We have been waiting for respite services for over 2 months. I was told the turn around time was 2 weeks. I keep on getting the run around. I was told at a meeting the other day we likely will not receive this. I hired privately a college student to help us out for the summer after I was told that if I bring someone to the agency that they could have her on their payroll within 2 weeks and could offer her services to us for a few hours a week. It has been 8 weeks, they have had this poor girl jump through every hoop their could be (fingerprinting, interviews, TB testing, paperwork) and I still have yet to hear anything despite several contacts.
For those of you who are in the "thank God I don't have a kid with a disability" camp - please realize that when you think a family that has a child with a disability receives assistance - that they probably receive SOMETHING - but not was is promised and that they likely have to yell and kick and scream to receive what they do. This isn't always the case of course, but it is more the rule than the exception for the anecdotal evidence I have seen. I can remember driving by a child in the neighborhood who is wheelchair bound and thinking about who helps bathe the child and all the other tasks. I remember thinking that they probably get a lot of help - and they may. I wonder if Zach's issues were more physically/visually manifested if that would help us to get help. Sort of reminds me of a rape victim who doesn't fight back and doesn't get bruised - does she receive the same pity as one who gets the snot beat out of her. Should their be a difference?
Anyhow - Zach's progress has slowed again - we are attributing it to the lack of consistency in schedule since one of the therapists has been out quite a bit lately. This therapist initially had taken 8 days vacation. Now, the poor girl's house caught on fire while she was away, and she is dealing with that situation. This is a huge impact on Zach. I have had the private therapist coming twice a day to help keep the hours up. Zach just loves Ali - I mean seriously loves her! She told me she thinks he has a crush on her. While he is not meeting some of his educational targets, his behavior is absolutely outstanding when she is around - great eye contact, he engages with her, and has little if any transition issues from being with her and then being with me. I just don't want this girl to leave. She has the Midas touch with my boy.
He is saying "bye", "bye-bye" and "goodbye" on his own now. It is funny how he doesn't use just one phrase. It is also funny when he uses it when a therapist walks in the door - as if to say "go away".
For the past few weeks, Zach has become Thomas obsessed once again. he wen through this awhile back. He doesn't just want to watch the videos, or play with his train sets, he walks around holding his trains wherever he goes. I noticed his interest in his baby blanket has diminished quite a but when this obsession hit, and am wondering - could this be his new transition object (also known as a lovey)?
Working on riding his trike, trying to get him to gesture for "yes" and "no", and next week may commennce the potty training. So that is what is on the docket for now. Thanks for reading.
2 comments:
I wonder how many families deal with autistic children without understanding what they are dealing with. At least you have skills and determination to get all that you are entitled to. I hope that respite services will come through too and that Zach will make another spurt soon.
Here. Listening. Nodding. Remembering.
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