERE but at you, even if you were an inch from his face. By this time, I was being told I was “too obsessive”, “you have to let him be different from the first child”. Then the WORST challenge was sleep or a dramatic lack-there-of. He slept only an hour or 40 minutes at a time, and nothing soothed him except the cozy pressure of being held and/or holding my hand against his chest. I was then being laughed at saying “my friend’s son didn’t sleep for the first 6 years, I’m sure there’s nothing wrong”, either way, not much of a comfort. The doctor looked at me as I pleaded for help, with judging eyes saying I should let him cry it out, which we did. He never stopped screaming, our little boy had a resolve on him unlike anything I had ever experienced in my life. Just when you’d think he was giving up, he was actually sucking back and reloading for the REALLY passionate screaming. Comments were made about “how great he is playing on his own”, “don’t worry; my kid doesn’t listen when I call him either”. And finally at a year and a half when speech should have been coming along, there was…silence. I went to the COCDA for a “play date” on delayed speech and began to suspect my concerns weren’t just in my head, but that actual problems existed.
Our IDP Consultant asked if she could practice her assessment techniques on Joshua which I gladly embraced, and she was the one to finally agree with me that something more may be happening with Joshua. I understand some parents would find this horrifying, however for me it was a great comfort, because my gut had been telling me for over a year that something wasn’t right.
Upon her suggestion, I went to our doctor and requested an IHCAN Assessment (Interior Health Children’s Assessment Network). It was amazing how easy it was now that I knew what to ask for. The waiting list was long, but we were on it, and with luck were able to start the assessment process sooner than we had expected. Hearing tests, sight testing, psychological tests, soon our son was seeing more specialists and hearing more acronyms than you can imagine, but we were getting somewhere.
The day of the final assessment took place at the COCDA just about a month prior to his second birthday and I have to admit, I was more nervous to be told everything was fine, than to hear a different diagnosis. I didn’t want my child to have any problems, but I knew if there were, (and we felt strongly there were) then I knew that diagnosis would come with support for us to best help our son’s development. By the afternoon, the verdict was in and we were told that our little Joshua had Autism Spectrum Disorder (ASD). My mind raced at what this meant for him, what it meant for me, what it would mean for our family. The conclusions I came to were, this meant assistance for him to help him come out of his hiding place and communicate the thoughts and feelings that were present but silent. For me, it meant I wasn’t such a horrible mother not being able to get him to pay attention, listen, sit still, communicate or SLEEP. For our family, it meant a better understanding of Joshua and his behaviour and it meant an army of friends, family, supportive preschool staff and the most wonderful autism therapists (OCAI) we could ever ask for to help him in his journey.
Today Joshua is 3.5 years old, and he’s attending preschool, he’s enjoying play with his sister and other children, he’s talking about Thomas the train, his favourite foods, and greets people with hugs and hello’s all while looking into your eyes, and for the most part, he’s sleeping! A great deal of his progress has been credited to the EARLY DETECTION of his ASD. He still has a ways to go, like any 3 year old, but in such a short period of time, he has accomplished so much, that we know he’ll experience continued success. And there is no greater comfort than that, believe me.
As a parent, I strongly believe you should trust your instincts, if “All Children Develop Differently” doesn’t comfort you, then I suggest talking to the COCDA or your child’s doctor about your concerns.