Williams Syndrome Wednesday: Advice for new members of the Special Needs Moms Club

by , on
Nov 13, 2015

It’s not earth shattering. In fact, it’s probably the same advice you got when you first started dating years ago. And, I wish someone had given it me.

Here it is:

Hang on to your friends. 

Hang on tight.

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Here’s why:

There’s going to be a time when they surround you.

They’ll be there for you. They won’t know what to say and will probably say things that they regret or things that make you cringe. They will probably stick their feet in their mouths (Will she ever be normal?). Yikes. But that’s just because they don’t know what to say. How could they? This is all new to them too. They’re learning along with you. If you keep them close, they’ll get better at finding the right language.

There is going to be time when they give you space.

There’s a steep learning curve when faced with a diagnosis. There are appointments, specialists, there is research to do, feelings to feel, a lot of processing time. You’re gonna need to muddle your way through it. You’re going to get really busy. They’ll check in and see how you’re doing. They’ll cry with you and celebrate with you, but you’re heading down a road that can’t fully follow you down. Send postcards. Fly over to their road when you can.

There’s going to be a time when you realize your path is never going to be the same as their path.

This is going to make you feel lots of things. Jealous. Angry. Resentful. It might make you feel bad that you feel all these FEELINGS and none of them are good. It is going to makes your paths feel even further apart. Take a few minutes to look around and find the things that are the same on your path and reach out. (I know, you’re thinking “why should I reach out, I’m the one going through the hard time.”) Reach about because it’s boot season and you need a new pair. Reach out because your favourite coffee is back for the season and you have to have one. Reach out because when you do, you remember that your life has many paths, and your child is just one of them. You’re still in there.

There’s going to be a time when all those early intervention appointments that kept you busy come to an end.

All those therapists you saw all the time and chatted with and had standing ‘dates’ with will move on to other clients and you’ll move on to a new schedule and you’ll realize you didn’t need to see your friends when you had people that really ‘got’ where you were in your life. Your regular therapists and various nurses were living the smallest details of your reality with you and you didn’t have to mention your new haircut. They noticed. But all of a sudden they are gone and 2 years have passed and where does time go? Meet a friend after your haircut. Plan a lunch after speech therapy. Call a friend on the drive to PT.

There is going to be a time when you finally catch a friend at a good time and they are going to say something like “Well I don’t want to complain, let’s talk about something else.”

You’re going to realize that your friends don’t want to unburden to you… you who have so much on your plate. They don’t want to talk about how busy they are, knowing you’re doing twice as much. They don’t want to talk about how tired they are, knowing “my kid doesn’t sleep” means your child actually doesn’t sleep, till like 5 am every day. They don’t want to celebrate their life with you either. They don’t want to talk about their travel plans or their kids’ successes because they know those things aren’t your reality right now. You’re going to realize they feel bad for you. Your life is kind of a downer, with all the appointments and all the uncertainty and the unknown. Let them know you do want to know what’s going on, that you want to hear what’s bringing them down and that you are excited for their lives, their kids (even though there may be days it’s hard to hear it.)

There’s going to be a time when look at the calendar and you realize you can’t remember the last time you ____________.

There’s going to be a time when you realize that, in addition to being tired and worried and so incredibly busy taking care of your special needs child, you are lonely. Having a special needs child is lonely work. And it doesn’t end. So friends who are “giving you space” during this tough time will be waiting a very long time to return. Like, forever. So don’t let that happen. Hang on to your friends. Be gentle when they stuff a foot in their mouths, and then the other shortly after. Don’t begrudge them forever for being happy, or make them feel less than for having an easier time that you. Let them know you could really use a friend. Ask if they can meet near you. Or accommodate a weird schedule. Or keep inviting you to things, even though you often have to say no. There will be days you can say “yes!” So say yes. Then go. Have fun. Make more plans. Hang on. Encourage them to hang on too.

Hang on tight.

 

Williams Syndrome Wednesday: 140 Characters CAN Change the World

by , on
Oct 21, 2015

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I recently wrote about the NYT best-selling novel that I stopped reading because the author had used the r-word (retarded) in the book, published this year. I had a big long rant on my own little blog and when I published the post felt very pleased with myself.

After a few days I realized I was still mad. It’s like when someone says something that you disagree with and instead of speaking up, you walk away and think about all the things you wish you had said out loud.

So I decided to tweet the author and let her know that I was affected by her choice of words and send her the post. My tweet didn’t ask much: I really loved Who Do You Love…until I hit the R-word. Please reconsider using it in future. I attached the blog post and figured that would be that. At least I went right to the source and let her know how I felt.

To my surprise, not only did she tweet back, she tweeted out the passage in the book (which takes place in 1993) and asked her twitter followers if they felt she had done anything wrong.

They responded in droves. Almost all felt like I was too sensitive… That I was asking that history be re-written… That the word wasn’t an insult then… One person posted on my blog saying “The bandwagons people jump on as a result of their offspring.”

My response to her was simple. The word IS an insult (and it was then too). I’m not the only one who thinks so – sending her to R-word.org and that she could be true to her character without that word, siting John Green’s apology for using the r-word in Paper Towns.

After the trolls went on for a while, other people who agreed with me started to join the conversation. Siblings, friends and other parents of individuals with intellectual disabilities jumped in with their take on why a writer in 2015 shouldn’t use the word – even in the context of 1993. They cited experiences, blog posts and videos they had created to help End the Word. It was very inspiring. That one little tweet could rally such a thoughtful and heartfelt response made me glad I spoke up despite all the mean tweets that were scrolling by.

And then Jennifer Weiner tweeted this:

Jennifer Weiner ‏@jenniferweiner  Oct 11@mommydoCA Which makes sense. I can rewrite in a way that shows that girls are privileged, insensitive, clueless and mean without “r word.”

She could re-write to remove the word.

She could be true to character and rewrite to remove the word.

I cried. That one little tweet could rally the whole community and a best selling author.

This all started with an open letter to Jennifer Weiner. I’d like to amend it to this:

Dear Jennifer,

Thank you. Thank you for responding, thank you for listening and thank you for understanding that the words we all choose can make a difference. When people use the r-word, it reinforces the stereotype that kids like mine won’t amount to much. It tells a teacher there’s no point in trying to teach her things – they must be beyond her grasp, and it tells a future potential employer that there’s no way she could do the job. It tells my son his sister isn’t worth much to the world and it tells her she doesn’t matter. 

Thank you for making her, and every individual with an intellectual disability matter – to you, to your readers. 

It’s just a couple of words to you, but to me, it’s a brighter future for my kid. It’s everything.

Oh, and now I can’t wait to finish the book. So thanks for that, too.

I’ve always known you can’t change the world by keeping quiet. But I’ve learned you don’t necessarily need a megaphone to do it. Sometimes 140 characters, a little passion and a little help from other people who believe in the same world that you do is enough.

Williams Syndrome Wednesday: To the best-selling author who robbed me of the ending

by , on
Oct 8, 2015

mommydo.comI used to be a big time reader, but these days, I’m often too busy to laze around devouring books like I used to.

I have work and family responsibilities including caring and advocating for my daughter who happens to have an intellectual disability. Getting to sit down and read an entire book is a luxury I can rarely afford.

Lucky for me, I was recently sent on a business trip. On a plane. Away from home. No inflight movie for me. I was thrilled to be able to dive into your the latest book (I’m a huge fan). I had no idea what it was about. I grabbed it and off I went.

It turns out I was hooked from page 1. The woman who had grown up with a heart condition? The parallel story of a mixed-race guy who growing up in the eighties? The emotional basketcase mom who carries the scars of raising a child with a medical condition that kept the mom on high alert from a touchy birth through numerous scares? So good. I really felt for her in particular. You captured what that feels like so honestly, and beautifully. I was moved to tears. Imagine my good fortune, I thought, in choosing a book that made me feel ‘seen’, understood and not alone. I was struck by the truth that was flowing off the page.

And then, not much further along, I was stuck again. And not in a good way.

In the midst of a conversation between the main female character and a friend in their teens, the one girl drops the R-word and the other girl responds with the same word. It was like a sneak attack in what felt like a ‘safe place’. Retarded. It pains me to type it out. Such an ugly word.

I was caught by surprise (just as I am when I hear the word in casual conversation). It came out of nowhere. It wasn’t like the book was full of language the pushes societal bounds. Twice you chose to write “the n-word” rather than spelling that one out. Why was the R-word so easy?

In a bizarre coincidence, as I closed the book, angry that you didn’t take the time to find another word, a beautiful little boy who happened to have down syndrome came bounding down the aisle past my seat.

That little guy deserved better, favourite writer lady. My daughter deserved better. I deserved better. There are more than a million words in the English language. Choosing to use the R-word is not just lazy on your part, it’s also irresponsible. Millions of people read your books. When you use the word, it tells all of them it’s ok to say it, read it, print it. It’s clear you don’t think “the n-word” is ok. How is this different? I know, it’s just a word, you have artistic license blah, blah, blah. But the thing is, it’s not just a word. Not to individuals with intellectual disabilities and parents and family members like me who advocate tirelessly for inclusion and acceptance. It represents prejudice, discrimination and its continued use makes an entire group of people seem “less than” in society.

I expected more than that from you – a writer. A mom. And now I don’t know what happens because I couldn’t bring myself to finish the book. If you happen to see this letter, I’d love to hear your thoughts on the matter.

Oh, and I’d like my money back.

Contradictions 

by , on
Sep 7, 2015

Three years ago, Shane headed off to his first day of Montessori. He walked the 1.2km to the school, was mostly potty trained and was already fluent in sarcasm. Alma is the same age today as he was then. Tomorrow he embarks on a new journey at a new school. Once we drop him off, Alma will start the new year at her 2.5h per day reverse integrated special needs preschool. We have a walker prepared for her and her TPSL block starts right off the bat. She’s been accepted into Physio at Holland Bloorview so has weekly visits there too. I am starting to speak fluent specialneedsparent.

When I applied for Shane to enter that Montessori, I had to outline my goals for his education. I wrote that I wanted him to be able to decide for himself what interested him, and develop a lifelong love of learning.
When Alma joined her preschool, I had to do the same. I wrote that I hoped someday she would learn to read, and achieve an independent life, in whatever form that may take.
I hope tomorrow both of them get one baby step closer to those goals.
Today, as I write this, I’m actually standing in brilliant sun and walking in the pouring rain at the same time, which seems fitting. 
That’s exactly how I feel.

  

Williams Syndrome Wednesday: #winparenting

by , on
Jul 31, 2015

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One of the little secrets of parenting that no one likes to talk about is that we all want to win. I know, I know, parenting is not a competition.

But it kind of is. It’s a competition with yourself to have your kids turn out in the way that you believe is best for them. I’m not talking about making them something they’re not. (Though sadly, some people see it this way ).

I mean having kids choose to play a sport you played, or go to your alma mater or love reading as much as you do. For instance, my typical child loves language. He has a broad vocabulary, a sense of humour and grasp of sarcasm that exceeds his years and I love it. I’m a word person and I’m so pleased that he follows in my footsteps  – #winparenting. I know others who are stoked that their children have grown to pay no heed to expected gender norms, and others still who love that their kids would much rather chase bugs than watch TV. win. win. win.

With Allie, my wins very different. They’re functional wins. A word! yes! A movement that means we’re closer to walking. Hells yeah. But my heart still aches when I think of all the little wants and wishes that will likely never come to pass in the way I imagined before.

Tell a book lover that there’s a chance your child will never have the capacity to read at all, or a runner that their child may never be surefooted enough to make it around the track. Those are the little losses that make receiving a diagnosis sting in the darkest parts a parent’s heart.

As one who tends not to take no for answer, I’m inclined to see those areas as ones that need special attention. They may never happen, but I’m not planning on letting them go without a fight.

As I was watching the inspiring opening ceremonies of the Special Olympics World Games in LA this past weekend, I was very taken by the stories of the athletes, the joy on the face of everyone in attendance and the history of the Special Olympics movement. Wow. I went through a serious amount of Kleenex.

There are countless athletes there this week with the same syndrome as Allie and they are kicking butt. Medals in gymnastics? Swimming? Amazing.

I was particularly taken by the Special Olympian Oath.

“Let me win. But if I cannot win, let me be brave in the attempt.”

It will never be me in that athletes parade, but I feel the parents in the stand live the oath too in their own way. In the face of every Mom and Dad cheering, supporting and reveling in the day, it was clear that getting from where they started to the games was a hard fought battle for the whole family. In making it there, they were already winners.

Parenting is a hard sport. Parenting a child with exceptional needs is harder.

We still want to win on our own ways. Sure, we’re told to expect less. But should we listen?

I think I’ll choose not to. Not after seeing those 6500 athletes march proudly into the stadium. Not after seeing those parents rejoicing in the stands.

From this day forth, I will bring all my fullest hopes to the parenting game. I will believe harder and push further and, if I find myself close to giving up, I will find a new way. I will not let others low expectations set the bar for what might be achieved.

Let me #winparenting.

Let me win. But if I cannot win, let me brave in the attempt.

PS: Two days after seeing the Opening Ceremonies, I enrolled Allie in the Special Olympics program. Did you know they start at age 2? She starts in the fall. I can’t wait. Maybe she’ll be in that athletes parade one day.

Williams Syndrome Wednesday: The Long Pause

by , on
Jul 8, 2015

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It’s begun.

The long pause after people say Allie is adorable and ask how old she is. She is small for her age, so I suppose she could be mistaken for her developmental age. People are really thrown when their 10 or 12 or 14 month old is the same size and further along. They get uncomfortable. They’re not sure what to say. There’s a long, long pause before then say again, just how cute she is.

Sometimes I let them off the hook and tell them about WS and how it affects her. And sometimes I just don’t feel like explaining her. Sometimes I just talk about the weather or the park we’re in or the boy.

At the wading pool, she’s sitting, splashing, squealing. She’s smiling and happy. At that moment, it’s the most important thing about her.

I am definitely a fierce advocate. I strongly believe that spreading the word about Williams Syndrome is the key to inclusion and acceptance and so on.

But sometimes, I just want to let a little girl splash in a pool.

In the middle of that long pause, I hear her laughter, her little songs, her joy.

My words about her syndrome would drown it out.

Sure, people would learn more about what makes her different.

But they’d miss all the parts that make her special.

Coulda beans are the cruelest legume

by , on
Jun 22, 2015
There are quiet little moments when they’re small and still. Tiny little specs in the mosaic of a full and complex life. Work, family, whatever else you spend your time on.

Then, from nowhere, they pop up 3 sizes, 3000 sizes and suddenly they take over. All you see, all you do. Everywhere you look, damned coulda beans.
It’s not like you put them in a pot to soak overnight.
Nope, they sprout up all on their own.
This week, the end of ‘kidergarten’ (montessori casa) for the boy and the impending school switch to grade one brought the beans in full force.
I used to walk my pregnant self to his school imaging both kids growing and learning under that roof.
Instead, he’s being sent to grade 1 at a public school as his current school can’t accommodate his sister, and our finances can’t accommodate all her accommodations and his tuition.
He’ll be fine. She’ll be fine. It’s me that’s not fine.
IT WAS SUPPOSED TO HAVE BEEN DIFFERENT the coulda beans shout.
Beans aren’t supposed to talk. Shut up, be quiet… turns out beans don’t listen either.
Then they bring their friends.
They sing “they coulda been going to the same school and running through the park holding hands and wrestling and snuggling and calling each other names and playing copycat and driving you crazy”.
“You were supposed to buy cute sandals and go to ballet class and chase a pink blur in fairy wings and…” they just keep going, spilling out all those “things” all over everything.
deep breath.
little cry.
deep breath.
ugly cry.
deep breath.
Straighten your hair. Wash your face. Hug your kids.
deep breath.
Try to remember there’s no point in getting caught up in what a bunch of beans have to say.
Watch those f’ing beans shrink back and away, knowing they’ll be back, and tell yourself you’ll be ready next time. More prepared.
Buy water proof mascara. Who are you kidding?
Accept they will always be coulda beans lurking in the shadows.
But know if your heart if you spend all your time there, in the shadows with the coulda beans, you’ll never spend any time in the light.
And despite all that has come to pass, the light is a glorious just the same.
 Glorious Light

Williams Syndrome Wednesday: R you kidding?

by , on
Jun 13, 2015

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The R-Word. It’s a hotly debated topic.

I know right? What’s the debate? It’s not a nice word. It makes a whole class of people feel bad. It’s used by bullies to make perfectly normal people feel less than.

But amazingly, just about every time I tell someone they shouldn’t use the R word after they r-bomb it onto a conversation with me or it appears as someone’s post on my Facebook newsfeed, I get a whole host of excuses. I’ve heard “yes, I really need to stop saying that because now my kids are saying it”. I’ve heard “I’m sorry, I was just really tired”. I’ve heard “I apologize that you took it personally but I’m not apologizing for the joke because that was fucking funny”. I’ve heard “Wow, I didn’t even realize I said it”.

Huh. Rarely have people said, “You’re right, I never thought about it that way, there’s no place for that word in my vocabulary”.

Now I’ve also heard “what’s the big deal”, “I didn’t mean it the way you think” and “I would never say it to a person who was actually mentally handicapped” (um, the correct term in case you’re new here is intellectual disability).

If you are one of those people who still find the word makes it’s way into your conversations, I urge you to use the N word one time for every time you use the R word in conversation and see how that goes.

As in…wow, this project is so R-word. Those N-word have no idea what they’re doing.

Or I can’t believe you did that. You’re such an R-word. I don’t know why I hang out with N-word like you.

Maybe it will help you come to understand that saying the r-word at all makes you a bit of an asshole. When you say it to me it makes you a giant asshole. When you say it without even knowing you say it… asshole. When you tell me I just can’t take a joke or that I’m too sensitive, then you’re simply missing the point. (and you’re an asshole).

It’s not about me. It’s not personal. It’s universal. It’s human rights. It’s about being a good global citizen. It’s about the reason we don’t say the N-word. And how the G word is about pride and not prejudice, and why Native Canadians and Inuit are referred to the way they are.

When you choose to use the R-word you’re saying you (as in “I’m such an r-word), the thing you’re doing (this is so r-word) or the person you’re saying it about (you’re such a r-word) is stupid, slow, pointless, dull, unable to grasp what’s happening around you, dumb (another word that is used in a way that’s not what it means). It’s derogatory. It’s mean. And it’s just not an acceptable word anymore.

If you need further encouragement, you can watch one of the 195 million videos that come up on a google search for End the R Word.

It’s not personal.

195 Million videos.

Don’t tell me I just can’t take a joke.

Don’t tell me you won’t say it in front of me.

Don’t be an asshole.

There are estimated to be 1,025,110 words in the English language.

Pick another one.

Williams Syndrome Wednesday: There may not be a plaque

by , on
Jun 3, 2015

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There may not be a plaque with Allie’s name on it, or a wing of a hospital named after her or all the Williams Syndrome benefactors that are rallying around our fundraiser.

There will likely never be enough zeros on our efforts to be considered newsworthy.

No hand shaking photos. No press release.

There will be a lot of hustle. A lot of late nights and early mornings. A lot of no. And I mean A LOT of no, I can’t help.

But there is also yes. An echoing chorus of yes. Each yes turning someone else into a yes, I’d love to help.

And $5 raised becomes $50, becomes $500 and so on.

Maybe it’s that cute little face. Maybe it’s the conviction of a parent that makes someone with no vested interest want to help.

Maybe it’s just human nature to be part of something – even if it’s small.

Doesn’t everything start out small?

Maybe the fund that just got that plaque and that wing started out small too.

And $500 becomes $5000, becomes $50,000 and maybe $50,000 becomes even more.

And with that comes awareness. Education. Research.

With that comes the best chance for the best life for Alma and everyone living with Williams Syndrome.

And that’s so much more rewarding than a plaque.

Besides, I’m pretty sure if someone made a plaque, I’d try and auction it off for more money…

Thursday the 4th of June is the last day for the 2015 Auction for Alma.

Stop by. Make a bid or a donation to support Allie and all families in Canada living with Williams Syndrome.

Williams Syndrome Wednesday: The other shoe dropped

by , on
May 20, 2015

Have you seen this shoe? Lost Wednesday between Heath St. and Yonge St and Bloor Station – east-west plaform. Travelled south on Yonge to St. Clair and then south on the Yonge line to Bloor, tranferring to the Danforth line.

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I have seen the shoe and the jaw dropping bill that came with it.

It is one of two lovely shoes, one of which has taken a vacation from my daughter’s foot and landed somewhere in our fair city.

She’s a kids, kid’s lose shoes, I get it. On a philosophical level I totally get it.

But for me it was an all out, full stop, leave work emergency.

You see, these shoes…for a baby…cost almost $250. Yes – these pink and black combat boots for babies cost a LOT.

And the thought of losing one put me over the edge. Not only are they supremely pricey – they also come from a store that is an hour drive each way, and is only open 9- 5, five days a week. So replacing these not-so-cute boots for baby also costs 2 vacation days – one for the initial measuring and one to go for the fitting once they come in four weeks later.

It also means at least 4 weeks without these shoes, which provide the stability for her to use her walker and hopefully in the not-too-distant-future, walk independently. She needs the shoes.

Shoemageddon also brought one of those moments. Those “these are the real truths about having a kid like Alma” moments.

Of course there are the BIG DEALS – the health issues, worries about the future and education, the possibility of employment, will she be able to live independently, will anyone come to her birthday party? Will she be the one that people say “nobody can stand that kid, she just bugs people”?

This was one of the everyday moments that remind me that every little thing is just a little bit different. That losing a shoe brings a wave of dread. That she still can’t walk and who knows when she will. That her shoes cost as much as a week of summer camp for our son. Will we have to choose or can we swing both?

We kind of skim along the surface most days. We know there are differences. We know there are challenges. We try to ignore them and just enjoy both kids as they are.

But then, something small happens. A little shoe drops, and you’re right back in the thick of it all over again.

If you see the shoe, please message me or tweet me @mommydoCA

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