I’ll never forget the day I had to face the reality that I had “that” child, that my son had special needs that would require me to be spending a lot of my life advocating, learning and managing his disorder. I fell (or intentially hid) in the same trap many do when dealing with SPD kids – because he looked and sounded so normal in so many ways, I wanted to believe he wasn’t REALLY special needs. When I had to face it head on for the first time, it hit me like a ton of bricks really, as I’m sure it does any parent.
There were certainly plenty of struggles already – after all, he didn’t eat food until over the age of 2, had been in some form of therapy from 15 months old, and already struggled with social skills despite a very extroverted nature -- so we’d had no shortage of opportunities for the reality to hit us. But somehow it didn’t hit full force until preschool – and perhaps part of the pain was because the moment felt so public.
We had enrolled Josiah in a preschool program that seemed to fit his needs exceptionally well – for 45 minutes on each of the 3 days he was there, the kids participated in a tumbling class, walking on balance beams, bouncing on a tumble trak trampoline, hanging from bars. In a nutshell, it seemed like built-in sensory therapy. But we were a few weeks shy of his official diagnosis and had so much to learn – and if there was a lot we didn’t understand about Josiah and his SPD, there was even more the staff didn’t get either.
They were phenomenal, really, in trying to help troubleshoot the problems and create an environment where Josiah could succeed. Even while I was grateful for their commitment, it was such a struggle to be called in to the “principle’s” office to discuss your child’s issues. I cried through nearly the entire meeting. My tears came from a variety of places – partly relieved that I wasn’t the only one seeing his “problem behavior” and finding no success with traditional discipline strategies; partly proud of the positive traits they were praising in my son; partly grateful at their apparent interest and willingness to help in any way they could; partly frustrated at feeling clueless myself on what to do or how to help; partly embarrassed and fearful of judgment from others about our parenting or my child’s personality. It was, in a given moment, the full range of emotional highs and lows that come with parenting a special needs child, especially one who looks and sounds so “normal” at a glance.
Every so often, something happens that brings me right back to that emotional turmoil – a critical comment from a loved one, looks of judgment from onlookers in public, the challenge of explaining it to friends or peers, some of whom understand and some who seem not to. And there are no shortage of practical challenges that aim to incite those emotions (from behavioral difficulties in Josiah to fights with the insurance company) so I know those moments will keep coming. But I’ve found that I rebound just a little bit quicker each time, that I can handle it a little bit better in each subsequent situation, that I seem to find a bit deeper source of grace every time I’ve faced with one of these moments, that I grow and learn just a little more about myself, my life, my family, every time. And that really is what it’s all about, right? A bit more grace and a bit more understanding with every new step, no matter what path your sensational life is taking.
Yes - I had the same situation in my son's preschool and had the same array of emotions.
ReplyDeleteMy son is 4.5 now, and I've decided to homeschool. One reason is that I never want to have to experience one of those situations again.
I feel now that he is home and I can deal with him on my own terms that his "special needs" are somehow....invisible?? I also feel like with the OT and time he will grow out of this. I often wonder if I'm kidding myself. I suspect I'm headed for one of those unpleasant revelations about the permanent state of his "special needs".
Yeah we tried the preschool thing for about 6 months before deciding to pull him out and homeschool him. I'll do some blogging about homeschooling now and then, I'm sure. We're doing kindergarten with him this year and it's going pretty well so far.
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