Finding Ourselves on the Autism Spectrum

Letting in the light

"Kirche Gröben" (big church), Brande...

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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.

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Comments on: "Letting in the light" (13)

  1. This is a beautiful honest piece of writing..thank you…Eliza Keating

    • How nice of you to say that. It makes my day.

      I just popped over and took a quick peek at your blog. I love the poem in your most recent post (not just saying it to be nice, either:) ). Guess I’ll have to read some more.

      Thanks for stopping by to comment.

  2. I would appreciate that Diane ..and again so nice to meet you..ELIZA

  3. Mary Mary said:

    I would not be surprised to find that most of us keep our own Pandora’s box of emotions and secret thoughts. For me, it is sometimes because I don’t want to sound whiny. More often than not, though, I just don’t want anyone else trying to fix or poke holes in my carefully crafted misery.

    Still, I am always grateful when I take the risk of speaking out and find someone who ‘gets’ what I am saying. I am particularly moved when I take the risk of sharing something painfully honest and discover I may have said just the thing someone else needed to hear to not feel so lost or alone. This, perhaps, is what makes saying or writing anything remotely risky worthwhile.

    Then, there are the times when I share something and feel uncomfortable, cheated, or even attacked by someone else’s response. I used to think that I had to take such responses with grace and tolerance. I even developed a certain talent for accepting unsolicited criticism with poise.

    Perhaps I am just crankier now…but I’m a lot more straightforward about which conversations are worth my time and energy and which conversations might as well be abandoned without guilt.

    I love that you are feeling more comfortable in opening up. You have clearly found a kind and supportive audience for which to write. Don’t doubt that you have plenty worth saying…whether you are speaking from your head or your heart.

    • I’m with you on not wanting anyone to tell me not to feel the way I feel or to try and change it in some way, even just to help. If I’m in the middle of something, I’ll come out when I’m good and ready and not before. It is nice, however, to know someone can relate or that they care.

      I do love when somebody gets what I’m saying or just lets me know it was helpful to them in some way. I haven’t had to deal with any serious criticism in this community, and it provoked such a strong reaction in me experiencing unexpected criticism in a few other places (cause you know I really don’t say anythign terribly controversial) that I don’t think much good can come from anything other than letting go and walking away – at least not for me.

      I don’t know whether you’re crankier now or not, but for myself, I think I’m more aware of age and passing time and actually caring how that time is spent. Also caring how my limited reserves of energy are spent. There are people counting on me to keep it together, and when I let myself get too far sidetracked, it affects them, too.

      You always did “get” things I was trying to say, and your words of encouragement mean a lot to me.

  4. Aspergirl Maybe said:

    I am so moved by your openness and eloquence in this post, Diane. The phrase about letting in the little streaks of light is such a beautiful image that it brought tears to my eyes.

    On a more practical note, I don’t know if you’ve ever read this letter written from the perspective of a child with autism to family he is going to be visiting: http://joyinthevalley.wordpress.com/2010/12/22/holiday-letter-from-an-autistic-child-to-his-family-and-friends/. Perhaps a letter like this sent ahead would help with your family, I don’t know, but I just wanted to share it with you.

    • Thank you for the very supportive feedback. I’m glad this came across in the way I was hoping.

      That letter in your link is very well-written. What a good idea. I think this type of thing could probably provide some enlightenment for some of my family members and even friends about specific issues, although I think they will be the ones who already listen and respect my needs. They are also the ones with attention spans long enough to read a carefully-worded letter. I do feel like it’s time to start sharing at least a bit more with them. Then there are some other people …

      I’m writing my response with the idea that this great suggestion of yours is in reference to what I’ve previously shared elsewhere about some upcoming plans of mine, so please let me know if I misunderstood something. I really do appreciate your support and help. I didn’t write any response at this point to your own family-related post, because, frankly, I just don’t know what to say. Family can be tremendously challenging. I am praying for you and your situation.

      The rest of my comment has now grown long enough that I’ve made it into its own blog post.

  5. Aspergirl Maybe said:

    Yes, the letter was in reference to your upcoming trip. Sorry, I tend to assume that other people can read my mind and know what I am talking about without me actually telling them. That is definitely a bad habit of mine! 🙂

    I appreciate the prayers and thoughts about my family. I live pretty far away from them, so that is a big help in managing the situation.

    • I was actually assuming I might be the one doing the assuming – if that makes any sense :). I got halfway through writing a whole blog post and suddenly realized maybe I got it wrong. By then, I wanted to finish the post either way, but I thought it still wouldn’t hurt to check my thinking.

  6. Wow, this had me smiling at the end. It is very refreshing.
    I think I’ll get out the windex now. 🙂

    • Thanks, Bruce. I read another article somewhere in which the writer mentioned needing repeated applications of windex and plenty of scrubbing. 🙂

      Thanks for stopping by to leave such a nice comment.

  7. This is so moving. I had a similar experience. Those geographically close to us shared in our experience, but it wasn’t until I updated my Facebook status last year that I really started to open up. Once I cracked open that window a little, I just wanted to open it wider to let all the sunshine it.

    Great post!

    • You know, I’m still finding more and more that once I open up a bit and nothing terrible happens, I feel such relief and not holding everything in that I want to keep sharing more. I wish it hadn’t taken me so long to begin to figure that out, but I suppose things happen when they happen.

      Nice of you to visit. Thanks for leaving such a lovely comment.

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