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!!

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.

Isolation

Image courtesy jscreationzs / FreeDigitalPhotos.net

One thing parents who don't have a child with special needs don't realize is how isolating having one can be.

What I mean to say is, when you have a child that requires special attention, it can impact your social life very dramatically, to the point that you become isolated beyond what is normally experienced in typical child raising. Let me explain...

When our daughter was an infant, she was in most ways, just like any other infant. We fed her, changed her diaper, held her to comfort and sooth her... things that any parent does with their new baby.

But when our little girl reached the age of around 3, she did not gain the independence that kids without an intellectual disability typically do. Well, she did, physically, but she didn't have the common sense that usually keeps pace with the physical growth and development.

She often would run off in every direction, without the sense to realize that there may be dangers that come along with the decision to abandon parental supervision and safety. Again, "normal" children do this as well, but for a child with an intellectual disability, it seems the frequency and stress of this kind of thing is intensified. (As an aside, we used to joke that the "wandering" gene must be located on the 21st pair of chromosomes, and since in a person with Trisomy 21 this gene is over-expressed, the inclination for our child with Down Syndrome to wander was in full gear, all the time. But I digress…)

What my wife and I really found difficult was the extra supervision our daughter required, even up until age 10 (she wasn't completely potty trained till age 8!). This meant we were often excluded from the social situations typically enjoyed by our peers. A group of neighbours would get together for a barbecue and all be sitting around enjoying a beer and we'd get only a snippet of the conversation before we had to run off to keep our daughter from running down the street. Or we'd be trying to visit with friends after church on a Sunday, but could never really engage with others as we constantly wondered, "Where's Erin? What is she getting into? Who has her?"

Part of our grief as parents of a child with special needs, was that, longer than is typical for most parents, we experienced an "isolating effect". This was also marked by the fact that as the children of our peers aged, our daughter was less often invited, or able, to be a part of the activities commonly engaged in by young kids (riding a bike, sports, etc.).

So, I would encourage people, if you know of someone who has a child with special needs, consider how isolating the challenges of raising such a child can be, and make an extra effort to include them in any way you can with the things you enjoy, and perhaps take for granted.

That Time of Year Again

June is a wonderful time of year, due much in part to the graduations and other measures of accomplishment that happen for school students. Over the years, this time of year has typically aroused feelings of grief and sadness for me (read on). The post (after the jump) is actually a reprint from a post I made on my other blog 3 years ago (to the day, I just realized). So, again, I share a little of what my heart feels at these times.

Disciplining a Child With Down Syndrome

One of the issues my wife and I really struggled with in raising our daughter was in the area of discipline. Disciplining a child without an intellectual disability can challenge and exasperate any parent at times. Throw in the "DS factor", and you have a real challenge on your hands.

The question I kept asking myself over and over again, was, "is she getting it?" That is, does she understand what she is being disciplined for? With a "normal" child, you have a reasonably good chance that the kid will pick up on why he/she is being scolded, or punished for an unwanted action. But with a child with a mental delay, I always wondered, and second guessed myself, whether my child was putting two and two together. And so I was never really sure my disciplining efforts were, 1) called for, and 2) effective.

I remember a time when we were visiting my parents, and the subject of discipline came up. I recall my mom making the comment that my dad (AKA Grandpa), in observing how we disciplined our little girl, felt that we were entirely too harsh on her. I would have felt bad about this observation, except for the fact that my mom (AKA Grandma), entirely agreed with us, and felt that our measure of discipline was very much appropriate.

After 17 years, we look back on the whole adventure and think, our discipline was probably just about right. Our daughter has learned what is acceptable behaviour, and what is not. She has learned that she is safe and secure in our love, but also has a keen awareness of what will bring a scolding look or a corrective word when she is out of line. She is well behaved 95% of the time, which is more than I can say for her 2 siblings. We still work on them. But then again, they don't have the years of experience their sister has.