At Least One New Diagnosis Each Year

Not long after Ian's diagnosis of Asperger Syndrome was made official, I joined a small support group. The two co-leaders were wonderful resources for me. The professional was a nurse practitioner who was able to address the medical aspects of autism and all it's related issues. The mother, who seemed to have all the parenting experience in the world (really, she was amazing!), had two children on the spectrum. With their help, in a few months I began to feel more comfortable with our situation.

One of the most astounding things they told me was to expect at least one new diagnosis each year for Ian until he was 18. At that time, Ian was 4 years old. He had already endured 2 ear surgeries, 1 eye surgery, and had 3 developmental and/or neurological diagnoses. To think that my little guy would go through more of this seemed so unfair. How on earth would he take it? Will he even understand? Would I be strong enough to help him?

Having that honest information in advance has made a tremendous difference for me because I have been mentally prepared for each new challenge. Every time I hear the words, "Mrs. Graham, your son has. . .X", I am able to take a deep breath and respond, "O.K., tell me what this means and what I need to do."

Being prepared does not necessarily make it any less painful though. I am usually the one who has to explain the situation to Ian, to tell him what the diagnosis means, how it will affect his life today. And I get to watch his eyes well up with tears because he can't help but be afraid of something he doesn't understand.

I try not to encourage Ian to look very far down the road, because there are too many unpredictable curves ahead. Changing course is always a scary proposition, but when he convinces himself that I have lied to him and made things different, he gets very angry at me. It is no wonder every time we visit a doctor, Ian wants to know if there will be any blood drawn for tests. Tests always seem to mean a new diagnosis. A new diagnosis means change. Change is usually followed by the loss of something he enjoys.

In December, we discovered he is allergic to milk and soy. That eliminated just about every food he loved eating. We were left with peanut butter, marshmallows and bread. Fortunately, he has slowly learned there are other foods he can eat; but it is obvious he does not savor them as much as his old favorites: ice cream, chocolate pudding, pizza, mac-n-cheese - those wonderful comfort foods that make us feel warm and satisfied.

This week the new diagnosis was reactive hypoglycemia. It is genetic. It requires him to eat every 4 hours and to limit his sugar intake. It is very difficult to explain to a 6 year-old.

Now, I can limit his sugar intake. It just takes reading labels and keeping healthy food in the house. What I am unable to do is make him eat. Concerta takes away his appetite for about 9 hours of the day. So far, Steve and I have been unsuccessful in making it clear to Ian how important it is that he eat SOMETHING when it is snack time at school and at lunch time - even if he doesn't feel hungry. He just won't do it. Perhaps he is waiting for a luscious piece of chocolate cake to fall from the sky and land in front of him. Or, maybe he wishes this was all just a bad dream. If he waits long enough, he will awaken and everything will be back the way he wants it to be.

One thing has changed positively, though. The psychiatrist put him on Zoloft to help with his anxiety. Since he began taking it, he has been getting to sleep sooner and with very few screams for me to rescue him from monsters after he gets into bed at night. He certainly seems more rested in the morning.

Part of his multidimensional personality has been more withdrawn over the last few days. A lot has been thrown at him lately: the 6 hour glucose tolerance test, the EEG, the beginning of a new school year, multiple visits to the doctor's office, a new medication, and the new disease on his chart. That is quite a load for a kid his age. Hopefully he will have time to adjust to these changes before the next ones come into play. Theoretically, he has 11 more years of compounding complications to endure before things start to level off. I just hope he can make it through it all and still be the amazing and wonderful person I know him to be.