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.
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.
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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.
Three years ago, Shane headed off to his first day of Montessori. He walked the 1.2km to the school, was mostly potty trained and was already fluent in sarcasm. Alma is the same age today as he was then. Tomorrow he embarks on a new journey at a new school. Once we drop him off, Alma will start the new year at her 2.5h per day reverse integrated special needs preschool. We have a walker prepared for her and her TPSL block starts right off the bat. She’s been accepted into Physio at Holland Bloorview so has weekly visits there too. I am starting to speak fluent specialneedsparent.
When I applied for Shane to enter that Montessori, I had to outline my goals for his education. I wrote that I wanted him to be able to decide for himself what interested him, and develop a lifelong love of learning.
When Alma joined her preschool, I had to do the same. I wrote that I hoped someday she would learn to read, and achieve an independent life, in whatever form that may take.
I hope tomorrow both of them get one baby step closer to those goals.
Today, as I write this, I’m actually standing in brilliant sun and walking in the pouring rain at the same time, which seems fitting.
That’s exactly how I feel.
It’s been a busy time but I still try and make a nice family meal on Sunday. Little Allie is way more interested in saucy, savoury foods than the boy, so now 3 out of 4 of us will eat what’s on the table.
This Shepherd’s pie has 3 things going for it.
One, despite having a long ingredient list, it’s pretty easy.
2. It’s delicious.
3. It has wine so I can throw a little in the pan, throw a little in my glass… and enjoy a little island of grownup time in the chaos of late Sunday afternoons. (of course the alcohol cooks off before I feed this to my munchkin).
This recipe is from Chatelaine Magazine. They do it in little ramekins, but I don’t have the patience. I also play around with the recipe – of course, being lactose-free, I mash the potatoes with whatever lactose-free dairy I have around. I sometimes omit the cauliflower and go straight potatoes and I’ve been know to throw in a little extra wine.
I partially think they went with the little servings because it’s really hard to get a tasty photo of a big shepherd’s pie, but trust me, it’s delicious. You can see their photo and the recipe as it appeared in link below.
2 tbsp 2 tbsp 1 tbsp
1/4 tsp 1/8 tsp
250 g Yukon Gold potatoes, peeled and cut into 1/2-in. pieces
1 small cauliflower, cut into florets, about 1 1/2 cups
2 tbs unsalted butter
2 tbs 18% cream
1 tbsp grainy mustard
1/4 tsp salt
1/8 fresh-ground black pepper
500 g lean ground beef, or lamb
1 small onion, chopped
2 garlic cloves, minced
1 carrot, diced small
1/4 tsp salt
1/4 tsp fresh-ground black pepper
1/3 cup shiraz
2 tbsp all-purpose flour
1 cup no-salt beef broth
2 tbsp tomato paste
2 tsp fresh chopped rosemary
1 tsp Worcestershire sauce
1/4 cup grated parmesan, optional