The child who is fine 90% of the time

I like reading articulate and thoughtful blogs from mothers whose kids are going through challenges similar to mine. I like knowing that Howard and I are not the only ones who struggle. Today over at Mir said this:

Both Otto and I explained the constant heartbreak involved in keeping him [her son with Aspergers] okay. The judgment from others, because 90% of the time he looks like every other kid, and when the 10% of situations where he simply cannot keep himself together hit, it’s obvious that onlookers wonder what egregious failure of parenting has resulted in such unacceptable behavior. It’s better, I assured them, than when he struggled more often. Of course it is. But the less he struggles, the harder the remaining struggles are, simply because others believe he “should” be able to handle it. After all, he’s fine most of the time, right?

I think Mir’s son’s issues are more severe than Gleek’s but that is exactly how it feels. Everyone in our family has learned how to adjust and manage. Her teacher and I communicate regularly. Most of the time it all works. Except when it doesn’t. Out of all of us, I think Gleek works the hardest. I want to cry on the days when I know exactly how impossible it is for her to keep it together, but I still have to apply consequences. Skipping the consequences does no one any good. She needs to know where the limits are. She needs to know that nothing she does will move those limits. Firm limits are reassuring and make the next incident less likely to happen. Knowing these things does not make the hard day any easier.

Today has not been a hard day. So far it has been a good one. Over the last weekend we’ve been going through a book about ADHD together. The resulting conversations have been very illuminating for both of us. It is just that this post from Mir made me look and see how much effort has become invisible through long habit. Parenting Gleek is a frequently exhausting task, but not nearly so exhausting as being Gleek. She constantly amazes me with her strength and endurance.

Edited to add: After writing this post I did some reading of blogs written by mothers with autistic and disabled children. Now I feel compelled to note that on the grand scale of things I have nothing to complain about. My fatigue is nothing compared to theirs.