Tag Archives: Down Syndrome

January 10, 2013

Mommy’s Superpower

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

hero signThe ability to fly.

That’s my answer. To that classic nerd conversation starter: If you could have any superpower, what would it be?

Invisibility? Super Speed? Visions of the Future?

I can see how each one would enhance my parenting. Invisible Mom knows exactly who started it, and her children would be motivated to behave even when they are “alone.” Super Speed Homemaker gets more done in a few minutes than the rest of us in an entire day, and still has time to watch her favourite Food Network show. Psychic Mama can prevent the tantrum/fight/locking-keys-in-the-van/decorating-the-walls-with-sharpies BEFORE it even happens.

Sadly, none of these are my actual superpower.

That’s right. I have a special strength that allows me to perform beyond normal human parameters. It empowers the whole household to run smoothly (okay, smooth-er). It helps me endure when my strength is almost gone. It carries the weight of our whole family without breaking a sweat.

Routine is my superpower.

It’s not the sexiest, most exciting one out there. And it doesn’t require a cape or comic book inspired costume (though I’m not ruling that out). But I promise you, it packs a wallop!

I brush my teeth every morning. I don’t think about it. I don’t have to plan. I simply do the same thing, at the same time, every day. My lack of morning breath and significantly fewer cavities may not count as “saving a damsel in distress,” but a similar process also allows me to take daily medication and feed my children and keep my house (relatively) tidy and get our crazy family out the door each day. All these add up to a pretty heroic feat.

No matter what your age or stage or particular brand of dysfunction, you too can harness the power of routine! If you happen to have children, it can be a lifesaver. If you happen to have children with special needs, it’s an absolute necessity. Here’s why:

Routine frees up valuable time and energy.

Remember science class when you learned about levers and fulcrums and how they allow you to lift a heavy load with less effort? Routine is like that. As you shift behaviour from “intentional” into “something we do without even thinking about it,” you are able to do more, with less effort.

Get out the door in the morning. Keep the household mess from coming to life and eating us whole. Make bedtime and sleep time mean the same thing (we’re getting there).

I don’t know about you, but I need all the time and energy I can get my hands on. Trying to remember every little thing that needs doing, reacting to behavioural problems, and doing everything myself gets exhausting. Routines simplify life, prevent problems and empower children (and spouses, let’s be honest) to keep things going.

Routine makes life feel safe.

Secure children (and adults, FYI) know what to expect from their world. The stress of wondering what will happen next, and if I will-like-it/be-able-to-handle-it/am-entitled-to-watch-more-tv-right-now-instead, makes for grumpier children and parents. All children, even young toddlers, flourish when they can predict a first/then schedule and simple cause/effect.

For instance, when you get home from school you must sit on the potty, THEN you can have a snack. First comes pajamas, THEN music, rocking, cuddle and finally bed. If you throw your plate on the floor, THEN you lose it. If you do a cute dance and smile really big, THEN you get attention. If you do all your chores without complaining, THEN you can go out and play. If you do all the dishes and clean the kitchen, THEN your wife will be much more likely to give you a massage.

We’ve used pictures and symbols to reinforce routines with our children. B had a long strip of velcro on the wall; she had a picture of each morning task stuck up there (thank you Boardmaker software and Aunt Emily), and each time she finished a task she would put it in the “Finished” box at the bottom. We put new ones up for the afternoon and then a batch for before bed. She no longer needs such a detailed routine aid, but at the time, it gave her the sense of control she needed and made necessary transitions productive and less like a scene from the WWE.

Routine is inevitable.

Systems and structure aren’t everyone’s cup of tea. There are some weirdos people who prefer to wing it, to live reactively spontaneously. That may work for you in most areas, but everyone has some routines, whether we choose to or not. The unintentional, destructive ones often go by the name: bad habits.

I have just as many negative routines as positive. Sleeping until the last possible second, even though I know it’ll make our whole day much more rushed. The fight with C about proper outerwear on every rainy/cold/day-that-ends-in-y day. Eating a snack before bedtime, so it will be converted directly into fat. There is a dark side to every superpower: we are our own arch enemies.

The best way to conquer bad habits is to replace them. If you can figure out a positive routine which will supplant the destructive one, you are halfway there (you’ll have to read an article about willpower somewhere else, since it is NOT my superpower).

Routine is a servant, not a master.

This is where routine can get a bad rap. Especially from people who either a) don’t understand it or b) have an unnatural fear of change. When you are learning to cook you need to follow the recipe closely, but once you get the hang of it you can be creative, change things up, all while staying true to the spirit of the dish. In the same way, routines are not set in stone. Once they are established, they can be stretched, tweaked, negotiated and even temporarily suspended until they work for you.

Routines are a tool, not a destination. Make a plan. Try it out. Give it time to sink in. If it doesn’t make life easier, scrap it and start again.

So here’s me, saving the world one chore chart at a time!

2 comments   |  tags: , , , , , , | posted in parenting, special needs

November 27, 2012

Just Like Everybody Else

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

“Just like everybody else,” they say. It’s a battle cry and finish line and gold standard all rolled into one. The underlying assumption is that anything else is wrong: a shameful defeat.

It’s easy to get sucked in. To begin to measure my parenting not by how kind, cooperative, creative or unique my child is, but by how much they conform to their age-mates. Especially if they happen to have special needs.

Inclusion has become a religion these days. As if sitting in a room full of typical children the exact same age, following the same curriculum, with as few adjustments as possible, is the measure of a good education. I’ve met both educators and parents so enamoured with the concept that they refuse to accept the limitations of the philosophy.

Fortunately, the staff at our school have a different goal in mind: what works. What works for B. What works for our family. What works for the staff and the other children in her class.

Grade 3 has been a struggle. And when our favourite SEA (special education assistant) left, it was even worse. Her classmates love her, like a cute little mascot. They pat her head and give her hugs and try to carry her around. In a bid for attention (and out of boredom), she caused all sorts of disruption: talking out of turn, pulling her shirt over her head, poking friends and throwing herself on the ground in a tantrum until she had to be removed. Her only real learning this year took place in the back corner of the room with her SEA and the school iPad. It just wasn’t working.

Along the way, they discovered that she fit seamlessly into the kindergarten class. I’m sure it was out of frustration that she began to spend more and more time there. In this class she is doing the same work as the other kids. She can keep up and even excel in some subjects. She has meaningful conversations with her playmates. She can participate in their play (as more than just a prop). She requires little support to get through the day. This class is developmentally appropriate for her and we want her to stay.

It works for everyone, except the school district, which is reluctant to step outside the traditional inclusion model. They have given grudging allowance as long as she still connects with her Grade 3 class regularly and is officially on that attendance roll. Apparently what matters to them is not what she needs, but how many birthdays she has under her belt. Inclusion trumps everything else.

I want the same thing for B that I want for all my kids. A happy, safe childhood and the development of meaningful life skills along the way. In Kindergarten she is included, she is learning and she is happy, what does it matter what grade? Kindergarten is where she needs to be right now. I am endlessly grateful for a resource teacher and staff who are willing to fight for that.

My daughter is not just like everybody else. It is both her struggle and her strength. It will not help her to deny or obscure or try to avoid this. I operate here in reality, because I am not afraid that she is less. I am absolutely sure of her worth.

I’m not going to pretend that Down Syndrome is a blessing we eagerly embrace. I’ve met some who feel this way and I just don’t get that. “What God intended,” they say, as if cognitive disability and health problems and speech delays and lifelong struggle are comparable to height or hair colour. The world is full of sickness and disease and disorder. That God allows it does not make it a good thing. It is what it is.

My daughter is not remarkable BECAUSE of Down Syndrome. She is remarkable because of HER. The sweet, determined, spunky firecracker that shines brighter because she has to.

So here’s me, seeing the value of inclusion, but only when it helps. Because, there is no shame in being different.

How has being different served you well in your own life?

5 comments   |  tags: , , , , | posted in special needs, Uncategorized

November 2, 2012

Friday Favourites 35

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

Life has been steadily improving. Despite a lingering cough we’ve overcome the worst of the flu and are eagerly (and by eagerly, I mean with denial, bargaining and depression) awaiting our flu shots next week.

Halloween was a success. The boy could NOT understand why we wouldn’t let him go INTO the houses we were visiting. He held onto the doorframe and tried to angle his foot in the door, then screamed when I pulled him away. By house #3 we gave up. But Grandma made him the most amazing crab costume, so he looked adorable. Like I said, success.

The girls collected more candy than any one person/family/small nation need consume and we are quietly smuggling buckets of it to Glen’s work. They are allowed to keep whatever fits in a large ziploc. I keep whatever I can stuff into my mouth when they are not looking. Everyone wins.

Hurricane Sandy Photo

You never know what to believe these days. It seems like most of the photos floating around the internet from Hurricane Sandy were photoshopped or of another time or place. But I think this is my very favourite one:

A close runner up is this REAL photo of my family waiting out the storm in Boston. My Dad and Brother-in-law had to put my one-year-old nephew in the playpen, so he wouldn’t mess up their toys. Boys!

Awareness Week

When we brought our daughter home from the hospital and word spread around that she had Down Syndrome people were very supportive. I remember thinking: what a great day and age to be born in, when so many people understand and accept this syndrome. Then my neighbour brought over a plate of muffins, patted my hand and told me she was “sure she’d outgrow it.”

Turns out, there are a lot of people out there who don’t know much about Down Syndrome or what it means in the lives of those who have it. I saw this video a few years ago and I loved it. Despite all the challenges my daughter will face, she has a bright future. Because we’re more alike than different!

Here in Canada it is National Down Syndrome Awareness Week. Now you know.

Way to Build a Family

As you all know, we adopted a child locally from foster care. It is not the easiest route to adoption (though probably the cheapest), and we are huge supporters of it. Reece’s Rainbow works to put children with Down Syndrome in families who will love them forever.

Christmas Gift Idea

I don’t usually sell things on this blog. But for this I will make an exception. It’s one thing I never knew I always wanted. Until now. Maybe it’s because I’m a writer, but I’m a sucker for anything with meaningful words. Not only is it a beautiful bracelet, but it ALSO raises money for Spectrum Mothers Support Society.

This organisation is VERY near and dear to us. It was founded by Sally, the Foster Mom who has held our hand and won our hearts as we walked through adoption. She is the real deal, not only helping children, but Moms too. She and her team help and encourage young mothers, single moms, women in crisis and the like, in hundreds of practical ways. “Shining light into the lives of mothers when they need it most.”

The bracelet is made by her sister (Naturally Heartfelt) and on sale at etsy here.

Quote

“All men dream, but not equally. Those who dream by night in the dusty recesses of their minds, wake in the day to find that it was vanity; but the dreamers of the day are dangerous men, for they may act on their dreams with open eyes, to make them possible.

~ T. E. Lawrence

So here’s me, and my heart has a thousand dreams. One of them involves halloween candy that helps me LOSE weight. I’ll put it in the “unlikely” pile.

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November 1, 2012

Little Boxes

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

Little boxes on the hillside,

little boxes made of ticky tacky,

little boxes on the hillside,

little boxes all the same…

And the people in the houses

went to the university

where they were put in boxes

and they came out all the same…

My life is filled with boxes. Boxes of toys and clothes and diapers and household products from Costco. Boxes of time in Microsoft Outlook, colour coded for each child with overlapping commitments. Boxes to check for another damn assessment.

The boxes keep us together. They bring order out of chaos. They are manageable. They are safe.

There are some boxes, not constructed with cardboard or computer code or even pencil strokes, which order our life as well. Boxes full of 8-year-olds who sit in their desk all day and listen to their teacher and keep their hands to themselves. Boxes of children who climb stairs one foot at a time and ride bikes and jump rope. Boxes of car keys and university applications and grandchildren.

It is everything we expect from life.

Then it happens. A child who simply won’t fit into our comfortable boxes. She is fun and interesting and determined and charming and challenging and not at all box-friendly.

So we try to construct new boxes for her. New expectations. We read books and go to workshops and join support groups. Special boxes, diagnostic boxes, supportive boxes, therapeutic boxes… all very good boxes.

It’s hard work tracking down, even building from scratch, so many different boxes. While the rest of the world takes their pre-fabricated, standard boxes for granted.

Then it happens again. And again. And again. She refuses to stay in the box. She is unpredictable and sweet and moody and unique and not at all box-friendly.

In a world full of boxes, she stands out.

And the world can’t help but take notice and smile.

Boxes are kind of boring after all.

So here’s me, celebrating all the Outside-the-Box beauty Down Syndrome brings to my life. This week is National Down Syndrome Awareness Week (Nov 1-7).

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August 17, 2012

Friday Favourites 27

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

There is a lot to celebrate at our house! The smallest girl has managed to keep her panties on and clean for one day; not today, but it happened. So we have hope that it will happen again someday. If only that were how all of us measured success; wouldn’t life be happier? Clean underwear for the win, and everything else is icing.

The big girls are each having their birthday parties this weekend. At first glance this seems masochistic, but it means we only decorate once AND the leftovers from the first party are served at the next, so it’s actually kind of brilliant (and exhausting).

The man of the house just turned almost 40. Okay, 37, but since he reminds me often that our lives are nearly half over, I round up. What? He started it.

But the real party is for the boy. All because he now has many new vocational options open to him, such as: piano tuner, safe cracker and music critic. It’s not that these are our lifelong ambitions for him (although, now Glen is hankering after unlimited back stage passes); the thing is, we simply want him to have every opportunity.

When we adopted S it was with the understanding that his hearing loss (moderate-mild) was quite likely permanent. He has many risk factors for sensorineural hearing loss. One of the reasons the social worker first looked at our profile was our experience using sign language and dealing with a significant speech delay. We were prepared for it. I had the ASL app loaded on my iPhone and we had bounced around a few ideas for adjusting our life to compensate. We would be fine.

BUT they put tubes in his ears shortly before we brought him home. And there was a lot of fluid. And we had hope that this would help and maybe even clear it up altogether.

AND IT DID! On Tuesday afternoon we squeezed into a claustraphobic audiology booth at children’s hospital and he tested “Normal.” Gold Stars all around!

Quote

“Music is perpetual, and only the hearing is intermittent.”
~Henry David Thoreau

App

Most of the time iPhone/Pod/Pad apps lead to solitary play. It’s a treat to find one that not only encourages family interaction, but teaches proper grammatical terms. It takes a team effort to create silly stories with this app. Not only does Mad Libs have us all talking and laughing, but we clarified adjective vs adverb and discussed the meaning of “plural”… in the summer… for fun. You’re welcome, future English teachers.

Video

Julie Tennant is incredibly wise. And she loves her life. And she has Down Syndrome. And I kinda love her.

“I’d rather be slow to learn, than slow to love.”

Religious Joke

My fellow Christians, one of the best things about us is the ability to laugh at our own cheesiness. Those who can’t usually fall into the Pharisee camp. Or they’re just really dull. Or they actually do think it’s funny, but are too full of fear/guilt/angst-masquerading-as-reverance to show it.

The penultimate example of Christian cheesiness – Footprints in the Sand poem. That’s not to say it isn’t profound. And meaningful. And true. But oh, so very overdone.

Dorky Joke

Yes, this is my favourite kind of joke. This one was on George Takei’s FaceBook page… not always appropriate, but ever so funny.

Thank you http://i.imgur.com/4wwhM.jpg

So here’s me, with two, count them, two birthday parties this weekend. One is a spa-themed slumber party for 12 year olds. The other involves a kiddie pool full of jello, volleyball with a fish and hamburger shaped cupcakes. At least one of my children is normal.

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August 15, 2012

The Underwear Crisis

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

She’s captain of her own destiny. Rebel with a cause. Trendsetter?

She’s the kid running around our house with a bare naked bum.

But the oppressive forces of conformity (a.k.a. Mom) continue to insist that wearing panties is NOT optional. Pants, skirts and dresses are also strongly encouraged.

Before I alienate all the nudists who may someday read this blog post, let me clarify that nakedness is not the real issue. In fact, naked is an improvement!

My soon-to-be 8-year-old is deeply committed to pull-ups and diapers. Our keenly tuned parenting instincts tell us that these are not really the “thing-to-wear” to grade 3.

Of course, we are not completely freaking out; as parents of a special needs child we know that developmental timetables are for other people. Sure, we try for socially appropriate, but we accept her where she’s at.

BUT she is fully capable of keeping her beloved pull-up dry ALL DAY (especially when chocolate is provided as rewards). She has low muscle tone and this has only been possible in the last year. We must diligently remind (cough*force*cough) her to “try” several times a day. BUT after 5 long years of potty training, IT IS POSSIBLE.

The last time we made a concerted panty effort, it was a massive failure. She would sit on the toilet for long stretches at a time: reading, singing, talking to herself… but the minute I pulled on those panties she would pee like a race horse. The triumphant smirk on her face did not endear her to me at the time. We tried to wait it out, for several days, but apparently she has a much better tolerance for puddles of urine than we do. So back to pull-ups we went, and immediately she was dry the whole day. At the time I proclaimed that she could wear pull ups to High School for all I cared (this is the time we refer to as “potty training burn out”).

I have no doubt she can easily slay this dragon if she simply decides SHE wants to. So a very special reward has been promised for the day she keeps panties dry ALL DAY LONG.

But before we can reach this triumphant day, we must conquer Step 1: put panties on.

It seems so simple. We have a range of colours and styles to choose from. We have padded training panties. We have Hello Kitty panties. We have butterfly panties. We EVEN have Disney Princess panties!

Attempting to harness the power of peer pressure, we celebrate the universality of underwear. Mommy wears panties, L wears panties, C wears panties, EVEN Daddy wears panties. Manly, manly panties to be sure, but as far as B is concerned, EVERYONE wears panties. If we’ve ever met you, chances are we have assured B that you also wear panties. Ginny wears panties, Lenny wears panties, Olivia wears panties… The neighbour who just waved to you – panties. That man who delivered our morning paper – panties.

I can understand where she’s coming from. Wearing panties seems risky and potentially messy. What if she has to go right in the middle of a fascinating playtime? What if she decides that the toilet downstairs looks/smells/vibes slightly wrong at that crucial moment? Despite the many upsides of panty wearing, she prefers the familiar and the easy. I can relate.

As understanding as I am, this IS happening. I have written it and thus it shall BE.

Let the screaming and wailing and body-slumping-over-like-a-corpse begin. And each pair of panties which are removed and shoved into a kitchen cupboard/under-the-bed/behind-the-dresser shall be retrieved and PUT BACK ON. And baby brother’s diapers shall be moved to a higher shelf so she will stop trying to put them on. And I shall not be moved when she tells me she is “so, so sad” (okay, fine, I was moved, but I sucked it up and put on my no-nonsense face).

And each time she pees in the toilet we will beam with pride and praise her effusively and feed her a chocolate (and one for mom too, because this has been a tough morning).

So here’s me, wearing MY big girl panties.

By the end of today we had 3 accidents, but twice as many successes. The underwear tyrants shall prevail! Hoo-rah.

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

May 3, 2012

You Can’t Make Me, But I Might Be Persuaded

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

I made a critical parenting error several years ago. I let the hairdresser talk me into restraining B on my lap while she tried to cut her hair. Hmmm… a sharp pair of scissors + screaming, thrashing child = all kinds of stupid. Leaving with one side quite a bit shorter than the other was the best case scenario.

In retrospect, I’m sure the big chair, strange women in smocks and tray of tools on the shelf reminded her of the lab. A frequent flier in the blood test game, she was already pre-disposed to hate doctors, dentists and white leather recliners. Unfortunately, this experience added “Hair Cuts” to the list of things to despise. Her reaction from that day forward involved kicking, screaming and wedging her body in the doorway of every hair salon we tried to take her to.

The next few years, we trimmed as best we could at home. A full hair cut could take weeks to finish – a snip here and a snip there, trying to even it out as quickly as possible, before the crying and head thrashing began. Sitting up with a snack, in the bath… I even found myself sneaking into her bedroom at night with a pair of scissors (yes, after typing that out, I realize how creepy it sounds).

Finally, my hairdresser (and friend) Rhianna came to our rescue. We slowly introduced her to the idea. At first she simply came and watched me get my hair done. Then, watching her sisters and sitting in the chair. Once she sat up and had a clip put in her hair. Each visit ended on a positive note; that was the key. At the first sign of trouble, Rhianna backed off. It was a good experience.

We didn’t push her and one magical day, she sat up and had her bangs trimmed quite happily. And then the next time, the whole enchilada! All that attention from the ladies in the salon and, later, from everyone who appreciates her funky pixie “do” have done wonders. In the space of a year, she became not only cooperative, but THRILLED to get her hair cut.

Until today.

She was singing in the car, SO excited to see Miss Rhianna and telling me how “pitty” her haircut would be. But we hit a speed bump along the way. For some reason, though she has done it several times before, she decided she was NOT going to get her hair washed.

I told her that she had to get her hair washed (or even wet down) so that it could be cut. I made it very clear. She was unwilling to budge. I had chosen my battle.

I’m not opposed to the occasional change of mind as a parent, but I was sure we could get this done. I dug deep into my rather large arsenal of parental manipulation. Every lady in the place (including the one with foils in her hair) offered a suggestion, or 10. We tried it all.

I let her choose – which chair do you want to sit in? which shampoo? who do you want to do the washing? I gave her control – climb up yourself, tell me when you are ready, you hold the shampoo. I set the example – close watching while both sisters had their hair washed, then I stuck my own hair in the sink and even got it wet (I straightened my hair today, so this is one of the greatest examples of maternal love in the modern world). I talked it through – reason, logic, persuasion, outright begging. I offered bribes – chocolate granola bars, a new clip for her hair; I literally held a lollipop over her head to get her to put it back. Rhianna made it a game – lots of counting, tickling, fun things to look at. I played it cool – “it’s up to you, wash and cut or we can just go home,” then tried to look bored and unconcerned. I tried to make it happen – picked her up, put her in the chair and held her head back (for about 2 seconds when she started freaking). I let it go - “okay, let’s go home;” then she would call me back and get close, so very close to actual H2O, and it would all start again.

“I dunno. I dunno. I DON’T KNOW!” – her answer to every other question.

The other answer, her favourite word – “nnnnnnnoooooooo! NOOOOOOOOO! nnnnnnooooo!”

She didn’t want to get her hair wet, but she wanted to get her hair cut so badly.

If we hadn’t come so very close, so many times, I would have given up much sooner. As it was, she left with a wet shirt, 3 clumps of damp hair and a grumpy, grumpy mom. Only B can take 2 hours to NOT get a haircut.

All this on the same day as our IEP meeting with her teachers, where we discussed her recent bathroom strike. After months of staying dry, she now refuses to even try on a regular basis. At home, the bathroom is going well, but tooth brushing has become an epic battle of wills (and ultimately a headlock and quick swish, swish… since dental hygeine is not remotely optional). This is our life.

I try to remember that determination (a much nicer way to say stubborn) can be a strength for a child with special needs. I have no doubt she will need every little bit of it to succeed in this world. And I’m not going to lie, the apple doesn’t fall far from the tree. We’re pretty sure B’s personal motto is: You Can’t Make Me, But I Might Be Persuaded (also the title of a book by Cynthia Tobias).

If parenting B has taught me anything, it is this: There are certain things you CANNOT force a child to do, no matter how much you want to. There are tricks and techniques, but ultimately you cannot MAKE them eat, pee, blow their nose, sincerely apologize or, apparently, cooperate with the hairdresser.

So here’s me, and this is my inconvenient truth.

Can you think of anything else you cannot force anyone to do? Have you ever tried?

Also, thank you Rhianna, Kristen, Sasha and lady getting the foils in the next chair, for all your help this afternoon!

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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!

6 comments   |  tags: , , , , , , , | posted in parenting, special needs

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