http___magazin.hrt.hr_443252_problemi-na-koje-nailaze-osobe-sa-sindromom-down-te-njihove-obitelji_1.xml
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On August 14th, CBS reported that Iceland is pushing to “eradicate” Down syndrome—essentially to “disappear” individuals with DS through “heavy-handed genetic counseling” which pushes for expectant parents of babies with Down syndrome to terminate the pregnancy. The result is what they’re calling a 99 percent eradication rate, with, on average, “just one or two children born with Down syndrome per year” in Iceland, oftentimes “after their parents received inaccurate test results.” You can read the full story here. Brittany’s mom, Susan Schiavone, has chosen to speak out. This is her response: It has taken me a few days to digest the news shared by CBS on August 14th about the “successful eradication” of Down syndrome in Iceland. Opinions have been flying and judgements are being made. If this opens an honest discussion about Down syndrome—the challenges AND the blessings—wonderful! We need our doctors, nurses and genetic counselors to present families with a balanced view of what a life with Down syndrome looks like in 2017, not 1950. Obviously, I’m biased. Brittany has been an incredible blessing in our lives, but it hasn’t always been easy. That being said, raising my wonderful, smart, compassionate son hasn’t always been easy either. But who ever said raising children was easy? You do the very best you can with the resources at hand, fight tooth and nail for them and pray for the best. No one has a crystal ball to tell parents how their child’s life will unfold. Would you abandon your child if they suffered a devastating illness or accident? Would you walk away from your two year old who was just diagnosed as being on the Autism Spectrum? Would you say, “Ok, I’m out. This isn’t what I signed up for!”? I don’t think so. Who gets to judge quality of life? Certainly not some doctor or genetic counselor or “well-meaning friend,” and CERTAINLY NOT before that child is even born! Watching the CBS interview, I noticed the word “eradicate” is used in an interesting way in Iceland. In my mind, we work to eradicate the most challenging diseases: Cancer, Alzheimer’s, Heart Disease, not the PEOPLE who have them! It says a lot about a society that chooses to “cleanse” its population and “spare” its children and families the “burden” or “suffering” a child with Down syndrome may bring. Students of history have heard this before and it is truly terrifying each time. What group could be next? People are afraid of what they don’t understand, so it is up to us, the families and friends of individuals with Down syndrome, to educate. It doesn’t matter if your child is 5 or 25 or 50. Talk to people about the scientific research being conducted to improve memory and cognitive skills in individuals with Down syndrome. Describe how early intervention, preschool services, inclusive and integrated educational environments stimulate intellectual development and understanding of differences. Explain how improved support services for adults serve to develop independence and vocational skills so these individuals can hold competitive jobs and live self-sufficiently in their communities. Talk about their successes and their challenges. Talk, talk, talk! The goal is to help our loved ones lead more active, independent, fulfilled lives and to participate as fully as possible in their communities and the world around them. Isn’t this what we want for all our children?
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Problemi na koje nailaze osobe sa sindromom Down te njihove obitelji U Hrvatskoj je oko 1700 osoba s Downovim sindromom, 50% ih je u dobi do 19 godina. Iako je posljednjih desetak godina napravljeno mnogo na uključivanju osoba sa Downovim sindromom u drurštvo, problemi i dalje postoje. Primjerice u Italiji je preko 20% osoba s Downovim sindromom zaposleno na otvorenom tržištu, ima radnu knjižicu. Osobe s Downovim sindromom u Italiji imaju ranu intervenciju, idu u redovne vrtiće i škole, a po završetku školovanja rade skraćeno radno vrijeme. S kojim se sve problemima susreću u Hrvatskoj pokušat ćemo istražiti u današnjoj rubrici Imam problem. U reportaži pogledajte na što se požalila našem Saši Užareviću gospođa Natalija Belošević predsjednica Udruge za sindrom Down Zagreb i sama majka djeteta s Down sindromom: