A Checklist of Life's Rules?

On Friday I wait for D’s all-day re-evaluation of his autism with a neuropsychologist to be over. Before this winter, I did not know that the profession of a neuropsychologist even existed. After lunch, K & I shop at a book store to pass a little bit of time. I have just told K that I need to read the books I already own and not buy any new ones, but on this visit I find a true story called Miracle Run by Corrine Morgan-Thomas w/ Gary Brozek. The front cover reads, “Watching my autistic sons grow up – and take their first steps into adulthood.” So I buy yet another book with the hope that maybe this book will hold the answers that other books have not held for me.

On page 2, Corrine writes,
“I was tired that evening. Not the usual ‘I worked hard all day and the traffic was bad…’ kind of tired that most working mothers feel. Now, I would have gladly traded my tired for that tired. My tiredness was the kind that put the test the idea that God never gives anyone more than they can handle…. I’d begun to believe that maybe God was using me as a test subject, seeing just how far he could go before one of his creations snapped.”

As soon as I read that page, I want to buy the book because it is as if I am her. Most of the literature I have found so far is written for parents with small children. There is this movement to help the young children before they get worse which is really good, but for those of us with autistic teenagers, we are left wondering, “Now what?”

D is high functioning, but still M and I find ourselves constantly reassuring ourselves that D will be okay. Our mantra goes something like this: He will be okay. He will find his way. He will be okay. He will figure out something he likes to do, and do it well. He will be okay.

Through Friday’s evaluation process, I realize something that M and I have intrinsically known and used for parenting, but have not consciously articulated or taken into account for all situations since hindsight is 20/20. The realization is that D needs to be told what all the rules are for life; he is very concrete in his thinking; and if he is told the rules, then he does not break them. Throughout D's life, we have told him what we expect and he follows through, especially when the rules involve safety. My son's fear of danger... be it an accident or a tornado keeps him grounded in the importance of self-safety and the safety of others. For example, in the past if he has stayed home while I run to the store, he has been told not to answer the door or telephone, which is a concrete rule that he easily follows.

He also knows not to drink, do drugs, or smoke -- all things that translate to "not getting hurt" or seeing the harm it has caused others. I am also confident that D will follow the rules when driving because the consequences are concrete enough. He does not want to get a ticket for driving too fast. He knows there is safety involved, and he has seen accidents which to him are scary. When the time comes, we can go through the rule book, page by page.

The only time he breaks a rule is when he does not know the rule or does not think through the consequences... like on the Friday night when he stayed up past his bedtime to finish playing a computer game. He was wrapped up in the game and lost track of time. Now that he knows the consequence will be losing his game privileges which motivates him to be more responsible and more careful about time. He now knows to follow that rule.

What makes me really tired today is that the realization that I will have to think ahead and think of all possible rules that he should know just in a case he gets himself into a situation we do not anticipate as parents. Is there a life checklist? Everything from No stealing; check. to look both ways before you cross the street; check. But what do we do for the situation where there isn’t a rule book? How many millions of possibilities are out there that we as parents haven’t experienced to know what to tell him yet? I try and think through all the things I knew not to do as a teenager and adult. He is a sweet boy who never means any harm to anyone or anything; yet, we have learned that there can be problems if he breaks a rule that he cognitively just does not understand yet. My head hurts just thinking about it. This is why I related to Corrine’s tiredness. This is why I too sometimes wonder if I am failing God's test as his mother.