Respecting Special Choices

Bliss is the only word for today. I sit poolside while W. and J. swim and relax with me, for over 90 min now. We’ve done an impressive lineup of overdue chores, some left by the absent husband who’s annual guys weekend took priority (Ahem), and some just bugging-me items like that stack of clothes on my bedroom chair or changing out the boys drawers from winter to summer wear. Heck it’s fine with me if he never comes home.

Last year this he ‘s gone weekend was really tough, the start of our disrobe battles. This year, W and I are at a good detente on the subject. I still would wish for far wider choices in attire and the upcoming family wedding still worries me, and makes me want to build some kind of program in advance so he’s not wearing his PJ-style baggies with his shirt and tie. But for today, the sun is shining, he and J are singing a made-up silly song as the walk round and round the edges of the pool from shallow to deep end. Everyone’s happy, even me. Imagine that.

J’s scratch-til-he bleeds behavior has been low this week and I know this week’s daily swimming has helped calm him. Still haven’t totally figured that out and although I spent no small amount of time liaising with behaviorist, PCP, autism physicians and doing their minor test work ups in preparation for (yuck, yuck, I hate the very word) meds trials – J too is at a good place.

What made the difference? Help, most likely. My lovely daughter was here for those priceless little boosts like giving the boys their evening snack Friday when I fell asleep @8:30 pm – and supervising dressing choices for church so I could get dressed myself.

Our fabulous skills trainer was here for 4 hrs Saturday helping J. paint the wood fence like he used to do 2 years ago when we had a grant for weekly help – and to my thrill J., while still needing a few breaks, did well and enjoyed the work. Call it a dream or a delusion, but my hope that some day I can start a Special Painters business where I employ him and maybe others like him lives on, at least for today.

But mostly I changed. My life isn’t perfect and I’ll never stop waking each day feeling that if I just did one more thing, the boys would be better off than they are. But I have new-found respect for each boy’s limits and preferences. There are worst things in the world than a young man sans underpants. And while the self-injurious scratching has to be stopped because no degree of a child hurting themselves is acceptable, I’m watching J’s good days and working to understand their drivers. Fortunately it didn’t take too much bitching to get school on board and thank heaven for the new state social worker network who truly has helped. I also have new eyes for little things he does to calm himself, or not – and ideas for how to help him get to the next better calming moment.

So bliss, stick around please, for at least another few hours. Long enough for the Supermoon to shine on us all as we walk ever forward toward the light of some unknown but ever present goodness in the boys – the light they are beaming back at the world. And me. Yes!