So I’m just realizing something. I tend to think of myself as not being particularly creative. I can frequently see new ways to apply other people’s ideas – which I suppose is creative at some level – but I rarely come up with anything original on my own. I’m OK with that. I have other skills. But as I’m looking back through some of my old journals, I’m realizing I was actually making something up – I was trying to put down “nice” things and to paint a pleasant, “normal” picture of our lives fit for public consumption. Not so much in Simon’s toddler journal, because that was really written just for myself. But later on, I started taking some journal entries and emailing them to family living hours away. Somewhere along the line, I started writing with my little readership in mind, and I censored myself accordingly. I wrote what I thought would be amusing or cute to make aunts and uncles and grandparents feel good and feel positively about my own little family. There’s nothing inherently wrong with that. The grandparents, in particular, seemed to enjoy it quite a lot and look forward to my next installment. But I had stopped writing for myself.
Then there was the wall my Simon hit in first grade. After we had pretty much convinced ourselves that we had this “recovered” autistic child and were happily patting ourselves on the back, we discovered whole new issues and a whole new level of discomfort. I still remember the first phone call I got two weeks into the school year informing me that Simon “wasn’t adjusting well” to first grade. That started us into a downward spiral from which it’s taken years to climb back up to a place where the future looks promising again, if very different from what we had previously envisioned.
When Simon was little, the things with which he needed help seemed more straightforward to me – talking, turn-taking, sensory issues, motor skills. I seemed to have an aptitude for approaching these things, and more than one therapist suggested I might make a decent therapist myself. And while Simon had enough social anxiety at four years old to warrant putting him on medication, he’d made great progress and had been off the medication and doing fine for months by the time he finished kindergarten.
Then first grade came with a full day of structured activities, more challenging social interactions, and a well-meaning teacher with terrible instincts and no time to listen to me. Simon began to hate school and to see many of the people around him as enemies. We were dealing with school staff who didn’t know much of anything about autism and seemed to need to see their own methods fail before considering any of our ideas – not that we had much clue what we were doing, either. We were in uncharted territory, and we had little in the way of guidance. But we were definitely having more success at home, and we knew there had to be a way to expand that into our son’s school experience.
While all of this was going on, we were still living in the same neighborhood and seeing all the same people we had before things went downhill. We didn’t know how to explain to them that the child who seemed fine when they saw him in other situations was really struggling now just to get through a regular day. For better or worse, Simon eventually started having problems in other areas, too, as he lagged behind his peers socially. My husband took the lead on talking to some of our friends. I mostly did what I do, which is to shut down. I was never very comfortable socially myself, and having a child so different from everyone else’s made that much worse. I stopped talking or writing to people except when I could come up with something to say that was both pleasant and true, and that happened less and less frequently. I was too overwhelmed with the challenges we were facing to care much about that at the time.
I became more and more isolated not knowing how to “fix” everything that seemed to be broken. I didn’t know how to process having a child who was not only struggling but was doing so in such a way as to make people believe he was purposely being difficult. He didn’t cry or withdraw every time he got overwhelmed anymore – now he was becoming angry and confrontational. I’m going to go ahead and give the first grade teacher a big slice of the credit for that development. I eventually started calling her the “High Priestess of Love and Logic” behind her back. It worked with her own kid, so it must be the answer for everyone. My son’s reaction to being continually asked to solve his own problems when he had no tools for doing that was to finally get fed up. And while he made improvements all along the way, I’m not sure he’s ever really stopped being fed up. However, he has started to see the positives in some things and to actually want to do well in school and get along with other kids, and that’s huge.
So the original point of all this when I started writing today – besides distracting myself from dwelling on Simon’s upcoming optometrist appointment – was that the reason many people don’t know much about our lives is because I haven’t actually told them much of anything. I’ve continued to write occasional emails and to make infrequent visits to see family and friends who don’t live near us, all the while trying to look like everybody else. And while I find myself mentioning autism fairly early in meeting folks in our neighborhood these days, they mostly don’t actually see much of Simon – except those who have know him for years and have kids whom he sees at different activities or even, on rare occasions, just to hang out and play games.
It wasn’t a conscious effort to exclude people. It was just that for so long we were the only people I knew dealing with any of this. I only ever talked about things with teachers, doctors and therapists, and my husband. Gradually we’ve let some others in, and we’ve even met a few other families in similar situations. People have been overwhelmingly supportive and understanding – or at least not openly judgmental. No one besides the occasional playground bully or passing stranger has ever been deliberately unkind. Most people want to be kind, and if they don’t, then I don’t want them in my life.
So why do I find it uncomfortable outside this wonderful blogging community to share when we’re having a “moment” or a struggle and it happens to be related to my child having autism? I have no problem mentioning injuries, attitude problems, or things I just find frustrating. I’m sure people I’m friends with on Facebook know more than they care to about the vehicle I currently drive. They all know I “share” items related to autism from time to time, and a few have either asked about our situation or asked for some general information on the subject. I suppose I just have it in my mind that most people aren’t going to “get it” when I share something spectrummy, because that’s not part of their experience. It is, however, part of mine – every day. And maybe people who care about other things going on in my life would like a chance to show that they care about these things, too.
So I posted something spectrummy on my facebook profile today about Simon’s anxiety over going to the eye doctor, and I’ve gotten several supportive responses already.
“Begin challenging your own assumptions. Your assumptions are your windows on the world. Scrub them off every once in awhile, or the light won’t come in.” ~Alan Alda
(I love Alan Alda.)
As I let little streaks of light into this closed-off room of mine, I can see myself and my life a bit better, and I’m finding myself wanting to let in just a little more. Sharing through this blogging community has become part of a larger process for me, and I’m grateful to be having this experience.