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.
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.
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.
I do love this time of year. It’s so ripe with potential. New school year. New beginnings. New clothes…
This year I was totally wooed by Hanna Andersson. I try not to order from the States – duty, exchange etc, but I didn’t see any point in spending less here on clothes that don’t stand up to everything my kids put them through.
So I bit the bullet and splurged. In my defense, I did load my cart then wait and wait for a good sale to come along. And, i got an extra discount when I signed up to receive sale notifications by email. Win-win.
Ordering to Canada was easy-peasy and it came fast – only a few days after I got my shipping notification. And, when it arrived I read there is a Canadian address for returns which would have made it super easy to send things back…if I hadn’t instantly fallen head over heels.
So here’s the Hanna Haul for her: She only needed a few things for preschool – she grows so slowly that she wears through things faster than she outgrows them. Especially in the knees since she still ‘walks’ on them rather than her feet when she abandons her walker. The Hanna tights have so far lasted longer than any others we’ve tried.
There is one more cute hoodie that came later. The one I wanted originally is sold out in her size. Sigh.
The little dress with the stripes is adorable.
Hanna Haul for Him: The boy grows slowly and is in between two sizes so these should last well for him.
Long sleeve shirts were his most urgent need, followed by some comfy pants. I very much like the pull up pants which can be hard to find in stylish cuts.
As he was being 5, there are no photos of him in his clothes, but his sis was happy to help.
The hoodie is thick, warm, extremely soft and has a nice cut (obviously 4 sizes too big for this one).
All in all, I’m totally thrilled with everything that arrived.
You’ll find all the loveliness at hannaandersson.com
I am still pining for the quilted jacket that was sold out in her size so if you’re reading this Hanna Andersson – size 90 please.
Yeah, I know, I’ve missed a few Wednesdays. I totally had ‘that thing’ happen. The one where you have something on your mind and you really want to say it – but it’s such a big friggin’ downer for you and everyone else that you don’t say it. And then, as it’s all you want to say, you can’t think of anything else to say, so you just say nothing.
Yep. I’ve said nothing these past weeks because I don’t want to actually commit these words to print “it’s just not the same”.
There, it’s out there now.
I have had a vast number of people remark about how the motherhood journey is a common experience (and if you’re one of them, I am SO not calling you out in particular) and the more I hear it from Moms – typical everyday Moms – the more isolated it has been making me feel.
Partially this is my fault as I tend to gloss over the sheer logistics of tending to Obi’s needs. I am also guilty of attempting to adopt a normalcy to her condition which then leaves people without a sense of how far from normal her first year has been and what that has meant to our family. Even as I’m typing I’m cringing at my own words – really, what is NORMAL anyway?
But, truth be told, as someone who parented a typical child before Obi came into our lives, having her is just not the same as a typical kid. The “hopes and fears”, the “good days and bad”, the “just trying to get by sleep deprived” and the “constant worry” aren’t the same.
I hope my child will speak. I fear my child won’t walk, or eat solids that aren’t pureed or every be invited to a birthday party not thrown by someone who is like family. On good days I have been able to get food into her, I have not missed an appointment, followup, received bad news or thought too much about her future. On good days we learn we don’t have to come back to a particular specialist for a year – unless we see any of a set of scary symptoms. On bad days we learn she isn’t seeing well, had flunked her hearing test again, her calcium levels are rising. On bad days we get referred to rule out potentially debilitating seizures, get the run around for therapy funding, realize we have no idea what the future holds for her. On bad days people ask what’s wrong with her, if she’s going to be ok, if she’s ‘healthy’, if she’ll ever walk or talk and I have to answer we hope so.
In 12 months she’s slept through the night 10 times. The three months before that, she didn’t wake up. The rest of the days she got between 3-5 hours of sleep between 8 pm and 8 am. We take turns.
With my typical child I worried about eating, sleep, development, if he should have screen time, if he was being spoiled, was he likeable. Now I worry about hearing, sight, mineral levels, blood pressure, muscle tone, tippy toes, W sitting. I worry that she will never eat a cheerio, that she will be bullied, abused, invisible. I worry that I won’t live long enough to take care of her as long as she needs care, that she’ll wind up in poverty somewhere, that, once her brother has a family of his own, she’ll be alone.
I just worry.
I manage her schedule of what will soon be 12 doctors, specialists and therapists. Some she sees by-weekly, others quarterly, others yearly. I keep track of research, minute shifts in development, growth, eating habits, sleep habits, tests, procedures and behaviour that might indicate a need to see one or all of the 12 professionals that tend to her care.
I find foods to try, toys recommended by therapists, routines that might help promote sleep, cups she might hold, groups that will welcome her.
I work. I parent another child. I cook. I think about cleaning…
I love her without question and I do all of this and would do 10 times more…if required.
I’m not amazing, or a super hero or anything like that. I’m just doing what I need to do. Or rather, what she needs me to do.
I’m a mom. And I know we mom’s are a time a dozen.
And it IS true that, like others moms, I have hopes and fears and dreams for the future.
But it’s just not the same.
It’s just not.
My boy is THE pickiest eater. I’m sure it’s our own fault for about a million reasons but I’m working very hard at fixing the situation. One thing I’m trying is getting him to participate in making his own food when I can. It seems to work when we can pull it off.
Last weekend I had him make is own pizza for lunch. We used the Kraft Pizza Kit which I have mentioned before that we love for a quick, homemade-ish crust in 5 min flat.
Apparently he pays more attention to what’s going on around him than I thought, because part way through he insisted he needed to take a picture. Hmmm, wonder where he got that from?
This particular undertaking was a success. He ate almost half of that little pizza. Of course, only for this meal, the leftovers were passed over until his daddy helped him out and finished them off.
I’m very much hoping I can change his eating a least a little for the better. I’ll keep you posted.
Who know? Maybe he’ll end up a famous food blogger one day!
I have a confession to make. I seem to have a large foot stuffed in my mouth over and over again. I keep saying the wrong thing -particularly to one parent who has an older boy with significant physical disabilities and a second, a typical child Obi’s age. See, even that, is that the right way to say that?
The most recent foot-in-mouth incident arose when I was piping up in a conversation between said woman, another woman with a boy about Obi’s age who has similar developmental delays and myself.
The woman with the boy close to Obi’s age was asking the other about making the decision to have a second child when the first one has special needs. My addition to the conversation was that you’re making the decision knowing what lies ahead and what it means for your family. I found that when I had one typical child already then learned that Obi had special needs, I worried for the first. How would this change his life? What does it mean for him? We knew that we were pushing pretty hard to have #2 – (you can read all about that here) I wondered if we should have…
Now woman with older special needs boy and typical girl said “well it will only make him a better person” and walked away.
Hmmm. Didn’t mean for that to happen. Also didn’t mean to say that he wouldn’t be better for the experience of having Obi. Just meant to say that you have all the same doubts and feelings of guilt whether you plan to have a second after you have an extraordinary child or you find out that your family has grown by one and it’s taken you in an unexpected direction.
Just meant to say that when you’re in the throws of the ‘poor me’s’ a lot of things go through your head. For me, I wondered if it was my fault? (It wasn’t). If I had just been happy with one child would we have been better off? (We wouldn’t have.) Will Big Brother resent us and his sister later? (Perhaps, but if she was an Olympic Gymnast, one of those crazy med-school-at-15 kids, a kid who’s allergies keep peanut butter out of the house, outgoing while he’s shy…he might resent us/her too. Siblings resent all kinds of things.) If we, our family, our marriage, if I would survive this. (Well I will, our family likely will and our marriage? Well the statistics say no but I’m choosing to remain optimistic)
I was trying to say, there’s no right answer. You just have to do what feels right for you.
Instead she walked away and appeared appalled that I could ever thing my sweet baby was ‘less than’ and by association her boy was ‘less than’. (maybe I’m reading too much into that. maybe her baby girl, who wandered off, needed her).
Regardless, the moral of the story is We, us parents of special needs kids, we get it wrong too. When you’re talking about a child with an unfamiliar diagnosis we ask stupid questions we regret later. When we’re in a group with a child that exhibits behaviour that’s different or unexpected, we look ‘too’ long.
But we still ask. We still look rather than looking away. And that’s what we want you to do. Sure, you may stuff your foot in your mouth time to time. Been there. Done that! But please, ask questions. Make positive comments. Choose to learn rather than look away. When I say things that come out all wrong, I hope the parent knows I have the best intentions even if I don’t have the best expression of them. Just as I know you have the best intentions too.
If we get it wrong, you’re bound to get it wrong sometimes too. We’re all human. All just doin’ the best we can. So I urge you to keep trying to connect – foot be damned. It’s the only way any of us is ever gonna get it right.
PS: Mom at group, I’m sorry if I made you feel bad. It was certainly not my intention and I think my words just didn’t accurately express the emotion I was describing. People say stupid and inappropriate things to me all the time. But as long as they are trying to get it right, I keep listening. I hope you can understand this apology though my foot.
The words “Stop riding that penguin, we have to leave” actually came out of my mouth as I tried to hustle our 4 year old out the door the other day. He was bobbing around on one of these, much to Obi’s dismay.
But that’s not the funny part. As soon as the words were spoken, I giggled, remembering this poster that I pinned on Pinterest a few years ago.
At the time I thought it was hilarious. Now that it actually applies, I think I might just have to order one.
This guy – who has a whole “Things I’ve Said to my Children” series – is a pretty funny chap. If you’re a parent in need of a giggle, head over and scroll through his wares.