Spill Over Into Wednesday: I regrouped, or so I thought, from yesterday’s weariness only to find this morning that my coffee filter was gone. Guess how? Yep, when I emptied the filter onto the Fed Ex envelope that I mindlessly threw into the garbage, the filter went in too. Pretty concrete way to measure exhaustion. Our rather potent garbage mix (thanks to a 21 pound cat’s litter) is kept outside in a wooden bin and today is garbage pick-up day so in bathrobe and socks, I flew out of the house and retrieved said filter in the nick of time. Oh boy!
Katy Perry and The Medicaid Mix-Up: I am beginning to notice that a special needs adult’s life isn’t that different from a special needs child’s life. Everything is complicated. More complicated than “normal” you ask? I think so. Am I surprised? Not exactly, but living it is different then contemplating it. The planning and prevention that is going into taking our daughter to meet up with her escorts and attend the Madison Square Garden concert this evening has probably yielded 10 emails and 3 phone calls.
The Medicaid mix-up, which at this juncture they are blaming on our daughter’s special needs trust (SNT — another jolly acronym supplied this time by our attorney), is ongoing and encompasses the usual disconnect between agencies and professionals, with the client/consumer at the mercy of them all. That mix up probably generated 12 emails and two phone calls alone yesterday with our attorney losing his temper in one of those correspondences, fortunately only to me. In fact he was pretty funny using the analogy of the firefighter/arsonist lighting a fire so he/she can look heroic by putting it out. Strong condemnation but I get how frustrated he must feel, when he does the work, and well, and a less knowledgeable bureaucrat challenges it. Hopefully redemption is in store for both of us when Hartford stamps all with approval.
Off To NYC: In a couple of hours I head out with the star magnet, and fingers crossed, she bonds well both with Katy Perry and the MSG scene. Toes crossed on this one too.
2:55 P.M. Received an email from the vocational coordinator just as I am about to depart to pick up daughter for NYC. The ROAR folks cancelled her volunteer work this Friday as the person assigned to train her has left. Now let me count the delays: ROAR renovation, not personal. Ringworm, not personal. Power outage, not personal. Staff departure, not personal. ABD vocational life skills staff resigns after two weeks, not personal. ABD takes two months to find suitable replacement, not personal. Ridgefield Crossings power outage, not personal. Ridgefield Crossings senior resident out at dentist appointment, not personal. So why does it feel so personal? Frustrating and disappointing. At least for mom. Have to check in with the gal.
©Jill Edelman, M.S.W., L.C.S.W. 2011