[tri-med] Re: Do tri 13/18 kids experience joy?

Hi Barbara,
My son is Trisomy 8 Mosaic, and he is 5 yrs. old.  The first three years of 
his life he was "severely" developmentally delayed.  We went to see a 
Pediatric Develop mentalist when Cayden was 26 months old.  Upon examining 
Cayden, That "highly recommended" Developmental Pediatrician sat us down and 
told that Cayden was "severely" mentally retarded, that he would NEVER walk 
or talk and that he would probably never be able to live on his own.  He 
then recommended that we find a home to put Cayden in, as we would 
eventually think of Cayden as a burden and probably wouldn't be able to take 
care of him.  He even gave us a list of phone numbers and addresses of homes 
that would be acceptable for Cayden, here in Kansas City.

I threw up all over his office.  I was ill for days, crying, throwing up and 
just staying in bed.  I went into full blown depression in a matter of a few 
hours.  My son's therapists (OT, PT, and Speech) kept telling 
me..............."the doctor is wrong".  I finally got myself together and 
went to talk to a Special Education School that is for children ages 3 yrs - 
6 yrs., it was an accredited school and they had very high ratings.  I 
begged them to take Cayden right away, as he was just 27 months old at the 
time.  They finally decided that they would enroll Cayden, but they really 
weren't suppose to enroll him, because he wasn't 3 yrs. old yet.

With one month, Cayden was walking.  After 3 months he was really starting 
to put two words together.  Cayden then started progressing at an extremely 
fast rate.  As of last week, Cayden started Kindergarten and he goes 1/2 day 
to regular ed classes and 1/2 day to special ed classes.  He is functioning 
at a 4 yr. old level and is still progressing everyday.  He know's his 
shapes, he counts to 20, he knows his ABC's and is pretty much a typical 5 
yr. old.

Everyday, I feel like calling that doctor and giving him a piece of my mind. 
I would have NEVER put Cayden in a home, because to me he was functioning, 
yes he was very delayed, but far from needing to be put in a home.  I often 
wonder, how many other parents this doctor has given false information to, 
and how many of those parents gave up on there kids and put them in a home.

It sickens me every time I think about it!!!  My opinion is YES, doctors and 
medical professionals are blind!!!!  I would have to disagree with him 
saying that Tri 13/18 kids do not experience joy.  Good for you sending him 
video's!!!  I think when doctor are wrong, they need to be told and shown 
they are wrong.  Reading your e-mail now makes me want to make an 
appointment to go see that Developmental Pediatrician and let him see how 
Cayden is today!!!

I truly believe that as a parent of these special children that you need to 
follow your own instincts.  And again, I do believe that Tri 13/18 kids do 
experience joy!!!

God Bless You!
Tammy Armstrong
Proud Mommy to Cayden, T8 Mosaic
----- Original Message ----- 
From: "Barbara Farlow" <b_farlow@xxxxxxxxxxx>
To: "tri med lists" <tri-med@xxxxxxxxxxxxx>; "triwings" 
<tri-wings@xxxxxxxxxxxxx>
Sent: Tuesday, August 26, 2008 8:09 PM
Subject: [tri-med] Do tri 13/18 kids experience joy?


> Hello friends in trisomy,
> In communication recently with an experienced neonatologist, I was quite 
> surprised to read that he believed that children with tri 13/18 were not 
> worth saving because they were "not sentient", which means that they are 
> not capable of experiencing joy or interacting with their surroundings.
>
> Wow. This is certainly not what I saw when I did research before my 
> daughter was born. Sure, it is a tough road, with a lot of sacrifice. But 
> as for not experiencing joy....
>
> I sent him some videos; a child with tri 13 and mieko videos (I made 
> special mention of the one aptly named, "giggles")
> I seriously wonder if loving parents see something as clear as day that 
> physicians and the medical system are blind to.
>
> Does anyone have any comments about this?
>
> By the way, the ironman just finished his 11th race to increase awareness. 
> He is getting more and more press each time. It is pretty exciting.
>
> www.ironmanforkids.com
>
> Barb  (mom to Annie)
>
> _________________________________________________________________
>
>
>                  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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