Down Syndrome

 

‘I Have Down Syndrome — Know Me Before You Judge Me’

 

The following story is from National Geographic Kids, Melissa Riggio shares her thoughts about Down syndrome.

http://kids.nationalgeographic.com/kids/stories/peopleplaces/downsyndrome/

Above photograph by Annie Griffith Belt

 

 

When I first started to work on this story, I thought maybe I shouldn’t do it. I thought you might see that I have Down syndrome, and that you wouldn’t like me.


My mum thinks that’s silly. “Have you ever met anyone who didn’t like you because you have Down syndrome?” she asks me. She’s right, of course. (She usually is!) When people ask me what Down syndrome is, I tell them it’s an extra chromosome. A doctor would tell you the extra chromosome causes an intellectual disability that makes it harder for me to learn things. (For instance, some of my classes are in a “resource room,” where kids with many kinds of learning disabilities are taught at a different pace.)

 

When my mum first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different. I just want to be like everyone else, so sometimes I wish I could give back the extra chromosome. But having Down syndrome is what makes me “me.” And I’m proud of who I am. I’m a hard worker, a good person, and I care about my friends.

 

A Lot Like You
Even though I have Down syndrome, my life is a lot like yours. I read books and watch TV. I listen to music with my friends. I’m on the swim team and in chorus at school. I think about the future, like who I’ll marry. And I get along with my sisters—except when they take my CDs without asking! Some of my classes are with typical kids, and some are with kids with learning disabilities. I have an aide who goes with me to my harder classes, like math and biology.

 

She helps me take notes and gives me tips on how I should study for tests. It really helps, but I also challenge myself to do well. For instance, my goal was to be in a typical English class by 12th grade. That’s exactly what happened this year! But sometimes it’s hard being with typical kids. For instance, I don’t drive, but a lot of kids in my school do. I don’t know if I’ll ever be able to, and that’s hard to accept.

 

Dream Job: Singer
I try not to let things like that upset me and just think of all the good things in my life. Like that I’ve published two songs. One of my favourite things to do is write poetry, and this singer my dad knows recorded some of my poems as singles. Right now someone else is singing my songs, but someday, I want to be the one singing.

 

I know it’s going to happen, because I’ve seen it. One day I looked in the mirror, and I saw someone in my head, a famous person or someone who was somebody, and I just knew: I will be a singer. It’s true that I don’t learn some things as fast as other people. But that won’t stop me from trying. I just know that if I work really hard and be myself, I can do almost anything.


See Me
But I still have to remind myself all the time that it really is OK to just be myself. Sometimes all I see—all I think other people see—is the outside of me, not the inside. And I really want people to go in there and see what I’m all about. Maybe that’s why I write poetry—so people can find out who I really am.

 

My poems are all about my feelings: when I hope, when I hurt. I’m not sure where the ideas come from—I just look them up in my head. It’s like I have this gut feeling that comes out of me and onto the paper. I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend. After all, I would do the same for you.


What Is Down Syndrome?
Down syndrome is an intellectual disability that about 5,000 babies in the United States are born with each year [with around 350 in Australia] . A person with Down syndrome has 47 chromosomes, microscopic structures that carry genetic information to determine almost everything about a person. Most people have only 46 chromosomes. It’s the extra chromosome that can cause certain physical characteristics (such as short stature and an upward slant to the eyes) and speech and developmental delays. Still, people with Down syndrome are a lot like you: They are unique people with strengths and talents.

 

 

Further reading/contacts:

http://www.babycenter.com.au/baby/health/downssyndrome/#

South Australia Down Syndrome Society of South Australia Inc Hampstead Primary School, Greenacres, South Australia  Tel. (08) 8369 1122  Fax (08) 8261 7660

Email info@downssa.asn.au

Website: www.downssa.asn.au


News: PRESS RELEASE 30 June 2012: International Criminal Court to examine New Zealand antenatal screening programme, click here for the press release For exclusive 3 News coverage click here.Savingdowns.com on FacebookAt savingdowns.com we advocate for the life of people with Down syndrome from conception to natural death. Family Life International NZ and Saving Downs are holding a one-day seminar “Loving Every Child: Defying Eugenics”.

 

This will be an opportunity to learn about the history of eugenics and its recent emergence into New Zealand society through birth prevention, which is being particularly targeted towards the Down syndrome community. It is on the 4th August 2012, in Auckland, New Zealand. Click here for details.See our new resource 11 facts for Midwives, GPs and Parents to know. We are a New Zealand based group of parents and siblings of people with Down syndrome.

 

We have formed in response to the New Zealand Government’s new state funded eugenic antenatal screening programme that targets and identifies unborn children with Down syndrome for selective abortion. We’re in the news for standing for the life of people with Down syndrome.As reported on TV3 News we lodged an application with the International Criminal Court (ICC) on 29 June 2011 against the screening programme.

 

The ICC has confirmed that this application is being considered. The Office of the Prosecutor has been asked to investigate and intervene in the Ministry of Health’s antenatal screening programme, as it persecutes against people with Down syndrome through the prevention of their births.The eugenic nature of the screening programme was exposed in TV3′s 60 Minutes documentary on 12 June 2011 “Down but not out”.The 60 Minutes documentary was introduced with the statement “people with Down syndrome may soon disappear from the face of the earth.”

 

60 Minutes revealed the new screening programme was introduced without public consultation and the Ministry of Health “did not bother” asking the opinion of anyone who has Down syndrome, about the programme.Mike Sullivan, father of three-year-old Rebecca Sullivan who has Down syndrome, featured in the 60 Minutes documentary.

 

He said people with Down syndrome and other disabilities are human beings who live full and rewarding lives. “They must be treated on an equal basis with other members of our society, without any form of discrimination.”De-Anne Jensen, mother of three with her oldest son having Down syndrome also featured on 60 Minutes. “Government documents say it costs less not to have children with Down syndrome around, so it looks like they are working to do away with Down syndrome. It’s cheaper; you don’t have to pay for the special needs things.

 

The Government and medical experts are putting a monetary value on our baby’s lives,” Mrs Jensen said.The complaint references Government Cabinet papers obtained under the Official Information Act stating the outcomes of the programme will be a reduction in the number of births of people with Down syndrome, with around 90% of unborn children diagnosed with the condition being terminated.

 

The persecution of an identifiable group of the civilian population through the prevention of births is specifically prohibited under the Rome Statute of the International Criminal Court, to which New Zealand is signatory.

 

The programme is promoted and funded by the government at a cost of $9.4M per year, or around $75,000 per unborn child diagnosed with Down syndrome.We are supported by parents of children with other disabilities that are being similarly targeted and other organisations who support their concerns. Pro-life group Right to Life New Zealand are a co-complainant in the ICC proceedings.Our position statement is that genetic screening must not be used to prevent the birth of unborn children with Down syndrome, or cause harm to any unborn child.

 

We recognises genetic testing may help some parents prepare for the birth of a child with Down syndrome. Any testing must respect the life and integrity of the unborn child, cause no harm, be only directed towards safeguarding or healing the unborn child and be presented in a way that does not discriminate against people with Down syndrome or any disability. Any testing must be developed in full engagement with those with Down syndrome.