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My answer to why the Down Syndrome advantage exists is simple: we want to be better people for our children. Yes, most parents feel this way for all their children, but having a child with a disability makes us want it so much more. We want a better world for our child to grow up in. A world that welcomes our children with open arms and that fully includes our children in schools and society. Let’s take a step back. What is the Down syndrome advantage? The advantage is that having a child with Down syndrome has a positive impact on people’s lives as well as that 99% of people with Down syndrome are happy with their lives (click here to view the article). The impacts are quite impressive. The divorce rate is actually lower for families who have a child with Down syndrome than those with a non-disabled child. 88% of siblings reported that they felt like better people having a sibling with Down syndrome. 79% of parents or guardians reported a more positive outlook on life because of their child with Down syndrome (click to view the article). Wow! How is that possible? Let’s start with the survey result that 99% of people with Down syndrome being happy with their lives. So why is this the case? The article talks about people with Down syndrome having high adaptive skills despite having lower than average IQs. I like to think that people with Down syndrome have a high emotional IQ, meaning that they are more clued in to emotional cues in others and have a high level of empathy. I do not think that their high level of satisfaction with their lives have anything to do with an intellectual disability, although some may argue that. I do believe that there are people with intellectual disabilities that do not express happiness with their lives, so I think that connection is invalid. Despite what the numbers say, I can only speak from experience. Based on that, I can tell you that Luke is a joy to be around and his smile and laughter is quite contagious. And when you have a child that is filled with so much joy, that makes you happy too. And you want to do your best to preserve that happiness for your child so you want to set a good example for others to follow with hopes to make the world a better place for you child with Down syndrome to grow up in. So the desire for a better world for our children is stronger when you have a child with a disability that brings such joy to your heart. Having such a strong support community also makes it possible to have a more positive outlook on life. Everyone will have his or her moments when life is hard and we feel discouraged. But there is such a strong sense of community online and locally that makes it easier to find support and comfort 24 hours a day! The care and support you get from essentially complete strangers also helps keep a positive outlook on life, despite the challenges you are facing. So how about marriage? One can make the argument that marriages where they decide to keep a baby with Down syndrome is already pretty solid, but wouldn’t the stress of having a special needs child strain the relationship? Or how about cases where the parents found out after birth? My non-scientific theory is that both parents want to be better people for their children as noted above, and seeing that in your partner makes you love them that much more. I can definitely say that is the case for us. When you see your partner be loving and caring, it warms your heart. I also think being a team to help raise a child with Down syndrome helps strengthen that bond of partnership. And the stress of raising a child with Down syndrome is going to be based on individual experiences, of course, but I think that it is less than what most people would expect. I also think that having a child with Down syndrome changes the way you look at life and things, mainly in positive ways. I know that having such difficulty having a second child in general made us so grateful to have a child that the Down syndrome diagnosis didn’t bother us very much. When you have struggles or challenges, you tend to have better coping skills and perspective. They say this sometimes when looking at children suffering from depression because they weren’t used to having struggles or in people who always get what they want because they don’t appreciate what they have. So it’s kind of a similar argument. Having perspective on a disability makes you appreciate the little things in life from enjoying the small milestones your child achieves to a stranger stopping to talk to you about your child. Regardless if they are completely politically correct or not, they usually mean well, and it’s nice to know that there are people who are just generally nice out there. I can deal with ignorance, but I have a lot less tolerance for cruelty. I have heard some say that it takes a special family to raise a child with Down syndrome. However, I think that having a child with Down syndrome gives us a more positive perspective, a bond with mere strangers that give us support when we need it, and motivates us to be better people. I think that our children teach us valuable life lessons that shapes our character in better ways. So I like to think that having a child with Down syndrome ends up making you a better person through all of that, and that is what makes us exceptional because we are fortunate enough to have such a beautiful child be in our family.
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Ožujak je mjesec u kojem se obilježava Međunarodni dan osoba s Down sindromom (World Down Syndrome Day). Datum 21. ožujka simbolizira 3 reprodukcije 21. kromosoma što je glavno genetsko obilježje osoba s Down sindromom. U zadnjih deset godina napravljen je pomak u obrazovanju djece s Downovim sindromom. Prije je bila rijetkost naći dijete s Downovim sindromom u redovnoj školi, no danas sve više djece je zahvaljujući ranoj intervenciji dobilo mogućnost učiti sa svojim vršnjacima u redovnom razredu po prilagođenom programu i uz pomoćnika u nastavi. Ovaj oblik školovanja se pokazao i u svijetu daleko najboljim. Dijete s Downovim sindromom dobiva mogućnost učenja, slušanja i napredovanja ne samo u socijalnim vještinama nego i u intelektualnom napretku. Djeca s Downovim sindromom su jako vrijedna, uporna i mogu puno više naučiti, spoznati nego što se mislilo i što se u nekim knjigama i danas može naći. Povećanim brojem djece u redovnim školama bilo kroz potpunu integraciju ili djelomičnu djeca/mladi s Downovim sindromom idu i u srednje škole, najčešće strukovne škole. Što konkretno možete napraviti? Ako želite pomoći onda idemo zajedno mijenjati svijet. Najbolje se svijet mijenja ako su naša djeca integrirana od malih nogu. Ako u vrtiću imate dijete s Downovim sindromom, druga djeca u vrtiću će ga prihvatiti, polako će ga prihvatiti i roditelji te druge djece. Ako imate dijete s Downovim sindromom u redovnoj školi, prihvatit će ga druga djeca u razredu, prihvatit će ga i roditelji te djece. Djeca u razredu će sigurno biti bolja i izrastat će u bolje ljude jer će svaki dan vidjeti što je to upornost, što je to trud, što je to boriti se sa svojim teškoćama, a biti raspoložen, nasmijan, spreman za učenje, za novo. A ta djeca će danas sutra biti ljudi koji će imati svoju djecu, koji će raditi, neki od njih će imati prilike učiti nove naraštaje, možda će netko učiti neko novo dijete s teškoćama, netko će imati prilike predlagati i mijenjati zakone, netko će zapošljavati ili imati prilike poticati zapošljavanje osoba s Downovim sindromom, a netko će se možda odlučiti posvojiti dijete s Downovim sindromom. Važno je da i kroz kampanje i kroz promjene koje smo naveli prvo gledamo da osobe s Downovim sindromom imaju iste potrebe kao i svatko od nas bio dijete, bio mlada ili odrasla osoba. Iste su socijalne i emotivne potrebe, iste su potrebe za punim i ispunjenim životom. Oni žele biti uključeni u zajednicu u kojoj žive i naravno žele biti korisni građani, a na nama je da im to i osiguramo i omogućimo. Granice su puno puta u nama, a ne u njima. Kao jedan od zadataka imamo i osvještavanje javnosti o svim poteškoćama i preprekama s kojima se susreću osobe Down sindromom kako bi mogle ostvariti svoje potencijale-mogućnost redovnog polaska u predškolske i školske ustanove, teškoće kod zapošljavanja, ostvarivanja prava na samostalan život,… Danijela Raič, bacc.occupational th.