Tag Archives: Down Syndrome

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

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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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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?


Friday Favourites 35

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.


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).


Friday Favourites 27

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.


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.


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

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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