Today Max was picked up at school for the first time by a Caregiver Support Person (Caregiver Support Person). The IDEA was, they would go, at our expense, to see a movie while Mom (the caregiver) does something for Mom, other than work or go to school.
This is something that we are - horrors - ENTITLED to by virtue of being on 3 waiting lists for Medicaid waivers. You do not want me to go there. It's entirely too complicated.
For now, we can say this is a step on the way to Max not ending up eventually in Carl's situation. Max is 21 years old, but functions more like a 3rd or 4th grader.
Next year he will no longer be eligible for free public education. Presumably there will be some job in place by then, but he will not be supporting himself for a long time, if ever. We are involved parents, but there is a limit to what we can do for Max. He will need other people involved in his life.
People who are not family or school people.
Hence the theoretical movie outing.
So far, Caregiver Support is a bit of a hassle and a lot of worry for me. It would be a lot simpler to let Max veg out on the couch with the PBS afternoon kids' shows. But he needs the exposure to other people and experiences, which we would not be able to afford, and i need to learn how to work with the system so that eventually, when he needs more, it will be in place.
i would like to also guide others, but i feel shaky enough about our situation. Heck, i feel shaky enough about the whole ENTITLEMENT notion in the first place. But i know what my kid needs, and this is the best i can see to get it for him.
Actually they didn't go to a movie. Max ran onto the bus and had to be removed, then he called me for reassurance. i told him he could trust CGSP and he should go see the movie & have a good time.
In a few minutes, CGSP called me from outside the theatre. Max was insisting he wanted to come home and not see the movie.
i told CGSP that if he doesn't want to see the movie, that's fine. (Remember, it's not about the movie.) But i want him to do SOMETHING before he comes home. i talked to Max again. Where would you like to go for a snack? Hardee's? Steak n Shake? McDonald's? McDonald's, he says. Ok, i say, then you ask CGSP and she'll take you there, then home.
So i talk to CGSP again, and ask if she knows where a nearby McD's is. She doesn't; i tell her.
And they're off again.
Gosh, it would be so SIMPLE to have let him come home on the bus and veg.