Why get Karyotype? Re: fragile X?

[Guest guest]

In my area there are no community service to support parents at home. Not even

out of pocket day care. The ADA covers it but children are still turned away

based on their disability. My husband even lost a job once because of lack of

day care. If school were year around that would even help because the breaks

would be more spread out.

Virginia is ranked 47th in the country (at the bottom) for spending on community

based supports. The money that is spent is for adult group homes. When my son

ages out of school and the children's ICF-MR at 22yrs he will be going to a day

support program & regular group home not and ICF-MR group home unless there are

funding issues. (I'm not sure don't quote me here). I think adult ICFs are

still Medicaid funding but groups homes are Medicaid Waiver funded and this year

only 2 new slots were given to my area. So the adult ICF-MR is a last resort if

he can't get into a group home. I'd even chose to have him back home first if

day care weren't an issue.

That being said, a group home is still more of a medical model than being at

home with me. It's just less medical than ICF where they have to do Dr

appointments every 90 days and that is silly for my child who dispite his

disabilities doesn't get sick often. when he does it the sort of things you

catch from mouthing on things or it's a sinus/allergy thing or IBS. His immune

system is doing great.

http://thekitchenexperiments.blogspot.com/

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> > > > > > > > > Oh and we also have the pictures of his chromosomes and sure

> > > > enough #21 had

> > > > > > > > > three- very weird feeling to look at that piece of paper

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> > > > > > > > > _____

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> > > > > > > > > From:

<%40yahoogroups.com><%

> > 40yahoogroups.com>[mailto:

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> > 40yahoogroups.com>] On Behalf

> > > > > > > > > Of darsmom

> > > > > > > > > Sent: Monday, July 19, 2010 6:05 PM

> > > > > > > > > To:

<%

> > 40yahoogroups.com>

> > > > > > > > > Subject: fragile X?

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> > > > > > > > > Anyone get sent for testing after receiving Autism Dx? Our

> > nurse

> > > > > > > > > practitioner will be sending my son for genetic counseling if

> > her

> > > > findings

> > > > > > > > > are autism. He never had a karyotype at a baby. we don't even

> > > > know what kind

> > > > > > > > > of down syndrome he has.

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