Thursday, June 24, 2010

Hardest Questions

A few days ago I took my middle child, Zachary, to see our developmental pediatrician regarding some concerns I had. While she did note that Zach is very impulsive, she basically told me that when he acts up or gets emotional it is the product of having two special needs siblings and nothing more. This made me want to cry for two reasons. One, he is stuck in a tough situation. And two, someone saying out loud that I have special needs kids, despite the fact that it is stating the obvious, always feels like a strange dose of reality.

On the drive home from the appointment, I decided to talk to Zach about his brothers. Zach, while typically developing, does have a milk allergy as his "issue," so I angled it that way at first, talking about how everyone is made differently and everyone has different things about their bodies or minds... things that they struggle with.

Regarding Ben, who has high functioning autism, we talked about how the way he looks at the world is different than the way the majority of other people view things. I told Zach that Ben cannot help it, but also that it would not change. To put it to a child's terms, I said, "You know how Ben is obsessed with his Star Wars figures and he lines them up and gets mad if anyone touches them? Well, when you and Ben are big grown ups, and you go visit him at his house, he will probably still have his things set up a certain way, and he still won't want you to touch anything." I looked at Zach via the rear-view mirror to see if he understood. He was nodding his head, but I know it is a tough concept to swallow; one that even my husband and I are still coming to terms with. Ben is brilliant and wonderful, but there are things about him that are classically autistic and those things will not change. Zach will eventually move on to easily make friends, go to the prom, drive a car and play on sports teams. Those things may not be important to Ben, or may be impossible. In time, I know Zach will have more questions, and I will be here to answer them.

Next we talked about Joshua. Joshua has a movement disorder and developmental delays that are presumed to be cerebral palsy. The jury is still out on whether there could be more to the picture. He tends to look autistic-like at times, though seems more social than Ben. Zachary wanted to know if Joshua's brain worked the same as Ben's, and I had to say that I was not sure yet. I told him what I do know, which is that Joshua loves to play with "ZaZa," (babytalk for Zachary), and that he is happy. I told Zachary that even though Joshua has to work so hard to learn things, that there is no reason to feel bad about that. When I turned around at a light to look at him and saw tears in his eyes, I knew I had struck a nerve. My heart broke a little bit. My active and sometimes frustrating but also sweet and loving 5 year old feels sympathy and maybe a little guilt over a baby brother who struggles to walk, hates eating and has to spend most his mornings at either pediatric therapies or medical appointments. Like with our Ben talk, I know there will be more things to discuss regarding Josh in the future.

These are the moments of parenting that you can't write a guide book for. Even if someone tried to tell me what to do, I would still feel like I was running in a crowded street with my eyes closed. But somehow, I got through it, and I know I will again and again. Zachary's big hug at bedtime that night assured me that I must be doing something at least half-way right. I guess that is all I can hope for.

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