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

Tammy, 
Thanks for sharing. That is a miraculous story about Cayden. It is really 
incredible. 

Especially, as he was two when the doctor said that, you'd think that the 
writing was on the wall. 

You can imagine what a family with an infant might do if given that prognosis 
when their child's life is in peril and the decision is to treat or not treat. 

I think it highlights that it is important to educate not only can the kids 
(especially tri 13/18) live longer, but that they have a great quality of life 
to those who love and care for them.

What a success Cayden is. Please, please please, write to that doc, in a very 
nice way, so that your message with stay with him. Maybe include pics and a 
note from the teacher. By doing so, you will help a number of people. 

The truth is that docs need to say, "we don't know" the range can be from this 
to this and we really don't know. 

Thanks so much for sharing your beautiful story.

Barb


> From: sarmstrong7@xxxxxxxxx
> To: tri-med@xxxxxxxxxxxxx
> Subject: [tri-med] Re: Do tri 13/18 kids experience joy?
> Date: Tue, 26 Aug 2008 20:43:29 -0500
> 
> 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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