Burning Down the House

“My house! Is out of the ordinary,” is one of the lines from the early 1980’s new wave hit “Burning Down the House”. Upon closer inspection, 80% of the song feels like it was written by my family this past weekend..

As I’ve written about some through various “scenes” on my Twitter account @AutismScenes, Noah had a violent, nearly uncontrollable history of behavior through age 7 or so. After being placed in private day placement at an amazing school, they had his inappropriate behavior reduced by about 80% in quantity within the first school year. This was life changing for our family. Noah retained his ornery personality, while being considerably less of a danger to himself and others. Understandably for a mostly non-verbal child, his significant behaviors haven’t disappeared entirely. He still sometimes markedly struggles with transitions, routine & weather changes at times like many kids with similar diagnoses.

This weekend however, all of us felt like we were walking on eggshells. To be sure, I know that even in Noah’s worst moments, some special needs parents have it worse. To be fair, I know that when he does have his moments, its still nothing like it was & probably seems worse since he is far more often now, an unperturbed child. Still, he had upwards of a dozen significant moments this weekend involving some combination of screaming, kicking, hitting, charging/chasing, throwing, purposely knocking things over, stomping, etc. By all accounts I think we managed to avoid biting & spitting to avoid a royal behavior flush.

So, I don’t know if I should lay claim to being a modern day prophet or being the proverbial butterfly, whose wings caused a tidal wave effect across the ocean. I wrote last week about overpowering anxiety after hearing about schools being cancelled for a snow day. In the words of the legendary philosopher Alanis Morissette, “Isn’t it ironic? Don’t you think?” I don’t know if our anxiety was the chicken or the egg, or maybe even an innocent bystander in this unconventional story. Regardless, it will almost certainly infuse my life with “evidence-based” anxiety the next time his routine is knocked even slightly off kilter.

I know deep down that this is probably an aberration that will dissipate as the week progresses. It’s just that over the last four years we’ve finally been able to see our sweet & funny boy mostly emerge from this cocoon of anxiety & stress. This, as I wrap myself in it further, terrified at the nagging thought that my son will regress to a place where he was figuratively burning down the house on the regular. This is the epicenter of my anxiety: regression. I can’t lose what we’ve fought so hard for. I can’t..