Monday, March 4, 2013
Mama on a Mission: Caring for Adult Children with Autism
Here in Georgia, autism is in the news. Thanks to Ava's Law, kids with autism may just be covered by insurance. This is wonderful news because our children need so much care. ABA, speech therapy, occupational therapy, to name a few and none of this comes cheap. In fact, so many get dropped through the cracks of the system as it is right now because parents can't afford it and schools do little enough to help. Argue with me if you must but that's what I've seen of a few different school districts in a few different states including this one.
As the mother of an adult with autism, though, I tend to wonder just how much Ava's Law would benefit my son. Will he be able to access speech and behavioral therapy? Would he be able to see a DAN! doctor? I have a lot to learn about this particular piece of legislature but no matter what I will support it fully. It is a struggle and a half to reach our kids sometimes, and bring them to the point of saying "mama" or following directions, and continuing on.
Looking further into the future, I'm dealing with the question of what happens to J if something happens to The Hubby and me, or if he just cannot live with us anymore because he is a danger to himself or us? It's not something I like to think about, but it's a possibility that I cannot ignore. The following is something I wrote on my facebook page yesterday:(This is straight from my page, no modifications, just what I wrote as I felt it)
Warning: I'm on a rant. Don't have to agree with anything I say, don't have to read it. I just want to get all this written down and out in black and white . Do you know how hard it is to raise a special needs child? I mean, really know. Doctor's appointments, dealing with school IEPs and battling with teachers and aides who don't want to do their job, trying to figure out how to potty train a child who doesn't always understand. Then paying for pullups on your own because it's not covered elsewhere. I get it . He's mine. I love him. I adore him. He's my responsibilities and if I had my way I'd be able to provide for him without any help. Not in this country of high taxes. Won't. Ever. Happen. Then the child grows to be an adult and thoughts come up. What happens when I die? Who will take care of him then? Can I manage to keep him in my home even until I die? And of course while we're struggling with decisions like that, somebody or other pipes up and says "someday he will *have* to go to a home. Well meaning. I get it. But I have to say, Maybe. Maybe not. Very easy for someone to say when they don't have a special needs child to raise and care for and love.
So you start looking online. Where to start? Google. Uh huh. A list a mile and a half long that is 85% senior care, if not more than that. A very small handful of places that specifically state home for persons with autism. All NOWHERE NEAR HERE!!!!! Other facilities are listed just as a name and and address and phone number. No clue whether they are foster, residential, senior care, or a pizza joint. Not happening.
Step two: Google again and find an autism website that lists residential care. Click on that. Click again on the state. Still a bunch of pure, unadulterated bull, along with some businesses that may or may not be residential. Case in point? The only help in my area that I keep getting sent to, Hereby known as Bluebeard's Bluff Behavioral Business (Obviously fake but some readers would know it in a heartbeat and may try to defend them. Don't do it. I'm not in the mood.) Bluebeard's has *NOTHING* to do with residential care. They give out halfway good advice, listen with a third of an ear, and hand out scripts for meds that would stun a moose and keep him drooling for days. So. Not. Happening. There is one place that could help but with someone's work schedule, NOT possible. Respite? HA!!! Not in this area.
In this state your loved one has to be in a place halfway across the state from you, be placed in a mental institution (NOT acceptable), or you keep them with you until you die or they become too unmanageable to keep at home and we're back to square one. Having a special needs child is not for the weak of heart or the poor. But poor I am. As I said before, He's mine. I want to do what's best for him. There has to be something better than what this state is offering, cuz moving out of state is not an option unless it's the one to the right, and I'd so love that. Still looking for a house, especially in that area. Maybe, just maybe, they have better options. Until then though, I'm stuck in this area.
Am I ready to find a residential place for him? Nope. I think I am at times, but folks, I'm his mother. I trust no one , especially when it comes to strangers, with his care. I also know his behavior, and I've seen an aunt moved from home to home to home till no one can tell us where she is -- because of her behaviour. I will not have that happen to my son. I've seen headlines about parents and what they've done and went right along with everyone else with the how dare they's and the how could they's. I know how dare they and how could they. It's called desperation. This is NOT some post that someone will point to and say she needs him taken away blah blah blah. Just ranting to hear myself rant, folks. He's mine and trust me, I'd be the first to do something if I thought either of us was in danger. I just need some direction. And GA needs to get with the program and get its collective head out of the sand because autism is not going away.
As you can see I had a lot to say.Mama got frustrated to say the least! But I have plans to contact my representatives about this soon, and I also have a dream. I would love to see residential/day facilities in each county or at least in tri-county areas that will benefit those with autism. I would love to see it privately funded if possible. If I ever become successful enough in my writing to the point that i could do it for at least one area, I will. If God wills it, I would love to see this help come about. I'm still in the thinking stages of what is needed, but I'd love your input as well, if you are the parent/caregiver of a child or adult child with autism.