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Re: Waiver soon!

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Does a w/c help at all to help feel safe and in control? it works

wonders for us to get Elie places he doesn't want togo.

Sara - Choose to make lemonade, not complain about the lemons.

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>Reply-To:

>To:

>Subject: Waiver soon!

>Date: Sun, 31 Oct 2004 04:07:58 -0000

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>We finally have someone from MHMR coming to our home on Monday to get

>the waiver started for . I work in the same building with MH -

> the MR division moved out, but one of the MR Case Managers was in

>the building last week and a mutual friend introduced us. I have so

>many questions about waiver, and she answered several of them for me.

>

>For starters, I want to get a behaviorist - a good one - to work with

>us, especially on transitions. She said there is a good one that

>does wonders. She said he'd go where I needed him to to observe,

>etc. I really want to prevent from going into the hospital

>if I can and I am more hopeful that can be done. The problem is that

>others tell me that I need to take advantage of the hospital

>treatment in addition to the waiver. We see Dr. Capone on Tuesday -

>and this is one thing I want to talk to him about.

>

>DH has a business trip (sigh) and won't be going to KKI with us. I'm

>hoping that my husband's cousin can go with me - his parenting skills

>are zilch, but he isn't afraid of getting hit by . My biggest

>problem will be getting into the door and waiting to see the

>doctor. I'm hoping the new clinic location will work better.

> has a double ear infection, so his behaviors here at home for

>the past few days have been intensified- I'm not looking forward to

>this appointment at all.

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> Does a w/c help at all to help feel safe and in control?

it works

> wonders for us to get Elie places he doesn't want togo.

>

>

Sara,

I have thought of that - but am worried that would use that

as a crutch and not walk when he could. For the transition piece, it

would help (we used one at the airport and his sister got one at the

zoo for him). If I remember tomorrow, that is a question that I want

to bring up with Dr. Capone.

I went to Walmart tonight and bought puzzles, a Shrek figure, two

Green Eggs and Ham books and some other stuff to pack for tomorrow.

I'm hiding the book and telling that Dr. Capone has it in the

office (humm..gotta sneak it in my purse). I keep talking about our

visit tomorrow and reminding him we have to wait and wait and

wait...lol. Even stopping at red lights bother him. When we used

the wheelchair at the airport, he had to keep moving - he wanted on

the plane as soon as we entered the terminal. Waiting and

transitioning are his two biggest triggers.

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I think we would have more fun if we had use of a special needs

stroller. There is so much we could do if he let us. I did buy a

visual scheduler from ebay - but immediately tore up the

doctor picture!

Here is how our day went (btw, we were also at the new site-great

playroom with staff that really plays with the kids):

was just awesome!! I was so happy that he was able to hold

it together. Between the prayers and the bribe that I used - he had

a great day!

is very obsessed with Green Eggs and Ham. I buy at least one

copy a week. He tears out the pages, puts them in a circle and

spends a few hours re-ordering them before he tears them up further

(I have in the past laminated the book). So, last week, he asks me

to go buy GEAH. I told him Dr. Capone would give him a book if he

did well. I spent the last several days reviewing our schedule and

reinforcing what he would get if he were good and that would come

from Dr. Capone, not me. We got there early, walked a few blocks to

a cafetaria, ate and then walked back to the office. He went in, sat

down and was just so, so good! Then he went to the bathroom and Dr.

Capone came from around the corner - I was able to sneak him the book

(I had it in a padded envelope so could not see it).

came out, went to the playroom and then easily transitioned into the

exam room. He tried to get our attention - but Dr. C told him it was

important that we talked and he had a surprise for him (should have

seen his face). He got his book from Dr. C and the visit was over.

He would not leave the room - so I turned off the lights and shut the

door. He still would not leave - then I figured out that he must

have thought the book was to stay. Once I told him the book was his -

let's go - he went. Now it gets better. We drove to the other

s Hopkins campus to meet grandma. Her aunt (the only grandmother

figure in Tim's life) is 97 years old and is in a rehab facility.

The plan was that grandma would babysit so I could run in and

visit with Aunt . Well, walked right in there with us,

greeted aunt with a kiss, sat for an hour (reading his book!)

and continued to behave very well!! We then left and he told me he

was going to take a nap - he slept the whole way home!

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