I planned on writing this yesterday, but the experience was just a bit too fresh in my mind. The wound was still open.
I have an adult handicapped child. He graduated high school in 2009. I had intended to let him have a year off to do nothing before trying to get him into a sheltered workshop environment. He is Down Syndrome and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS), it's on the autism spectrum. His last year in high school, they tried to tell me that he was cured of his autism, and it was a good thing that he was MR or he wouldn't be receiving services anymore. I felt like saying, whoo, call Genus, because no one has ever been cured of autism. You can be "recovered," meaning it only affects you occasionally, but there is no "cure." But I left it alone.
Then, I was diagnosed with cancer, and getting him his job or even some sort of day care situation went to the back burner while I tried to keep myself alive. It's now been a total of 3 years. My sister-in-law has a friend with a special needs son who goes to a day care (for lack of a better word). The mom doesn't work, it's strictly to let him have friends. My son has been mentioning every now and then over the past year that he misses his school friends. He has no one but his family, a few non-disabled youth at church and one friend of his brother's that comes over. My younger son's friend loves him to death, like a little brother, even though he's 13 and my older son is 22. He treats him great.
But, moving along. I toured the facility with my son and my brother and sister-in law. My son absolutely loved the place. They have computers, TVs to watch movies or play on the Wii, they have a quiet room with a couch that a door can be shut for when he gets overloaded. He was introduced to the other clients, and one of the girls giggled. I was asked what other services he gets, and I have to admit, I'm a little ignorant of the whole process. I said SSI and Medicaid. They asked if he had a services coordinator, and I didn't even know what one was. They were SHOCKED that he gets no other services. He's my son, he lives with me, I take care of him. Up to now, I hadn't really looked at him as growing up and wanting to be out. But what normal 22 year old (besides the liberals living in their parents basements and blogging away their hate speech) wants to stay with mom all their lives? He WANTS to do something, to be productive. He asked me to home school him again, because he can feel that he's lost ground.
So I had my husband drive me to Dallas to get the process started. I was told it could take a couple weeks. I don't drive to Dallas because the stress of the traffic is too much. It's funny, I can concentrate on a complicated knitting pattern with no problem, but concentrating on a driving route or other people on the road causes problems with my epilepsy - oh, excuse me, it's called a seizure disorder. I had to round up all his paperwork, school records that I had, what he gets for SSI, any evaluation papers, photo ID (hmm, but you don't need one to vote?). I think the whole idea behind the shield of confidentiality that they hide behind is so they don't have to report how many illegal aliens get services. I gathered everything up and had it all in a folder.
Because his last IQ test was 7 years old, they wanted to do a mini one. It came really close to what the other one was. But that took an hour. Then he interviewed me, which probably took another hour. His conclusion was that he qualified under PDD-NOS, MR, and Down Syndrome. He said if drug into court, and made to give a diagnosis under oath, he'd say that he had Childhood Degenerative Disorder, which falls under PDD. He missed one being labeled autistic. I think it's because of the Down Syndrome. He's a bit more social than most autistic people.
The next step was to get with the coordinator to find out what services he qualified for. First we had to wait until she was available. All of us went in to the office, and I really wish, in a way, it had only been me. I guess it was good for my son to hear it from her, than me, but they put him on a waiting list. A Waiting List. I asked how long it would take, as I'd been told a couple weeks, and she just said no. I asked a month? she just stared at me. I said, 6 months, and got no answer, so I asked a year? Still no answer. She just would say when we get funding. WHEN WE GET FUNDING. Really? All I wanted was a day care. But it costs $30 a day, and I can't afford it. That's $150 a week, $600 a month. If I used up all of my non-accounted for money, I could afford half of that. But I'd have nothing for emergencies (like the flat tire my husband got yesterday).
I left the office so disappointed. I could only think of the lady I know who has 4 kids by different men, is still single, never having been married, gets rent subsidies, SSI because she got a doctor to say her back hurt too much to do any work, and yet all 4 of her kids have Blackberries and she dresses in designer shoes and eats out a LOT. I know because she's a "friend" on Face Book and every time she goes somewhere she checks in.
I know the hesitation for telling me when these services would be "funded," was because they were probably Obama supporters. The hidden insinuation was we don't know who is getting elected, so we don't know if funding will be cut or not. Hopefully that only means until after the election. I know Romney won't cut funding. He may clean up the rolls a bit. I want to know why I see Mexicans who can't even speak English using the EBT card for food stamps, when my son can't get funding to be able to live a normal life? He qualifies for the center, respite (where they pay someone, even someone you know, to watch your child so you can have some time alone, or if you have an appointment where you can't take him), speech therapy, and a program where they pay the parent to keep them at home instead of putting them in a group home. That last program has a 9 YEAR waiting list. 9 YEARS! I may not be here in 9 years.
My son took it better than I did. I came home and cried. I hid in my room so he wouldn't know, but I think he knew anyway. That is really an affirmation that he has CDD instead of autism, the empathy of knowing how I felt. I came back in to the living room, and told him I was really sorry that we couldn't get him in to the center we toured for maybe a whole year. He waved me off and said, "I retired from it." That means he doesn't even want it anymore. He says it that way when he wants to give up something for a while. "I retired from vegetables." My younger son went to get him for dinner and he thought he'd been crying.
It breaks my heart that I can't do this for him. It pi$$es me off that it's more than likely because of the abuse of the system. I'll have to wait, because I can't afford it. And unlike the people on Welfare, I have nothing to give up so I CAN afford it.
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