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.
Today is the day! It’s Launch Day for the Nintendo Switch. My son and I had the chance to test out the Switch here in Toronto. And I have to say, we were both smitten. I am not a gamer by any stretch as was evident earlier today when I stood in line to nab a console for our family. It was def a case of one-of-these-things-is-not-like-the-other. But I’m quite certain this is the next great family console. And here’s why.
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.
You know Thive is a big theme here this year. I just heard about an amazing initiative from Glen Bernard Camp, just west of Algonquin Park that has been created to offer the summer camp experience to 24 girls who have recently arrived from Syria.
When you think of summer in Canada, the cottage, trailer, tent camping and summer camp are such an integral part of our summer culture. I spent every summer with my dad at our cottage (we called it camp up North) fishing, swimming, canoeing and sailing. Those are some of my happiest memories. After all the change, all the unmentionable things these girls have seen this year, I think it is so incredible that they will have the chance to just splash around in the lake, sit by the campfire, bunk in with new friends. They’ll have the chance to Thrive in the most amazing environment while canoeing, sailing, climbing high ropes, enjoying arts and crafts and swimming.
Research has shown summer camp has a real impact on a child’s sense of belonging, self-confidence and esteem. It’s that “sense of belonging” that I think really makes this program special. It’s hard to be a preteen girl. I can only imagine how much harder it is when you’re in a new place, having left just about everything you knew behind.
Glen Bernard for Syria: A Canadian Summer Camp Experience is setting aside 24 spaces at the camp for Syrian girls between the ages of 11 and 13. Jocelyn Palm, the Owner of Glen Bernard Camp and Order of Canada recipient said “This year is our camp’s 95th anniversary. We couldn’t think of a better way to celebrate than by opening our doors to these new campers.”
I agree Jocelyn. Well done.
Private sponsors are encouraged to apply on behalf of girls ages 11‐13 in their Syrian family. Application forms for the program are now available on the Glen Bernard Camp website at gbcamp.com and will be accepted until April 1, 2016.
You won’t have to worry about funding the application. All of the costs for these campers are being covered by Glen Bernard. In addition to covering the camp fees, Glen Bernard will provide supplies and equipment through donations from past and current camp families.
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.
Part of my New Years #thive2016 resolution is ensuring the whole family thrives. So over the weekend I thought we should do a typical family activity. We should make a craft.
Not only do both my kids like to make things, Allie gets to work on some of those “therapy skills” when she’s doing crafts at school. Why not do one at home?
I found an easy craft over at The Inspired Home and rounded up all the supplies. This isn’t something we’ve done at home much so I had no idea what to expect. I even tried to google “home craft ideas for kids with intellectual disabilities” but no luck.
When the time came to prep the craft, my 6 year old son decided he WAS NOT making a heart. Off to a great start. I got everything ready and tried to show Alma how to make her heart but she was much more interested in dumping the bits of tissue paper and peeling up the tape to release the contact paper.
There was a time not long ago when I would have packed it all up and yelled “forget it” (not proud of this) but instead I showed Alma again. And again. And again. I handed her individual bits instead of letting her dump the container. We sang a song as we stuck down the bits.
My husband came to give me a hand with the cover contact paper so we could focus Alma and finish that part.
My son came over to talk about the craft he DID want to do, so we got that stuff out and he and Alma sat together laughing and bickering and glueing and fighting over the safety scissors. They shared. I helped my boy glue a snowman. I hung Alma’s heart.
I also felt a weight lift from my heart. We’re just a regular family doing regular things. Making decorations for Valentines Day. Screwing it up a bit. Feeling proud anyway.
I hope the next person to google “home craft ideas for kids with intellectual disabilities” sees this post and decides to throw caution to the wind and make Valentine’s Hearts from The Inspired Home or some other neat thing that catches their eye on Pinterest. I hope they don’t wait to try something like I did, or search for a special list of special ideas for special kids.
Every craft a kid makes is special.
Moments like these? Special.
Learning that undivided attention, some time to horse around, and seeing our proud faces as we hang up their creations is just what they need? That was pretty special too.
If you’re interested in making the Valentines Day Stained Glass Toddler craft, head over to The Inspired Home for all the supplies and instructions.
I was lucky enough to win a Rice Krispies prize pack in the #treatsfortoys twitter party in December. I’m a big fan of the program where Rice Krispies donates money for toys for every toy shaped Rice Krispie Treat posted with #treatsfortoys. This year, the campaign raised $40,000.
I thought I’d say Thank You for the amazing prize (which included a whole bunch of Rice Krispies AND a Visa gift card) by making a video of the first thing we made with the delivery. The whole family enjoyed these and I loved making my first food video.
Heart Shaped Valentine Rice Krispie Treats
We prepared the recipe from the box. You can find it here:
1.Melt margarine in large saucepan over low heat. Add marshmallows and stir until completely melted. Remove from heat. OR Microwave on high for 45 sec.
2.Stir in KELLOGG’S* RICE KRISPIES* Vanilla Flavour cereal until well coated. Using lightly buttered spatula, press into buttered 3.5 L (13×9″) pan.
3.Allow mixture to cool.
4. Use cookie cutter to cut Rice Krispie treats into heart shapes. You can squish leftover treats into the cookie cutter to shape.
5. Melt candy wafers in the microwave. Time will differ between microwaves. Use 30 sec intervals until soft. Stir to melt the rest of the way.
6. Dip the tops in melted candy coating.
7. Sprinkle with Valentines Day sprinkles before the candy sets.
8. Hide some before everyone eats them on you because you’re going to want to keep some for yourself.
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.