Re: Charlene to Ken

[Guest guest]

Thanks Ken, actually you do have some interesting points despite the

varietions in our systems. It is nice to have Debbie B. handy with

all of her expertiese both as mom and student support supervisor.

I'm intriqued to note that your son has an apparent skill in math

and numbers - our does too - even though it is early in the

school career - it is apparent that he has some talent and interest

in math. Another friend of mine who has two nephews with RSS noted

that both boys were exceptional mathmaticians and when they grew up

they both went into professions where math is integral. I wonder if

there is any connection - you know interms of brain development.

The genetisists made a special point of saying if none of his issues

are interfering with his learning to not make a big deal out of it.

But when a teacher makes a big deal out of things she notes are

different - it can be really hard to ignore. Any way thanks for the

input - it was very helpful.

Appreciatively,

Charlene, mom to , age 4

> >

> > This week we took to the genetisist for our follow up.

She

> > had her 'student' do the preliminary work up and then came in to

> > visit. She checked him out - asked us questions - focussed on

what

> > characteristics he has and then told us there really is not any

way

> > that she could give us what we came for, which was some sort of

> > written confirmation about RSS to present to his school so that

an

> > IEP can be established. She said this isn't possible because

there

> > really is no way she can say for sure - although she did comment

> > that what has is definately genetic. She then focussed

on

> > some of the characteristics (phenotypes) that he doesn't

possess.

> > She was particularly focussed on the fact that he has no

apparent

> > asymmetry. We are absolutely frustrated as she then told us to

> wait

> > and see what the endocrinologist says. We were a bit dazed,

asked

> > about the previous 'differential' diagnosis and were told that

> these

> > are given merely as possibilities and the possibility remains

that

> > he has a genetic syndrome - but what it is she doesn't know.

What

> > kind of assurances have you all received as parents (outside of

> > those whose children tested UPD pos)? Should we just give up and

> > move on and hope for the best - he has had a brilliantly healthy

> > winter (touch wood). I'm at a loss.

> > Charlene Mom to , age 4

> >

>