Starting school with disability #WilliamsSyndromeWednesday

by , on
Apr 12, 2017

mommydo.com || starting school with disabilityThere are two parts to registering a child who is starting school with disability. There’s the functional part – who do you see, what do you need bring? And then there is emotional part. This is not about the functional part.

Enrolling our daughter in school was the hardest thing I’ve dealt with on our parenting journey. So hard that it’s taken me a year to talk about it. But today, when I saw that another mom I know is in the same place I was last year, I felt it was time to open up.

I’m going to skip all the drama that happened between when I started the process (and the tears) of enrolling Alma in school and the first day we put her on the yellow bus to let you know that she has an amazing placement. Some even call it a unicorn placement as it feels like the kind of placement you only hear about. It is perfect. But it is not the placement I was crossing my fingers for at this time last year.

And I now know that’s ok.

I learned a lot along this journey. Hopefully some of it will help you, as you work your way towards the right placement for your child.

Williams Syndrome Wednesday: 5 lessons from #WSA2016

by , on
Jul 11, 2016
Williams Syndrome Wednesday Lessons from #WSA2016 - mommydo.com Featured Image

Williams Syndrome Wednesday Lessons from #WSA2016 | mommydo.com 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.

Here are my top 5 lessons learned at #WSA2016

  1. Get hooked on phonics.

    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.

  2. There was something about “you catch more flies with honey”

    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.”

  3. There is a chance Alma has a high pain tolerance so be mindful when she’s just ‘shaking things off’.

    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.

  4. I should hope for a teacher that is kind but firm, and will hold my child to the same standards as all children.

    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.

  5. Create a vision statement for Alma and use it as a lighthouse for all decisions.

    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.

*6 – Bonus Lesson – The Drury hotel chain offers 3 free drinks for adults every night.

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.

See you August 2-6 2016 in Toronto, Canada

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.

 

 

 

 

Williams Syndrome Wednesday: An Open Letter To Justin Trudeau

by , on
Mar 16, 2016

An inclusive school system would see my children as equal

dear-mr-trudeau-blog

 Dear Mr. Trudeau,

I just watched a video in which you spoke of the tremendous value of the diversity in our public school system. I, too, value the ethnic diversity in my son’s public school in our neighbourhood. Sadly, my daughter won’t get to experience it.

While we have worked tirelessly to include those of every race/ethnicity, culture, religion, gender, social class, and sexual orientation in our schools, kids with disabilities don’t always make the cut…at least not always in the school closest to home. Kids like my daughter are forced to attend schools that can be up to an hour away by bus. My sweet little girl has a rare syndrome called Williams Syndrome. You may recall my mentioning it when we met in the Distillery District in Toronto. Her constellation of challenges and strengths don’t fit with the typical curriculum and our local school doesn’t have adequate support. This means that rather than attending our local school with the kids on our street and her brother, she’ll be bused to another school somewhere in the GTA. We don’t know where she’ll end up. The long process of her placement is just begun and we could be waiting months to hear where she’ll land.

This also means that her sibling will head to school each day, to a school that prides itself on diversity, and never see another child interact with a disabled sibling. He won’t see walkers, wheelchairs, sign language, or kids struggling with profound speech delay. He won’t get to celebrate his sister’s achievements with her Special Olympics teammates at school and he won’t get to have her come and applaud a future science fair project of his. Maybe he’ll unlock a new way to help kids with learning disabilities tell time, or maybe not, since his teachers won’t understand why it matters to him – having never met his sister. The other children in his school will lose the opportunity to interact with exceptional kids like mine and discover how the commonalities they share are more important than any differences between them. 

 I realize in our mosaic of a nation, we strive tirelessly to celebrate what makes us alike and what makes us different from each other. We are doing an excellent job of raising a generation to pride itself on inclusion. I fear that unless we include kids with disabilities in all schools, we will never truly achieve the diversity you speak of so proudly.

 In the video you said “It’s not easy. You can’t do it overnight. A diverse and open and inclusive education system and open circle of friends is what we have to work towards in our communities.” I , and thousands of other parents, need your help now. Help to work on this diverse and open education system with an open circle of friends in my community…and every community. So my kids can go to the same school, have the same friends, belong to the same community.

They too, should benefit from the power of diversity in education in Canada.

Williams Syndrome Wednesday: See the Hope

by , on
Feb 10, 2016

Williams Syndrome Wednesday, See The Hope, Mommydo.com

We’re about to deliver something very precious to you, and without your support, it won’t make it.

We’re entrusting our sweet little girl to you, but that’s not what I’m talking about. When we drop her off to you, we’re delivering our hope. Take good care of it.

We hope that she will be challenged but not left behind. We hope that she will be included, but also be seen as an individual that needs more. More to learn. More to succeed. More to thrive.

She will need therapists, friends, caregivers, nurturers, protectors, cheerleaders and teachers. There’s a good chance that the teacher will, at times, need to be all of the above. Unless you intervene and insist on extra support. Unless you put hope before budgets, potential before policy and belief in a child before what’s best for the board.

She will need you to hope too. And hope isn’t always easy. Believe me, I know.

What’s easy is reading about a diagnosis and thinking there’s no point in pushing harder. What’s easy is choosing what is practical over what is possible. Or thinking you’re doing the best when you come up against the word ‘no’ once…and giving up. Making people say no over and over makes you unpopular.

It’s hard to be unpopular. I get that. I do. It likely won’t take very long before I am unpopular to you.

Before that happens we need you to take one for the team and ask yourself if maybe you can do better. Wouldn’t it be nice if you and our family and hope could be on the same team?

We could find a way to get little Allie what she needs so she can navigate her way through the school and not get hurt, lost or simply leave.

Or how about a way to harness all the research that’s been done on teaching kids with Williams Syndrome how to read and teaching her that way, instead of how all the other kids learn.

Or maybe a way to let her have the education she has a right to – with all necessary supports – in her community so getting to go to school with her brother won’t compromise her chances for making something of herself.

And maybe every time you get faced with someone who says that’s too much to ask, it’s not how we do things, or she’s not worth the investment, you’ll remember the day we delivered our hope to you. You’ll see the hope. Not all the things that stand in her way. You’ll be the one who makes the difference for her, instead of the one who sees her as someone who doesn’t deserve to be hoped for.

The day is just around the corner. The day we deliver our daughter and all the hope we have for her to you.

Stand out front and welcome her in and see that hope. Then look me in the eye and see all the hope I have for you, too.

 

 

 

 

Williams Syndrome Wednesday: Crafting with Exceptional Kids

by , on
Jan 20, 2016

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.

Williams Syndrome Wednesday- (1)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.

Williams Syndrome Crafting Special needs

Valentine’s Day Stained Glass Toddler Craft from The Inspired Home

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.

IMG_9908

Williams Syndrome Wednesday: Crafting with Exceptional Kids

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.

Williams Syndrome Wednesday: Working Together

Working together

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.

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Valentine’s Day Stained Glass Toddler Craft from @theinspiredhome

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.

IMG_9915

Siblings

Moments like these? Special.

Williams Syndrome Wednesday: Fun with Brother

Fun with Brother

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.

Williams Syndrome Wednesday: Permission to Let It Be

by , on
Apr 4, 2014

Sometimes it’s nice to hear someone say “Things are ok as they are.” This week’s dose of chillax came from the special feeding clinic that baby Obi now attends.

Feeding has been a huge struggle right from day one. We finally got her eating pureed baby food at about a year. We’ve been trying to increase textures but not having any luck.

And do you know what the experts said? Let her eat purees. Thicken them slowly over months and months. Stop pushing her to move ahead faster than she can.

It’s ok.

You know, it’s not ok for me sometimes. It’s not ok that all her friends are running and starting to talk and growing so big and she’s still sitting tall, hanging out, screaming from time to time and eating purees.

It’s not ok for me, but she is perfectly happy. She’s doing what she’s doing. She’s loving life.

You know what else they said?

It’s ok.

It’s ok that you’re disappointed that things aren’t going as you planned. It’s ok that you feel sad, jealous, frustrated…whatever you feel.

They also said she looks good, healthy, feeding well, eating in step with her current development.

So I’m gonna stop trying a million ways to get her to eat what she’s not developmentally ready to eat and I’m just gonna feed her what she likes. Pureed food, some puffs, some pasta stars, some mum mum crackers and I’m gonna cut myself some slack.

And I’m feeling OK about that.

Williams Syndrome Wednesday: 1 in 20,000 is the lonliest number

by , on
Mar 27, 2014

Yeah, I know, I’ve missed a few Wednesdays. I totally had ‘that thing’ happen. The one where you have something on your mind and you really want to say it – but it’s such a big friggin’ downer for you and everyone else that you don’t say it. And then, as it’s all you want to say, you can’t think of anything else to say, so you just say nothing.

Yep. I’ve said nothing these past weeks because I don’t want to actually commit these words to print “it’s just not the same”.

There, it’s out there now.

I have had a vast number of people remark about how the motherhood journey is a common experience (and if you’re one of them, I am SO not calling you out in particular) and the more I hear it from Moms – typical everyday Moms – the more isolated it has been making me feel.

Partially this is my fault as I tend to gloss over the sheer logistics of tending to Obi’s needs. I am also guilty of attempting to adopt a normalcy to her condition which then leaves people without a sense of how far from normal her first year has been and what that has meant to our family. Even as I’m typing I’m cringing at my own words – really, what is NORMAL anyway?

But, truth be told, as someone who parented a typical child before Obi came into our lives, having her is just not the same as a typical kid. The “hopes and fears”, the “good days and bad”, the “just trying to get by sleep deprived” and the “constant worry” aren’t the same.

I hope my child will speak. I fear my child won’t walk, or eat solids that aren’t pureed or every be invited to a birthday party not thrown by someone who is like family. On good days I have been able to get food into her, I have not missed an appointment, followup, received bad news or thought too much about her future. On good days we learn we don’t have to come back to a particular specialist for a year – unless we see any of a set of scary symptoms. On bad days we learn she isn’t seeing well, had flunked her hearing test again, her calcium levels are rising. On bad days we get referred to rule out potentially debilitating seizures, get the run around for therapy funding, realize we have no idea what the future holds for her. On bad days people ask what’s wrong with her, if she’s going to be ok, if she’s ‘healthy’, if she’ll ever walk or talk and I have to answer we hope so.

In 12 months she’s slept through the night 10 times. The three months before that, she didn’t wake up. The rest of the days she got between 3-5 hours of sleep between 8 pm and 8 am. We take turns.

With my typical child I worried about eating, sleep, development, if he should have screen time, if he was being spoiled, was he likeable. Now I worry about hearing, sight, mineral levels, blood pressure, muscle tone, tippy toes, W sitting. I worry that she will never eat a cheerio, that she will be bullied, abused, invisible. I worry that I won’t live long enough to take care of her as long as she needs care, that she’ll wind up in poverty somewhere, that, once her brother has a family of his own, she’ll be alone.

I just worry.

I manage her schedule of what will soon be 12 doctors, specialists and therapists. Some she sees by-weekly, others quarterly, others yearly. I keep track of research, minute shifts in development, growth, eating habits, sleep habits, tests, procedures and behaviour that might indicate a need to see one or all of the 12 professionals that tend to her care.

I find foods to try, toys recommended by therapists, routines that might help promote sleep, cups she might hold, groups that will welcome her.

I work. I parent another child. I cook. I think about cleaning…

I love her without question and I do all of this and would do 10 times more…if required.

I’m not amazing, or a super hero or anything like that. I’m just doing what I need to do. Or rather, what she needs me to do.

I’m a mom. And I know we mom’s are a time a dozen.

And it IS true that, like others moms, I have hopes and fears and dreams for the future.

But it’s just not the same.

It’s just not.

 

Williams Syndrome Wednesday – As Long As She’s Healthy

by , on
Oct 9, 2013

I overheard someone talking to a pregnant woman the other day and realized something. I have a little confession to make. I’m carrying around a little guilt. And it’s probably nothing, but it’s weighing on my mind.

I heard the expectant woman say “the phrase.” I’m willing to bet every pregnant person has said it at some time or another. I said it.  I said “We just want a healthy baby.” And, “I don’t care what we get, as long as it’s healthy”.

We all say it – but we don’t really think things will turn out any other way. Do we?

“Hello Guilt? It’s me, Mommy. I take it back. I don’t just want a healthy baby. I want my baby.  And she may not be perfectly, ‘healthy’ but I really do want her anyway. Give me my WILLIAMS SYNDROME baby.”

Yep. We don’t really spend much time thinking about what will happen when baby isn’t the kind of healthy we assumed we’d get. And maybe we should.

I know, nobody wants to scare the fragile pregnant people. But I hazard a guess that if we spent a little more time talking about some of the possibilities that lay on the outskirts of healthy, it would take the tiniest bit of the sting out when it happens.

Maybe the world would be a little less shocked when you mention your child has special needs they’ve never heard of. Maybe people’s faces wouldn’t betray the moment when they think “I’m so glad that’s not my child”. Maybe they’d put away the pity face.

When they see the little pink line, nobody ‘wants’ a non-typical kid. They don’t daydream about a future filled with therapy and feeding struggles, and days at SICK KIDS and worry. No one day dreams about the worry. I get that. I also know that people have them – those non-typical kids. All the time. I have one. And you know what? I love her just the same.

I have learned that I was wrong and I’m sorry. I wish, when asked if I’d like a boy or a girl I’d said “It doesn’t matter” and left it at that. Because I have learned that a lot of things that I thought mattered, just don’t matter at all.

Sure, a whole bunch of things I never daydreamed about now consume the better part of my days. But that warm snuggly feeling I pictured, cuddled up close in the middle of the night? Turns out, I still got that part exactly right.

Williams Syndrome Wednesday: Let’s be better

by , on
Oct 3, 2013

I posted earlier this week about an incident that happened while Obi and I were out in the world. If you missed the post, you can read it here. I had interesting responses but the one that has stuck with me the most was a facebook comment saying “he should be fired”.

There was a time when I would have agreed that he should be. But these days I know getting him let go wouldn’t help him in the long run. He’d probably storm home or out with his friends and say that the mom of some “enterdisparagingremarkhere” kid got me canned for like, no good reason, saying I was, like, talking bad about her twerp or something.

He’d maybe get mad and maybe become a little pissed about ‘those people’ or something. He might spend his whole life being a jackass.

I don’t want to see him be fired. I want to see him be better. To learn that the things you say and the way you act means something. They say something about the kind of person you are. And, how you react when someone lets you know what your doing and saying is hurtful? That says a lot about who you want to be.

I’ve found that since Obi’s diagnosis, a number of people have chosen to be better. I know I have. Stickin’ up for people and things that matter to me. Trying to let go of things that don’t really count in the long run. Finding joy in small things. I’ve seen it in other too. People who let me talk their ear off about nothing just ’cause they know I can use a friendly ear right now. People who take a little extra time to ask about Obi and how things are going. People who have banished ‘the R word’ from their vocabulary and their presence.

I’ve met doctors, therapists and program directors who really seem to care about Little Miss, even through they’ve just met. They could just get the job done but they go further.

The listeners and the askers and the language police, they’ve all gotten a little better because of a 28 chromosome deletion.

It’s really quite amazing. Even the heartbreak over the diagnosis I think, in the end, will make me a little better. too.

And jackass. Big mouth jackass. You have a lot of room for improvement. Don’t be mad or resentful or angry or withdrawn. Be more aware of your surroundings. Be mindful of your words. Be a champion for where you work or find new work.

Be a better employee, a better door-opener-for-the-woman-with-the-stroller. Be a better human.

Be better.

Williams Syndrome Wednesday: I want to be…

by , on
Aug 15, 2013

A few weekends ago I attended the national conference for Williams Syndrome and they had a talent show for the individuals with WS one night.

There were all kinds of acts, stand up comedy, a family of 3 young children that wrote and performed a song about the loving nature of the WS kid of the family, some “just stand up and sing” acts.

All in all, there were some impressive numbers – these kids were real crowd pleasers – but one in particular stood out to me. A young boy, maybe 5 or 6, stood up and sang “I want to be where the people are” from a certain Dis_ney movie about a little red-haired girl with a tail who lives under the sea. I’m not sure if the rest of the audience had the same gut-wrenching reaction as me – the parent of the youngest diagnosed child at the conference- but I really felt the moment, and still do, weeks later.

If you’re not familiar with the song, it starts out “I want to be where the people are, I want to see, want to see them dancing…” and goes on to, at one point say “Up where they walk, up where they run, up where they stay all day in the sun, wandering free, wish I could be, part of their world.”

Since learning of Obi’s diagnosis and researching WS, one thing that has stood out for me it that individuals with WS understand that they have a syndrome that sets them apart – that they aren’t quite like everyone else. This has made me wonder if Obi will feel ‘different’ as in “we’re all individuals with differences who make up this world” or ‘different’ as in “I’m an outsider and no matter what happens I’ll always be on the outside looking in”.

Hearing this young boy sing (quite well for his age, I might add) about how much he wants to be ‘part of their world’ very nearly broke my heart in half.

I’m willing to bet he doesn’t grasp the meaning of the song at that level. He probably likes the movie, likes the tune. I really hope that’s all it is. I really, really hope, at 6, he’s not already feeling like an outsider. Because if I project that thinking onto my Obi and fast forward 6 short years, that may just be too much for my heart to bear.

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