Why ‘World Down Syndrome Day’ Matters

3/21 is recognized as World Down Syndrome Day, chosen as Down syndrome describes the condition where a body’s cells contain a 3rd copy of the 21st chromosome. This trisomy has been around since the beginning of time, crosses all racial, socio-economic, and cultural barriers, is not contagious, and cannot be ‘cured,’ prevented, or predicted.

But one quick look around today, and it’s impossible to deny that this is not our parents’ Down syndrome.

The best advice I received after having Maggie came from a guardian angel/pediatrician who told me to start planning for a ‘normal’ life for her. “Her only limitations will come from your expectations. Start saving for college. And a wedding. You canNOT look at a 50-year-old person with Down syndrome – if you can find one – and think that’s what’s in store for your baby. We’ve come too far. You can’t look at a 20-year-old and plan for that level of ability. In fact,” and he made me look him in the eye, “you canNOT look at a five-year-old child with Down syndrome and think that’s where Maggie will be. We’ve conquered the ‘quantity’ of life for these kids and are beginning a new world of ‘quality’ of life for them. She will go to school, make friends, read, work, live independently, if you guide her that way. She needs you to hurry up and get over this so you can help her do everything she wants in her life.”

I never looked back.

Maggie will be 15 this summer. She will go to high school in September. She reads, commands her iPad, enjoys full-on conversations, swims competitively, and loves to cook. She complains about chores that interrupt her fun, argues with her siblings, wears braces on her teeth, and leaves her clothes on the floor. She doesn’t like Justin Beiber anymore. She wants to drive. And kissing is gross. The fact that she has Down syndrome is rarely part of the equation.

It hasn’t always been easy. But with four more kids, I get that every kid has his problems. (Thankfully, usually not more than one or two at a time!) And I’d be lying if I didn’t admit that there are times when the worry about how the world will treat her rears its ugly head and scares me beyond reason.

But that’s the point of World Down Syndrome Day. It’s to let the world know that my daughter is a real person. She has intelligence, and compassion, and a great sense of humour. She has so much to contribute to our world; and the world is a better place with her in it. She, and others like her, are beating the stereotype, breaking new ground, and proving that the world needs to rethink its attitude toward the ‘underestimated’ population.

Having kids changed my life. Having Maggie changed me.

 

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Retard Or Not Retard – Should We Ban The R-Word?

I have decided to take a stand on the ‘R’ word..

Four of my five children have special needs. One of those is physically obvious. I love them. I’ve devoted most of my adult life to doing everything in my power – and beyond – to helping them grow into fine, upstanding, contributing citizens. I respect them and their rights. And I will take out anyone who tries to hurt them.

And yet, I will accept the popular use of the word ‘retard.’

I know! You think I’ve just set the plight of the developmentally delayed back decades – but hear me out.

Throughout the history of mankind, language has evolved. No one says hence, thus, or shall anymore; no one even misses such archaic terms. And while there are those of us who regularly cringe @ the fiasco that txt’g has made of the written wrd, the fact is, things are changing and there’s nothing we can do to stop it.

Words come and go. One generation’s ‘groovy’ is another’s ‘sweet.’ ‘Right on’ is ‘down with that.’ And ‘hip’ can be so ‘sick.’ Not one of these words is used solely for its original meaning.

Take the word ‘gay.’ My kids think it’s hilarious when Nana ‘misuses’ that one. What was once happy is now an acceptable term to describe homosexuality. Unlike the word ‘fag,’ which started as a slang term for a cigarette and now tops the pile of politically incorrect labels.

I didn’t realize that the ‘quif’ of my teen years no longer meant that dippy guy who made us all laugh, but had become a unique and effective way to embarrass the crap out of my teenage son!!

And so with the word ‘retard.’ It comes from the French for ‘late.’ In its truest form, it was an accurate description of an affectation causing a person’s intellect and ability to develop or stop at a level below the standard norm. Eventually, the term became a slur against the slow-minded, falling to a state of disgust so abhorrent as to be banned from regular use and replaced with the more detailed ‘developmentally delayed,’ a phrase that, in its multi-syllabic density, is highly unlikely to ever be used by the linguistically challenged – although I am hearing it more and more often shortened to ‘DD,’ opening the door to eventual slurdom.

But because we abandoned the word ‘retard,’ a word with many possible uses, why are we surprised that a slang version has popped up? As with gay, the word has many meanings, and therefore gets used in many ways. Because it can still be used in common conversation, it cannot be banned completely, good or bad.

As opposed to the word ‘nigger,’ which has but one, and only one, derogatory meaning. ‘Nigga’ has become somewhat popular in certain circles. But ‘nigger’ holds the pedestal on the blacklist. It will never be confused with any other meaning.

There are those who hold ‘retard’ in the same regard. And who would like to see popular culture treat it equally. And this is where I disagree. I would like to help the word evolve into the equivalent of ‘stupid,’ leaving behind any link to the developmentally challenged.

Would it not be better to give the word to the popular language, thereby releasing it of its negative connection to those of lesser intellectual ability? Let the word change. Most who use it don’t see it as a word describing anyone other than their friend who just stuck a jellybean up his nose, the guy on the news who drove his car up the down ramp, or the politician who texted pics of his privates. Those who use ‘retarded’ in this way don’t think of my kids when they say it. And nobody calls any of my kids retarded. Because they’re not. They’re not stupid. Challenged, yes. Idiots no.

In fact, I myself refer to them regularly as ‘UNDERESTIMATED.’

So I’m letting go of ownership of the R-word. I don’t want it any more. I will actively discourage use of its nasty form, while promoting it as a way to make fun of people who do stupid things and who should know better! Forgive me if my use of the word offends you. That is an impossible intention. I’ll use more appropriate and acceptable terms to describe my kids. But I would much prefer to join the movement to separate the pejorative meaning of the word from my entire family. I won’t encourage its use around me. But I won’t ban it from my house. I will talk to my kids about its use – both proper and improper. But I’m hoping that this is one nasty little word that, if I don’t give it any power, will melt into oblivion.

In the end, it’s not the word that is the problem. It’s people who think things like this are okay.

If this doesn’t offend you to tears, you are a sad excuse for a human being.

For the record, yes, I did write the word ‘nigger’ in its entirety. I don’t like the ‘N-word.’ And in general, I never use it unless it is a necessary and contributing part of a conversation. But the term ‘N-word’ lends an air of mystery and forbidden to a word that doesn’t need any more help on the ugly meter. If you’re going to say it, say it. If you can’t say it, don’t use it at all. Same goes for the ‘F-bomb.’ Really, do you honestly think I’m not hearing ‘fuck’ every time you say that. Putting a bra on a boob doesn’t change the fact that there’s a boob under there. We all know it. In fact, throw in some lace and underwire, and that same boob takes on some real intrigue. Call the boob a boob.

Okay, I’m listening – what do you think? Retard or not retard. That is the question.

Find Success At The Corner Of Commitment St. and Perseverance Ave.

When my son was born, I worried terribly at the lack of maternal love I had expected to feel for this child. A fierce sense of what I would call protection or obligation, perhaps responsibility, yes. But love? No, not really.

Until the fifth day. The day we were leaving the hospital. And when it hit, it was like thunder in my soul. I felt like my bones had turned to steel and my heart tripled in size. It was a moment that changed my life. And I promised him. Everything. Without reservation or hesitation. Everything.

But when my daughter was born, five years later, I dreaded the burden that kind of love for her would lay on my shoulders. She had three holes in her heart. We spent months in and out of hospital, through bouts of heart failure, failure to thrive, feeding tubes. We lost touch with family, friends, life. My son asked what we would do if she died. And my first thought was that life would go back to normal.

The only thing that held back the guilt and fear was the enormous sense of duty to this helpless child. We soldiered on. We saw her through open-heart surgery, and several life-threatening infections during her recovery. I took pictures every day, knowing that I would never be able to remember any of this experience. In the middle of everything, we were told that she had Down syndrome. I heard ‘death-sentence.’

It was a week before her first birthday. She’d just been given a clean bill of health. Except for the fact that she would never be ‘normal.’ She would never have the life I wanted and expected for her. She would never finish school, hold a decent job, get married, have kids. She would never fit in with friends. I wondered if she would be able to talk, walk, even think.

I was lying on the living room floor with her, watching as she tried with Olympic determination to pull her big toe successfully into her open mouth, eyes crossed in focus on the object in hand. And that’s when it hit me. The love. It took my breath away.

I wanted to promise her the world. But while my heart felt it, I couldn’t wrap my mind around the words. I had no idea how to help her. I didn’t know anything about Down syndrome, special needs, advocacy. I didn’t want to know about those things. I didn’t want to be one of those other people.

But I now had no choice. She was my daughter. And I loved her. That decided everything. And so I promised. Everything.

She is now thirteen years old. She reads. She writes. She answers the phone and her email. She goes to school and has friends and opinions and thoughts and ideas. She has a wonderful sense of humour and the most contagious laugh. She does chores and makes me coffee on Sunday mornings.

I had no idea.

There’s a sign on my wall now. I don’t remember when I made it or when I hung it up. But it keeps my head on straight.

“From the moment that I decide, ‘I will,’ it does not matter that, ‘I can’t.'”

Not being able to do something is no excuse for not doing it. Learning how might take some time and effort. But with a goal in mind, details fall naturally into place.

I’ve often said that having my son changed my life.

And it did.

But having my daughter changed me.