If you’re new here, this is Henry. He’s my 10 year old son. That’s his iPad he’s holding. In this picture, he’s in the middle of a “You’re It” game with his little brother. In case you aren’t sure, Henry has Down Syndrome. Henry isn’t a “Down Syndrome boy”. He’s a boy. He’s 10. He loves music. He’s addicted to his iPad. He gives the best hugs. He just happens to HAVE Down Syndrome. It doesn’t define him. It isn’t who he is. It’s something he has – like brown hair, hazel eyes, enviable flexibility & a mischievous, deep-throated chuckle.
Today is March 21st. Also knows as World Down Syndrome Day because people with DS have one extra chromosome on the 21st pair. (Trisomy 21) What does that mean? Here’s a quote from the World Down Syndrome Day site:
World Down Syndrome Day (WDSD) is a global awareness day which has been officially observed by the United Nations since 2012. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder. But there is still so much more we can do.
Down Syndrome International (DSi) encourages our friends all over the world to choose your own activities and events to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.
In today’s world, I think this type of day is SO important. As a planet, we are moving toward MORE inclusion, MORE acceptance, LESS bigotry. We are moving in the direction of realizing that everyone, regardless of race, creed, religion, sexual orientation, or whatever, is deserving of respect, inclusion, and humane treatment. No, I’m not saying we’re THERE. But we’re making progress.
If you’ve visited or read my blog in the past, you’re probably pretty sick of hearing me talk about the “r-word” movement and my desire to change society’s view of my son and other people with developmental issues. To get past seeing them as “less than” and accept that people who are different than us are PEOPLE just like we are. If you’re tired of listening to me bang my drum, I apologize. But I won’t stop.
So far, our family has been lucky. Our experiences with discrimination & hatred have been very, very few. In fact, I can only think of one instance of a person actually using Henry’s diagnosis as an insult. There have been some ignorant comments, but nothing overtly icky. But I do still see and hear a lot out in the world from those who do not understand DS. Those who think it’s something to be feared, avoided, mourned, or eliminated. Who call people with DS “sufferers”. It’s not. At all. Once you can get past the “what can’t my kid do” issue (which is all you and no reflection of the child at all), you realize that your child is just that. A child. Like every single other child. Sometimes they have health issues – just like other children. They need love. They need attention They need help & encouragement to reach milestones. They may not reach that milestone at the same time as Jimmy or Sally who’s the same age, but they’ll reach it. Henry learned to sit and crawl and stand and walk and run and jump. Henry learned to eat and dance and talk and share. Henry hasn’t learned to read or write yet. He has a lot of trouble with patience. He’s not toilet trained yet. But it will come. And if you’re a person who expects everything to follow a scheduled timeline and cannot tolerate deviation from that path, then you might see where Henry is as something negative. But you know what? That’s YOUR shortcoming. If you can’t accept another person’s differences, that’s on YOU. And all I have to say is “get over it”. Because you know what? You might be the neurotypical one, but people with Down Syndrome aren’t judging you based on what you can & can’t do, but for who you ARE. So who’s the disabled one?
Learn about Down Syndrome. It’s so easy in this technological age. Visit sites like National Down Syndrome Society or National Association for Down Syndrome to read about what it is. Find blogs written by people who have DS or know someone with DS. Noah’s Dad is a really, really good one. Also, Big Blueberry Eyes. Or just click here and you can read all my posts under the Down Syndrome category. Get to know us. Get to know our kids or other loved ones with DS. Because, as I’ve said many times before, I’m a firm believer that once you know someone with DS, it will utterly change your worldview. Also, watch this video. Hear about Down Syndrome right from the source.
Not all people with Down Syndrome are the same, just as not all people, period, are the same. Fight the ignorance. Fight the bias. Fight the generalizations. Acceptance. Inclusion. Love. That’s the bottom line.Tweet