[tri-med] Re: Request for help, please

Thanks for the honest reflection of kids with disabilities, Jocelyn.
 
I suppose it is natural to fear or oppose something that is different. I don't 
know why. Maybe because we don't know how to deal with the situation so we are 
uncomfortable? 
 
I will admit fully to once being someone who didn't get it. I will admit, and 
this is a very, very, awful thing to say, that I actually opposed integration 
because my kids shouldn't have distractions from their studies. What a shallow, 
shallow person I was!! the most important lesson would have been having that 
special needs child in their class!
 
The other day, a senior person in our national downs association told me that 
if he and his wife knew they were having a downs child, they would have 
terminated. They are both academics and wanted two children who would also be 
academics. He said his Downs daughter is the most beautiful thing in his life 
and he can't imagine life without her. 
 
I met a lovely university student a while back from another country. She told 
me about her gap year (yr off after high school to volunteer, think, work to 
mature before university/college) Her dad, a surgeon, told her she was going to 
a center for children with profound disabilities. She was upset, angry and 
shocked. All her friends were going to exotic places, like volunteering in 
Africa. She said it took about two weeks and first she was scared. It was the 
first slobbery kiss that did it she told me. She cried with the sudden 
realization of seeing the humanity in those children. What a wise father to 
know his daughter would receive that gift from that job.
 
I think if we eliminate all of the tri13/18 kids or kids with profound 
disabilities, we will point more fingers at the Downs kids and if we eliminate 
them, there will just be someone else. 
 
I went to visit a wonderful family with a full house of special needs kids who 
had been adopted. One had tri13 and she had been vomiting a lot. She was the 
first tri13 baby I met. The mom and I were so worried about her. After many 
hours, I turned to look at the ten year old in the house who had Downs. She was 
minding her own business, looking for a snack and going off to play. I said to 
her mom, "Downs is really no big deal is it?" and she said, "absolutely, it is 
not". 
 
Maybe the kids with the "profound" disabilities are at the bottom of the heap 
in some people's eyes. That is why I think society needs to ensure that they 
have appropriate care from the system...or laws to support that they should. So 
long as they do, society is safe, in a sense because once it is generally 
accepted NOT to treat these kids well, then someone else will quickly be on the 
list. History taught us that. It marks the beginning of the end.
 
Annie may not have lived long but the lesson she taught us in indeed profound. 
When I see any vulnerable person, at any age or stage of life, my heart is full 
of compassion and empathy and not the fear and repulsion it once may have 
tended to before. It is a tremendous and important lesson and gift. 
 
barb  Mom to Annie


> Date: Sat, 20 Oct 2007 17:33:02 +1000> To: tri-med@xxxxxxxxxxxxx> From: 
> jknowd@xxxxxxxxxx> Subject: [tri-med] Re: Request for help, please> > Great 
> post Michelle thanks for playing devil's advocate.> > Last week at patchwork, 
> I mentioned that Tess was going into hospital > on the 25th to have her heart 
> catheterisation (next day). One woman, > who is still working as a theatre 
> sister, said "but why would you do > that, why are they doing it". I was 
> actually speechless for a couple > of seconds, before responding, "because we 
> love her, and this is to > see if a drug will help with her pulmonary 
> hypertension". I can tell > with my friends at patchwork, those who 
> understand our love for Tess, > and those who obviously think she is of no 
> value to society. The > negative ones either keep a stony silence, or ask 
> questions like the > theatre sister. Whereas the positive ones, often ask 
> after her health.> > It is only in the last 10 years or so, that disabled 
> people are taken > out for outings to shopping malls etc, in the hope that it 
> will > encourage more folk to become "accepting".> > In the house I grew up 
> in, my Dad would talk about Down syndrome > kids/adults, always with a 
> wrinkled nose, as if a bad smell came from > them. He discouraged me from 
> going out with a local schoolteacher, > who sang in the same church choir we 
> did, just because he had a Down > Syndrome sister. As a result I viewed them 
> with a sort of fear. This > was back over 50 years ago, and I'd hope that the 
> general public is > more tolerant in 2007.> > A few years later after we 
> moved to Australia, one of our close > friends was a woodwork teacher at a 
> Brisbane Down Syndrome sheltered > workshop; through him, we came to know the 
> value of the kids/adults > he taught. We met many of them; I was hugged off 
> my feet once by one > exuberant young man. I can still hear Fred's broad 
> Scottish accent > when he said "Oh these are great kids, they have much to 
> offer the > world". Fred's example helped me to overcome my fear.> > > We 
> can't belt them over the head to make them see our point of view. > You know 
> that saying about "walk a mile in her shoes". I guess we > have all had some 
> reservations about disabled children, before we > were faced with it head on. 
> I think how you react to the challenge is > the thing that matters. Tess 
> completely swayed me over, and also > meeting other disabled kids here in 
> Australia, and hearing day to day > stories from our list friends. Sadly, I 
> think the majority of people > just DON'T GET IT.> > > > > At 06:10 AM 
> 20/10/2007, you wrote:> > >----- Original Message -----> >From: "Kim 
> Ihlenfeldt" <kimihlenfeldt@xxxxxxxxxxx>> >> > > OK, so how do we change 
> this?> >> >Now THERE'S the 50 million dollar question!> >> > > So if people 
> feel that it is pointless to spend money on saving kids who> >will not be 
> "productive people", why do they feel it is OK to spend money on> >drug 
> addicts who continuously go back to their addictions, alcoholics who> >have 
> to have a liver transplant because they killed their liver,> > >pedophiles, 
> rapists, killers, etc?> > Jocelyn, loving Nanna to Tess with Trisomy 18 aged 
> 10 & 1/2 years> > Building ___ooOOoo__ Rainbows> www.trisomyonline.org> 
> Families Helping Families On-line> 
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