Yeah. No amount of positive thought is going to change the fact that my children have autism. I do understand that having a positive attitude can help a person get through the crap, but it is crap to say that a person brings crap on themselves by not having a positive attitude.
Mikey is low functioning, and as he goes through adolescence, has increasing frustration, and his current outlet is to bite holes in his shirt. It has gone from biting holes to completely ripping the shirt in half. Now, how am I supposed to put a positive spin on this? Hmmm, perhaps Mikey has a future in stripping - I know I'd pay good money to see a grown man rip his shirt off with his teeth. :-) (trying to be positive, here...) All kidding aside, Mikey is not a grown man - he is a struggling teen with autism, without the verbal skills to express himself. He needs help, and so do I; something a bit more concrete than, "You need a better outlook."
As I found out, asking the Regional Center for more help is pointless. They called Child Protective Services on me. I don't know this for a fact, as CPS can't tell you who reported you, but one of the incidents with Mikey happened the day before Regional Center came out to 'see how they could help', and were the only ones who knew about the other incidents. I don't know what they were trying to accomplish - to make a very long story very short, the lady from CPS was very nice; after the investigation was over, she said that she had no idea why she was called, disabled kids often had these issues & you can't predict them, and I showed that every time there was some kind of incident, I took steps to deal with it, and they were closing the case.
I am assuming that Regional Center was trying to shift the responsibility to someone else, because when they were here, Regional stated that maybe a behavioral respite group would be a good idea. I agreed, the lady was supposed to look into it, and I never heard another thing about it, nor has the behavioral group who provides Mikey with 8 hours of therapy per week. Was Regional trying to slip out of their responsibility? I don't know. Here is the Regional Center of Orange County's Mission Statement:
Regional Center of Orange County, within the spirit and mandate of the Lanterman Act, shall assist persons with developmental disabilities, and their families, in securing and coordinating those services and supports which maximize opportunities and choices for living, working, learning and recreating in the community and which result in consumer satisfaction and quality services which stress human dignity and openness to innovation.
So, calling CPS, making one of my boys subject to reliving an experience he's embarrassed about & has already dealt with years ago, making me feel like an incompetent mom, NOT "securing and coordinating those services and supports which maximize opportunities and choices for living, working, learning and recreating in the community and which result in consumer satisfaction and quality services which stress human dignity" but instead shifting the responsibility elsewhere... yeah.
The only positive thing that has happened regarding all of this is that I have been vindicated by CPS & RCOC can't shift the responsibility again. When I'm more calm about the whole experience (when will that be?) I have a mind to call the lady from RCOC & tell her that the next people I tell my story to will be the newspapers - I wonder if we'll get our services then?
It's crappy. The whole bloody system is crappy. I stopped having RCOC come to the kids IEP's because they & the school district would spend most of the time fighting over whose responsibility it was to provide services, and no one would do anything. I'm tired of having to fight tooth & nail for services my kids are entitled to from both the school district and RCOC by LAW, but don't get unless you take the agencies to due process/fair hearing. It's WRONG. I understand everyone's broke, the state is broke, the agencies are broke.... but the administrators of those agencies are still pulling in their 6 figure incomes (not being specific regarding certain people here, but all government employees salaries are available to the public by request).
I'm tired of excuses. From the schools, from the agencies... look, I'm a single mom, and I have 2 children with autism. I take full responsibility for choosing a crappy husband who then left us 2 months after the boys were diagnosed. That bad decision of mine does not negate the responsibility of these agencies set up to help disabled children. I'm sorry I'm not 2 people. I'm one mom, who has given up any shred of a normal life in hopes that her kids may have one someday, and it sucks when I'm beaten down at every step by the agencies who were designed to help just those kinds of kids. And no amount of positive thinking is going to change a damn thing.
June 7, 2011
Update: It wasn't RCOC. My gods, it was ACES. The behavioral group who has worked with us for years... talk about a feeling of betrayal. Been dealing with these feelings for a while now - since finding out it was ACES who reported us, I went first from feeling betrayed, to wondering if this group who has worked with us for years thinks I'm a crappy enough mom to report me, then maybe I AM a crappy mom, to wondering why a group who has worked with us for so many years still doesn't have a clue as to Mikey's proprioceptive skills & should know he was never in any danger because he can't squeeze a bottle to spray anything out in the first place.
So the group I've reported every behavioral mishap to, in hopes they can help fix the behaviors that have happened, was the one who reported the behaviors. How the hell is that supposed to help??? It's caused more issues and hasn't helped a damn thing. First of all, how am I ever supposed to trust any group out there to 'help' us, if I'm afraid to tell them what's actually going on? And so I find myself more alone than ever.
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