Tag Archives: Down Syndrome

January 11, 2012

The “R” Word… Part 2: Actions Speak Louder Than Words

By So Here's Us.... life on the raggedy edge.

I noticed her right away when we walked into the doctor’s office. She was a lady in white: white shoes, white tights, white skirt, white blouse, white hair and perched on top, a white nurse’s hat – the old fashioned kind I’d only ever seen in skimpy Halloween costumes. She was a piece of history come alive in our G.P.’s waiting room.

She rushed over when she noticed us, and peered into the car seat where baby B was studying her own fingers.

“What a sweet little mongoloid!”

When I finally managed to unhinge my jaw, I’m pretty sure I muttered something about Down Syndrome being the appropriate term. Did I hear her right? About 100 years ago the label “mongoloid idiot” was discarded along with leeches and flat earth theories. Could someone in this day and age actually be using the term?

But she did. Just as people in this day and age still use the term “retardation”. Including my parents and many of my relatives.

Are they ignorant? Clueless? Or even worse…gasp!.. not reading my blog? (The “R” Word Part 1)

Not at all! In fact, there were few things more forbidden growing up than using the word retard as a put down. “There really are retarded people” my Mom would say. And she would never allow us to disrespect them by misusing the term.

  • It is not the USE of the word retardation that is offensive, but the MISUSE.

It is actually a clinical term, meaning held back or delayed, hence the diagnosis mental retardation. My Aunt proudly displays a plaque on her wall celebrating her years of service to the Glendale Association for the Retarded. She is proud to have sat on the board of directors and feels no shame in referring to herself as retarded. Nor should she.

  • Language evolves over time.

Words are not static in their meaning, but change alongside culture. When my husband was growing up, the ‘D’ word in his house wasn’t the same as in mine. It was ‘dork’. To this day, he dares not call his brother the ‘D’ word in his Mom’s presence (naturally he waits ’till she turns around). She hears something the rest of us don’t. Perhaps it is her training as a marine biologist, but to her ears ‘dork’ clearly says “whale penis.”

Once upon a time, “idiot” and “moron” were appropriate medical terms; now they are names for tail-gaters and obtuse civil servants. They’ve become insults and nothing more.

Clearly, the term retardation is heading in the same direction. It no longer means what it used to, at least outside of a clinical setting. It is too wrapped up in social stigma.

  • So, we’ve created new terms.

Intellectual disability, developmental delay, mental handicap, differently-abled, cognitively-challenged, low incidence… Some are good, some are kind of silly, but the whole thing is REALLY confusing. I used to think it was political correctness gone mad. Until it was my kid they were talking about.

Now it seems important to find the right words to express, not who she is, but the struggles she faces. As a community of parents, professionals and self advocates, we need to get together and find a common language. It doesn’t matter so much which one we choose, we just need to get on with it.

  • Words are important, but ACTIONS and ATTITUDE are even more important!

Of course I think words are important. I’m a writer, it’s kind of my job. Plus, I totally kick ass at Scrabble.

But when we get bogged down by the nit-picky specifics of word usage, sometimes we miss the point. I’d like for people to use respectful language, but it’s most important that they actually respect my daughter. When push comes to shove, intent trumps nouns, verbs, and adverbs… every time.

That olden times nurse who offended me on our first meeting proceeded to shower B with attention. Each time we came for the next few years, she would drop everything to come and visit with her. She was amazed by her every accomplishment and was always telling B what a “smart, smart girl she is”.

I don’t see her anymore and I miss her. She loved B. She treated her with respect. She may not have said all the right things, but she took the time to get to know my daughter. And that’s what matters most.

So here’s me, differently-abled in many ways myself. I can curl my tongue and fold it over, but I can’t for the life of me wink.

What do you think? Which terms are you most comfortable using? Why?

1 Comment   |  tags: , , , , | posted in special needs

January 9, 2012

The “R” word

By So Here's Us.... life on the raggedy edge.

For Christmas Grandma gave B a boatload of Calico Critters for her dollhouse. They are so cute, with 14,000 tiny pieces: chairs, tables, a wood fireplace, plates, cups, even a little bar of soap. Apparently she should have included a jackhammer, because getting them out of the box was almost impossible.

“This packaging is so retarded!”

And I feel my stomach sink into my shoes. I can’t believe I just said that.

Rumor has it, I’m not perfect. But still, I should know better.

It is a habit, a pop culture reflex that most of us has picked up over the years. But of all people, I should know better.

There is a big push these days to ban the “r” word. Youtube videos, T.V. commercials and celebrity endorsements have made this a trendy topic to support. For me it’s personal.

In some circles it has become the true measure of evil. And although I’m certain that the torture and slaughter of small, woodland creatures factors in there somewhere, I get it. I really do.

“Don’t be a retard!”

“I am SO a retarded!”

“The instructions for my new Ikea shelf are retarded.”

I am not easily offended, but I cringe every time I hear it. It feels like a casual slap on the face. Even worse, on my daughter’s face.

To my husband, it is exactly the same as using her name as an insult. He is even harder to offend than I, but be warned: If you say this in his presence, you will get it!

“It” being a stoney silence and angry, angry thoughts. He is not a confrontational man.

My daughter works 10 times harder than the rest of us to communicate, to learn and to find new places to hide things (her nickname is the Destroyer). But she still has time to entertain, charm and amaze us every day. Not only is she fun and affectionate, but she has an iron will and refuses to be left behind. She deserves respect and admiration, not to be the punch line of a joke or a derogatory descriptor.

When I’ve finally worked up the courage to speak up about it, it is with great understanding. Okay, fine, it is with a passive aggressive move, like, say, writing a blog about it. I can certainly understand that it may slip out from time to time. As much as I may want to take offenders out back and “educate” them, instead I will simply say that it hurts me and my family, every time.

My daughter, and amazing men and women like her, are an inspiration, not an insult. So this is one habit I intend to crush with extreme prejudice. If I have to wash my own mouth out with soap… so be it.

So here’s me, wondering if my use of the word “doofus” is disrespectful to losers everywhere?

The “R” Word Part 2 is now up. I originally titled it: In Defense of the “R” Word, but my husband hated that. Confused? It all makes sense, I swear.

5 Comments   |  tags: , , , | posted in special needs

November 24, 2011

It’s a Worrisome Life! Pharmaceutical Error and My Little Girl

By So Here's Us.... life on the raggedy edge.

In one of my favourite movies of all time, there is a subplot about a drunk and distraught druggist who makes a dangerous error (say that 10 times really fast). Fortunately, the young shop boy steps in and saves everyone from what would have been a fatal mistake. This morning we discovered that our baby girl is the victim of a pharmaceutical error herself, not fatal, but potentially serious.

A rather common side effect of Down Syndrome is hypothyroidism – low thyroid. We’ve spent the past several years working with her pediatrician to keep her level JUST RIGHT. Too high and she gets hyper, jittery and is unable to grow. Too low and she is lethargic, listless and also, unable to grow. Left untreated, low thyroid can cause brain damage.

A few months ago we realized that B needed another dosage adjustment. When I went to pick up the prescription I was surprised that it read “take 1/2 a pill daily”. I had hoped that a higher dose would mean an end to fiddling with that stupid pill cutter. I asked about it – gutsy for someone like me, who prefers not to make waves. “Isn’t she supposed to take the whole pill?” But I was assured that this was the correct dosage.

Apparently, I’m no George Bailey. I didn’t question it. I mean, I trust these people. They wear white coats for Pete’s sake; if that doesn’t spell “trustworthy,” I don’t know what does.

These past few months have been difficult in our house and at school. B has not been herself. She’s been irritable, needy and unfocused. I wondered if it was the adjustment to a new school year. We’ve had numerous discussions with the resource and classroom teachers, daily strategy sessions with the S.E.A.’s (teaching assistants), and notes flying back and forth about what to do. I wondered if she was coming down with something. We’ve taken many sick days, even antibiotics at the height of her distress (though her ear was only slightly red). I wondered if we are just crappy, crappy parents. There’s a distressed e-mail to a behavioural interventionist in the draft box of my computer.

Two days ago our family doctor phoned with the results of our much dreaded blood test. Apparently, her thyroid levels are way too low. I was confused; we had just upped the meds, so if anything it should be slightly high… Then I remembered my unease at the drugstore counter.

Sure enough, we’ve been giving her half the required dosage. And our pediatrician was pissed. It is behind the lack of energy and focus, the irritability, the general malaise.

At that moment I went through what psychologists may call “rapid cycling” – many strong emotions in quick order:

Guilt: I should have caught this. I did catch this. Why didn’t I catch this? Self recrimination is my super power.

Relief: It could have been the leukemia my darkest fears were whispering about. And it could have been much, much worse. If we didn’t catch it in time, it may have done permanent damage.

Fear: What if it did do permanent damage? Will this set her back? Will she ever recover? She was learning to read, doing so well and now she can barely stand to look at a book with me.

Anger: I have a powerful urge to find that careless pharmacist and squish him like the worthless insect he is.

More guilt: Because that’s just how I roll.

Gratitude: This explains so much and it’s an easy fix – just a pill a day for a happier child! How often can you say that?

I should have trusted my instincts. I have said it before, our instincts as parents are not infallible, but they are a God-given gift. It doesn’t matter what expertise and professional training the wildly intelligent people we deal with have, when push comes to shove, I am the expert on my child. If something feels wrong, it probably is. One of the best things I ever did was find a doctor who respects that.

All behaviour is communication. Whether it is saying “I’m tired,” “I’m hungry,” “I’m overwhelmed,” or “I have a deficit in an important growth hormone”, kids who act out are trying to tell us something. When I can’t figure out what the naughty behaviour means, I tend to chalk it up to random, unspecified grumpiness. That’s not without merit; Lord knows, I experience enough of it in my own life. But it is important to check for a physical reason and even visit my doctor when the behaviour seems uncharacteristic and out of control.

So that’s the moral of the story for me. It’s been a hard lesson. From now on I will listen to my gut and to listen to my child.

So here’s me, rehearsing my lines for the showdown at the pharmacy. No, I won’t be crushing anyone like a bug, but there will be a strongly worded complaint form filled out… um… if it’s not too much trouble. Stupid Canadian politeness! Stupid intimidating white coats!

7 Comments   |  tags: , , , , , , , | posted in parenting, special needs

September 12, 2011

Capital ‘P’

By So Here's Us.... life on the raggedy edge.

I remember the moment you were born. It was so quiet – not a cry, not a gurgle, nothing… Your Dad tells me that it was only about 30 seconds before you started crying, but I had already started freaking out, “Is she okay?! Is she okay?! What’s wrong?” That little squall was one of the most beautiful sounds I’ve ever heard.

When they held you up for me to see I couldn’t believe how adorable you were. I fell even more in love with you. You looked like a little baby burrito and you had the sweetest little face (still do).

We spent the next 4 weeks sitting on uncomfortable stools while peering into the baby aquarium (aka: incubator), then holding you gingerly so as not to jar all the tubes and needles, taking turns driving to the hospital in the middle of the night to try to get you to eat, and finally bringing you home where you belonged. That whole time, while I was scarfing down cafeteria food and covertly skimming through your file, I was researching. While I shadowed the nurses and learned about everything in the special care nursery, I was researching. While I was playing milk cow and preparing tube feedings – still researching.

We were given a stack of books, brochures and web page print outs like you wouldn’t believe. And to be honest, they were helpful. They prepared us for the leukemia scare, the tests and medical procedures, explaining Down Syndrome to your sisters and a thousand other things. But they were filled with frightening statistics and scary possibilities.

You were already so precious to us, and the thought of you facing all those difficulties broke my heart. I wish I had known then what wonderful things lay ahead. I wish they had told me that.

I wish they had told me that you would love with abandon. That one of our biggest problems would be trying to get you to stop kissing EVERYONE. That you would melt the stoniest heart with your huge grin. That we would make friends everywhere we went, because you’re so cute and charming!

I wish they had told me that you would make us laugh everyday with the crazy things you do. That you would pray every single night for God to bless your “chocolate face”. That you would perform beside the TV whenever we watch “So You Think You Can Dance” – ballet, the samba, hip hop… you name it. That you would end each dance, song and occasional mealtime prayer with “Ta Da!”

I wish that they could have told me, along with all those intimidating statistics that there was a 100% chance of fun. That despite all the headaches and heartaches along the way, you would fill our life with pride and laughter and joy. I think this song from MY childhood says it best:

You are a promise.

You are a possibility.

You are a promise, with a Capital ‘P’.

You are a great, big bundle of POTENTIALITY!

So here’s to B, my pride and joy! Happy 7th Birthday!

10 Comments   |  tags: , , , | posted in parenting, special needs

August 12, 2011

Hmmm… think, think, think.

By So Here's Us.... life on the raggedy edge.

If you ask my youngest daughter a question, her answer will almost always be “NO”. It doesn’t matter what the topic is or even if you’ve asked a yes/no question. Do you want more? What’s your name? Do you want ice cream? Is Daddy right? (This is a very convenient way for me to recruit a supporter on whatever issue we happen to be discussing.)

Lately she’s upped the ante – now she prefers to shout “NO WAY!” It was cute… the first 300 times. Now, not so much. The problem isn’t stubborness (although she certainly is). The problem isn’t intelligence, as she is quite bright. The problem is slower cognitive processing.

If I were to ask you a question – it would take approximately 3 seconds for you to hear what I’ve said, process the meaning of it, formulate a response and signal the muscles in your body to respond appropriately. Some studies have shown that most people with Down Syndrome take about 45 seconds to do the same.

Now, on paper that doesn’t seem like much, but if you actually count it out – it is a socially unacceptable lag. In a world that moves so quickly, she is constantly bombarded with questions or requests. Not only does it take her longer to understand, but when she actually does respond often people can’t understand what she’s saying. So, the “NO WAY!” reflex was born.

A strategy we are using to try to counteract this habit is saying “Hmmmmmmm!” while tapping her finger on her mouth. It’s a thinking sound and hopefully communicates that she has heard what is asked, but needs some time to process it. We got the idea from our favourite bear with a potty nickname.

I don’t have this problem – in fact, I often speak without thinking. I’m pretty sure this habit of mine causes even more trouble than the “NO WAY!” reflex. I’ve decided that I need to use the “Hmmmmmm” method myself.

I often commit to doing things – without thinking. I express my frustration with my kids – without thinking. I vent whatever emotion I am feeling on my husband – without thinking. I make plans, I share information, I give permission, I jump into the gossip session… all without thinking.

One of my favorite ridiculously-obvious-statement-laced-with-deeper-meaning verses is this:

“But your yes is to be yes and your no, no.” (James 5:12)

In other words, say what you mean and mean what you say. Don’t open your mouth if you haven’t got something worthwhile to say. Even if you have to take an extra 45 seconds to hum about it.

So here’s me, learning to think, think, think.

3 Comments   |  tags: , , , , | posted in parenting, special needs