Resources & Blogs About Down Syndrome
To say I am an expert on this would be a big, fat, hairy lie. The fact is I have lived with my family securely settled in a nice comfy spot practically under a rock for the last 22 years. Sure, we have internet. But we also had busy jobs, a good school, and a stubborn streak of procrastination that has led us to today, where we have now peeked out and said “Oh, Maybe we should look into that.”
SO, Like the many many blogs out on the web started by families of the adorable children with Down syndrome, I decided we’ll do this adult thing in the open. And share with you what I learn as we go. That said, share with me! Ask anyone, I’m happy to have someone else tell me their research findings and let me in on their hard earned knowledge.
Also, I’m prone to long winded prologue disclaimers.
As a resource I am learning to appreciate this organization the most:
dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy
There is a new and growing social forum for people who love and care for adults with Down syndrome: The Road We’ve Shared.
There are many great blogs out there, here are a few of my favorites:
Jisun married Latke and they have three spicy taters. Jisun’s writing can make you cry, yell, and smile, all in the same post. Following her journey is an absolutely lovely find.
In 1987 I met my best friend. My son Josh changed my life in ways I would never have imagined. He introduced me to a wide range of people, some great, some not so good. He was never a “problem” or a “challenge” but dealing with other people’s reaction to him often was. The one thing I’ve learned over the years is that we all do the best we can with what we know. It’s our responsibility to continue to learn, grow, and broaden the experience of others when we can.
From across the great pond, this mom of the lovely young model, Natty, warms our heart while she works to “gently changing perceptions of Downs syndrome.” Side note: It’s Down syndrome in the US and Downs Syndrome in the UK, also they add extra u’s to random words, all the more fun reading!
Also a country away is Jen, an incredibly honest and educated mother who blogs, networks and advocates in addition to being a mother of twins and a full time RN. Her blog Down Wit Dat is a winner in my book from the tagline alone: “My kid has more chromosomes than your kid…”
***I’m pleased to be a part of these great resources that easily connect people***
Disability Scoop :
This website offers important updates about government updates, news, consolidated links to questions regarding legal issues, scientific studies and research, and “hot topics.” The newsletter alerts you to new info or poke around the site if you’re looking for specific information.
Last year I squirmed excitedly as I watched and re-watched the live webcast at United Nations on March 21st, World Down Syndrome Day. What a great day of advocacy and education! And here it comes again –
World Down Syndrome Day 3-21 http://www.worlddownsyndromeday.org/