[tri-med] Re: looking for ideas/suggestions

hi Michelle, Yes I have told Jolene that she has special chromosomes, that
she has a little bit extra. She seemed to accept that explaination. She
doesn't think that she has a disability. It is great really that Jolene
doesn't see herself as 'different.' Maybe it was because she was
mainstreamed at school. It is such a shame that these children have been
mainstreamed for all of their schooling and then they are put into sheltered
workshops. I am trying to find some supported employment for Jolene but it
is really slow to happen here. Jolene had a nice boyfriend for four years
and he died suddenly last August. She was devastated. However she now has
another boyfriend. She tells me that they are going to go flatting together.
Look what you Mums of younger children have got to look forward to. Judy,
Mum of Jolene partial trisomy 2
----- Original Message -----
From: "James Waite" <jwaite@xxxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>; <tri-mosaic@xxxxxxxxxxxxx>
Sent: Tuesday, June 19, 2001 3:38 PM
Subject: [tri-med] looking for ideas/suggestions


>
> Evening everyone!
>
> I talked with Jim the other night and we've decided to tell Alex about his
> trisomy. The main reason is his age. He does things now without us and
with
> friends. It would be useful to know more of his own medical history.
>
> The big question is...how much will he really understand. Guess we'll not
be
> able to gauge that one precisely. I think that we'll cover the genetics
> basics and go into the "little extra" part.  :0)  We are going to make it
> "not a big deal" and matter of fact.
>
> The big thing will be letting him know that this is personal information
> that he is not to share with everyone.
>
> Has anyone told their child of the trisomy (Nan?)?
>  Is anyone aware of any books etc that might be helpful?
>
> I'm open to any insights and suggestions here.
>
> This feels like such a big step.................it's scary.
>
> Michelle mom to Alex (14, partial trisomy 14 mosaic) and Molly (10)
> Michigan USA
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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