's questions re ALAMA

[Guest guest]

To answer your last question first: We lived in semirural PA. Our local

school district could not/would not provide the education that our son Elie

needed. Therefore, I found a state approved private school and requested

that the SD pay the tuition for day school AND transport him to the school.

I must admit that I blind sided them - we deliberately moved to this

particular area knowing that there were a few approved private schools to

meet our son's needs within communting distance and we knew that the school

district would not meet his needs.

Therefore, we paid NOTHING for his tuition for 5 years.

Now we live in a really rural area (small town of 3,000 with a university of

4,000) and the public school for our son is WONDERFUL!> now if you have

followed this list for any time, you will know that I rarely have good

things to say about education . It takes lots of energy to search out

appropriate places for our kids. Elie is attending a regular highschool

altho he is in a self contained classroom. He is having many opportunities

to be with the typical kids - h/s level. We have even been greeted in

public by some students who regognize him.

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

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>Reply-To:

>To: < >

>Subject: Pleased to meet you

>Date: Tue, 7 Nov 2006 14:10:19 -0700

>

>Hello,

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>I'm Erekson and I'm new to the group. I've read the

>postings for a couple weeks, but haven't introduced myself yet. My son,

>Alma (7 yrs.) has DS and autism. We also have two daughters, Bela 11, and

>Pearl 22 months. Alma received his clinical dual diagnosis from the autism

>clinic at Denver Children's Hospital last spring, although we've known for

>a

>few years that he had something other than just Down Syndrome going on. I

>read all the information from the Disabilities Solutions newsletter about

>DS-ASD, and was so glad to have it all put together in one place! It's

>quite amazing how closely Alma fits the profile for DS-ASD, right down to

>the love for swimming. He is a delightful little guy but faces so many

>challenges. He doesn't speak. We've been using PECS for a long time, and

>Alma is only interested in using it to request. He's had severe sensory

>integration issues, most notably that he didn't eat solid food until he was

>about 5 years old.

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>One of the reasons I joined this list-serve was to get some suggestions for

>sustaining Alma's progress. We live in rural Colorado where my husband Jim

>is a professor at a small state college. The population of our town is

>5,000. We have struggled with finding adequate therapy for him. Currently

>there isn't any available private speech therapy. (He gets some at

>school).

>We are currently trying to negotiate appropriate therapy at school which

>would include a combination of ABA, floortime and TEACCH. The director of

>special services isn't interested in hiring a qualified professional to

>handle this. She wants to train existing staff in some of these methods.

>We are extremely concerned that Alma might be in middle school before

>anything actually happens. One of my questions is what is the school

>legally required to do? I realize that it is probably different from state

>to state.

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>A different scenario includes us moving to a place where Alma would get

>what

>he needs to progress. I am aware of a few schools in the west where the

>focus is on therapies designed for autism. (Oak Hill school in Marin, CA,

>and Carmen Pingree School for Autism in SLC, UT). Does anyone send their

>child to a specialized school? What are some of the better schools?

>(Especially in the Western US.) As much as I love the idea of inclusion, I

>wonder if it would be better for Alma to be in a school where he would

>actually get the training he needs to learn to communicate. Part of my

>concern however is the cost of tuition. I understand the yearly rate for

>Oak Hill School is $45,000-65,0000. Wow! What do people do to afford such

>a situation?

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>Thanks for any information,

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