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.

My Daughter, Now A Willing Blood "Donor"

One of the medical concerns that can accompany Down Syndrome is problems with the thyroid gland. In our daughter's case, early blood tests revealed a slight hypothyroidism, and so she is on a daily thyroid supplement. As part of continuing to monitor correct dosage, twice yearly blood tests were required. This is where things got really interesting.

Image courtesy m_bartosch / FreeDigitalPhotos.net

Like many people (and kids especially), our daughter did NOT like being poked with a needle to draw blood. I have so many memories of having to wrap her in a sort of make-shift body restraint, and even then, needing 1 or 2 additional nurses to keep her still enough in order to find the vein and get the blood. All the while, Erin screaming blue murder. I recall one particular incident when, after getting her back to the car, I noticed hundreds of tiny red dots on her skin around her neck and face, the micro blood vessels in her skin having ruptured from the intense straining she did in trying to escape the scary procedure.

Over the years she has gradually become more used to, and more co-operative with, the process of having a blood test. Progress in this came to it's ultimate culmination last week when I took her for a blood test at a local clinic/lab. After presenting the receptionist with her health card and requisition form, my daughter was instructed to go to the back room and have a seat in one of the chairs. I instinctively got up to walk back with her when a crazy idea entered my mind. I quickly asked Erin if she wanted me to come, or if she wanted to go by herself. She raised a hand to stop my advance and clearly said, "By myself."

I sat in the waiting room and listened to the nurse talk to Erin and walk her though a procedure she already knew all too well. A minute later Erin came out of the room with a small cotton ball taped to her arm, and wearing one of the biggest grins she's ever had. I was immensely proud of her. To think how far she has come; no more threatening, no more coaxing, no more restraining. My little girl has grown up and has faced one of her biggest fears head on, and come through with pride on the other side. This special girl never ceases to amaze me.