I got a call from our service coordinator Friday morning. She informed me that she "took my concerns to the management team and they've decided to make an exception for us" and cover individual, in-home ST for Finn. I got the distinct impression that she wanted me to express gratitude at this great favor she's done for us (roll eyes). Or maybe I was just imagining it. I can only imagine what she presented to the management team about me and my phone conversation with her when she initially told me that Regional Center wouldn't cover ST for Finn! Well, the squeaky wheel gets the grease, right?
This is good news, and I am grateful. But also weary and resentful. I was under the impression that Regional Center, our service coordinator, and we were supposed to comprise a team that would work together in the best interests of Finn. Instead, it's become a contentious relationship - us against them. They're supposed to provide certain services to benefit Finn (which we pay for with our tax dollars), and yet we have to make a stink to get him the most basic services which he is legally entitled to based on his diagnosis. I understand that the problems in the system are driven by money - or rather, lack of money. And I understand that our service coordinator is probably in a thankless job, likely underpaid and overburdened with cases and clients. I'm sure it must be very stressful to be in the position of gatekeeper of the services that families in need are clamoring for.
But where does this leave us, the families? Where does this leave Finn? It leaves me, I feel, in the position of having to make a stink to get the services that Finn needs (or at least I'm told he needs . . .)
Ack. And all that said, I still have very mixed feelings about therapy. Is it helping him? Is any progression he makes thanks to the therapy he receives, or is it all within him to begin with, skills and accomplishments waiting to emerge in their own time, regardless of the presence or absence of therapy? Is therapy a valuable expenditure of our time, or would that time be better spent just being and allowing Finn to be? I agonize over these questions constantly.
Let me share another couple of snippets from that book, The Short Bus, from the chapter the author wrote profiling his time spent with a young woman named Katie who has Down syndrome:
The first year of Katie's life, Candee [Katie's mother] tried her best to fix her daughter. She counted Katie's steps. She compared Katie's development to "normal" kids. She bought training devices shaped like toys. She was instructed to buy a book called How to Train Your Down Syndrome Child.
Every interaction was instructional. Every moment, an opportunity for teaching. And in Candee's mind, "it accomplished not a goddamn thing. It is the myth that drives the pyramid scheme of the service industry. I realized," Candee said, "that I had not been Katie's mother. i had been her trainer, and I had been sucked in."
Candee asked Katie what she could do to help her, to support her dreams. Katie responded, "You can teach me to dance." Candee was at a loss at first. She didn't get it. "Teach you to dance? What good does that do?" Katie smiled and said, "If you teach me to dance, then we can dance together."
Uh huh. Live. Just live.