A Wife's Intuition

We had our second child when my first was about one and a half. Both births were natural (non C section) and the boys both had jaundice and had to stay in the hospital under lamps for several days. Our oldest stayed with a nanny for those few days. When we returned home we noticed he seemed distant and withdrawn. Naturally we thought he was just upset that mom and dad were away for so long. He never recovered.

This is probably coincidence but it marked the turning point in our son's behavior. He started walking on his tiptoes, hoarding things (crayons were very popular), lining up his toys and stemming on rocks in the park. He also began to eat less and throw up several times day.

My wife was alarmed but I remembered being sick a lot when I was young so played it down. He seemed healthy and I knew Autism was when the child bounced around out of control. I had watched Rainman and my child was not like that either. My wife new better. God bless her intuition.

A few months later my wife took our son to get checked out. I returned home one day to see a letter on my desk saying his ASD diagnosis was: "Most Likely."

My heart almost stopped. My world was changed forever. I can not begin to describe what this means to a parent.
For the next few weeks I would find areas where I knew I would not be disturbed and I would cover my face and sob. I felt such a deep despair. I knew this wonderful gift we had brought into this world no longer had the opportunities many other did and would be the victim of a world that does not care about people with disabilities. I would cry and cry feeling like I had some how failed to protect him. This feeling is still with me today but I lock it deep down within me and use it whenever I feel tired or lazy. Every time someone tries to rip me off or a consultant acts unprofessional I let it fire me into action.

When a family member dies we eventually get over it. When an adult passes away we morn but know they had a meaningful life and we were glad to have known them. When someone gets Alzheimer's we are sad but feel some comfort that at least they had some life.

When a child has ASD they usually have about 1.5 years of normal life. Sometimes they learn the alphabet, can count to 10, can say mom or dad, or even say your name while looking in your eyes. Then that all stops. They stop talking. They stop looking in your eyes. Everything goes dark.

Your child does not physically disappear but the child you knew does. It is probably one of the most disturbing events a parent can experience. It is no surprise that it is estimated over 80% of families with an ASD child are divorced. If your relationship with your spouse is not solid before, it will most like crumble under the stress of this experience.

After I finished feeling sorry for myself I realized that my son will likely outlive me. What then? If I have not provided for him he will be institutionalized.

I quickly decided I had to do the best I could for my son before he was left alone in this world to fend for him self.
This is now my mission in life. Heaven help those who get in my way.

Introductions

I am a father of two boys. One is over a year old and the other is three and half. The eldest was recently diagnosed with ASD at Sunny Hill in Vancouver, BC, Canada.

I have found the entire adventure to be much different than I could have imagined. Before the diagnosis I knew nothing about Autism or ASD. I did not even know what the words meant.

I have found the government is almost useless and makes you beg for funding. The diagnosis process is slow and painful. The snake oil salespeople are everywhere preying on the easy target parents who will sell their houses for that miracle fix. Thank god the parents are so helpful. This has been what's kept me sane. Good honest people who are in a similar situation and take time out of their busy day to help me. This blog is my way of returning the favor. I hope it is useful and helps other newly diagnosed parents.

This blog is my story but I welcome comments if it is helpful to others.

Thank you,
Dad