Not sure why but today I have been kind of bummed out all day. I was ok for a while this am but when I got to work it seemed to get worse again. I started the day off disinterested in doing the am chores, but that is nothing new.
I went to Laura' ISP, this is a 6 months review of how she is doing at day program with her OT, PT, speech, nursing and her goals. Seems as though everybody agreed she has a good morning but at lunch she begins to have a melt down that progressively gets worse until she leaves. She has anxiety mostly about walking, she can really dig in and refuse to walk. At program she uses her walker in the building and to and from the bus. If she goes out on a long distance outing she has a wheelchair she can use. Most of us have the same belief that she is afraid of falling. I listened to everybody's story and realized I needed to try giving her ativan earlier in the day instead of when she gets home. So after I left I called the doc, hopefully she will write the script for what we need, and it improver's her life.
We also discussed the issues with getting her into a respite program, I have been trying for almost three years now to get Laura into a respite program all I have gotten was a lot of frustration. Because she is an insulin dependent diabetic and has an insulin pump, nobody wants the responsibility of having her in there program. I spent almost two years trying to train a local agency but there staff turn over was faster than my training was allowed. All I ended up with was a headache and because Laura has to be there, she has great anxiety about moving somewhere else. There is no real way to get her to understand that someday she will need to live in a group home. I have no desire for Laura to leave home. I truly have great fear of the day she will need to go live "somewhere else", as Laura calls it. I have worked for the state office of OMRDD for 28 years, I have seen great staff and awful staff. Nobody wants there baby at the hands of someone else. But I watched many young ladies and gentlemen being put into the institution or a group home on an emergency basis because there parents had either gotten sick or died. They were shocked and scared, anxiety was very real for them. You can't blame them, it is hard enough to go to a new school let alone being dumped into a home you have never seen or lived in.I DO NOT want that for Laura, she lives with some level of anxiety even here at home with people who love and understand her. Is it really too much to ask for her to be exposed to another type of home before she has to live there????? That is all I want! But we have an agency that takes the word retarded out of there name but does not want to treat them for all there disabilities, only there so called intellectual disabilities. Laura's intellectual disabilities are the lest of her problems, it is her physical disabilities that cause her the most stress. So Why does this office refuse to step up and ensure that all of there disabilities are taken care of???
Of course the government is broke and continues to cut services on a regular basis, this and all I mentioned could be a big part of my stress, what do you think???? For now I have a little girl, who just so happens to be turning 25 in a few weeks, she is tired and needs my help to get settled into bed for the night. I am not far behind her, more tomorrow.......
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