I'm going through an awful time. I'm very bitter about it.
I'm starting to realize that things are always going to be hard for me. That they may get better than they are now, but they will never be ALL BETTER. I don't mean the perfect all-better of heaven. I mean all-better enough to pass for normal. Family outings. Pleasant conversations.
I will never be able to take Woodjie to a restaurant and have him behave. I will never have a friend who wants to come over and spend time with me. My children will never have a regular playdate.
And worst, worst, worst of all is that no one will ever help us in our difficult situation. I don't even have a family that understands.
I know... it sounds like a lot of woe is me going on and Mrs. C needs to just get over it. But I'm upset.
I'm upset that here I have the diagnosis I need to get services, but I'm too rich to get the services that we all pay for poor people to get. I have insurance that should cover the stuff Woodjie needs, but it DOESN'T because of the magical loopholes of the law. So tough crap for Woodjie. Tough crap. Pay for everyone else's Medicaid, and pay for everyone else's operations and stuff through private insurance, but get NOTHING back for Woodjie.
Nothing. Yes, I believe businesses should be able to conduct themselves as they please, but I also think that if I'm paying for poor folks to get something that is not covered by my insurance, but is prohibitively expensive, that it's rather unfair to give the Medicaid recipient $27,000 for services and Woodjie, the child of real-live taxpayers, should receive NOTHING because his dad was a fool and did that "job, savings, insurance" thing.
I'm telling you, it's a devastating feeling.
I'd probably love to go and enroll my child in a preschool in the hopes that someone, somewhere might at least *help* us teach social skills to Woodjie, or help us with potty training. I know when I'm in over my head. I'm willing to admit it... I need help. I'm trying and trying but this is NOT happening. I guess I had no clue how to potty train anyone. I have these four older children who can wipe their own bottoms and stuff... but now I realize I have NO CLUE how to teach Woodjie. I checked a book out of the library on teaching autistic children this skill and they say brilliant things like "wait until the child is developmentally ready."
Do you think anyone wants to take Woodjie? Um, nope. Even the PUBLIC preschool is talking about setting up daycare after school, but they specifically exclude children that soak up staff time. Children like Woodjie.
Dang, if anyone is going to (supposedly) champion the underdog and the oppressed, it should be the public school. Nope. They want to empower working moms to leave their easy-to-raise children in an institution for the "socialization." Children like mine who really DO need extra help with socialization and really COULD benefit from someone who has special training? Can go rot.
Not that I'm bitter or anything. Well, I'm more than a little bitter. I feel like no matter what I do or where I go, we're discriminated against. Mrs. C really needs to snap out of it and somehow manage to do everything here at home. I need to make my home a more pleasant place physically and emotionally. Lord knows with my bladder, as Woodjie ages I will not be able to even leave this house, so might as well make the best of it. Think I can leave Woodjie outside the public bathroom door alone at 13? Or do you think I can take him in with me? Ha. I'm overwhelmed thinking of things like "how to get groceries" later, even if the funds were unlimited.
And I'm looking at my likely future and I just can't get past it. I'm starting to leave clutter on the sacred dining room table because I reason I will just get it messy tomorrow. And who cares. If you know me, you know that means I am seriously, seriously depressed.
My child is three! I should be enjoying the snuggles instead of crying and screaming.
Ok. I could watch some YouTube videos and do cheap Wal-Mart therapy here at home. If I had a bit more time, I might even get good at it. But I am really having a hard time with the potty thing and some of my web searches haven't yielded what I have expected. Dear world, YOU ARE SICK. Go get some help. Really. I should be able to google stuff about autistic boys pooping in the toilet without all this.
And parents, I appreciate some of the very hard postings you made of your older autistic children. But you might want to disable comments next time. It just burns my soul to see you expose your children and your lives like this, and then read "retard" and things like that in the comment area.
I see my future. I want to change it so, so badly.
Howcome other parents of seriously affected children are much more cheerful? Do they go through a really hard time and then feel better?
Because I'm going through a really hard time.