Saturday, August 21, 2010

A word from the first mate

When my son was first diagnosed with autism, I spent many hours searching for answers and information on a subject I knew very little about. Not that it mattered at the time but it has occurred to me since that I rarely came across information from the father's perspective. Looking back, I think it would have been useful and perhaps comforting to have had that. After speaking with my wife, she has agreed I should share my perspective, the mistakes I made and some of my most vivid memories. In a way this is cathartic for me but it is also a bit painful because I will be reliving some difficult memories of tough times and admitting to some of my shortcomings. My hope is my experiences will be helpful to fathers going through what I did.

For as long as I can remember, I have always wanted to have children and my wife's first pregnancy was a joyous time for both of us. There's an old Italian proverb that says "You don't become a man until you make a boy" and when I found out we were having one, I couldn't have been more thrilled. A trip to a sports store was suddenly not complete without taking an inventory of all the great equipment I could buy my little man: a baseball glove, hockey skates, golf clubs. I fantasized about taking him to soccer games, tying his hockey skates or putting my arm around him to console him after a tough loss. Little did I know then that it would be years before I would be able to enjoy any of these common paternal pleasures.

They say that autism cannot be diagnosed before the age of 18 months but I can remember distinctly my wife saying to me not long after my son was born that there was something wrong with him. I brushed it off, chalking it up to his gender and premature birth. I reasoned he was still catching up. I said these things despite the fact that I was fairly obsessed with the milestones that all parents look for in their young children. Unfortunately, this became a pattern that repeated itself many times in the next year: my wife would express concerns and I would dismiss them. My son had a habit of spinning things and I made the comment to my wife about how good he was at spinning several pot covers at once on the kitchen floor. She said that it was because he was autistic. She said it matter-of-factly and it irritated me. After many other similar conversations during our son's first year of life, I finally told her she was imagining things and to stop talking about it. What I was inadvertently doing was making my wife feel alone and my only excuse is I truly didn't know any better.

I wish now that I had listened more carefully to what she was trying to tell me. Not that I didn't see the signs but denial "ain't just a river in Egypt", as they say. We had a nephew and good friends with a son. I couldn't help but notice that not only did my son not reach certain milestones on time, the gap between his development and these other boys seemed to be widening. But by far the most disconcerting moment I had in my son's first year was on the day of his first birthday. Is there any milestone that a parent looks forward to more than that of their child's first birthday? We went all out: streamers, balloons, a big cake, noise makers. You name it, we had it. I came home early from work completely jazzed to party with my son. So we sat him in his high chair, put a party hat on him and sang happy birthday at the top of our lungs. I was waiting for his laughs and giggles but none came. He didn't open his present and wasn't interested in his cake. In fact, he stared into space the whole time and no matter what we did, he wouldn't look at us and he wouldn't smile. I'll never forget my wife's repeated pleas of "Please smile honey!" so she could get a picture of this momentous occasion. I remember feeling very disappointed but in retrospect this was the point where I should have realized my wife was right and something was wrong.

It wasn't until I came home to my wife, son and Paula, from Early Childhood Stimulation, that I came to accept that many of the dreams I had for our son might not come to fruition. I knew about the appointment my wife had made with this specialist and why. When I walked in the door, the three of them were sitting in our living room and after some initial pleasantries, my wife asked Paula to tell me what they had been discussing.

"Your son is likely going to need help for the rest of his life - he may be autistic."

I felt like I was punched in the stomach. I don't mean that figuratively - I literally felt like I had been punched in the stomach because I lost my breath and felt physical pain at that moment. When I was in university, I worked in an institution that had severely autistic adult residents. My son was autistic? He couldn't possibly be like them. I mumbled some questions but she said she wasn't qualified to give us a formal diagnosis and we should immediately seek a professional opinion and have our son assessed. I'm an educated man but I have yet to find the words to describe the fear I felt at that moment. The only analogy that I can think of is trying to describe to people who don't have kids what it's actually like to have them. It is difficult if not impossible. All I knew was that our lives had been terribly altered and we needed to do something.

We got a referral to a pediatric neurologist in a neighbouring city, my hometown of Saint John. He seemed like a nice man and we watched while he observed our son and asked our son to stack three wooden blocks and draw a line on the back of the referral form. After a few minutes, he looked up at us and said our son was definitely severely autistic. "What do we do?" we asked. "There's not much you can do." He said this with a smile on his face. Then he looked at my wife and asked a very interesting question: "What are your expectations for your son?". I don't think he meant to be condescending but when I looked at her, I immediately knew that this made her very angry. They say that you should never approach a mother bear when she is with her cubs. It would be fair to say that when it comes to our children, my wife has a similar temperament. I mean this as a compliment. When he asked her that question, I literally leaned away from her so as to avoid the shrapnel from the impending explosion. My wife didn't miss a beat and quietly replied through gritted teeth, "I want my son to grow up to be the Prime Minister, what do you want for your children?". He chuckled at her response and I feared for his life. My wife set the tone that day for the fight we had just started and I love her for it. We would be the ones who would set the expectations for our children and no one else. The conscious decision to do this was a critical element in our success. We believed that our children would rise to the level of our expectations and no further so we had to set the bar high.

I am a financial advisor by trade and am very fortunate that I make what most people would consider a very good living. But I don't know many people who wouldn't notice an extra $50 or 60 thousand dollars going out of their bank account every year. I have always practiced what I preach to clients: don't spend more than you make. It was very stressful to be put in a position of having negative cash flow for several years. I don't regret a single penny of what I spent but I am quite literally still paying for the recovery of our children. When the outlay of therapy costs exceeded $250,000, I stopped counting. I simply could not bear to know how much more it was going to cost us financially. I remember seeing my wife come home with several bags of toys for what seemed to me like the tenth day in a row. I asked her "Is all of this absolutely necessary?". She pointed her finger at me and said, "I'll worry about recovering the kids - you worry about paying for it." I never questioned her again after that (the whole mother bear thing). At the time I found it overwhelming but the end result is I may have to work an extra few years before I can retire, which is just fine by me. It was, by far, the best investment I have ever made (and I've made some pretty good ones). What breaks my heart is most families don't have the financial resources we have. For many of them, the decision between keeping their house or paying for therapy has to be made. This is nothing less than an atrocity and disastrous for our society because the short term costs to any government to help families recover their children is far outweighed by the future savings. In our case, our children would have needed teaching assistants costing a minimum of $50,000/per year x 13 years or $650,000. Our children would have been entitled to these services in our public school system. The costs would continue into their adulthood including long term care. Each of our children would have cost the government a minimum of $1 million dollars had we not invested in their futures. Instead, our children will grow up, get an education, get jobs and become taxpayers. I will never understand why governments in this country don't allocate resources to fully address this issue. It makes sound financial sense to me. I am still waiting for their thank you note, by the way.

If you have children, you might be wondering what kind of toll this would take on a marriage. I can tell you it is a high one. I've read where the divorce rate for parents with special needs children is something ridiculous like 70 or 80%. My wife and I have a very good marriage and we're not the type to "bottle things up", if you catch my drift. But when you are enduring a 24 hour a day 7 day a week stress-inducing siege, nerves get frayed and tempers get short. We argued and fought much more than we do now. In some ways, it may have been our way of relieving the pressure we felt. When the chips were really down, however, we were there for each other. When I was really down, she was there for me and vice-versa. We got through it one day at a time and I have no doubt that our marriage is stronger for it. I would never judge those couples who choose to go their own ways - we just never considered this to be an option.

I do not live my life in the rear view mirror but if I could go back and change one thing, I would try not to have been so angry. I was angry at everything: the money we were spending, the lost dreams, the lost freedom, the lack of help and resources we had. For me, anger is mostly a non-productive emotion. It affected my relationships and my work in a negative way. It didn't help that I'm not a patient man. Like most men, if I see a problem, I want to fix it. This was something out of my control except for providing the funds to do it. Most of all, I wish I had been more patient with my wife. When my wife complained I took it personally and thought she was asking me to fix things with immediacy. Things couldn't be fixed and this made me angry at her. All she wanted was for me to commiserate and support her in her struggles. She was under unimaginable pressure to recover our kids and I should have been more understanding. I should have listened and agreed when she said "life is not suppose to be this hard" instead of trying to tell her how to make it easier or complaining about how she was making my life harder.

I think the moment I recall being most angry was when my wife explained to me that we had two autistic kids instead of one. I exploded. "What the @$&%! did we do to deserve this? Are we bad people? Why us?" I raged. She looked at me and calmly said, "Why not us? What makes us so special as to deserve perfect kids? I don't know yet 'why' but I know there's a reason we're going through this." I pray that one of the reasons is we provide hope to families of newly diagnosed children. We didn't have that. People kept telling us to lower our expectations and I felt they were trying to "protect" us from being disappointed. I think this is a terrible mistake. We were already extremely disappointed. We set the bar high and never gave up until we reached our goal. I would hope all families would do the same.


  1. I don't know what to say..
    If i'd say "great post" or "great story", it may sound like i was happy for both of you having 2 special children.
    But if i'd say "i feel sorry for both of you", then it would be even more terrible.
    I'd only pray and wish that the two of you be stronger as the years pass. Don't think it's a curse. Think that God gave them to you not as a punishment but because the two of you were the only people capable of loving these children.

  2. =*) What a beautiful and poignant addition from the male perspective. I am misty-eyed and at a loss for words. Thanks for sharing everything! I wasn't raising the bar high enough and just bent over an took it on my son's behalf. It's time to raise the stakes. =)

  3. Travel Therapy: Thank you for your comments but you need to understand that this blog is our re-telling of our journey out of autism. Our children are fully recovered now. This is the story of how we achieved that goal. Please keep reading about our journey. We welcome your input.
    And Wendy: you go girl!