Susan's Blog

Tuesday, May 19, 2015

Threats from within and without

With autism, there are threats that come from without, and threats that come from within. Number one external threat: cutting services. School systems. Adult services. Every budget season there are challenges we face on the government level, in the form of proposed cuts to services. This spring is no different; first we had to rally over the Governor’s proposed “9c” cut to Medicaid/Mass Health services in the form of Adult Family Care respite time for the caregivers. What in the world could they have saved financially speaking that would be worth denying 14 days vacation time for caregivers — people who work with those with very challenging disabilities and are responsible for their clients 24/7?

Soon after this proposal came the heinous Senate budget which cut, among other valuable services, Adult Day Program money for possibly 1,000 people who recently turned 22 (last hired, first fired I suppose). Other services to be cut: toileting and feeding assistance. So… let’s see. These people with intellectual disabilities with feeding and toileting issues will now have to — fend for themselves: Let them eat cake, or, uh, let them… hmm. Yeah. That’s what I thought.

Then there are threats from within. These are excruciating because they are directly about our child. Number one for me: what is Nat feeling? Is he okay? Latest thing: he is very quiet, slow, and still, like he is moving through water. He just stands there waiting for — what? And of course, no smiling in sight. On the other end, when he is not like this, he will suddenly switch to uncontrollable seemingly context-free laughter. Spitting laughter. So then we have to get him calm and more, well, serious, which then leads to — the still, quiet, somber Nat.

Where is the middle ground? Not just for my own exhausted heart. But for Nat. What is it like for him to exist this way, battered between so much up and down? How can I help him?

And by the way, when I ask that, it is rhetorical. I do not want any advice in the comments. Frankly, I hate other people’s advice. It so rarely fits our situation. It so often is something I’ve already tried. I honestly don’t believe anyone has the answers, and that is the way it has always been for Nat and us. We’re on our own and you are our supports. I only find it inside the autism community, but only from those with open arms and open minds.



My favourite is when caregivers/teachers etc ask “why is he”… and I get annoyed enough to give them a list of possibilities and say “pick one”… the look I get… One day maybe I’ll read minds. I can guess his moods to a point to tell if he is well or not… kinda… beyond that as long as he seems content, I’m going with it.

The feds brought in the RDSP about 8yrs ago or so. A couple of years ago they changed it so that if the child was under 18 it was the trustees not the child’s. The provinces are not allowed to clawback their funding because of it, just like the Henson Trust. Unfortunately, many do and of course it’s in the courts. We need that money to protect them from the lack of services and to be able to afford those when they become adults. The waitlists are horrible at best for everything. A part of me is trying to ignore the fact that 17 (when you start the paperwork) is getting closer every day.

— added by farmwifetwo on Thursday, May 21, 2015 at 7:59 am

Susan, your last paragraph in particular so hit home. Enough with the suggestions unless I’m asking! Invariably I’ve tried whatever some well-meaning person suggests; I’m at a point where I just resent having to grin through it and move the conversation forward. I feel for your exhausted heart, and am with you there too.

— added by kim mccafferty on Thursday, May 28, 2015 at 1:23 pm

Thank you, Kim!

— added by Susan Senator on Thursday, May 28, 2015 at 2:34 pm

Susan, Thank you for your courage in saying the very thing so many of us, particularly with kiddos on the severe end of the spectrum, feel but may not express. I know it helps me to know I am not the only mom asking these questions. I hope you and Nat find some peace soon!

— added by Nicole Staeheli on Friday, May 29, 2015 at 12:09 pm