feeling isolated and frustrated

There are all sorts of things in place to help disabled kids/adults, but nothing that is a fit for Alex's extreme needs.

There is a special needs program at the YMCA where you can either pay or volunteer your time in exchange for leaving your child and getting some respite while they play, do arts/crafts, etc. Can't do this with Alex because the kids need to be able to work well in a group...there's no one on one attention.

There's a program through Easter Seals in the summer where you can pay to send your special needs child to their summer camp. They do fun stuff, including swimming and meeting community members (fire fighters, police, seeing eye dogs, etc). Can't do this with Alex because there is a 1:3 ratio between caregiver and children. No 1:1 care.

There's another program through Easter Seals in during the school year that provides respite on Saturdays. Again, no 1:1 available.

There's a program called CIIS (Children's Intensive In-Home Services, which I've talked about on here) which is supposed to be for the most extreme disabled kids (either medically fragile, or behaviorally challenging). Can't do this with Alex because he apparently isn't considered challenging enough.

There is a program called Oregon Health Plan/Medicaid which provides secondary insurance to people with disabilities so there is no out of pocket expenses for medical care, including prescriptions and diapers. Can't benefit from this because we are over the income limit, and Oregon has no deeming waivers in place like some other states, which would only take in to account Alex's income rather than the whole family's.

It's just really frustrating when you are denied at every turn.

Alex cried all day yesterday (okay, not literally...there were a few moments of silence and even a few smiles, but they were few and far between). His face is totally destroyed by him hitting, slapping and rubbing it so hard. He's been double wrapped and he can still hit his face. He brings me blankets and shirts and pants, trying to get me to wrap him more, even though he's sweating like crazy between all the wraps he already has on and his helmet. And today is shaping up to be the same.

We're trying to appeal his CIIS denial, however it's looking like that might involve getting a lawyer. Can't afford a lawyer, even if I could find one that worked with special needs cases. We hired one from Salem to attend one of Alex's IEP meetings, and it was wonderful....but way too expensive for us to do again.

Alex is banging his head on things, so I'd better go see what I can do.