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Decisions.. decisions

November 8, 2011

 

Rett is in mother’s day out today so no tot school.  So instead I thought I’d update on the decisions currently up in the air now.

 

I bought a ton of autism books and have been swallowing them whole. I read one from front to back in about 3 hours this weekend.   I will need to reread it a few times because so many times I thought THAT is what we need to do but you can’t possibly keep all that in your head.

One thing that the book talked about was the need for the child to be with other ‘typical’ kiddos.  This doesn’t mean send them off to school and hope for the best.  This means WITH an aide. That knows what they are doing.  That has been trained and taught how to coach, manage and support the program you have going on.  They talked about having someone to ask the child ‘what are the other children doing? go play with the other children’.  And basically having to do this over and over and over until it becomes habit.

The state will not give me normal preschool. It will give me a developmentally delayed preschool with 4 other children who may or may not be on the spectrum.  Mother’s Day Out does have ‘typically’ developing 2 year olds in it. Its also only $25 a day so I figure for our money, its probably one of the best therapy choices we have.  But sending him isn’t what helps. Its having the aide there to push him to join the other children, monitor his play and prompt him to respond the way he has to at home (I want.. make choices.. use his words).  No teacher with multiple other toddlers is going to be able to do that and to expect her to is just plain silly.

 

So my plan is to have a sit down with the Mother’s Day Out director and our teacher to sort of introduce them to Rett and his autism traits, give them a list of our goals and also approach the subject of coming up at least during play time if not all day and being Rett’s aide.  Ideally we would be able to afford someone to go up and be with him all day.  But I don’t see that happening for us so we’ll try this out.

 

The next thing we are working on making decisions on is his speech therapy.  I haven’t been very shy on how disappointed I’ve been with our therapist up to this point.  I have given her over a month now. I feel that she should know Rett by this time and have in her head what he should be working on.  So my plan is to schedule a sit down with her armed with what WE think his speech goals should be, then see what she thinks and if their approach can make this happen.  If it can’t, I need to go to a different center.  I’m tired of wasting time and money. More importantly, I need to find people that I trust so that I can stop stressing over some of this stuff. Until we have a good speech program in place where I can rely on the therapist to be setting up a therapy program and guiding our progress, I take that stress onto myself and I can’t do it all.

 

I am also getting into contact with a BCBA in our area to see if we can get some help on a VBA home based program.  We are doing great so far but come across questions we need answered and we’re unsure of how or when to take the next step of expecting him to say more words for requests.

 

So for now, we will focus on tot school activities at home to help with his core knowledge, fine motor and cooperation skills.   As a family we are prompting him for more words and working on language, also looking to get a more goal set and structured speech program in place.  Looking to get our VBA program started with someone who knows what they are doing.  We are looking to take a more full advantage of our mother’s day out program.  And in January, we will get his OT assessment done and get OT therapy on the books.  He is also continuing to go to swim to work on balance and muscle building.  Did I mention I’m also pregnant?   It makes me feel better to write it all out like that. Like we’re really doing something to help him.  Some days it doesn’t feel that way at all.

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One Comment leave one →
  1. November 14, 2011 5:16 pm

    I just wanted to say I completely understand where you are coming from on waisting time and moneand y…been there and done that with Kaitlan and her tutors. Then I realized she didn’t need the place that cost the most because they were “the best of the best”. She needed someone who understood her and her learning disability. When I finally found it….she has soared! and I hope the same for Rhett!

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