I had the wonderful privilege of attending the WSA Williams Syndrome Convention in Columbus Ohio last week. As the ambassador for Canadian families, I connected with friends made in years’ past and made new friendships with fellow Canadians and with parents and individuals with Williams Syndrome from all over the US.
Attending a big gathering of Williams Syndrome families is exceptionally rewarding. The information presented is invaluable, even if it is a little overwhelming. And the tactics, strategies and trial and error shared by other parents give a real, honest, uplifting and sometimes heartbreaking look into the lives of those who’ve walked this path before you.
Dr. Mervis says it, then she says it and then she says it again. Kids with Williams Syndrome who are taught to read with phonics and only phonics learn to read. Those who aren’t, don’t. I’ll be bringing this up again and again as we enter school this year as reading is big on our list for Alma’s future.
but I’m a bit of a fire cracker, so for me, the important part was know your rights, and use them, not your ragey feelings to make your valid points. As I encounter resistance time and again with my instance on an inclusive education with appropriate support, I am gathering all the laws, policies and support I can to ensure I am seen as someone who is advocated for my daughters rights, not just another “know-it-all-parent trying to bend the system for her special snowflake.”
This is one of the only medical questions I was curious about at the conference. Alma has been well (knock on wood) for the most part, but every now and again I feel like she’s smiling through something. I stopped at the “Doctor is In” table and paid my 5 cents to speak to the wonderful Marty Levinson M.D. about this and he said it was something to be aware of. I’ll keep my guard up and will insist for a little extra investigation next time… so we don’t find ourselves in the ruptured ear drum after infection situation again.
And, ensure the teacher won’t let her ‘cute’ her way out of hard work. I asked Dr. Mervis what I should look for in a teacher and if she had any advice for pre-K teachers of children with Williams Syndrome and that’s what she told me. Our children should be held to high standards. They will respond well to kindness. And they are always trying to duck responsibility and if the teacher lets them, they’ll never achieve their full potential.
This was probably the lesson that has given me the most to think about. While I have a few thoughts that I bring up time and again, I haven’t gone through the process of discussing Alma’s future with my husband and writing down our vision for her in the next few years, for the rest of her school years and for her adult life. As part of the discussion about this vision during an advocacy session, there was some great advice about using it in meetings like IEP meetings to gauge whether the suggestions made by committee were pushing enough. The suggested line was “how are we going to achieve our families vision for our child’s future if she doesn’t have access to _________?” Again, it takes the onus off the ragey parent and ensures the conversation stays centred around meeting and exceeding potential. Love it.
There is also a robust breakfast and a family friendly dinner. These three drinks come in handy after you spend 8 hours concentrating on all the ways you can help your child (and all the other children) reach full potential. You may want to consider staying at one the next time you travel with children.
I look forward to welcoming families from all over North America at the Canadian Association for Williams Syndrome National Conference in Toronto next summer. Although I had to sit out the last 2 sessions due to information overload, I am already filled with questions and am eager to listen and learn from Williams Syndrome experts from all over Canada and the US – parents and professionals alike.
Part of my New Years #thive2016 resolution is ensuring the whole family thrives. So over the weekend I thought we should do a typical family activity. We should make a craft.
Not only do both my kids like to make things, Allie gets to work on some of those “therapy skills” when she’s doing crafts at school. Why not do one at home?
I found an easy craft over at The Inspired Home and rounded up all the supplies. This isn’t something we’ve done at home much so I had no idea what to expect. I even tried to google “home craft ideas for kids with intellectual disabilities” but no luck.
When the time came to prep the craft, my 6 year old son decided he WAS NOT making a heart. Off to a great start. I got everything ready and tried to show Alma how to make her heart but she was much more interested in dumping the bits of tissue paper and peeling up the tape to release the contact paper.
There was a time not long ago when I would have packed it all up and yelled “forget it” (not proud of this) but instead I showed Alma again. And again. And again. I handed her individual bits instead of letting her dump the container. We sang a song as we stuck down the bits.
My husband came to give me a hand with the cover contact paper so we could focus Alma and finish that part.
My son came over to talk about the craft he DID want to do, so we got that stuff out and he and Alma sat together laughing and bickering and glueing and fighting over the safety scissors. They shared. I helped my boy glue a snowman. I hung Alma’s heart.
I also felt a weight lift from my heart. We’re just a regular family doing regular things. Making decorations for Valentines Day. Screwing it up a bit. Feeling proud anyway.
I hope the next person to google “home craft ideas for kids with intellectual disabilities” sees this post and decides to throw caution to the wind and make Valentine’s Hearts from The Inspired Home or some other neat thing that catches their eye on Pinterest. I hope they don’t wait to try something like I did, or search for a special list of special ideas for special kids.
Every craft a kid makes is special.
Moments like these? Special.
Learning that undivided attention, some time to horse around, and seeing our proud faces as we hang up their creations is just what they need? That was pretty special too.
If you’re interested in making the Valentines Day Stained Glass Toddler craft, head over to The Inspired Home for all the supplies and instructions.
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.
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.
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:
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:
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.
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.
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.
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.
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.
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.
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
I’m in the midst of doing some research focused fundraising.
There have been a number of people who’ve asked me if there’s a cure for Williams Syndrome, or if there will ever be.
For Alma, there will be no cure. The chain of 28 genes that is missing from chromosome 7 in her body can’t be replaced or repaired. It is a part of how every system in her body functions. One of the genes missing, the elastin gene, means the various tissues in her body don’t resume their shape after stretching or contracting.
If you were to suddenly replace the missing genes that caused her brain to be smaller than a typical person, with neuropathways that are larger in some areas than yours and mine, and smaller in others, her brain couldn’t suddenly revert to a typical brain.
There is some research that suggests someday, they may be able to use gene therapy to make a change in babies not yet born…but that’s a long discussion for another day.
Though the cause of Williams Syndrome seems simple, 23-28 missing genes – the ramifications of the deletion are far reaching – effecting most systems of the body.
But that by no means that research is futile in improving the lives of people like Alma who happen to have Williams Syndrome.
Far from it. There are people researching the best methods for teaching kids with WS to read, curing illiteracy and helping to increase the odds of future employment.
There are others researching why kids with WS suffer sudden cardiac events, often resulting in death, when individuals with WS receive anesthesia. This can mean the difference between life and death, even during simple procedures like having ear tubes placed.
There are folks studying why some have debilitating anxiety, why kids with WS have too much calcium, what techniques can be employed to help people with WS understand the difference between a safe person and one who will cause harm, how to make a friend and read social cues. Others are studying how to manage the serious cardiac, gastro, endocrine, digestive, cognitive, behavioral, social, epidermal, intellectual and developmental challenges that come with WS.
And in turn, they are applying these learnings to unlock clues for other issues and syndromes. Some believe a ‘cure’ for Autism lies in the overly friendly personalities found in WS. And there are a host of other questions they feel can be answered by looking at the unique mosaic that is Williams Syndrome.
So is there a CURE? No.
Will the research make a difference in her life? There is no doubt.
Research is a CURE for despair and a catalyst for hope.
And who couldn’t use more of that?