What a deeply draining and difficult day today. My daughter is turning 18 in December. She has been on the Care At Home Program since she was 8. Maybe longer. Do you find the days just go into the days and the years into the years? But the Care at Home Program stops at age 18. It took me many years to learn that program and I felt comfortable. I knew what it was about, I planned out my e-mods, my aides at home and we were cruising along.
Lately I have found the paperwork to be overwhelming. Like I am always behind in getting it done and when I do–it seems like 10 more things are needed. BTW, I have three children. One who wants to be a police officer and then my two girls. Britt has Cerebral Palsy, Epilepsy and Mental Retardation. She is non ambulatory and non verbal but an amazing girl. Jess is my spunk in life. She is PDD-NOS, defiant, OCD and ADHD. She is also very delayed but she knows what she wants.
So today, I had my assessment. I did the Front Door in May and today we reviewed my daughters’ abilities. It wasn’t difficult (I recommend looking at the DPP-2 form on the OPWDD site before you have this assessment–its word for word). Anyway, I left the conversation extremely drained. Reality was sinking in. Choices, choices, I want to make the best choices for her. But here’s the kicker. You need an MSC. I have called six agencies and there are all waiting lists. I wanted to see about respite, there was a waiting list. We all have heard about the waiting list for housing and for day hab programs. So basically the program so far looks good on paper but I am fearing it is going to be very, very difficult to get it going.
I work full-time, am divorced and barely have enough hours to get through my day. I hope I have the strength. I am starting this blog now because I think this is the turning part and important part of the next few years of our lives. Maybe I can help others as I try to figure out all this confusion!