Williams Syndrome Wednesday: 5 lessons from #WSA2016

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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.

 

 

 

 

#WSHappywalk The Happiest Twitter Party Around

by , on
May 28, 2016
mommydo.com | #WSHappyWalk Twitter Party for Williams Syndrome

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.

mommydo.com | Williams Syndrome Awareness #WSHappyWAlkAt 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.

mommydo.com | #WSHappyWalk for Williams Syndrome

To be eligible, follow @mommydoCA, @JennPowellLive, @TheInspiredHome,@Merry120

See the full rules and regulations here.

 

 

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.

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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.

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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.

2016: My Year to Thrive

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Jan 1, 2016

Just over 3 short years ago, our second child was born. She was born small having suffered in-utero growth restriction and the first of many diagnoses she would receive was “Failure to Thrive”.

mommydo.com || Williams Syndrome NICU

She wasn’t getting enough nutrition and wasn’t growing as she should. It was heartbreaking. From there, she was developmentally delayed, had hypotonia, was socially delayed, tongue tied, had mild pulmonary aortic stenosis, was found to be missing 28 genes on chromosome 7 consistent with a diagnosis of Williams Syndrome. She had high calcium, poor mouth control, vision issues, hearing issues, digestive issues, sleep issues, suspected neuro issues (never confirmed), more feeding issues, ear issues, gross motor delay, sensory issues, repetitive behaviours, speech delay and so on. It’s a lot.

Despite her Williams Syndrome, many of these challenges are resolving, most importantly her cardiac issues, and of course, she no longer has failure to thrive. In fact, she’s a wonderful little girl who steals hearts and sings with gusto.

mommydo.com || Williams Syndrome Thrive

It’s me that’s not thriving.

When I entered the NICU three years ago, I clicked into survival mode. I did everything I needed to do. I learned everything. I met with everyone and I faced every challenge with my eye on the prize. To ensure she will reach her full potential. To do this, I had no choice but to put some things on hold. But now…

But now I’m pretty sure “survival mode” isn’t something anyone can survive forever.

So this year I hope to open the door to some of the things that I left behind the day the small one was born.

Don’t worry, I’m realistic. Ensuring Alma reaches her full potential is no less important today than yesterday. And I know that you can’t actually “make time” or “find time”. There are only so many hours in a day. Still, the rest of us need to reach our full potential too.

So here are my personal hopes for 2016:

I want to read a book.

I want to spend time extra time exploring the wonder of the world with my boy.

I want to knit something. Sew something.

I want to go one place I’ve never been. Maybe it’s a corner of the city. Maybe it’s a country. Just somewhere.

I want to eat food that makes me feel well, and strong and that tastes really good. I hope to have seconds, maybe thirds.

I want to experience one of those amazing moments that you couldn’t describe, no matter how hard you try.

I want to do one thing that’s daring, one thing that’s scary and one thing that I probably shouldn’t.

I want to raise a little hell.

I want to get better at something.

I want to laugh till I snort.

I want to feel my body moving and my heart pumping and my mood lifting.

I want to get to know some people better. Sit down, make I contact and talk about them for a change.

I want to breathe. I want to see something that takes my breathe away.

Life is short so this year, I want to do more living.

I want to stop surviving and start thriving.

mommydo.com || my year to thrive

 

 

 

Five Tips: Buying gifts for littles with exceptional needs

by , on
Dec 7, 2015
mommydo.com | 5 tips for buying gifts for toddlers with special needs from a Mom of a child with Williams Syndrome

It’s that time of year. Make your list. Check it twice.

Except, when one of the kids on your list has a developmental disability or other special needs, what do you get?

It’s our 3rd Christmas with Allie, and each one has been a bit of a struggle. I don’t really know what she’d like. Certainly no one else knows what she’d like. Shopping for kids with exceptionalities isn’t easy. Every child comes with a unique set of likes and watch outs – many of which the parents have never articulated. The age guides on the box are no help. And tired special needs parents often don’t really know what to tell you.

This year, I set out to make sure that I found Alma something great. I also set out to help guide friends and family shopping for Alma or for other kids that aren’t typical, to gifts the kids will love and the parents will appreciate.

Here are my 5 tips, in no particular order:

1: While no one wants therapy for Christmas, ask if there’s something the child is working on and see if you can find a toy that makes learning or using that skill fun. Alma has just started taking some independent steps, so toys that get her up and moving would be a great motivator. This Skip Hop Explore More Push Owl looks like a fab choice. It seems sturdy, she’d love the owl and it looks like a smooth push so she won’t get discouraged as she’s building this skill.

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2: Ask about “Watch Outs”. As an example, Allie is very “mouthie” so everything goes in. This means she’s really only safe with toys that are listed for children under 3 or have no small parts.

Giving us toys that she’ll grow into just means more to store – and stare at with disappointment that she’s not there yet. The perfect toy is one that she can use now, but can also grow with her – even if toys with small parts are never safe for her.

Alma loves animals. She makes the little sounds…she waves them around. So this toy, the Melissa and Doug Animal Rescue would be a great choice.

Screen Shot 2015-12-07 at 2.46.38 PMShe can play with the little animals and make vroom-vroom sounds with the car now, and eventually use it as a shape sorter.

She would also enjoy this Janod wood hedgehog. Though the numbers are still a little beyond her grasp, she would love the bright colours and having pieces to bang together.

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Other toys in this category would include blocks, a baby doll with no small accessories but outfits to change or other toys that will eventually lead to imaginative play.

3. Find out what the child likes, then figure out how to deliver in a way he or she can enjoy it. Alma’s absolute favourites are pulling things in and out of other things, listening to music and helping with chores. I had to sit down and think pretty hard about that. Not because these things aren’t abundantly clear, but because I always find myself saying “Well she likes X but…” so I inadvertently steer them away from things she’d love instead of towards them. Let the parents know you’ve heard what the child enjoys and you’ll find a way to give them something they’ll love (now) and will safely enjoy. When I allowed myself the same leeway, I found lots of things to add to Allie’s list.

Like this awesome Melissa and Doug Pretty Purse Fill and Spill. She would get hours of entertainment from it. We could take it to appointments to give her something to do and it’s cute to boot.

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Then there’s the Melissa and Doug Let’s Play House kit. Not only does it have things that she can take in and out, but it will also give her realistic tools for when she’s mimicking chores.

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She already has a number of musical toys so I couldn’t find one to add to her list, but she sure would appreciate someone else doing the legwork and finding something new.

4. Try and come up with something that would engage a sibling too. Allie and her brother are 3 years apart, but the gap keeps widening. I love it when she has a toy or an activity that works well for her, but her brother can enjoy too. Once they get going, they have a lot of fun together, but it’s hard to find toys that keep them both busy safely. And let’s face it, speech, gross motor skills, fine motor skills and social skills all develop faster when you’re modelling someone else. And lucky for kids with siblings, they have the best role model right in their own home.

I came across these Tegu Magnetic Wooden Block Sets and was instantly intrigued. These blocks appear to be safe size-wise and would definitely capture both their attentions. Plus, it’s another toy we can take on the go. Bonus!

Screen Shot 2015-12-07 at 2.53.13 PMThis KidKraft Mega Ramp Racing Set would also score high marks with both of them. It looks stable, which is idea for little miss – her balance isn’t great so toys with a larger base give her more confidence to explore. And there’s a racing ramp, which can help satisfy her brother’s competitive nature. Is this a toy I would choose for him? No, he’s likely mostly outgrown it. But if it’s there, and she’s playing with it, I also know he wouldn’t be able to resist joining in the fun.

5. Ask what else they need. This seems like a no-brainer, but I never seem to take stock of all the little things that would make a big difference for me, and benefit Allie in the process.

Like hair clips… because she throws them out of the stroller when we’re walking along. Something like this would be amazing.

Screen Shot 2015-12-07 at 12.20.59 AMShe also needs leggings. Since she’s still mostly knee walking, her tights, leggings and pants sometimes only survive 3 wears before she’s snagged holes in the knees. Love the geometric pattern on these Babylegs.

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Then there’s the lunch bag that I’ve been meaning to get for a month. And if you think this is a ho-hum gift to give, you haven’t seen this soon-to-be-released Skip Hop Zoo Lunchies unicorn.

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She also could use some new cream, and this Matter Company Substance Baby creme is my favourite baby cream but it’s kind of fancy so I rarely splurge.

Screen Shot 2015-12-07 at 2.51.52 PMWhen I sat down to really think about what Alma could use for her own good, but still be safe, that she’d really love and that maybe her brother would love too, I realized there are lots of great gifts out there if I ask the right questions and have a good think. This means there are lots of great gift ideas for any child on your list who’s needs aren’t necessarily met by reading the ages on the box.

And, when you give one, don’t watch the child, watch the parent. Because you, taking the time to ask questions, to understand their exceptional child better and find a gift the kid will love, is the greatest gift you can give them.

well-dot-ca

All the gifts featured here are available at well.ca and, with the handy Wishlist feature, I was able to compile an easy way for friends and family to find exactly what I think she’ll like or give them the inspiration they need to find something new.

Mommydo Review: The Honest Company at well.ca and GIVEAWAY

by , on
Nov 22, 2015

I’m very choosy about what I use on the kids, especially since Alma. But, sometimes wading through all the choices can be daunting.

I have to admit I clapped my hands and squealed the first time I came across The Honest Company. I greedily read everything about how it started, their mission and what they offered Moms like me, who are looking for new, progressive options their families.

I love planet friendly, human friendly, CUTE products with sharp design.

Sadly, shipping them to Canada was expensive. Sigh.

When I caught wind that The Honest Company was coming to Well.ca, I clapped and squealed all over again. I let Well.ca know how excited I was and they sent me a few things to try to give my own Honest opinion AND a $30 gift card to give away to one lucky reader so you can try them too!IMG_8403

First up, Honest Diapers

honest diapers     .

These diapers have CUTE covered in spades. We tested the cherry/chevron combo.

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I love that they are unscented, fit well (nice and tight around the legs), and don’t gape at the back. Alma has become a “diaper digger”, sticking her hand back there and pulling out whatever (yuck). These stay nice and snug at times when she’s not wearing a onesie or her tights slip down a bit. They hold wetness well and don’t droop unless she’s seriously soaked them – by which time I should have changed her already so my bad, not the diapers.

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Unlike diapers that pass the test on infants then fail once baby starts to go, go, go, Honest Co. diapers held up, no problem. They are great for a toddler on the move. No matter what kooky moves she’s doing.

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The next product I tried is Honest Conditioning Detangler in Sweet Orange Vanilla Scent.

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Our little one has some serious issues when it comes to matted hair so I was very excited to give this one a go.

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First, I need to say this product smells divine. It’s light, fresh and sweet, not too heavy and definitely not “perfume-y”. It was refreshing as I tend to automatically select unscented products for no real reason other than I don’t like overpowering fragrance. We don’t have allergies or scent sensitivities in our home.

Second, it really works well. The spray provides great coverage so you don’t have to load it on. I have flat, straight, fine (knotty) hair and it easily tamed my tangles without weighing down my hair or making it look greasy. It made tamed Alma’s tangles too – which is the real miracle.

Alma Cute HairThe last product I tried was Honest Company Organic Lip Balm Trio 

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This one was just for me, and thank goodness because I really don’t want to share. These balms use essential oils to condition and soothe lips rather than petroleum-based formulas that seal the lips off.

There are 3 ‘flavours’ in the pack – Lavender Mint, Sweet Orange Vanilla and Purely Simple.

When it comes to lip balm, these are absolutely my favourite I’ve tried. I have one at my desk, one in my purse and one in my diaper bag. I describe them as Velvet For Your Lips. They are so silky and smooth. My lips have been soft and supple without the feeling that as soon as it’s worn off, I need to put it on again. I don’t usually get all worked up about lip balm, but I was waving these around work and singing their praises for days. And, with 3 for only $10.99, they’re a great little pick me up.

I have to say I had high hopes for The Honest Company products and these did not disappoint. I’m not sure what I’m most excited to try next – something else for Alma, or something else for me. I’m fairly certain whichever I pick, it will also find its way onto my most loved list pretty quickly.

WELL.CA HONEST COMPANY REVIEW

Do you want to try some Honest Company products too? Enter now and you could win a $30 well.ca gift card code sponsored by Well.ca!

ENTER NOW

With free shipping starting at just $29, the winner will be all set to go! Contest starts Sunday November 22 at 12AM and closes November 29 at 11:59 PM. Good Luck! See full rule and regs here. 

 

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.

For the sky

by , on
Aug 3, 2015

Another park.

Another day.

mom in park: How old is she?

2.5

mom in park: Wow.

Yes she has some delays.

mom in park: Oh. Is she walking?

No, not yet. Someday.

mom in park: Huh. Will she catch up?

No, probably not. But I’m sure she’ll surprise us in other ways.

mom in park: She is cute…

yep.

Sigh.

Then I snapped this photo and thought about how I see her: flying out in front, her brother smiling behind her.

IMG_7951

Swing on sweet girl. Aim for the sky.

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