Sunday, October 14, 2012

Making pizza, walking (some more), and piles of paperwork

We had low-key fun this weekend...like, what do you do to entertain the kids while you're trying to make dinner? How about giving them their own little ball of dough to make into their own pizza? Alleluia Boy and Jubilee Girl loved it:



And The Music Man continues to enjoy his walker...seen here in the drizzle, without AFOs because he popped a screw on one of them from working it so hard. The day after this video was made, he actually popped one of the side wires. You can see why--he works it hard!


What else...if things seem a little quiet on the blogging front, that would be due to the fact that I am home with two very needy little boys right now. The Music Man wants to be constantly engaged, which isn't surprising and is probably a good thing, given his traumatic past and lack of human interaction for the first six years of his life. His language is REALLY exploding; sentences are a more and more frequent phenomenon. We think his English is probably better now than his Russian ever was, if our observations in Ukraine are any indication. Certainly he is talking way more than he ever did there.

And Alleluia Boy is needy because he is three, and because The Music Man soaks up so much attention from me and any other adult around. He shows very clear signs of sadness, anger, and jealousy, which are both natural and also deeply saddening to us as his parents. It also keeps me very busy; I often have both of them hanging from me, or requesting the same thing from me. We have a good friend who has been donating three hours a day to help watch them -- and I don't want to imagine where I would be now if it weren't for her help -- but we won't have "official" personal care attendant services for The Music Man for at least another week or two. Also, TMM will be starting preschool for 2 1/2 hours per week starting the week of Oct. 22, which should help. Until then, dealing with the boys takes up literally all of my time during the day. I can get grocery shopping done (in a harried sort of way), but that is about it.

The other factor is the continuing avalanche of paperwork and phone calls and planning related to getting The Music Man set up with what he needs. It is literally like a part-time job. I have a two-inch binder that is literally bursting with paperwork and forms. Every organization we deal with wants signed releases for every other organization we deal with. The paperwork for enrolling him in school is compounded by his complicated IEP, for which we wrote a six-page plan (and his speech therapist wants us to record a 50-utterance speech sample). There is more paperwork (all of those intake surveys), phone calls, and scheduling involved in his complicated medical care. There has been a ton of paperwork involved in getting him signed up with Medical Assistance (for a sizable monthly fee), without which we'd quickly go broke (his AFOs -- those little plastic foot braces that broke after two months -- cost $3,500 all by themselves)...but that has involved tons of paperwork (including yet another copy of our cursed 2011 income tax return), as well as ongoing reporting. Setting up PCA service has meant researching the various agencies and options, finding and talking to potential PCAs to hire, coordinating the paperwork necessary to hire them, filing more paperwork with the county and the state, meeting with the "qualified professional" who will supervise the service on behalf of the agency as well as the public health nurse and social worker from the county, setting up a schedule, creating a care plan, and reading up on all of the regulations around PCA services. We have to get his passport back to the Ukrainian consulate, and deal with some insurance and medical billing issues. And we have more than half a dozen medical appointments for him (three at Gillette Children's, one at the International Adoption Clinic, one at Gundersen-Lutheran Orthotics, his first-ever dentist appointment, several intake screenings with his therapist) scheduled over the next four weeks -- and that doesn't include his weekly physical therapy appointments.

Did I mention that I have been frantically building an accessible raised walkway from our garage to our house before winter sets in?

Am I whining? I guess I might be, but I'm also just putting this out there as a heads-up for why we've been less available than usual lately.

On the bright side, much of this huge rush of work is a one-time deal -- and ocne we are set up with school, PCA services, and a comprehensive medical care plan, things should settle down to a more reasonable level.

Also, we can be extremely grateful that we have access to such comprehensive services, provided cheerfully by so many competent, helpful people. I'll leave you with a shot of some of them -- the folks who attended The Music Man's IEP meeting:

From left to right around the table: TMM's teacher/case manager; the district's
coordinator of services for disabled students; the speech therapist; the occupational
therapist; our amazing volunteer PCA; the school psychologist; the
physical therapist; the county public health nurse; the county social worker;
another of his soon-to-be PCAs; Starling (mom). And there were people missing!