There 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.
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.
I’m excited to be attending TheThriveSummit.ca on Monday. When I first made the decision attend this session to learn and share how I #ThriveinMyLife, I was mentally planning my February #ThriveTop5 post early in March. I had an amazing month (don’t worry, I’ll still get the post up there) with all kinds of great #thrive2016 moments.
I was excited about the interactive session, networking and unconference sessions too.
Then life did one of those things life does. My 6-month plan to change my work situation changed for me and I was suddenly there – six months too soon. I wasn’t surprised per se, but #WhatsNext certainly crossed my mind.
That was almost 4 weeks ago. Since then I’ve been working on creating a side business that has nothing to do with my “day job” business, done work with some amazing people, have made time for friends, planned nights out, taken the boy on a little road trip, had drinks on a Monday night (yes Monday!), gone out for a boozy lunch and cooked up a storm.
In trying to find ways to Thrive, I’ve realized some things. These are probably completely obvious to everyone else but I’m going to share them anyway. Just in case someone reading has woken up in the morning and felt a little light inside has gone out and is unsure where to start rekindling the flame.
There are still a few tickets left for the Thrive Summit Conference, so Let’s Thrive Together at The Thrive Summit Conference this Monday.
The conference will help you improve your financial success, set new goals, prioritize your healthy living (including stress management) and increase work life quality, productivity, clarity and focus. Over 20 members of our thrive team (including productivity expert and bestselling author Chris Bailey – Author of the Productivity Project) will leave you inspired, energized and ready to prioritize your health, wellbeing, purpose and work objectives more effectively.
For full details visit our Thrive Agenda
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.
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”.
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.
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.
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.
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.
She 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.
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.
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.
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!
This 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.
She 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.
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.
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.
When 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.
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.
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!
First up, Honest Diapers
These diapers have CUTE covered in spades. We tested the cherry/chevron combo.
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.
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.
The next product I tried is Honest Conditioning Detangler in Sweet Orange Vanilla Scent.
Our little one has some serious issues when it comes to matted hair so I was very excited to give this one a go.
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.
The last product I tried was Honest Company Organic Lip Balm Trio
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.
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!
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.
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.
Today is Pregnancy and Infant Loss Remembrance Day.
I remember our first loss like yesterday. Not one to keep quiet about things most people don’t like to talk about, I wrote this post the day the learned we’d lost Sweet Olive after IVF #2.
If you share this experience, I hope you haven’t had to suffer in silence, and I am so very sorry for your loss.