The Year of Living Hopefully

Sometimes I’m asked when and how I knew Maddie had autism. The truth is, I didn’t know at all. As I mentioned in yesterday’s post, it was the psychologist that she met with weekly who gave us the diagnosis. Maddie had been seeing Dr. W for about a year when, at a routine parent meeting, the A-word first came up. Maddie was nearly 10.

I have to admit at first I felt as thought I’d been kicked in the gut. Despite all of the developmental challenges we’d faced together over all those years, my husband and I always shared the same view: Maddie was just a little behind. With quite a bit of hard work on my part and hers, and regular visits to occupational therapists, speech therapists, social groups, and her psychologist (and eventually a psychiatrist), we believed she would catch up eventually. Our philosophy was very glass-half-full. It wasn’t easy, but for many years I just thought, “It just means I have work to do.” I didn’t believe her future was at risk. It would all just come a bit later.

But as the years progressed, the development gap widened. Her intellectual capabilities were never in question, but her social skills were lacking, and she clearly had some trouble interpreting the behavior of others.

When she was maybe five years old, we were at a local play area. There was a boy of similar age with whom she really wanted to engage, but she wasn’t very skilled at it. Still, she just played near him, trying to get some reciprocity. This little guy was kind of mean, though. He was insulting and rude, but Maddie kept referring to him as her “friend.” As lovely as it may seem for a person to be immune to abuse, it was painful to watch her be mistreated over and over and not see what was happening. In fifth grade, she gave some boys at her table a few of her collectible erasers. These boys were not her friends, but Maddie has always been generous to a fault. Then the boys defaced them with gruesome details. She was not offended, but I sure was. Maybe the boys were just goofing around, but I thought they were making a statement.

Throughout elementary school, she struggled to cope. She didn’t complain or cry, but she didn’t exactly fit in with the kids and with the demands of school. She did OK, but lots of accommodations were required, and every year it seemed we were starting all over again with the teachers and with Maddie. What can we do to address her attention issues? Should we curtail her workload?

The question should have been, Why doesn’t she have an IEP? Because, believe it or not, despite entering school with an IEP because of her speech delays, she was considered ineligible at the end of kindergarten. No more extra help even though she desperately needed it.

So on Diagnosis Day, as I now call it, I was first distressed at the news, but then I very quickly changed my mindset. This word, autism – or Asperger’s, which was her actual diagnosis – was just a description of the Maddie I already knew. It didn’t change who she was. And having a diagnosis was actually going to be rather helpful. For one, I soon realized, I might be able to get her the services she desperately needs. Before that she just presented to some adults as a stubborn kid who refused to perform to her ability. But now, with that dreaded word, teachers would have some understanding. Also, I started to understand her better. And others would too.

My own clearer picture of my daughter came with some pain attached to regrets. My mind raced back to first grade, when homework became a part of our lives. The philosophy in our school district is that kids should have a little homework when they’re young, with increasing time requirements to prepare them for high school. I understand that on an intellectual level, but I sure hated that Maddie homework back then. First grade homework was expected to take about 10 minutes. It was very easy. Some simple math, perhaps, and spelling. Maddie is excellent and both, so it ought not to have been much trouble. But she absolutely could not focus, so those 10 minutes would become an hour. And I probably looked like an insane person before that hour was up. It was SO frustrating. The spelling involved putting two sounds together into a word. So, maybe the words of the day were “ight” words. There would be a list:  l + ight, r + ight, etc. All she had to do was put all the letters into one word. So easy! But this is how it went: she would write one letter, then pause and look at me. I would tell her to keep going. So she would write the next letter, then pause and look at me. I would say, “Write the whole word, and THEN look up at me.” But she just couldn’t, or wouldn’t as I understood her then. And then she would see one of our cats, and get up and pet it. This is how an hour passed. It was an hour of pure agony for me. Pushing her, sometimes yelling, freaking out. I just couldn’t understand why she wouldn’t just get through the work and be done. It was so easy!

Zoom ahead four years, and suddenly I understood. She had been doing the best she could. She didn’t have the ability to focus on a task like that. Her brain just didn’t work that way. She wasn’t being stubborn (although she certainly can be). It was all she could do. And I been losing my mind over it. Wow, did I have regret. And a little bit of anger that not one of the other gazillion professionals we worked with had ever suggested autism, or even that we get her evaluated.

It has been over five years since Diagnosis Day, and I’m still weirdly grateful for it. I’m not sure what Maddie’s adult life will look like, but my husband and I accept that uncertainty. We know she might need a lot of support from us, and we are completely prepared for it. Whatever works for Maddie is fine with us. Whether she can live on her own, or in a group home, or a nearby apartment with a fair amount of help from us, if she’s happy, we’re happy. She’s a great person with some wonderful gifts. She just happens to have Autism. And that’s OK.