Sorry I haven’t written in a few weeks. Had you stopped by you would have found me sitting her wallowing in my own self-pity. No, nothing is wrong with me. It’s just sometimes the reality of Matthew’s limits come to the surface and I sit around feeling sorry for myself.
For those who haven’t met Matthew I’ll share just some of his challenges. He is non-verbal which doesn’t mean he is quiet, instead it means he talks a bit, most with prompting, and makes sounds (some which are obvious—like right now as he sees the Lone Ranger come into view and he cackles with excitement). He can say NO to most anything and left to his druthers would probably never go anywhere because this is his stock answer. Matthew also needs help with everyday things; some he can do independently though not to a ‘mom approved’ standard, like brushing his teeth. Even though he does not talk he wants to be part of all conversations using tools like his TV guide to pull you into saying something for him.
That said we aren’t complaining. We live a good life. He and I are together each day with our schedule of events and activities. Matthew’s knows what time it is and plans for his lunch and later waits outside for Dad to show up. Our routine is not all that exciting but we manage to keep the house in order, care for the pets, visit friends, shop, etc. Contrary to popular opinion, and Matthew’s personal preference, we don’t spend all day sitting around watching TV eating bonbons.
The Department of Developmental Disabilities offers assistance for disabled adults. Matthew qualifies for specific programs because he was a disabled child who became an adult; adults who become disabled are covered differently.
We parents, as guardians, can choose to live without government aid. My own personal preference would be to keep the government completely out of our lives but, in our case, especially after my cancer and mortality reality check, we accepted some of their programs including health insurance and some respite care. Because we receive these services the government wants to make sure we are keeping Matthew’s best interests at heart. So they come by to check on him.
And that’s where we were last week. It’s a quarterly meeting and to me seems silly but I know that sometimes those who are disabled are taken advantage of and not well cared for. It’s sad to think about but I know it happens. Anyway, the case manager assigned to Matthew has to visually lay eyes on him, speak with him and generally assess that Matthew is in good condition.
I know what you’re thinking. You’re thinking it’s all good and well that someone, especially an outside source, regularly checks on the well being of the weakest among us, those who are most vulnerable. And you would be right.
Something seems to happen when the government gets its finger in the pie. Sometimes the workers, well-meaning though they may be, start to think they know best. Maybe you’ve run into this. When Matthew was in school we would meet with the ‘staff’ who more often than not appeared to be on a power play as they all sat on one side of the table opposite me, the mom, telling me what was best for my child and too often making light of or in some cases even laughing at my suggestions.
Grrrr…what a terrible flashback, I felt my claws coming out just remembering…
So back to today. These social workers who come to visit are well meaning but this year I have been getting the feeling again that they would go back to their little government cubicle and write up a plan for Matthew that their superiors would approve of.
The agent this week did just that. Each visit he asks whether Matthew should be in a day program or a group home to which I respond that Matthew is quite content right where he is. But this time he wanted a specific list of what activities Matthew participated in each day. What does he do with his time? And how could he, the agent, justify to his superiors that Matthew could stay home rather than going to a day work program?
What? Wait a second, what kind of communistic questions are these? Since when did this person, who has met Matthew only twice, know what is best over the desire of his parents of his daily schedule?
And therein lies the rub. I grew frustrated with the agent and asked if I needed to even meet with him. But of course, I knew the answer. If I want Matthew to remain eligible for services I must accept their intrusion into our lives.
It’s a conundrum.