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.
Yes, I said Happy Party. And yes, #WSHappyWalk is about a rare syndrome called Williams Syndrome. A rare syndrome you’ve likely never heard of, unless you’ve ever spent any time in a room with me, and then you’ve probably heard more than you care to about it.
At some point in that conversation you probably thought, “wow, I’m glad that’s not me.” And you likely had to stop yourself from making the pity face. And I get it. Having a child with a rare syndrome that comes with the potential for countless medical challenges – cardio, kidney, gastro, hearing, sight and more, physical challenges, learning difficulties, social challenges and all sorts of other little goodies isn’t a walk in the park…but that doesn’t mean it isn’t also filled with joy.
Our family has small pleasures and belly laughs. We applaud both our kids’ milestones and we challenge those around us to see our daughter with Williams Syndrome through the same lens through which they view every other child. We look for inclusion, and stand up to barriers. I seek out other families walking the same path and am on call for those just starting this journey (even though our journey has only just begun).
I also weep with families whose beautiful children are taken too soon, leaving this world a happier place for having been here.
It is true that it’s much more likely that our children will be taken too soon.
This is why I also work tirelessly to spread awareness and raise funds. Not because my daughter’s syndrome is so sad. But because I can’t bear the thought of all the happiness that is packed into my tiny girl could leave us, unexpectedly, in a sudden event, for no reason except we just don’t know enough about Williams Syndrome.
So please, please join us on Tuesday May 31 as we take to Twitter to raise awareness for Williams Syndrome and spread the word about the #WSHappyWalk.
We’ll be chatting about Happiness, Williams Syndrome , the #WSHappyWalk and how you can help spread awareness. Plus, you could win an iPad mini courtesy of Telus, an Instax mini8 camera from Fujifilm, and more. There is now over $600 in prizes in total.
I’ve recently been told I’ve really taken to this whole ‘advocacy thing’. Which I suppose is true, but doesn’t really say all that much about me. Other than that I am a parent. And that’s what parents do.
I’m quite certain that if you asked all the parents sitting at any given hockey rink at 6 am on any given Saturday, many wouldn’t have pictured themselves freezing their butts off 2-3 mornings a week. Ditto for the dad’s sitting at ballet recitals talking about turnout, mom’s debating the relative strengths and weaknesses of the Ninja who make up Sensei Wu’s team in Ninjago, or dog owner toodling around a park at 6:30am in the dark at -15 waiting while their fur-baby does their business.
I would never have guessed that I would be able to name every piece of heavy machinery at a construction site. But my son was a truck fanatic when he was two, and so I became a truck fanatic. It gave us something to talk about. It expanded his vocabulary. It was our thing, going to see the construction sites, chasing the garbage truck down the street. Sneaking behind the barriers of backhoes parked in the lane.
He needed someone to help him explore his passion for trucks and that someone was me.
My daughter is no different. She needs an expert in her syndrome. She needs someone to navigate the system to ensure she has all the services she can get to help her reach her full potential.
She needs someone to rage against a future that predicts that she will live in poverty, have an 83% chance of being sexually assaulted, but only a 34% chance of having paying employment.
Yep. Depressing right? It would be, if I didn’t believe it doesn’t have to be like that. If I didn’t believe the world can change…that things can change. That you can change.
I changed. How could I not?
My daughter needed me to become an advocate – for her and for every child like her.
So yeah, I really took to the advocacy thing. Just as this summer, when my boy joins his first team, I’ll really take to the Soccer Mom thing.
My #resumom just keeps growing. Champion of the construction site mom. Lego piece finder mom. Soccer Mom. Advocate mom. Speech therapist mom. PT mom. OT mom. System navigator mom. Williams Syndrome expert mom. World changing mom.
Or just mom. Just like every mom… or dad.
We all become the parents our children need us to be.
That’s what I felt to today while at developmental play group.
Every week Obi and I participate in a play group that integrates typical kids with those who are experiencing developmental delays. Some are preemies who are just a little behind. Others, like Obi have a diagnosis. And the rest are just typical kids who come to take advantage of the program which includes free play, social snack time, gym time and music all in one fab morning a week.
The group takes place in a specially designed room for the 0-2 set in a building that houses an integrated preschool. It also caters to both typical kids and those with physical disabilities and/or developmental disabilities.
I think of this place as a ‘safe’ zone – where Obi is just one of the gang.
Today, there were 2 incidents that ticked me off.
The first was during snack time when a mom, who was having trouble opening a sippy cup, said “I’m so handicapped sometimes.” REALLY? Who says that? And who says that HERE? Geez, bad choice of words. Bad company to use them in. Just bad.
Then, not 45 min later, another Mom, in the room with just me and the mom who earlier made the remark above, used the R-Word. Yep. In the one place that accepts kids with all levels of ability. In front of one of the Moms known to have a baby with a diagnosis (ME) that would fall under the umbrella of that word back in the day.
I couldn’t let that one go. I said “I’m sorry, you just can’t use that word anymore. It’s not acceptable.”
She sort of looked at me like I was the word police and the other mom asked “what word? Did she say something bad?”
“Yes.” I said. “Retarded.” (I kind of threw up a bit in my mouth as I said it outloud) “It’s not an appropriate word to use, especially around people like my daughter”.
Well, she launched into an apology that might as well have come with a shovel to help her dig herself further into the hole she was creating as she spoke.
There was “I know I have to stop saying it.” “I just can’t help myself.” And, “When I say it at home I have to tell my son it’s a bad word and he shouldn’t use it.”
OK – I get that it’s been a part of the vernacular for quite some time and habits are hard to break. But to use that word enough that you need to warn your child not to repeat it just isn’t cool. NOT COOL Mama.
Especially not cool in that place. ESPECIALLY. What if some of the preschool kids in the next room heard you? What if a parent of a child with a developmental delay heard you?
Oh wait. They did. I DID.
And now I really don’t like you.
I’m pretty johnny-come-lately on the mission to take the R-word out of conversation but there is a whole movement.
In case you’d like to read more about what people are doing and why you too should never, ever use the R-word again, visit Spread the word to end the Word.
And, if you do feel compelled to drop the R-word, be sure not to do so at a babygroup/school for kids with developmental disabilities. Or in front of me.