Saturday, October 29, 2011


Footwear has been an ongoing challenge for Kinger. For starters, his ballerina foot makes it hard to get shoes on at all and then they just fall off if not incredibly tight. Second, he doesn't have control of his feet, so it's similar to getting shoes on a doll. Third, he has very small feet for his age. Really small. And lastly, for months he had just the one AFO and now he wears two. Those suckers are hard to get shoes over.

In warmer weather he just went barefoot a lot or just wore socks and AFO's. Last winter he had Robeez booties and a one piece, footed snowsuit so we never worried about anything more.

This fall, we have challenges. It is getting cold here and even though he won't be running around in the snow and rain, he does need something to keep his feet warm because I'm finding they're cold a lot. He has his cute Elmo Robeez, but they aren't warm or weather resistant.
I started asking around and today, I bought him the best. boots. ever.  They are made by a company called Stonz Wear and although they are not marketed for kids with AFO's, they should be!  They're a wide boot that you essentially just slide over the foot and then cinch at the ankle and/or the top to hold and form a 'boot' look. No wiggling or stretching over, they just pull straight up when his foot is flat. They're warm, water resistant, Canadian made, and cute!

I am in love.

Even better, because Kingsley's feet are so small he only needed a size Medium, which means he has two more sizes up before he outgrows the booties.

And even though I wasn't really looking for any, I also found a pair of super cute shoes that fit over his AFO's really well also made by WeeSqueak. The velcro straps open right up (why do most kids shoes not allow that to happen easily?) so the shoe is open to the toe.

I love happy endings. :)

Words To Live By

(get it? because he doesn't talk, but he totally rocks)

Saturday, October 22, 2011

It's Time to Say Farewelmo

If you asked me in highschool what I wanted to do when I grew up, I would say I wanted to work with children with special needs. If you asked me in first year, second year, third year university I would've said the same. I had no idea where, how or what population specifically, but that was all I wanted to do. In fourth year, I was introduced to behavioural therapy for children with autism and all the pieces came together (get it?;)). I had found my niche, I had found my future.

Unfortunately, I ran into a little issue called nepotism which severely limited my ability to find a full time job in my career choice once Jeff and I moved back here in 2005. Call it destiny or kismet or I don't know what, but one day my sister called me up to tell me she saw a job ad for the job I had been going on and on about. It was down the highway in a different region. The one time that agency ever posted an ad in our paper. I got an interview. I got a call. I got the job of my dreams.

People often asked how I could possibly commute to work over an hour each direction, every day, every week, pregnant (because I usually was). It's easy. I am one of those rare, fortunate people who can honestly say that I love my job. I want to go. I like being there. I have people that challenge me, push me, believe in me and take chances on me. My clients are fantastic. My staff is amazing. Yes, sure, there are days where we need to close the office door so no one hears me swearing and we learned pretty early on that if we didn't laugh we'd be crying, but even the ability to do both make it a great job. The biggest constant in the autism world is change and that keeps things interesting.

I know, here's where you are scratching your head thinking: Um, Jill. You don't work. You're at home with the kids. Yes, that's sort of true. I had my one year maternity leave after Kingsley was born and then asked and received another year off to be home with King during his second year (which started off pretty insanely). I haven't actually worked in 22 months. My return to work date is in exactly two months, but today I drove with Kingsley and Cordelia into work and handed in my letter of resignation.

It was a lot harder than I thought it would be. It's so final. I just gave up my dream job.

It's not that it would be impossible to work full time with a child with SB. People do it all the time. We could have made it work if we had to. It would have been hard to do with a child with SB who has two older siblings who are in part time pre/school, though. I don't have any regrets, I know I'm doing the right thing. I love being home with the kids and getting to spend this much time with them. The stress of juggling the daily routine, plus therapy, plus appointments, plus the constant worry that I was missing something... I couldn't do it. I will do it again at some point, but not yet.  For now, I'm putting down my data sheets and picking up Elmo.

I'll miss you guys.

And you know I'm not serious. I still have my data sheets. ;)

Thursday, October 20, 2011

Strong and Silent Type

So, Mr. Kinger is digging his heels in now about this talking thing. He was cruising along, doing just fine, did the babbling, picked up a few signs, was able to effectively tell all the nurses last winter NOOOOO, BUH-BUH and do the frantic 'all done' with his hands. He said Mama, Dada, Nana and had a running list of other approximations. He imitated... things were coming right along.

Then he stopped.

What is with my boy and regression? As of 18 months old he was doing just fine, despite not talking much anymore. Just as long as he didn't continue to regress, we were okay.  He hasn't regressed any further. Problem is, he also hasn't made any gains. I think there comes a point nearly every hour where I pause the thoughts in my head and remind myself: THIS WILL COME. ... right??


I keep saying it's just because he's working so hard on everything else. He's doing some ah-mazing gross motor gains, his eating is trucking right along, his play and problem solving skills are flying. When I look at everything he's learnt to do in the last 4 months, I'm in awe. Everything but talking.

I KNOW he can talk. He has talked. He will talk again. He will talk more. I'm good at this waiting thing now.

While I wait though, I figure we'll give him a little push. I have started taking this course called The Hanen Program. I'm not going to lie, it feels a little weird being on this end of a parent education series after leading so many. I have to consciously stop myself from critiquing teaching style or making comments like I would if I were co-teaching. I am there to learn. I must stop telling myself that I know all this. If I knew it all, Kingsley would be talking, right? It's always the annoying know-it-all parent who is doing the most obvious no-no's. ;)

I think this is him subtly telling me to leave him alone

Good news. When we started, Kingsley was saying Mama, Dada, Da-Du (Rachel. And Cordelia actually), and signing all done. Three weeks in, he now vehemently shakes his head no while saying, "Ooooooooooo!!!!" and says ma-meh for movie (Elmo on the iPad). I'll take it. By Christmas, he'll be reciting sonnets.


Saturday, October 15, 2011


For a long time I didn't want to admit this because I thought it was kind of weird, but then one day chatting with other moms like me I realized I am not alone. I collect hospital bracelets. OK, maybe not collect, but I keep them. All of them. Not just the new baby ones with BABY GIRL BELL written on it, but also the big red ALLERGY ones that Kingsley gets and anything else they put his name on.

I have quite the collection. Cordelia has only 4 bracelets from when she was born (including mine and somehow the one that is supposed to set off the alarm that managed to come home with us). Rachel has her birth ones, plus one trip to the ER when her whole face swelled from a mosquito bite. Kingsley has his collection from his birth, his two MRI's, his two surgeries, one ER visit for a shunt scare and now a second ER visit from last night. Lucky boy.

No worries, everything is okay, but we had a big scare! Just as I was about to head up to bed last night, I heard the strangest strangled cries from upstairs. I had to stand in the hallway for a few minutes before I could figure out whose bedroom to go into, as it didn't sound like any of my children. It was Kingsley.

My first thought was that he was choking. He couldn't breathe and was making the most horrible noises as his whole ribcage struggled to get in air. I scoured his crib, looking for any signs of what he could've been choking on. Nothing. Raced him downstairs and out the door for cold air. No change. Panic.

He wasn't crying, seemed totally relaxed about the fact that he could hardly breathe. I think that was what scared me the most. He just wasn't sick. If this was croup, wouldn't he be sick? And if it wasn't choking and wasn't croup, what was it?

That's where the mind flies to 'complications'. Things related to SB. Stridor is a symptom of Chiari. You know, that big bad thing he had that big bad surgery for last November? My mind went there. Jeff's mind went there. When I woke up my poor mom in the middle of the night, her mind went there. I don't have a clue how or why he would suddenly have Chiari symptoms again, but in the middle of the night it doesn't really have to make sense - I raced him to the ER.

About halfway there, his breathing quieted. I could still hear it from the front seat, but I had to listen for it. Thankfully, the nurses and doctors we saw did a good job of not laughing at my panic as they diagnosed him with very mild croup, gave him a dose of steroids and sent us home. Turns out, you can have croup without being sick. Who knew? They did say that if the stridor continued longer than croup would to come back and we'd investigate other stuff. He's doing great today. Some normal coughing, but his breathing is fine.

One more bracelet for the pile.

Friday, October 14, 2011

Our Centre

I don't know if I ever mentioned it before, but I pretty much grew up at the children's centre in our city. My mom worked there for decades. I remember playing with the toys in the therapy rooms, waiting in the lobby for her to come out, and of course attending all of the picnics and fundraising events over so many years of my childhood. When I was in grade 8, my mom decided I was old enough to start volunteering there, so I did. Eventually, they started paying me and I did various lifeguarding and contract positions there until 2001 when I moved out of the city for a few years.

When we were first told that we could be referred to the SB team at the centre, it was like someone had tossed me a life preserver in the ocean of chaos we had found ourselves in. Yes!! Send us there! These were my people. I knew them, I trusted them. It was like going home. Some of these people had seen me grow up, they knew my parents. I've worked with them, I've gone to school with them, I've even babysat their children and had some as guests at my wedding! I'm pretty sure I know people in nearly every department in that building from one phase of my life or another. I sometimes joke that I can't leave an appointment there without giving myself a 20 minute time buffer to chat with whomever we happen to run into on our way out. To say the people working there are awesome would be an understatement.

Over the last two years, we have just taken advantage of every opportunity they throw at us. Kingsley and I do playgroups for babies/toddlers that they help run, we do swimming lessons (for him, I already know how to swim ;)), we go to clinic there, we receive PT from there, we've gotten Kingsley's splints from there. After Kingsley was born, Jeff and I attended a group for new parents of kids with special needs through them (where we met some amazing parents that we still keep in touch with). We've also received a ton of equipment from them on loan for various reasons and of course they made Kingsley's fabulous Bumbobile! Once a week I take Cordelia and Kingsley there for a playgroup that they attend while I sit around chatting with other moms, which is a much needed sanity break for me and the kids.

Do we love this place? Oh, yeah. :)

So, when they ask us for something in return, I am quick to say yes.

First they asked if I would mind being interviewed about the importance of playdates for my kids and myself. Not at all! So, during one of our restful mornings there, I was interviewed with another mom and they took some pictures of our kids for the article. The article isn't online yet, but we have the hard copy. (incidentally, Aaron Fotheringham was on the cover that month!)

Then, they decided that the picture was pretty cute and asked if they could put it on the homepage.
Thames Valley Children's Centre
Cordelia will one day hate me for saying this, but she is absolutely head over heels for this kid. She carried this picture around and 'introduced' him to all her dolls with big sighs and swoons. She doesn't even acknowledge that Kingsley is in the picture. He is pretty cute ;)  

Next, we were asked if Kingsley would like to be one of the faces on the advertisements and website for one of the centre's biggest fundraisers and just like that we had Christmas in June and Kingsley was decking the halls for the Holiday Home Tour: (a fabulous event if you are in town).

2011 Holiday Home Tour, presented by the Thames Valley Children's Centre Auxiliary

And if that wasn't enough, I was asked if we'd like to have him featured on the annual mail outs that go out to people who will (hopefully) make donations to support some of the awesome non-government-funded programs at the centre. Of course, we said yes!

I may be slightly biased, but I was immediately compelled to make a donation when I saw that handsome face. 

They do so many amazing things at that place. We are so lucky to have somewhere to go for not just the support, the programs, and the equipment Kingsley needs, but also the laughs, the reassurance, and the hope they inspire.

Saturday, October 8, 2011


It's Thanksgiving weekend and so far, it's all kinds of fabulous.

We've had a change in weather from rainy and cold to blue skies and warm breezes. Heavenly. The weather has made us run outside to enjoy the change in seasons before the gross November weather hits. 

And since we were outside anyway, we took our fall pictures! My friend Silvia and I have been doing this for four years running now. We are not photographers or anything and honestly, we take nearly 1000 photo's between the two of us and magically end up with about 50 that make us look really talented ;) Toss in some fancy editing and we've got shots for the walls. 




...and this year! 
Who is this little man?? 

A half a second after I took this picture, Cordelia turned around crying because Kingsley didn't want to hold her hand, just Rachel's. She was devastated.  

(I tried to get one of Kingsley like these in the leaves, but he wanted nothing to do with it. Just screamed until I helped him sit back up) 

If you've been keeping track of Kingsley's development over the last year and a half (and why wouldn't you be?? ;)) then you'll notice something incredibly exciting about that last picture. Yep - check! - Kingsley can officially sit on his own now. Two hands up doing stuff, back nice and tall, nothing behind him 'just in case'.  He takes his time, but he gets there. I am very thankful for that. :)

Monday, October 3, 2011

My Friends

Hi there,

It's me Kingsley again.

You may not know this, but I'm a pretty popular guy. I'm not even two years old, but I've got a big posse.

I know you think I'm pretty cute and I'm a medical marvel and all of that, but you should meet my peeps.

Mommy says it's SB month in the States. I don't know where that is.

Because it's SB month, lots of people are talking about some of my friends. They want you to meet them, too, so you see that I'm not the only cute little guy with SB. There are loads of us. Some are like me, some are not. Some have had lots of surgeries, some have had only one. Some even had surgery before they were even born! Some walk, some run, some wheel.

Mommy says that we're all rockstars.

So, go meet my friends. Tell them I said 'hi'. Don't be shy, they're friendly.
You might want to check back and see when I get to be Rockstar of the Day.

Love Kingsley

Saturday, October 1, 2011

Awareness Month Deja Vu

Hello, welcome to October! Otherwise known as Spina Bifida Awareness month for the USA. We live in Canada and ours is in June, so I posted about it then. Instead of repeating, I'm going to repost. You can say that is lazy or you can say that I was so brilliant the first time that there is no topping it. ;)

I'll pretend you're agreeing with the second option.

I like to let people know what living with SB is really like. Not just the bad stuff, not just the good stuff. I don't want to gloss over anything because it's ugly and I also don't want to make it seem like it's horrible because mostly things are just pretty awesome.

Things weren't always so awesome though. Here is what it feels like to get the diagnosis for your baby:  In a nutshell, it's horrible.

And then he's born and the whole world becomes full of rainbows and sunshine!

The rainbows fade with the lovely drugs, unfortunately. The post-birth hospital stay is one long rollercoaster, but the end is worth it because you get to go home and start your life.

And then you live.

You have good days  and bad days and sometimes even worse days

You go on vacation (imagine that!) Yikes 

You live

Your other children continue to live

You have blips

But when you look at your child, you still believe you are the luckiest person in the world, because they are yours

This is what it's really like to live with a child with SB

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