Tag Archives: Down Syndrome

November 21, 2018

Another Word

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

I’m feeling a need to write through my feelings again. After crawling into a post-cancer cocoon for the past year and a half, I’m back.

I started so many posts over the past few years. Fretted and fussed about getting “back into it” but quickly set it aside when it started to feel like pressure. I do not need more of that dreaded s-word in my life (by this I mean Should, but the other one fits too).

So here I am again WANTING to write for the first time in I can’t remember how long. Because once again I need to process my experience and nothing works quite like this. Throwing it all up against the wall to see what sticks.

Fair warning, I doubt it’s gonna be pretty, or witty, or all that inspiring. Also, there will be swearing. I swear now. I want to honour my family and my beliefs, truth, justice and the Canadian need to apologize frequently… but I’m too tired to self edit that much. Or at all.

This morning we got another official diagnosis for our little B (who remains happily in remission from leukaemia). I say little, but she’s actually 14 with all the sass and hormones that this entails. I’ve long ago made peace with the words “Down Syndrome,” “OCD” and, yes, even “cancer survivor.”

on your sleeve like they say from Flickr via Wylio

© 2008 Andrew Malone, Flickr | CC-BY | via Wylio

These are our words. Not who she is, but an important part of our daily life. Words that describe but do not define her.

She remains feisty and adorable, soaking up all the attention in the room. She’s challenging, very much so. She likes to be in control. She never stops talking. She’s often inappropriate – belches loudly, talks about poop, ignores people and makes us laugh every day.

She’s a lot of work. And she’s worth it!

But she wasn’t outgrowing some of the quirks that we used to chuckle over. In fact, they were getting much worse. More rigid. More controlling. More strange words and tics and coping rituals.

And while she remains an attention sponge, she has very little interest in actual friendships. Her social interactions follow specific scripts, whether they make sense or not. She continues to introduce herself and ask the names of old acquaintances, even family.

She loves imaginary play, but it sticks tightly to “the plan.” If you try to improvise or cut her scenarios short she gets very agitated. Her obsession with her favourite stuffed dogs (Pluto!), previously a helpful incentive, have become a hurdle. They’ve been banned from school. And the bus. And helping mom drive the van.

Hardest of all, she perseverates. There’s a ten dollar word for you. It sounds kind of admirable, like perseverance. According to dictionary.com it means: “to repeat something insistently or redundantly.” According to me, it is a very efficient means of causing mom to lose her ever-loving mind.

All kids do it sometimes, but B is a world champion.

Standing beside my bed in the middle of the night while I’m sleeping: “Mom, mom, mom, mom, mom, mom, mom, mom, mom, mom, mom…”
x 578 900.

Now louder and with more feeling: “ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM!…”
x 1 987 638.
(It should be noted that she is extremely lactose intolerant and not permitted ice cream these days.)

So we wondered. And we remembered the handful of voices that had suggested it in the past. And we asked questions, read articles, visited the paediatrician and the psychiatrist and then waited, waited, waited (for almost 2 years) for her turn to be assessed.

The psychologist we saw initially gave us a pretty clear (and horribly depressing when compared to every typical 14 year old girl in the world) picture of B’s cognitive ability. I hate those stupid IQ assessments and as a parent find them entirely pointless. He also cautioned us not to expect a positive diagnosis. She’s just so outgoing and engaged and nothing like the stereotype of this diagnosis we all know so well.

But stereotypes while sometimes true, can also be total bullshit. (For further proof: kids with Down syndrome are always SO happy and angelic.)

If you haven’t guessed where I’m heading with this, the developmental paediatrician we saw today said it was a slam dunk. We’ve added yet another word to our lexicon – autism.

I’m not surprised. Some studies suggest that 10% of children with Down Syndrome (DS) also have Autism (ASD). While mysterious there’s clearly a genetic link. These dual diagnosis kids often present different, seeming more social and expressive.

After years of hearing the grumbling in DS circles that the ASD families get all the money, I was hoping we could cash in on superior funding. Also, we were tired of having to explain that B isn’t just like every other cute kid with DS that teachers and workers and friends knew. Most of all, we craved the validation that something else, something more is going on, we aren’t just over-reacting and under-parenting.

I’m not surprised. I thought I’d be thrilled to hear it.

I’m not surprised. But I am strangely devastated.

It’s just another word. It describes our reality. It doesn’t change a single thing. And knowing officially will probably make things better for all of us.

But it’s another damn word. And she has so many already.

There will be a day that I need to rally and focus on possibilities, find the silver linings and tell the pretty stories. But today, today I’m just sad and angry and so fucking tired.

 

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

September 12, 2015

The Best Thing About This Year is: You Being You

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

Your hair fell out this year, all of it. It’s not something that happens to most ten year olds. Not something you understood. Not something we knew how to parent through. But you handled it. Better than I ever expected.

There are moments of sincere sadness; “I miss my hair” is a familiar refrain in our house. A hug and understanding comment is all you need to be comforted and move right on with life. You’re quick to find humour in the situation – apparently, it is both hilarious and wonderful that you now look like Uncle Lex and Grandpa Bill. Not all bald people share your perspective, so loudly pointing it out to them is a habit we’re going to have to work on. You do love attention more than most. You’ve never acted embarrassed or self-conscious, and why should you?

When I finally shaved your head, you objected more to having to change your shirt after than the act itself, even though I was gulping back tears. The only part of this that truly angers and offends you is when some helpful soul points out that your hair will grow back. “NO! No, no, no, no…” you shout with a disgusted look on your face. Who wants that gross old hair, that fell out in chunks and left you with hairy clothes and pillow cases and even food?

You are growing new hair. This is the only thing you want, to move forward. It’s the only direction that makes sense. Preferably with blue or yellow hair, depending on your mood. The baby soft half-inch that’s grown back so far is a lovely brown, something you’ve not quite resigned yourself to. But I’m sure you’ll make peace with it, the way you do with everything. Honestly, wholeheartedly, with a lovely and unique perspective.

Losing your hair was a hard thing, but not nearly the worst part of cancer. The long months in hospital, the repeated isolation orders, the pain, the machines and wires and tests. The near-daily treks to the clinic when you finally got home. Being too weak to walk up the stairs, too tired to get out of bed. The yucky tummy that still hasn’t gone away, the “diiiiiis-gusting” medicine, the tube in your nose, and the many, many pokes that you hate with a passion. Having to be held down for this procedure or that one. Mostly, being so very out of control so much of the time. For you, that is the hardest part.

You are the toughest person I know. Really. I can’t wrap my mind around everything you have endured, are enduring still.

You have a spark of life that fights through. You are you, and nothing will ever change that. You make that clear to everyone who steps into your domain. You are not a passive patient. There is no way you’ll allow anyone to examine you or do their work until they earn the right. It is exhausting sometimes, but good for all of us. Sometimes we grown ups forget to be human when we’re focused on getting things done. You love the “cleaning nurses” and the “food nurses” best of all – demanding names from each of them, asking for them when they’re gone. In your mind, they are the most valuable, because they bring something tangible to you and you can count on them to come back day after day (and never poke or prod).

Your little rituals make life feel safe. Fred (the IV pole) has had several new faces taped to him over the year, but he’s a constant friend and someone you are glad to see and drag around the hospital with you. Pluto may be a stuffed dog, but he’s an old pro at getting his vitals taken. When we get home you play “Dr. B” and give him many of the same treatments you’ve endured yourself. He’s also the one who feels things the most, crying and woofing when he’s feeling scared or shy or sad. Hearing you comfort him gives us the clues we need to know what you need. On hard days you watch the same show over and over again, or ask to listen to “the lady” (a meditation app on relaxation) whose voice could induce a deep sleep while reading the phone book, or we listen to “A Whole New World” as you tell me all about the magic carpet ride you’re going to take around the world, and all the things you’ll see and do. When eating is hard, as you feel both ravenous and horribly nauseous, we watch the Food network all day long and write menus in crayon.

It has been a hard year. A horrible, scary, and somehow life-affirming year. It’s such a terribly cliché thing to say that you’re my hero (cue cheesy 80s music). As a writer I should be able to think of a better way to say it, but it really has been such an exhausting year. I’ll just say that loving you is one of the best things I’ve ever done or ever will do.

Happy Birthday!
Love

Mom

 elleestforte

Happy Birthday to the spunkiest 11-year-old I know!

Where to even begin describing all that you have been through this year? When you turned 10, we had no idea that you were about to embark on the hardest year of your life – a year that no child, no person, should ever have to face.

When I think about this year, the first word that comes to mind is “unfair.” It is not fair that you got cancer. It is not fair that you lost your hair. It is not fair that you had to spend half your year in the hospital, miss Halloween and Christmas, rarely leave the house, never see your friends, have to face a million hard and painful medical procedures, deal with infection after infection, get woken up every night for medicine, and generally feel miserable all the time. My heart hurt for me, and for your mom, and for your sisters and brother… but most of all, it hurt for you.

But you never ask questions of fairness. You don’t wonder why this happened or when it’s going to end. You just deal with what comes your way each and every day. Not always happily (and who can blame you), but always bravely. There have been a lot of tears this year, for sure, but there have also been a lot of laughs. Nothing – NOTHING! – can destroy your spirit.

Instead of moaning about losing your hair, like I would, you’ve made jokes about how you look “like Uncle Lex,” and assured us that when it grows back, it will definitely be blue. When you have to swallow yet another gross medication, you talk about how the “strong medicine” is chasing the unhealthy cells away. You barely even flinch when we do six toe pokes a day each month when the wretched diabetes returns.

On the night we got the news, I carried you to bed and looked at your peaceful face, trying to convince myself that nothing had changed. Of course, I was wrong. Almost everything had changed. Most of all, that was the night you became my hero.

So here’s to you, my inspiration. It’s going to get better from here on out, and we’re going to celebrate every step of the way – starting today, with your birthday. Happy Birthday, B!

Love,

Dad

 

4 Comments   |  tags: , , , | posted in Uncategorized

June 28, 2015

So Now What?

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

I’m back where I was when this crazy ride started 2 weeks ago. When we discovered our daughter’s photo had been stolen from my website, then published internationally to promote prenatal testing. When we chose to speak up, to take on our bullies in public and take the hits as they came. When we said no to worldwide media, reporter after reporter, as we focused on chemo and survival. When we flailed under a deluge of advice and help and yes, criticism, before giving the mess over to more experienced hands, hands we could trust. We are where we have been all along, in the place that really matters – at the bedside of our very sick girl.

Back in the hospital again, and somehow the hurt and outrage fades to the background. Cancer is good for very little, but it does bring perspective.

If I could erase this episode I would – it is the very last thing we needed. Stealing precious time and emotional energy when we need it most. Not to mention, such a disheartening sign of the world we live in, where anyone would so thoughtlessly and publicly disrespect a child, any child. I’m sure you can imagine the cruel remarks that have been unleashed on us as well. People can be hateful. There are some who quite plainly wish my daughter dead. Apparently I should expect this and am in fact to blame. Those ones seem particularly upset that I dare to speak up at all.

There are already too many in the world who shrug their shoulders and “what-do-you-expect” their way past all that is unkind and unjust around them. We must live toward the world we want. Even if that means making a fuss.

I’ve learned so much from others who’ve opened up their lives just a bit, to give us glimpses into their reality. That’s the beauty of storytelling: in blogging, photography, poetry, song, film and thousands of other ways humans express themselves. And every time you put yourself out there, it’s a risk – of being abused, misunderstood, misused, co-opted by some other agenda… but we keep doing it because to hide is to let them win.

Let’s be clear, I’m not leaving my blog up to be petulant or to thumb my nose at the risks. It totally freaks me out at this point. I feel exposed and exhausted and I have more important matters in my life.

I’m leaving it up for the same reason I posted that photo in the first place: because it matters that people hear these stories – stories of a good life with a child who has disabilities. Real and messy and sometimes hard, but absolutely worth the trip.

In a world where pressure and fear is brought to bear on expectant parents whose children may have a chromosomal anomaly, people deserve the truth from those of us who actually know. Life has never been better for people with disabilities, and it’s only getting better. That’s not to say it’s easy, but the best things in life rarely are. When’s the last time you heard any parent raving about how easy parenting is? That’s not why we do it.

Ask a parent what matters most, what makes them smile and gives their life meaning. Ask a parent of a child with disabilities. Here’s a hint – exact. same. answer.

Having a child like my daughter is no tragedy.

You have questions…
The biggest question we’ve gotten is what can I do? There have been so many offers that we are humbled and overwhelmed. The cruel and callous should be on notice – they are woefully outnumbered. The answer is simple. The best way to help us, to help my daughter, is to embrace ALL people.

Is that overreaching?
I don’t care. People matter. We have the ability, the innovation, and the resources to make room for everyone in this world – we simply lack the will to do what it takes.

If you need a suggestion, we believe in the work of the Down Syndrome Research Foundation – who seek to create and implement the best practices in reading instruction, speech therapy and life skills development for children like my daughter.

donate

For all who’ve asked for an update – thank you. Our girl is very sick, but she is fighting through. She hates the “strong medicine” that has taken her hair, keeps her isolated and makes her feel yucky, but we are so grateful that it is keeping the leukaemia away. 

Right now her immunity (ANC) is at zero – too low to count. She has a number of infections and must remain in hospital until she recovers enough to better fight them off (ANC of 0.3). This is our last week of Delayed Intensification – one more IV chemo on Monday then her immunity counts need to recover (ANC of 0.75) before she moves into what should be a less brutal 18 months of chemo. If all goes well she may even be able to return to school part time this fall.

She’s very excited about growing new hair this summer. Brown, she’s decided. It’s impossible to say what colour or texture may grow back, but if anyone can control it by sheer willpower, it’s her.

 

16 Comments   |  tags: , | posted in Cancer, special needs

March 21, 2015

No Single Story

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

There is no single story which speaks the truth of Down Syndrome.

Certainly not the outdated pessimism of some medical professionals who see it as a life not worth living. And the more than 80% of terrified parents who terminate their pregnancy as a result. Those dark sketches of burden and heartbreak bear little resemblance to the beautiful children I know.

There is no truth behind the many, many comments of “I don’t know how you do it” and it’s close cousin “I could never.” Because trust me, you could and you would. That’s what parenting is, Down Syndrome or not: doing what you have to, the best you can on most days, and not so great on others. But kids are resilient. Kids with Down Syndrome especially so. They have to be.

I hate to admit it, but the truth does not lie in the air-brushed snapshots of perpetual happiness either. The cuteness, that’s very real. And studies have shown that families who include a member with Down Syndrome experience significant amounts of joy and fulfillment. But these children are not angels come down to earth, they are human beings. Amazing and inspiring often, but also grumpy and quirky and stubborn and everything in between.

I wouldn’t have it any other way. My daughter is an individual not a stereotype. She is her own unique person.

She faces a larger set of challenges and obstacles than most people, and she has to work harder than everyone else. Some people say stubborn like it’s a bad thing, but that iron will has given her a toughness that impresses nurses and doctors, and is in the process of kicking cancer’s butt. She would very much like to control the entire universe (she is her mother’s daughter after all), but often finds herself at the mercy of a world that moves too quickly and unpredictably. She doesn’t take that lying down, let me tell you. She is indomitable. She has a silly sense of humour and loves to tease us with the absurd. She is gentle and sweet and undeniably charming. She insists on being called by her name, and nothing else. She refuses to be labelled in any way, not even endearments or compliments – not honey, or sweetheart, or smart, or brave, or a girl… “I’m just B” she says. She is her own category.

“And though she be but little,
she is fierce!”
~Shakespeare

This is her story, and ours. Down Syndrome plays a part, and for that we celebrate World Down Syndrome Day along with so many other wonderful individuals and their families. This is no anguished outcry or demand for a cure from bitter parents, this is a celebration. Because our lives are all the more worth living since our daughter, and Down Syndrome, became a part of our story.

There is no single story which speaks the truth of Down Syndrome, there are millions.

So here’s us, celebrating 3-21-2015 for all those with Trisomy 21, also known as Down Syndrome.

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

October 31, 2014

That Terrible Twist that Changes Everything

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

Two days ago the biggest worries on my mind were: securing funding for speech therapy, my children’s potential texting addictions, and getting my butt out the door for book club.

In the space of a single phone call that all disappeared. In fact, it feels like the ground beneath our feet disappeared too. A cosmic upending. As if some powerful hand has shaken our world like a snow globe. We are left dizzy, reeling, surveying the damage to our orderly plans and expectations. And terrified.

Was it God?

Or something less mysterious, some faceless force?

Chance?
Biology?
Cancer?

I blame Leukaemia.

Our 10-year-old daughter has it. Our tiny, charming, iron-willed sweetheart has this disgusting disease.

She wasn’t sick that day, the morning before we got the call, just infuriated as I forced another routine blood test on her. Screaming and betrayed by it, as usual. Then happy as a clam 20 minutes later, also, as usual. Everything seemed normal that day. She hadn’t been sick. We had no warning, no foreshadow, just a punch in the gut when we least expected it.

I’m writing to make some sense of all this. It’s moving so fast. And my brain is moving so slow. That feeling when you walk into a room to get something, but you can’t remember what. The fog. I feel like that – all the time.

They kept asking us “do you understand why you’re here?” Over and over. Were they expecting more tears? Are we doing this wrong? What a stupid thing to think at a time like this. But I need to know we’re helping her, somehow. Even by going through the right motions in the right way.

We must looked stunned and stupefied. Which, of course, we totally are. But I’m hoping it plays as competent and calm.

There are already sparks of hope in the story, hints of Providence and amazing wonderful generous people all around us, holding our world, and us, together. There will be more, I know. I’m grateful. I’m making a list.

But I don’t need to write about that, not now. Maybe not ever. There are already lofty, inspiring stories out there aplenty. After all, kids with cancer = sentimental goldmine.

Which, you know, kind of pisses me off. I’m so sick of being brave and inspiring and wise. Since I’m actually weak, scared shitless, and incredibly ordinary. In thousands of ways I cleverly conceal. Because who wants to be known as the mom who just fell all to pieces and swore in front of her kid (and in her prayers, and on her blog) and yelled at her shell shocked husband for sleeping too much and not helping out enough?

Well, not me. That’s for sure.

So I’m writing to process, to make sense in my own mind of all that is happening so quickly. And hopefully get through it with less yelling and falling apart, and more loving my family.

The best I can at least, because it is happening so fast. And I’m pretty sure when this stuff happens we’re all weak, scared, and incredibly ordinary in the face of it. That’s life.

Right now I’m hoping that they can surgically implant a tube near my daughters heart, so that we can pump powerful drugs right into her bloodstream. The sooner the better. That’s right. Two days ago we were planning for Halloween and tonight I’m praying for chemo to start ASAP. Surreal.

Feel free to follow this journey in my blog, but don’t expect the pretty version. So far this experience is raw and exhausting, yet somehow closer to the pulse of life than usual, with gusts to boring and mundane. A bizarre mix. That’s life.

Our daughter, meanwhile, is the hero of the story. As usual.

So here’s us, in the well staffed, cheerfully decorated hell that is children’s hospital.

IMG_1659.JPG

31 Comments   |  tags: , , , | posted in Cancer, parenting, special needs

September 12, 2014

10 Lessons My Daughter Is Teaching Me

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

Ten years seems like a long time.

A long time to be alive and learning and growing and discovering new things – and that’s just us. You’ve had a lot going on too!

In the past ten years you’ve brought us to life in a new way and taught us what matters most and nurtured our best selves and made every day an adventure.

Usually, in these birthday letters, I talk about all the things you kids have learned and are learning that year. I encourage you in some areas of struggle and try to share a vision of the amazing person you can/are to become. This year I’m going to do it differently. This year I want to talk about all the things you’ve taught me and how you’ve made me a better person.

Because ten years is a milestone, not just for you, but for all of us. As I look back and as I look forward, the one truth that stands out, bold and CAPITALIZED, indisputably important, is this:

I AM BETTER BECAUSE I HAVE YOU!

  1. I laugh more. You are unrestrained in your enjoyment of life. When something strikes you as funny, you howl. When the music moves you, you dance with abandon. When you feel happy, you sing – anytime, anywhere. The best part is, a little bit of this seems to be rubbing off on me. You are teaching us to Carpe the heck out of each Diem.
  2. I am forced to slow down. This isn’t an easy lesson for me. In a world of rushing and pushing and trying to squeeze more in all the time, you insist on half speed. Whenever I say “hurry, hurry” you indignantly reply “no! slow, slow!” and deliberately downshift to Barely-Moving. At the time, this does not feel like a wonderful, life affirming lesson, nor do I calmly accept the defiance. BUT, I’ve learned to avoid rushing as much as we can. I’ve learned to see it as the enemy. I’ve learned that we need margins in our life, and have stopped apologizing for insisting on them. Quiet time each afternoon, early bedtimes, no to activities, yes to help… we’re not perfect, but we’re learning.
  3. I am showered with affection. I am not, by nature, a hugger. This does not exempt me from your extremely tactile love language. Turns out, all that snuggling is good for the soul. Not to mention the several times daily declaration: “Hey, hey Mom… I love you!” It’s a rare and beautiful thing to receive such unfettered, unfiltered, unlimited affection.
  4. I have become part of an exclusive, and usually encouraging, community. There is something that happens when I see another person with Down Syndrome, they are an instant friend (much like you and the entire world on a good day). There is a sense of kinship we share with all other families who live with special needs, even those we might not normally click with. There is an ever expanding team of professionals who are assigned to support us – behind the official designations and job descriptions I’ve found some of the most wonderful human beings and even, some true friends. Sure these relationships can be bumpy, the stakes feel high and sometimes we disagree and debate and shake our heads at each other. But we are united in our unshakeable belief that our lives are better for having you.
  5. I am becoming more patient. I was a strict parent before you, one with extremely high expectations. I don’t regret that, but I’ve had to adjust to your needs. Your life is very stressful. For a personality that craves control and predictability the world of disability is particularly trying. I can relate.
  6. I have a front row seat to the cutest show on earth. Seriously, you are the most adorable 10-year-old on the planet. Everyone agrees.
  7. I celebrate small achievements in a big way. We  don’t take your success for granted. You work ten times harder than the rest. Your determination looks a lot like stubborn, even impossible some days, but ultimately it is your greatest strength.
  8. I have developed compassion. I can’t pretend that this life is easy, for you or for us. It peels away any pretense I had about my own saintliness (sorry strangers in the grocery store who assume I deserve some kind of reward for “giving birth to an angel”). The truth is, I’m selfish and shallow and silly in ways I never noticed before. Aren’t we all? And each life is harder and more complicated than an outsider could imagine. I’m learning not to judge a person based on their neediness and messiness and general dysfunction, because I understand grief and exhaustion and being overwhelmed better than I ever did before.
  9. I will never go out of style. This one feels bittersweet. I will never have an empty nest, not really. Yes, I expect you will live independently and have your own full life. But you will always need me in a way my other girls won’t. I will always have a shopping and travelling and movie companion. I will always have snuggles and giggles and silly dancing to the radio.
  10. I see past the myth of normal, the social masks and the competitive games, to what really matters. Sometimes the rest of the world seems ridiculous, stressing about grades and position, looks and social status. Health isn’t a given in our house – muscles that are strong enough to run and jump, a body that fights off illness, the ability to speak and be understood, to see and hear and feel the wind on our skin, to give and receive love… these simple pleasures trump all the superficial we build our life around.

So here we are on your birthday, but the best gift is mine. It isn’t always easy. I don’t get it right all the time. But being your Mom is a joy and a privilege. Thank you! Happy Birthday!

Love, Mom

And now, a few words from Dad…

Dear B,

Is it really a whole decade since you made your surprise appearance nearly a month ahead of schedule? It was just the first of many times which you’ve shattered all my expectations and changed my life – always in the best possible way.

This year it was your reading, which has improved spectacularly. What a treat it has been to sit down with you and have you read an entire storybook to me! I know how hard you have worked on this, and I am so proud of what you have accomplished!

Your talking is also getting so clear – not that you’ve ever had any trouble communicating exactly what you want. Just yesterday you came up to me, pointing frantically inside your open mouth. “Tongue?” I asked. Nope. “Teeth?” Nope. “What do you need, B?” With hopeful eyes, you said without hesitation: “Cheesies. Cheesies in my mouth.”

One of the big highlights for me this summer was being able to watch you in your music class – or “dance class,” as you called it – at my office. And maybe it was a dance class, because you danced your heart out each and every day, with an ear-to-ear grin all the while, and frequent waves to make sure I was paying attention. You especially loved Tommy and his drums; whenever you did stop dancing for a few minutes, you were quick to grab a bongo drum to bang on in your seat. Your energy was infectious!

Speaking of music, this has definitely been the year of Frozen. I can’t even begin to guess how many times you’ve watched that movie. But one thing that never gets old is listening to you belt out “Let it Go” at the top of your longs, dancing around our living room. I remember you seeing Elsa and Anna at the Calgary Stampede Parade. As excited as you were, all you wanted to ask them was, “Where’s Kristoph?” Hopefully he’s with them when we visit them at Disneyland after Christmas!

It’s been a strange start to the fall, with school starting late this year. For a girl who loves her routine, you’ve done very well with having an extended summer. You don’t know it yet, but school’s going to be a little different this year, as you’re going to have some new helpers. You probably won’t like that at first, but I’m sure you’ll come to love them as much as they will love you.

I love you B! Being your dad is one of the great joys of my life. Thanks for always keeping me laughing!

Happy 10th birthday!

Love, Dad

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

March 21, 2014

I Am Me: a poem for World Down Syndrome Day

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

Hello.
It’s me.

You can call me…
sweetheart
kiddo
sunshine

Call me…
student
equestrian
swimmer

Call me…
artist
dancer
singer

Call me friend.

I am me.

I am…
charming
stubborn
silly

I am…
affectionate
moody
kind

I am…
imaginative
exuberant
bossy

I am sweet.

I am me.

I have…
parents who adore me
sisters who tease me
a little brother who follows me around

I have…
grandparents who dote on me
teachers who are proud of me
friends of all shapes, sizes and colours

I have…
fears and dreams
favourite songs and movies
strong opinions about my own life

I have Down Syndrome.

I have
Down Syndrome.
But I am not Down Syndrome.

iammeI am me.

So here’s my homage to the lovely “Lose the Label” campaign (@Lose_the_label). Because we are, all of us, more than our diagnoses and disabilities.

March 21 is World Down Syndrome (aka Trisomy 21) Day. You know, 3/21 for Trisomy 21… get it?

In honour of the unique and wonderful people we know, who happen to have Down Syndrome (especially the one we feed and hug and tuck into bed every night) I am posting a link to this tearjerker. I defy you to watch it and not get choked up:

Dear Future Mom…

12 Comments   |  tags: , , , , , , , | posted in poetry, special needs

January 30, 2014

Putting Myself in Her Shoes

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

The girlshoes

scratch.
scratch.
scratch.
Covering every little spot with pink. There’s noise buzzing beside my head… loud, annoying. I hold my marker tighter. Lean closer, closer, closer. My nose is filled with the sting of ink.
scratch.
scratch.
scratch.
Out of nowhere, a hot weight on my back. The buzzing is Louder than ever…
“itstimetogoweregonnabelateitoldyoutogositonthepottyareyouevenlisteningtomeCOMEON…”

I look up into my Mom’s eyes, wanting to show her my picture. It’s almost done. Looking back I see a stripe of white along the edge. Not right. Not right at all. Needs more pink.
scratch.
scr…

HEY! Where’s my marker?

Her face is right next to mine. Her mad face. Buzzing again. With a pink marker in her hand. MY pink marker. MINE.

“NOOOOOOOOOOOO!” Mad. This is my mad face.

The world moves under me… my chair pulled away from the table. Away from my paper. Away from the white spots I haven’t finished. Not right. Not right at all.

I reach for it.

There she is again. “It’s. TIME. to. go.”

I’m catapulted onto my feet, a big, warm hand wrapped around mine.

We’re going somewhere?
Now?
Right now?
Why didn’t anyone tell me?

So here’s us, where life moves too fast and the girl just won’t be rushed.

For those who are new to the blog, our 9-year-old is navigating Down Syndrome, a hint of OCD and, being-her-mother’s-daughter. She’s joy and charm and mischievous giggles. She’s also the reason we’re almost always late.

This is my entry for the
Wordpress Weekly Writing Challenge: Leave Your Shoes at the Door
“consider things from a different point of view…
walk a mile in someone [else]’s shoes.”

http://dailypost.wordpress.com/2014/01/27/writing-challenge-shoes/

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

December 10, 2013

Music to my Ears

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

It projects across the room, flat and forced, more like yelling than singing.

It’s a step, or two, behind the rest. A discordant echo chasing lyrics that roll off nimbler tongues with ease.

It’s one of the most beautiful sounds in my world.

We’ve had two Christmas shows already this year. At one, she sat front and centre, arms flailing in an approximation of the actions her classmates were performing. At the other, deciding she didn’t like her spot on stage she pulled up a chair and sat behind the rest of the choir.show

There have been years when the traditions of seasonal performance have stung. When she refused to sit with her class or jingle her bells. When she decided scratching her bum onstage was more urgent than saying the words we had practiced so many, many times. When she pulled her dress up over her head for the duration. And while my mouth laughed with everyone else, my heart ached to see her set apart yet again.

But this year… this year her voice rang out above all the rest. Like it has for the last two Christmases, like it does each week at church, and in the car, and lying in bed at night.

She found her voice. She unleashed her inner diva. She fell in love with the spotlight.

Now, the holiday concert is joy. Vibrating with excitement, waving madly, calling out enthusiastically to familiar faces in the crowd, body and soul pouring out in a musical offering, bowing with a flourish at the end, two thumbs up and a toothy grin in my direction. “Good job!” she says to everyone.

No talent scout has darkened our door. No voice coach has approached us with accolades. Her imperfect efforts in these little shows don’t mean much in the grand scheme of things.

In fact, the Christmas show is standard fare for most kids, most schools, most families. Everyone does it. No big deal.

But these molehills are mountains to us. We don’t take any of it for granted. Which makes it even more magical.

At the church pageant our daughter’s friend, from Special Olympics, lisped a single line into the microphone. Heavily prompted. Two words at a time. I had to choke back tears as the crowd clapped and cheered.

Next week, we have another Christmas concert. I can’t wait. Because that toneless, tuneless, guileless song is music to my ears.

So here’s us, where performance is judged purely on enthusiasm and effort. And the ability to keep one’s clothes on in public.

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

September 23, 2013

Disney and the Magical World of Disabilities

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

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!

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

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