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.

Am I Special?

So, as a father of a child with special needs, a question soon becomes apparent to me; am I special? Before long, after Erin was born, I began to realize that some people referred to me, (or was it just in my head?), as "Erin's father". Real or perceived, it was real to me.

Having a child with special needs soon made me aware that I was, in some way, special myself. Maybe it was all the people that sought to comfort me in saying that "God never gives a special child to an unspecial parent." A nice sentiment, but is it true?

I would never have thought of myself as special. I am an ordinary man. A plain man. A jerk, in many ways. I am not aware, to my knowledge, that any of the people who know me, refer to me as special. Yet I cannot deny, that, having been singled out to be a parent of a child that has the odds of 1 in 900 of being born, that I am in some way, special.

So, having been given the gift of a child of special needs, I will, as they say, rise to the occasion. My perception of who I am has not changed. I simply try to be the best father I can be, to the child God has given me. How can I not love her? How can I not seek to give her the best life she can have?

This is my calling, and in that, I guess, I am special.

A Little Background...

I know that many who are reading this blog will have known me and my parenting journey for some time, but I thought I would share a little of my personal background story for those that are new.

My wife and I were married in 1986 (yes, we recently celebrated our 25th wedding anniversary!) and after a few years of planned childless marriage, we began to try to start a family. After struggling with infertility for several years, we were overjoyed to learn in 1993 that we were expecting our first child.

About 24 weeks into the pregnancy however, a routine ultrasound revealed a serious abnormality - there was virtually no amniotic fluid in the womb. My wife was immediately followed up with daily prenatal assessments. As part of that process, a cordocentesis was done to see if there was an in utero virus responsible for the pregnancy complication. With that blood sample, they did a routine chromosome test, which told us that our unborn child had Down Syndrome.

Though this news devastated our hopes of having a "normal" child, we nonetheless continued to pray that God would save the life of our unborn child, and deliver her into our arms safely. And that's when, God began to do a miracle. Whereas up to that point the fetal assessments showed that she was dying in the womb, her status in follow-up assessments began to show a dramatic improvement.

In the end, Erin was born at full term, and besides having low birth weight, did not have any of the health problems the doctors predicted she could have based on the earlier pregnancy abnormalities.

Our experience with our daughter's gestation and birth taught us that we tend to put implicate faith in the medical profession. After we were given the news of our daughter's pre-birth diagnosis, we realized later that we had begun to grieve her loss. But as we began to hope again for whatever God had planned for her, and after she showed how she defied all odds against her survival, we understood that doctors have their limits of knowledge as well, and that each and every life is in God's hands.

In those weeks before Erin was born, and in the weeks, months and years following, our understanding of what is "normal", healthy, and beautiful, changed drastically. I will leave it to subsequent posts to share how Erin's entrance into our lives changed us, very much for the better. We continue to thank God for answering our prayers over 17 years ago, by giving us this special gift.

People First Language

One of the things that I became aware of early on in having a child with Down Syndrome is the need to emphasize, or encourage using, what is called "people first" language.

Before my daughter was born, I'm sure I was often guilty of not using people first language when talking about others with disabilities. I still hear people say things like, "Look at that Downs girl.", or "There's an autistic boy in my class at school." Phrasing things this way communicates that it is the disability that is seen first, and that their disability is the main thing that defines them as a person. But we don't do this with others. We don't refer to someone as a "diabetic employee", or a "cancerous patient".

I want people to know that my daughter is first and foremost a human being. She is a daughter, a sister, a friend. She is more like her siblings, who don't have Down Syndrome, in many ways than she is like other kids that do have Down Syndrome. That one extra chromosome may affect her whole being, but the other 46 still have the lion's share in determining who she is as a person.

So, when I can, I encourage people to phrase things like, "that girl who has Down Syndrome", or "the boy in my class who has autism". It's seeing the person first, the disability second. And I think that small difference in wording has a profound impact on our attitudes, and how we will ultimately see, and treat, those around us.

Special Olympics

Yesterday our daughter, Erin, participated in the annual Special Olympics for high school students here in London. This was an exciting day for her. Her events were the 80 meter sprint, long jump, high jump, shot put, and softball throw. The high school she attends had volunteer peer coaches, two for each participant. We were thankful for cool, overcast weather (a little too cool at times), making it easier for the athletes. Although Erin didn't place in the top 3 in any of her events, she had a great day nonetheless, living out the Special Olympics creed, "Please let me win, but if I can not, let me be brave in the attempt."

The class and helpers from Oakridge Secondary School

Erin with her peer coaches

In the long jump

Softball throw

With her teacher, Andrew M.

What To Call It

After my introductory post, including an explanation of why I chose the blog title, it may seem inconsistent for me to admit that I have never really liked the term "Down Syndrome", or its abbreviated form, "Downs". Besides the fact that the word "syndrome" typically conveys something mysterious, unnatural, even sinister, I have in fact always cringed at the term "Down", which by its own expression communicates mental images of "lesser", "lower", "sub-standard", or "inferior". Thus, to me, the coupling of these two words to describe a condition my daughter was conceived and born with gives a one-two punch in the labelling department. I have at times heard people use the phrase, "What's the matter with you? Are you Downs?!" as a derogatory put down. Yes, down. There it is again.

A Bit of History

John Langdon Down

OK, pop quiz: How many of you, without having googled it, knew that the "Down" in Down Syndrome is attributed to the name of the British physician, John Langdon Down, who, in 1866, first officially diagnosed and characterized the symptoms of the condition? Be honest. So, here we have the condition, quite reasonably, named after the doctor that first did an organized study of it. I can see that. I shouldn't be upset or blame Johnny that his last name was Down. That's not his fault. But again, I have to be honest that I just have not been comfortable with the label, as to me it conveys something negative. But do I have anything to suggest as an alternative? Well, yes. Read on....

Jérôme Lejeune
Copyright 2009 – Imagine Foundation
All rights reserved

Staying along historical lines, let's fast forward 93 years from the time dear Mr. Down first described the condition two Centuries ago.

In 1959, the scientific discovery was made by one Jérôme Lejeune, that the condition identified and referred to as Down Syndrome since 1866, was in fact caused by a mutation in which an extra piece of genetic material attached itself at conception to the 21st pair of chromosomes, thus giving it the more medically accurate description of Trisomy 21.

Now, I learned all this even before my daughter was born. Having been given the news during the pregnancy (as a result of unrelated testing) of this abnormality that would effect her whole being, I spent the time awaiting her arrival into the world by reading as much about Down Syndrome as I could. And so from early on I secretly began to wonder if I could somehow challenge the world's common acceptance and usage of the label "Down Syndrome", exchanging it for the more technically accurate, (and perhaps more socially acceptable term - at least in my mind), Trisomy 21. Over the years I frequently had intentions of introducing my daughter to strangers saying, "This is Erin. She has Trisomy 21.", and failing the registering of any expression on their faces, I would go on to explain what I've just shared with you. More often than not, however, I just came right out and said, "She has Down Syndrome". It was quicker, easier, and they knew immediately what that meant. At least I hoped they did.

There is one other way that was common for people of generations past to refer to people born with Trisomy 21. I will not repeat the full "M" word here, out of respect for the ethnic race it sought to draw the comparison with, and with hopes that this word's usage will die out forever. I can only hope that the "R" word will soon follow suit. In my experience, there seems to be a disproportionate number of Americans over Canadians (or other countries in the world) that tend to throw this word out quite freely, sometimes disparagingly, sometimes in jest (I'm not picking on Americans; just making the observation). I would hope, however, that whoever uses that word, in whatever context, that they would know what an emotionally loaded word that is, and how it can really cut and hurt.

So, what to call it? I can can think of a few phrases that I believe it should never be called, one that I would prefer it to be called, and one that is most popular both within family circles of people with DS, and those without. Just remember that labels have meaning, and those meanings can either harm, or help.

(Stay tuned for an upcoming post about "people-first" language.)

Welcome...

So, I've just started a blog on a topic that I've been living for the past 17 plus years - raising a child and experiencing life with a daughter who has Down Syndrome. Although I've posted items about this topic over the years in other forums (my Taiwan Life blog, Facebook, etc.), I felt I wanted to post in a more focused way about my thoughts, experiences, and feelings about having a child with DS. I will also try to highlight a broad range of topics related to Down Syndrome, sharing third party resources or articles I find of interest. My goal is to educate, challenge, and generally open my heart on the matter. Every post will in some way be related to Down Syndrome, or raising an exceptional child.

As for the title of my blog, "The Deal With Downs", it has a double meaning for me. Dictionary definitions of the word "deal" include, 1) managing, coping, or taking measures regarding something, 2) distributing something to someone, or including them in something (i.e. "deal them in"), and so I could say, when it comes to Down Syndrome (or "Downs", as many say), we deal with the hand we were dealt. (Too corny?)

I've said it before, and I'll say it again, Down Syndrome is something most people have heard of, but unless their lives have been touched by it in some way, they often know little about it. If I can change that in some way through this blog, I'll be happy.

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