I'm shocked. Seriously shocked. They claim that with the group of kids currently there they don't feel they can keep Oksana safe because of her other disabilities. IT'S A PSYCH HOSPITAL! When will they ever have just the right kids that they feel she can be safe with?! It's crazy.
After I ugly cried we had a meeting with our team (Crider Center, Regional Center, and FACT) to decide what to do next. Crider is going to start coming in 3-5 days a week to take Oksana and work with her for about an hour. They are mostly doing this outside of our home since that is what I requested so the rest of us could relax. We are also having someone come to our home next week to meet us who is some well known autism expert. She has created a program called Rage to Reason which involves 6-8 weeks of intensive in home behavior therapy. She got a grant to do the program with 7 families and it looks like we might be one of them.
I also contacted NAMI. I'm going to call their advocate tomorrow and ask her for some guidance as I contacting our Senators about our story and what the state hospital, as well as every other place on earth, has done to us. This might not change anything for Oksana but maybe, just maybe, another family won't have to go through this. My friend who works at NAMI said they have tried to convince so many parents in similar situations to take action like this and they always say "What good is that going to do my kid?" Well, you know what? It's not going to do anyone any good if we do nothing. I don't want to do this. I am exhausted. I barely have it in me to make it through each day much less fight the system, but I don't have a choice. This can't keep happening to us or to anyone else.
Our Crider worker is coming at 10am tomorrow to take her for an hour. We weren't sure we were going to do tomorrow until she found out that Oksana told me she was going to slap my head off. I guess she figured I could use an hour off!
6 comments:
Oh I am so sorry. I live in St. Louis and my daughter has FAS but
I would certainly come over and give you a hour out if you need.
prnps@aol.com
Pat
I don't comment very much (but read avidly). I just wanted to say... I don't know.. I don't have the right words. I feel so bad for you all. There NEEDS to be more support put into place! I'm so beyond sorry your family is going through this. I can't even begin to imagine how utterly exhausted you must be. Sending you loving hugs and prayers from across the seas. I feel like crying reading your last comment... just wow. No mother ought to hear those words spoken to her. I'm so sorry xx
I wish I had something helpful to say. I do not know what would help. But I do know that you are admired by many for your fortitude and willingness to find help for that precious helpless child. I deal with a somewhat similar situation with one IA daughter who has autism, and I know how frustrating it is that there are not adequate supports or long-term treatment facilities available. I pray daily for your family. I ask God to give you the energy and strength to continue. And for your other family members to be able to shake off any long-term negative effects of living with a time bomb. I know He is able to do that. And I won't stop asking Him on your behalf. Take care of yourself today.
Erin,
could you find longterm respite care for her?
Again, praying for your family.
Also....would you consider an out of state center? (Or does your insurance only cover in state)
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