Category Archives: special needs

Disney and the Magical World of Disabilities

It’s been called a “Modern-day Mecca.” Most North American families attempt a pilgrimage at least once in their life time. It’s billed as the Happiest Place on Earth. It’s Disneyland.

My parents hated it. The slick consumer culture, the crowds, the noise, the underlying thrum of excitement, but most of all, the price. They didn’t feel the magic.

My husband and I do. We love Disneyland! We’ve always loved it! The price is a stretch to say the least, but well worth it to us for the excellence in every detail, the nostalgia, the rides and the underlying thrum of excitement. Since we have family who live in the area, we’ve been able to go a lot more than the average family. It is a perk we don’t take for granted. Bringing our children, especially when they were young, remain some of the best family memories in our arsenal.

The First Visit

IMG_0024We took our youngest daughter as a baby, along for the ride while her older sisters gaped in amazement at the “real” Winnie the Pooh and screamed with delight on the Peter Pan ride. She slept through most of the day, but looked cute in pictures. We were just like everyone else.

The Second Visit

Two years later we were back. I had some misgivings about B’s ability to handle the day, so my parents (who love us enough to endure the park they dislike) tagged along. I had heard that there was some sort of accommodation for guests with disabilities, but resolved to avoid it. I was embarrassed to ask. I didn’t want to be unfair. I was sure we could handle it, just like everybody else.

Unlike a typical 3-year-old, my daughter wasn’t able to walk or even stand on her own. Desperate to be mobile, she would scoot on her bum at an extraordinary speed. As you can imagine, this was a filthy way to travel and terribly hard on clothes, and terribly inconvenient to adults who don’t expect a headstrong little speed bump to pop up unexpectedly.

She was okay as long as we kept her in the stroller, but her sisters were eager to go on rides and show her all the wonders she had slept through last time. The waits weren’t particularly long, but holding a squirming, screaming toddler can make time pass extraordinarily slowly. Not only was she dying to move, but she could see something exciting, just out of reach, and was enraged that we wouldn’t let her go to it immediately. As the lines wind closer and closer, then back around, farther away again, she must have thought we were playing a cruel trick on her. By the time we made it onto the ride she was almost inconsolable.

She LOVED being on the ride. She would squeal and clap and laugh with pure excitement. For 30 seconds. Then it would be time to get off; we would pry her fingers off of the bar and drag her away and head to the next lineup. By now, she really was inconsolable.

After a few hours, she had to go home. It was all too much. It was just too hard. The crowds. The noise. The heat. The waiting in line. She wasn’t the only one being punished for it; we all were, the whole family and everyone in her vicinity.

Third Time’s a Charm

Disney 003Our next visit, I was prepared. We had been planning and talking about this day for months. B had been looking at her sister’s pictures and had become enamoured with the Disney Princesses (though she didn’t have the attention span to sit through an entire movie). I had documentation of her Down syndrome (in case looking in her eyes wouldn’t be enough) and after our last disastrous visit, absolutely NO compunction about taking whatever extra help Disney could offer us. After all, I’ve finally made my peace with the fact that we’re not just like everybody else.

There seemed to be a lot of confusion about where and what we were needing, but we finally found ourselves at the City Hall talking our way into a “Special Assistance Pass.” They didn’t give it willingly at first, but I stood firm: we just can’t handle a repeat of our last visit, not when she’s so excited to be here.

The Pass was intended not just for guests who have visible disabilities, but also those with cognitive, emotional or behavioural problems and need extra support to be able to enjoy the Disney experience. Usually, this meant using an alternative entrance (fast pass or going in through the exit) and waiting there. We didn’t cut to the front of the line right away, but waiting in a calm, cool, less crowded spot makes all the difference.

I’ll admit, it makes our ride experience much faster. That’s the only way it works for us. B can’t tolerate many different rides, so mostly we went on the tamest rides over and over again. But she was wild with excitement!

There’s an age, when adults are giants and characters in books/movies are real and that cool veneer of realism hasn’t yet begun to form. I love taking my kids to Disneyland at that age. They call it “magic” and it really is. My 5-year-old was there and we all basked in her wonder.

Now

She’s still there. At 9-years-old she still believes. She is still amazed. She watches “Brave” at least once a week and if you can understand the words, she’ll tell you the entire story. She often stops and looks at the Disneyland pictures hanging on the wall. She asks to go back all the time.

There’s not much that our entire family, big kids included, can do and enjoy together. Outings are hard. Interests range wide and far. Attention spans are short. These days, B is quickly overwhelmed by new situations, especially ones involving crowds and noises. Even more so than 4 years ago, she needs support.

Now we have a little brother in the mix. He’s never been to Disneyland, and that just seems wrong when you consider how much our family loves it. He has his own blend of special needs: extreme hyperactivity, sensory processing disorder and general impulsivity to name a few. I’ve learned a lot over the years about our limits and our needs, and I’m no longer embarrassed to ask for help. He needs support.

We’ve begun planning (and saving) for a family trip to Disneyland. It’ll take a while, so we’ve booked a timeshare for December 2014. But that anticipation is half the fun for our crew. We’ll have our days mapped out, eateries scoped and show times noted.

That is, if Disney has a workable special needs Guest Assistance program available…

Right now, Disney is getting rid of their Guest Assistance program. It has been badly abused over the years, which has ruined it for those of us who truly need it. They are rolling out a new program on October 9th. 

It sounds terrible.

I had hoped that this was one of those online stories that was wildly exaggerated, but my research has been discouraging. The Disability Assistance System is like a modified Fast Pass, which involves at least two extra lineups/waits, only applies when the wait time is more than 45 minutes (waiting that long is so far beyond our son’s capacity that it’s laughable), AFTER extra lineups, we’ll end up in the regular line anyway (which I’m sure will be fun for everyone)… oh, and it only works on a select few rides.

Without extra help, Disney isn’t do-able for our family.

Just one more thing that’s out of our reach.

There are other families with even more complex problems in the same boat.

As a company, Disney has a reputation of going the extra mile, making every effort to create an amazing experience for ALL their guests. They have certainly won us over in the past. I can only hope that they will hear what special needs families, and those who support them, are saying. I hope they will build a system which actually helps my children and others like them. I hope they’ll make it a priority.

If you want to help, please:

Sign the petition

So here’s me, sad that so many people abused this system which worked so well for us. Sad that the new system seems so unworkable. Mostly, sad that we might never get to share a Disney adventure with our boy.

For more information:

Thanks Erin, for bringing this to our attention!

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Nine Years Old

5504996471Dear 9-Year-Old,

I’ve always railed against my children growing older. But none more than you. You may be a big sister and a school kid and a joke-teller and a rider of three-wheeled bikes… but you are still my baby.

You’ve gotten so tall lately. Objectively, I know that’s not true, since you aren’t even on the growth chart for your age and only hit 5th percentile on the Down Syndrome version. But each night when you climb into my lap and we sing our made-just-for-you-that-moment lullaby, you are all lanky arms and legs. When you dance with arms akimbo, they seem to stretch so far and so wide. When you “stir” the salad for dinner, you don’t even need a stool anymore. You are still my baby, but you are getting big.

Not just physically either. You are becoming more independent. You like to play on your own in your room, then tell us the story about your latest pretend, or that dream you had last night. You occasionally tidy up without being asked. You prefer to read at school with your teachers and bask in the familiar routine of listening to Mommy at home, but you’ve begun to interject a word here and there when we read Caps For Sale and Dr. Suess. When we can bribe you to read a book on your own, it is always a masterpiece in my ears – especially your silly favourite, No, David, where each page brings a new gale of uproarious laughter.

You are someone who loves to laugh. What your jokes may lack in intelligibility you more than make up for in sheer enthusiasm. I may not understand every word of the build up, but when you shout “MEATBALL!” then crumple into a fit of giggles… I can’t help but join in.

You are a gentle soul, the first of my children to pet me when I’m sick and reassure me when I’m sad. No matter how spitting mad you might get (literally spitting over and over again), it doesn’t occur to you to hurt someone. You are sensitive and have a great capacity for kindness. You are the cheerleader of the entire world – you say “Good job!” to everyone: the lady who waited on our table, the man painting the walls at school, your sister for opening the door… every classmate for every accomplishment. You offer applause at every turn. We clap a lot at our house.

In a world of pretenders, you live without masks or defenses. This isn’t always socially acceptable, but it’s often refreshing. We don’t wonder how you feel or what you want.

You are easy to love. Not always easy to parent, with your iron will and refusal to be rushed through life. But effortlessly and entirely loveable!

I don’t care if you are nine-year-old or ninety, you are still my baby.

I love you!

Happy Birthday!

Mom

And now, from Daddy…

Dear B,

How can my baby girl be 9 already? It hardly seems possible. And yet I can hardly deny it. Wherever I look, I see signs that you are growing up.

This was a year when some things that you’ve been working very hard on for a very long time really started to snap into place for you. You’re a stubborn little girl, and that comes with some challenges to be sure, but it also comes with a tenacious drive to accomplish whatever you set your mind to.

We were so excited when you brought a book home from school and read it to us for the very first time. Your favourite teacher, “Ms. Smelling” spent time with you every day at school, helping you learn how to read. We were amazed at how quickly you learned, and the proud beam on your face as you read to us showed that you knew just how big an accomplishment it was.

And then there’s potty training. We’ve been working on that for six years, and sometimes it seems like it’s never going to end! But this summer, you made up your mind: this is going to happen! We’re not done yet, but we can see that day coming… and when it comes, boy are we going to celebrate!

And that’s what’s wonderful about being your daddy. You celebrate harder than anyone I know, putting your whole body into it: singing, dancing, laughing, jumping. You are absolutely infectious; the grumpiest person in the world can’t help but smile when you’re excited. And you make your daddy so proud when you belt out Airborne songs at the top of your lungs as we drive around in the blue van!

I think Ms. Smelling said it best. She wrote a paper about you, and she expressed how we all feel about B:

“You have been and will continue to be a source of joy, humour, inspiration, and learning. You have been the greatest gift and teacher I have ever known; unknowingly you have led me to a greater understanding of what is truly important in life.”

There’s nothing more important in my life than being your daddy. I love you Becca. Happy birthday!

Love,
Daddy


Does Down Syndrome Need Fixing?

You are not broken, sweetheart.

At least, not in any way that really matters. Not like people who are spiteful or small-minded or utterly self-absorbed. I hope the day never comes that you suspect “special” is a code word for defective. Or that having “needs” is a shameful weakness.

There are people that think this way. Ignorant people who simply don’t understand. Cruel, stupid people who simply don’t care. Less than there once was, but still… too many people.

Part of me wants to take a swipe at anyone who suggests you need fixing. To crouch in front of you and bare my teeth and unleash my primal maternal instinct on them all. Because the possibility, the mere hint of the idea that you are less than anyone else is repugnant.

hoos-ll-family-portraits-21You are different, sweetheart.

This is the truth. You work harder than anyone else around you. So many skills and activities which other people take for granted are a real struggle. Your health has to be monitored closely as you contend with a number of medical problems and risk factors. It takes longer for your brain to process the words you hear and the memories you are trying to recall. Your best efforts don’t always make the words clear enough for us to understand. You are often frustrated and overwhelmed.

I want to fix that for you. Not because you are less; because you deserve more.

You are so precious, sweetheart.

Your sense of humor and your kindness and your stubborn will come to mind. And so many other wonderful qualities too numerous to describe here. There is no one in all the world like you. The world may look at you and see Down syndrome. I look at you and see… you.

Down syndrome is part of your story. Maybe you wouldn’t be quite so exceptional if you didn’t have all these struggles. This reality has significant challenges, but there are gifts also. One extra chromosome has not been a tragedy for you.

You are so precious, exactly the way you are, sweetheart.

So when I was asked to speak on a radio talk show this week (CBC Radio – The Current) about breakthroughs in genetic research (Researchers turn off Down syndrome genes), it was harder than I expected.

Of course when the news agencies use provocative words like “eradicate Down Syndrome” it conjures up thoughts of Nazis and final solutions, not dedicated scientists striving to make the world better for you. Of course I have reservations about safety and risk factors. Of course I hope that the professionals involved will continue to be respectful of our children’s needs, and strengths. Of course I wonder if this is yet another false hope alongside the dubious therapies and vitamin regimes often peddled to desperate families.

But after a deep breath and a closer look I realize that it is incredibly good news.

I’m thrilled about the possibilities the future might hold. Targeted therapies which ameliorate the harmful, even life-threatening effects of Trisomy 21 are more possible than ever. Research may not translate into reality for many, many years, but it isn’t overly idealistic for me to hope that early onset dementia (which affects 60% of adults with Down syndrome by age 60) will not be a problem for you. After all, they still have 52 years to figure it out.

So why the difficulty? Why a panel to express a range of opinions? What could possibly be controversial about this?

We all agreed, from Dr. Jeanne Lawrence (the head researcher who now has a HUGE fan in me), to the show’s host, to the rest of the panel, that anything which leads to longer, healthier lives for people with Down syndrome is a wonderful thing.

But it always comes back to the question:

what if we could “fix” Down Syndrome entirely?

(We can’t, by the way; the geneticist made it very clear that while the research makes the treatment of symptoms of Down syndrome a possibility EVENTUALLY, eliminating it entirely via gene therapy is extremely implausible.)

Nevertheless, this is where controversy finds the most traction. Is Down syndrome a problem to be fixed? Or is it a part of our genetic diversity to be embraced?

There was a mother on the other side of the country, and the other side of the argument presumably, who was on the air with me. We don’t disagree about much. I appreciate her viewpoint and share her enthusiasm for the unique Down syndrome culture that has emerged in recent years. It makes me happy to know that you’re a part of it.

People with Down syndrome are worth celebrating. They are a remarkable group of unique people who share a common struggle. Some lead meaningful, rewarding lives. Some don’t. Some are kind, affectionate and openhearted. Some aren’t. Some are funny. Some are serious. Some are sociable. Some are shy.

None are pitiable creatures to be patronized, nor angels to be revered. First and foremost, they are individuals who each have their own story. They are not extraordinary because they have Down syndrome, but because they overcome and thrive and contribute so much to the world. The Down syndrome community is inspiring.

But Down syndrome itself is not something I celebrate. As grateful as I am for the many positive aspects of our experience, it is a medical condition that needs treatment, just like diabetes or asthma. So when asked if I would eliminate Down syndrome if I could, my answer is yes.

I would choose this for you, sweetheart.

I am so proud of all the challenges you overcome almost daily, and of the person you’re becoming because of it. But I would bulldoze every one of those obstacles if it were in my power. Life is hard enough.

There was a time when a child with Down syndrome was considered a hopeless case, when parents were encouraged to stash them away in an institution and try again. There was a time when children with Down syndrome wasted away and died due to a number of undiagnosed medical conditions. There was a time when children with Down syndrome were not expected to learn or participate or reach any level of independence.

We’ve come a long way since then. I can only be grateful for the research that has brought us this far; not just the education and social support, but medical science also. Now minor heart defects and thyroid deficiencies and a host of other problems are detected and treated as a matter of course. Maybe someday, speech delays and low muscle tone and leukemia will be dealt with as efficiently. And maybe someday, Down syndrome itself will be little more than a passing mention in a medical history.

I want that. For you and for the children with Down syndrome who haven’t yet been born. But it was hard for me to express that, both on the radio and here in the blog. Because I don’t want you to hear me wrong.

You are not broken, sweetheart, not in any way that really matters.

You are different, sweetheart, and life may never be easy for you.

You are so precious, sweetheart, exactly the way you are.

So here’s us, grateful for what is, and grateful for what could be, just as long as it involves many, many years with our sweet girl!

hoos-ll-family-portraits-23Beautiful photos by Taliah Leigh Photography

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Our Version of Normal

Sometimes, I forget.

As we walk hand in hand, jumping over each crack in the sidewalk, while she tugs on my arm… “Sing Mommy! Sing!”

It’s just us today. A rare Mommy-Daughter outing, with no siblings to compete with distractions.
This is sunshine and happy and me with my Good-Parent hat on.
This is the ordinary kind of awesome.
This is normal.

We walk up to the counter at Burger King
(Great Parent would have talked her into Subway, but Good Parent heard she wanted “Fies” and aimed to deliver)
Anyway, we put in our less-than-optimally-nutritious, but yummy order AND I notice the looks.

For a minute, I’m thrown. I look around and wonder what’s going on.

Sometimes, I forget.

People are staring at us with big grins and smile-y eyes. The kind of looks reserved for fluffy bunnies and newborn kittens. Awwwww… One lady nudges the guy next to her and nods in our direction.

And it clicks. Of course. Now I remember.

All my children are winsome – uniquely beautiful in their own way. But none of the others get this kind of attention.

It’s not a bad thing. Although it does reinforce my little diva’s belief that she is the Centre of the Universe (thank heaven for a little brother on that count).

It’s not a bad thing, but it does remind me, that OUR normal, isn’t exactly… well… normal-normal.

OUR normal involves extra appointments in far away places with all sorts of “oligists” (and an excuse for Mommy-Daughter time, with, perhaps, a detour to Burger King).
OUR normal looks tiny and slightly wobbly, but is fiercely determined to open the heavy doors “by mine-self” (while we wait, and wait… and wait).
OUR normal smells just a little bit off (which is why I carry pull-ups for 40 lbs+ in my purse at all times).
OUR normal sounds like my almost 9-year-old singing “Skinn-a-ma-rink-y Dink-y Dink” at the top of her lungs, while sticking her hand down her pants (and an admiring public who think she’s adorable for it).
OUR normal includes a lot of extras – extra work and extra people and extra effort… and extra attention wherever we go.
But,
it’s not a bad thing.

In fact,
Sometimes I forget.

I forget about Down Syndrome. I forget about the hassles and the heartbreaks and the headaches that inevitably come. And we just live our ordinary awesome, everyday plodding, bittersweet regular life.

Because, for us, this IS normal.

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One Thing To Rule Them All

I had planned to blog last week during our holiday. Not cause I have to. Because I really want to.

I envisioned myself writing deep thoughts about God and life in my brand new notebook as our mini-van winds its way through the Rocky Mountains. Or perhaps curled up with a pen and paper in front of the fireplace, trying to recapture the hilarity and wonder of a new family adventure. At the very least, I would have time, away from chores and telephones and teetering piles of laundry, to polish up one of the many half-finished posts in my drafts folder.

But no more whiney posts about parenting. Not again. I’ve done way too much of that.

This holiday week was chock-full of inspiration.

  • Easter week… bringing one of the greatest showdowns of these modern times – Jesus Christ vs. Chocolate. Who will capture the heart of our generation?
  • The Rocky Mountains – my very favourite place ON EARTH. Ten thousand Japanese tourists can’t be wrong.
  • Spending time, real memory-making, road trip taking, in each other’s pockets until you want to scream, time as a family.
  • Glen’s Grandma’s 90th birthday – bringing in cousins and uncles and one incredibly beloved nephew from far and wide; showing off our new addition for the first time; celebrating a woman who isn’t Great because of her many years on earth, but because of who she is and how she loves.
  • Finally introducing the boy to MY Grandma (clearly we have an embarrassment of riches in the Great-Grandma department) – by the time we left he had decided she was his favourite adult, ignoring the rest of us and dragging her away when the rest of us tried to talk to her.
  • My brother-in-law changed his FaceBook profile picture to a red equal sign (the internet is awash in the gay rights and the bible debate). I wanted to “like” it, but I wanted to explain that to everyone who might not understand why I do.

So I started about a dozen different posts, in my head and on paper. I tried. I really did. To write something touching or eloquent or provocative or even readable.

But the voice in my head sounded like Charlie Brown’s teacher.

Wah-wa-wah-wa-wah.

I was defeated by the one thing that trumps inspiration. It puts basic intelligence in a headlock and flushes all my emotional energy right down the toilet. It squeezes my physical body like a dish rag, until I am literally begging for relief. It is the one thing that rules them all.

Sleep.

Specifically, a desperate lack of sleep.

430amThe boy has discovered that he can escape his play pen at nap and bedtime. So he does. Over and over and over again. Apparently, this is so much more fun than actually sleeping. He cruises right past tired (which is a sweet time of eye rubbing and snuggling and big yawns) right into over-tired (which involves frantic hyperactivity, screeching at the top of his lungs and dramatic tantrums).

We tried everything. Rocking, singing, cuddling, co-sleeping, absolute quiet, ignoring him, gentle discipline, cough syrup, putting him down early, staying up late, skipping nap, liquid melatonin, begging, yelling, praying… we asked for ideas on Facebook. We even drove into the city to buy a tent to put over his playpen (which he broke in about 5 minutes). In the end, we spent hours and hours holding him in his bed until he fell asleep. Every nap. And every bedtime.

One night we played this game until 4:30 am. By that time, both he and I were crying.

I am barely human after 3 am.

Naturally, he wakes up at 7 am. Every morning. No matter what.

This changed the trajectory of our family holiday. Glen and I barely saw each other. I barely had time to shower, much less think or write or create. We didn’t tackle nearly as many activities as we had planned. We weren’t as witty or interesting or wow-look-how-cool-they-still-are-even-though-they-have-such-a-chaotic-brood-of-children as we had planned.

I’m not going to lie. These are the times I wonder… what have we gotten ourselves into? I’m not nearly as calm and patient and put-together as I hoped I’d be. I’m not the Mom I should be. I rely on DVDs and iPhone games and counting down the minutes until nap time.

And the selfish part of me resents all those people relaxing in the Banff Hot Springs while we usher two screaming, poopy children back out after the least relaxing 3 minutes of our day. And I wonder if I’ll ever finish a conversation at a family gathering without darting away to rescue someone’s purse or flower arrangement or too-close-to-the-edge-of-the-table drink. And I’m tired. So incredibly tired. All the time.

But.

And here’s the part that matters, even though it’s not all that touching or eloquent or provocative.

For every miserable, smelly, irritating, exhausting challenge they bring into our life, there is a heart warming, sweet, wonderful, life affirming moment that makes it all worthwhile.

At 4:30 am, I cried tears of frustration as the boy screamed and fussed. In his thrashing he managed to twist himself out of my arms and smash his head against the wall on the way down. The sound just makes me feel sick. It was a low point.

He immediately stopped screaming and fighting and scrambled into my arms. “Mama! Mama! Mama!” Rubbing his face into my neck while I checked for a lump and kissed it better. He stroked my hair and wrapped his legs around my waist and his eyes finally, FINALLY closed.

I guess I’m easy to please. Because that little cuddle made the whole wretched night worth it.

He’s still my favourite boy in the whole world.

So here’s us, home to recover from our “vacation” and not a moment too soon.


Mommy’s Superpower

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!


Just Like Everybody Else

“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?


Little Boxes

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).


The Underwear Crisis

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.


P.S. Did I Mention…

I have a terrible sense of direction. Even in familiar situations, I can get completely turned around. I can handle “Left” and “Right”, but if you try to tell me “East” or “West” it makes me laugh.

You may as well be speaking Mermish.

Once I picked a friend up from the train, got distracted talking, and turned the wrong way onto the highway. In my defense, it had been a long time since I’d seen him and we were having a Great Discussion. After 1 1/2 hours I realized that we should have been home by now; we had to turn around and didn’t get home until 3 hours later.

I’ve adapted. I am quick to ask for directions. I leave a little extra “getting lost” time when I go to a new place. I don’t panic, just calmly turn around again, and again, and again, until I finally get where I’m going. Or call Glen in tears, cursing the creators of GPS and the idiots at Mapquest, when I’m mostly just mad at myself.

We all have abilities AND disabilities. Some are more obvious than others, but everyone has both. There is no perfect human specimen (and if there was, who would want to be around such an obnoxious know-it-all?). We all try to maximize our strengths and struggle through our weaknesses. And often it is our struggles which form the Very Best Part of who we are. God likes to use our DISabilities most of all.

Our children are the same. We love them for Who They Are, not What They Can Do. In fact, their disabilities are part of their unique make up. And while we wish life were easier, we love even those parts too.

All our children have Special Needs.

L needs to be reminded to let things go, to take risks and to quit bugging her sister.

C needs help to regulate her emotions, to behave selflessly and to not let her sister bug her.

B takes longer to learn new things, has low muscle tone and a speech delay (aka – Down Syndrome).

S was born 3 months early, he has a rare genetic syndrome and a moderate hearing loss.

The truth is, we don’t know the extent of our new son’s special needs, but he does have them. We haven’t spoken about them to many people, because, to us, they are beside the point.

Oh, I know they will very much affect our lives. We have researched and continue to do so. He is doing AMAZINGLY WELL so far; his developmental assessments use words like “surprising” and “remarkable”, especially about his cognitive abilities. But he will have learning disabilities his whole life. He will take a longer to catch up in milestones. He may never be “just like everyone else.”

But so what?

He is our son and that is the most SPECIAL thing about him.

If you are person who prays, please pray for our boy tomorrow. He is having surgery on his skull. They assure us that this is a fairly common procedure with quick recovery time, but it is still upsetting. Especially since we can’t be there with him every step of the way. He needs familiar people around him and, as much as we love him already, we are strangers.

So here’s me, praying.


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