Over the past few months I’ve started to truly realize how much I took for granted during the (almost) 15 years Jonah was at Anderson. I’m not surprised – I mean, I saw it coming, back when they told me he’d be moving from his 100-acre gated campus to a house right on the road in a random neighborhood. Gone are the playgrounds, the unscalable fencing around the property, the inground pool, the recreation center, the school, the dozens of eyes on him on any given day. But there was no way for me to know what this new reality was really going to be like.
Since the last time I wrote I’ve been faced with many battles, and I’ve been trying to decide which to fight – or, perhaps more accurately, which fires to put out – as they come along. Right after I typed the last entry, the biggest fire yet ignited. Jonah ran away again despite the one-on-one staff being right there with him. They were sitting in the backyard of his house at a folding table, and though I don’t understand exactly why, he bolted – through the space between some trees and the house and directly into the road. The staff person who was with him was wearing sliders, and caught up with him as Jonah ran straight into traffic and across the street. Since he has no concept of safety, Jonah could have easily been hit by a car.
When I found out what happened, my heart damn near stopped. And needless to say, I tried my damndest to put that fire out. I requested fencing, in writing, again to both the powers that be at OPWDD – at the very least along the side of the house, and preferrably along the back and sides of the house as well. I contacted the Justice Center for the Protection of People with Special Needs again. And I requested staff be trained on appropriate supervision protocol and proper footwear, particularly when working one-on-one with an individual who has a history of elopement. I got them to agree to put the fencing in, but it’s not in yet.
That’s the one thing I didn’t know I’d have to contend with once Boo moved — the snail’s pace with which OPWDD gets things done. Way farther down on my list of priorities are things like putting an adult swing in the backyard for the residents (which I’ve been asking for since February). Taking Jonah to get his swimming assessment and then to a pool or the Y (which I’ve also been asking for since February). Keeping me abreast of developments in the house, like the shower in one bathroom being busted, or the plexiglass panel screwed over the windows (which is a fire hazard) being converted to plexiglass panes. Letting me know when OPWDD has dances or other activities, which I love to attend (and missed last night because I wasn’t informed it was even happening). Taking Jonah and the others to Bring on the Spectrum – this awesome gym in Colonie that has adaptive swings and a sensory room.
Briana came to visit last month and so she and I took Boo ourselves. He LOVED it there!
I’m trying to focus on the good things about Boo’s new living situation – like how much closer he is to me, and how good the direct care workers are, in general, and specifically a few favorite people who I can tell genuinely care about him and the other residents. They have a tough job, and they do it with a determined, almost cheerful stoicism I can’t muster on my best day.
I don’t want to write here just to report problems or throw anyone under the bus, and I’ve been frustrated this last few months, so I haven’t been posting anything at all. I also don’t intend to sugarcoat everything, though. The people who work at the house are underpaid and often work double or extra shifts. They’re expected to do things even the most seasoned nurses’ aide would balk at…clean up ungodly messes while incurring injury and moving on to preparing meals or driving to med appointments at early AM hours. Every individual in that house has “behaviors,” a euphemism if ever there was one. These behaviors can range from throwing water at staff, smearing poop, punching/kicking holes in the walls, pulling hair, scratching, biting, hitting, destroying property — staff’s eyeglasses, or their cell phone. A window. A kitchen chair. The toilet seat. God knows what else I don’t know about. What else I don’t want to know about, honestly.
I just want him to be safe, and healthy, and happy. And I won’t stop doing whatever it takes to make it so. I may not post as often but I’ll always come back with updates and news.
Mama loves you, Boo!
The Never Normal 