[tri-med] Re: We Need Volunteers For A Rare Trisomy Parent Advocacy Panel In Washington DC (Oct '03)

Hey Jude, I have emailed you before about my beautiful princess Matilda - I
am very confused about her schooling and what to do with her and your email
caught my attention - does Kam go to a special needs school?  I'm not eager
to send Matilda to our local special needs school because I tend to think it
could be just a baby sitting service not a place of education.  Matilda
yearns for so much and is so eager to learn.  We are just in the process of
learning about conductive education and it's benefits - has anyone else had
experience with this??

Catherine - wife to Richard, Mum to Matilda aged 4 (full T-18) and Tom aged
2.


----- Original Message -----
From: Judith Wolpert <jfwolpert2@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Thursday, January 23, 2003 10:34 AM
Subject: [tri-med] Re: We Need Volunteers For A Rare Trisomy Parent Advocacy
Panel In Washington DC (Oct '03)


>
> i might be interested.  i am struggling now with kammie's school staff not
> thinking she has the potential to learn.  i am not so blind i dont realize
> she is very cognitively delayed.  it just seems like she keeps getting it.
> it just takes her months longer than other kids.
> she is really getting the yes and no (nod and shake head) thing down.
they
> dont even work on it at all at school.  she must be very frustrated with
> them.
>
> is soft sending parents?  just curious as i am a member of soft and a
> registry syndrome coordinator.  (bigger bang for your bucks!)
> jude, mom to derek-16, kelsey-14 and
> kameron-5-full trisomy 18
> golden, colorado usa
> http://chromosome18.org/stories_trisomy.htm#Wolpert
> http://www.trisomyonline.org/wolpert.htm
> http://home.attbi.com/~jfwolpert2
> ----- Original Message -----
> From: "Fawna Lockwood" <fawna33@xxxxxxxxxxxxxx>
> > What Debbie is looking for now, is to put together a panel of several
> > parents for a conference presentation in Washington DC next Oct.  I
> > met Debbie in person when she was in San Diego last Dec for this same
> > conference.  This will be families just telling these people their
> > experiences, the good, the bad & the ugly, in day-to-day advocating
> > for their rare trisomy children. This would be similar to a SOFT
> > Conference workshop in audience size.
> >
> > Working title is:
> >
> > Riding the trisomy roller coaster: Caring for a child with a low
> > incidence syndrome
> >
> > The conference is:
> >
> > Marriott Wardman Park Hotel
> > Washington DC
> > October 12-15, 2003
> >
> > Division of Early Childhood of the Council for Exceptional Children - it
> > brings together folks in early childhood special education (teachers,
> > therapists, parents), Head Start staff, university faculty, and policy
> > makers.
>
>
>
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>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>

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                       www.trisomyonline.org
                  Families Helping Families On-line

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