Early Illness

My autistic son Nicholas was born December 11, 2001.  He was my third son, my other 2 boys are “normal”.   There were no complications with his delivery, he was a healthy 7.2 lbs and I had a normal healthy pregnancy. All seemed well until he was 6 weeks old. At that time he contracted RSV (a serious respiratory virus that resembles the common cold) and was hospitalized at Mississauga’s Credit Valley Hospital. His reaction to RSV proved to be “worst case scenario,” which was strange given that he was otherwise a healthy normal 6 week old baby. At the CV hospital his condition steadily deteriorated over 5 days, culminating in respiratory distress, and ultimately respiratory failure. On a rainy, cold Friday night in late January 2002 he was transported by ambulance to Toronto’s Hospital for Sick Children where he was put on life support in the infant ICU.

My dreams are still haunted by that week at the hospital where I never left his side, and the subsequent weeks at Sick Kids where I tried to keep the faith. My memories are of days of terror and sleepless nights, puctuated by the sounds of alarms, bells and beeps, and visits from people in white coats. What were we doing here? At Sick Kids we were in a room with 3 other very sick babies. The other three babies had pre-existing conditions, making their struggle with RSV seem more reasonable and comprehensible. Nick did not have a heart defect, Nick was not premature, he was not small, or otherwise ill. Yet 3 other babies that did have these and other issues fared better recovering from RSV than did my son. Why? Something did not make sense.

There is much to be said about a mother’s instinct. I had a nagging feeling something was not right, even then. But I doubted myself. I doubted myself because I was post-partum, severely sleep deprived, under great stress, and I knew I was struggling to deal with the situation. I sensed the skepticism of the doctors and nurses when I attempted to indicate that I thought there was a problem, that something was wrong, that he was still not breathing properly. I trusted the medical system. I remember being asked repeatedly by hospital staff if this was my first baby. I understood the reason for the question: to assess my competence. They were very surprised when I told them it was my 3rd child. If I could turn back time, I would have asked more questions. I would have become demanding. For I now know that in spite of it all, I was fully in possession of my mother’s instinct, something that is worthy of trust.

After about 1 week in the ICU, Nick was extubated and sent to the 7th floor, general medical. There I expected that I would begin to see improvement in his demeanor and breathing. But that was not what happened. He still seemed to languish, to have trouble breathing, and my sense of inquietude just did not go away. It was a terrifying experience: there I was with this tiny baby who was not breathing properly, just him and me, in this little room. I repeatedly expressed my concern.  I think they wanted him out, to free up the bed. And they saw what they wanted to see.

We spent a week on the 7th floor. The day we went home is etched in my memory forever. I remember that walk through the hospital atrium, I recall the smell of the underground parking garage in winter, the sound of the traffic on University Avenue, the sight of a warm pink-orange sunset glowing behind lines of red brake lights on the Gardiner Expressway. I listened to the cheerful songs on the radio and dared to hope the ordeal was over. Little did I know, that it was only the beginning.

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About lifewithautistickid

I am a Chartered Professional Accountant (CPA), with an MBA and BA. I have been fortunate to have had an extraordinary life with an autistic kid. I have learned so much from him about people and life in general. I want to make a difference by sharing my extraordinary experiences. Raising a son with severe autism and developmental disability has made me realize how we who are "normal" do not understand "disability". Instead of trying to "fix" people like my son by burying them in the community, I would like to see a society that respects and honors them for who they are. The potential is endless, in a world that can celebrate with sincerity, the dignity of the individual. Love and blessings to people of all "disability" . That includes you and me!
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