I’m sure we’ve all done it at some point. We look through the photo albums, gaze at the images of our little ones and sit there, transfixed, in memory. We wonder – that thing he’s doing with clenching his fists – did that somehow point to autism? How he used to put his head back and say ‘aaahhh’ repetitively? The way he did the ‘5-point crawl,’ with his forehead on the floor? We just thought it was cute at the time, endearing. But he laughed! He smiled!
Of course he did, I remind myself. He still does. He was a happy kid then and he’s still, for the most part, a happy kid. School, high school, so far seems to be going well. Well in the sense that he’s getting where he’s supposed to be safely and on time, he’s not causing behavioral disturbances (to my knowledge), he’s not being bullied, and his new case manager is already working to meet his individual needs. Alas, his needs – that’s where the issues have come up.
When we had our meeting in the spring, and Nigel made that comment about H.G. Wells and Jules Verne books, the special education coordinator had asked if weekly check-in meetings with him “would be fine.” She seemed to believe that because he is intelligent enough to read those books, he has fewer needs. I diplomatically explained that Nigel would need daily check-in meetings, that one of his areas of deficit is executive function. Last week, at the end of the first two weeks of school, his case manager emailed to gently suggest that she sensed that Nigel might need two daily check-in meetings, as well as aides in all classes. Oh, blessed email! Blessed case manager! I wanted to hug her through the Internet ether, even though it pained me to admit, readily, that she was right. He needs even more assistance than I had thought he would.
At his IEP meeting the next day, which Nigel attended, things went perfectly. I think it was one of the best IEP meetings ever. Nigel presented himself exactly how he needed to – instinctively, it would seem. There are times when he lets his best efforts propel him through a situation, but this was not necessarily one of those times. He answered questions, but he allowed himself to be himself – he spoke in his low, halting voice, with a lot of pauses and ‘eh’ and ‘hmm’ between words. He took extra time before answering, and he did not make eye contact. I know that at this point in his life, Nigel has the ability to communicate ‘better’ than this when he is motivated to. But the way that he communicated at that meeting was exactly how he needed to in order to communicate his needs. To show them that even though he is now ‘high-functioning,’ he has needs that must be met in order for him to function as well as he can.
And this school, which is in the same district as the terrible middle school that did not meet his needs, this school is going to meet his needs. They have already rearranged his schedule so that he can have two study periods a day with his case manager (love her). Not only that, they still allowed him to keep his electives and the same teachers for his academic classes, minimizing how much change he has to assimilate. In addition to this impressive scheduling feat, they have also assigned him full-time aides in all of his academic classes and a student aide in his electives. The really amazing thing is that I didn’t even have to ask for the aides.
It is somehow hard for me to go from not having any of Nigel’s educational needs met and fighting – to having most of his needs met and not having to fight. I just can’t believe it. I’m stunned. I mean, of course I’m relieved and happy, but I don’t feel secure in it yet, which is sad. After being on the defensive for so long, it’s hard to let it go.
And it’s equally hard to let go of the questioning that goes along with the old family photo albums. The searching for signs, the wondering why, and how. The pain of seeing the birthdays without words. It’s all part of the experience of parenting a child with autism. But after a while, as I leafed through the albums, I noted that many of the pages were tattered, little rips here and there, some smudges. At first I was disappointed, but then I realized that those perceived defects were signs of enjoyment and appreciation. Our photo albums have been looked through a lot, and not just by me. My sons look at the photos and see the smiles, the good times, the birthday presents, the people who love them. They don’t dwell on their development or anyone’s diagnosis. They just enjoy the pictures, and, I hope, their memories.
I need to learn how to do that. And I also need to let go of the defensive parenting and not be skeptical of the long-awaited and hard-won positive educational setting. Oh, blessed school! My son has greater needs than we thought, but those needs are being acknowledged and met, and I don’t have to fight! Halleluiah!