Times Have Changed

My daughter with Down Syndrome is 18 years old. She'll turn 19 next month. When she was a baby, I went to the internet in search of information, resources, and support for the challenges I knew my wife and I would face in raising a child with special needs. Eighteen years ago there wasn't a whole lot on the web about Down Syndrome. I could count on one hand the number of sites dedicated to the condition. I did find a very helpful list server that I subscribed to, and it proved to be an immense source of encouragement and support. In addition, Down Syndrome itself was rarely mentioned in the news.

Fast forward to 2012. There are countless sites on the web dedicated to providing resources for parents of children with Down Syndrome, as well as the many personal blogs where people share their experiences and stories of raising their child with Down Syndrome. I created a filter in Google News that will post in my reader any article with "Down Syndrome" in the headline. Every day there are anywhere from 5-20 articles that show up. There is so much information on Down Syndrome available today, and that's a good thing.

One other change I have seen is the way social media (Facebook, Twitter, Instagram, etc.) plays a large role in educating people about Down Syndrome (and disabilities in general). Again, people who have someone in their lives with Down Syndrome are quick to share their stories, photos, and videos, helping to dispel long-standing myths and stereotypes about the condition. I have also seen waves of protest and movements that encourage my heart, such as the campaign to "End The Word" (i.e. use of the "R word"), drawing attention to how hurtful it is to those living with a disability. The recent backlash against Ann Coulter's use of the R word in a tweet she posted referring to President Obama is a good example. Hopefully more and more people will speak out about the need to treat all people with respect.

November 1-7 is National Down Syndrome Awareness Week in Canada. I would encourage you to take the time to seek out information about Down Syndrome and educate yourself about this common, yet often misunderstood genetic condition. Better yet, if you know of someone with Down Syndrome, commit yourself to spending time with them, getting to know them.

Times have changed. Perhaps a new friend with Down Syndrome will bring some positive change in your own life as well.

World Down Syndrome Day

My daughter, Erin, on her 18th birthday.

Today (March 21) has been designated as World Down Syndrome Day. I think it's very cool how this date, 3/21, was chosen to represent and promote awareness of Down Syndrome. The medical term for Down Syndrome (that more accurately explains the cause of it) is "Trisomy 21", describing the condition in which a third piece of genetic material attaches itself to the 21st chromosome pair at conception. I have written elsewhere on this blog about how I feel the term "Down Syndrome", though more commonly and immediately understood than "Trisomy 21", also carries with it so much negative stereotype. So I am all for anything that helps to promote a more unprejudiced understanding of exactly what Trisomy 21 is. Celebrating it today is a good place to do that (and yes I said "celebrate", because that's what I do every time I think about how the presence of my oldest daughter in my life has made it so much better!). I love and celebrate the beauty of my daughter every day of the year. But if you are someone whose life hasn't been as personally touched by someone with Down Syndrome, or if you are willing to acknowledge you may have some misconceptions about it, I'm hoping that today, and in years to come, March 21 (3/21) will be a day that jogs your memory to think about, and be thankful for, how our world is a better place because of the people with Down Syndrome who are in it.

As a side note, when my daughter was born with Trisomy 21 over 18 years ago, I think there were a total of FOUR sites on the web that had information about Down Syndrome. Today, a simple google search on "Down Syndrome" returns over 22 million hits!! I am thankful for all the excellent information that is out there today about Down Syndrome, including the many positive testimonials and other personal stories from family and friends whose lives have been touched by a person with Down Syndrome.

If you haven't yet, please take the time today to learn a little more about Trisomy 21. There is a whole website dedicated to World Down Syndrome Awareness Day, and that would be a good place to start.

New Job, New Challenge, New Hopes

OK, so it's been ages since I posted to this blog. Last post was July 2, 2011. Since then, well, I've been both busy, and bedridden. Our family moved halfway across the country last July (back to the town I grew up in), and then, between some odd jobs, I was laid up with debilitating back pain for 2 months. But I am mobile again, and looking forward to starting a new job this Monday (January 16). I will be working as a job coach for Focus on Employment, an organization that does job training and placement for persons with disabilities. I'm looking forward to it.

For one thing, having a child with special needs myself, I have an affinity for the needs of those struggling with their own disabilities and the challenges of fitting into a community. I strongly believe that helping persons with disabilities find job opportunities within the community will not only benefit the person, but the community as a whole. This is a tangible way we, as a community, can say, "We are here for you; we support you." Persons with disabilities too often get left behind. They always have, and always will, need others to advocate for them. My new job will give me the opportunity to serve in that role.

The community I live in, and now work in, is not big. It's a small town. Focus on Employment is not a big organization here. Basically it is just me and my boss. And the pay isn't great. But I want to do this job because I care about it. Because I care about the people we serve. I want to make a difference in the community, and in the lives that cross my path, personally and professionally. It will be challenge to convince some potential employers why they should hire a person with an intellectual disability and pay them a full (albeit minimum) wage, when they can hire a non-disabled person for the same wage. But I am hoping I can help them see the benefits. I'm hoping I can be passionate about advocating for those with disabilities. Am I up to the task? I hope so, and believe so!!