Showing posts with label wheelchair. Show all posts
Showing posts with label wheelchair. Show all posts

Monday, January 6, 2014

Winter on Wheels

Winter is here and it's been a brutal one. I know, I know, we live in Canada, the snow should not surprise me, but I kind of feel like we've had more than our fair share this year and now to add insult to injury, we are breaking records with the cold and wind. It's dreadful. It's only the start of January.


I think part of why this year seems worse than previous years is that it's the first time I've had to prepare all three kids for the horrid weather. Up until now, Kingsley has gone outside in the winter when I was interested in going outside... which is rare, hovering around 0C and has a nice, friendly snow. This year, he is in preschool and at preschool they go outside, no matter the weather. He plays outside at preschool, so now he thinks outside is all fun and snow is great. My glory days are over. This year, we play outside. Blech.

The weather shifted and snow hit the week Kingsley had his casts off, which was a godsend since you cannot fit snow pants or boots over casts and leg splints. I bought him Stonz boots again with a sherpa liner for warmth. They've been amazing. They fit amazingly over his AFO's and are very warm. I am going to cry when he outgrows these boots. There's nothing special about his snowsuit or any of his other gear, but putting it on is ridiculous. Dressing a typical child is not all that much fun. Dressing a child who needs endless layers to protect skin he cannot feel, who can barely sit up in that many layers, and who cannot push his foot into a boot is a downright gong show.


Remember the scene in A Christmas Story with Randy's snowsuit? This is my life right now. I work up a sweat, I'm exhausted. And many times Kingsley has laid on the floor when we're done, flailing around yelling about how he can't get up. Gong. Show.

Anyway, other thrilling escapades involve wheeling through snow, snow drifts, melting puddles of slush, puddles in general, salt and dirt. If you thought pushing a stroller through snowy sidewalks was bad, imagine not being able to tip that stroller back to get over the obstacles. Imagine lifting that dirty, snow covered stroller into your trunk over and over and over. Imagine pushing that dirt and snow covered stroller right on into your house.


I hate winter.

I'm trying very hard not to entertain the dismal thoughts running through my head about how Kingsley will cope with recess next year when he's in school full time. And when he's older and all the other kids are running through the snow. He'll be alright, right? He's not the first kid in a wheelchair in the winter.


If there's one good thing to come out of this, it's that Kingsley has started pushing his wheels with the hand rims instead of the actual wheel, to keep his hands clean.

Whine, whine, whiney, whine, whine. 

Friday, November 1, 2013

Almost Halfway

Kingsley is still doing great. He gets his casts off on November 18. We saw the surgeon last Monday and she took off his big white casts and replaced them with lighter blue ones (to match his Thomas costume, of course!). I finally got a look at his legs and his incisions. Well, sort of, they were under bandages still.

It all looked good! The surgeon said I could take off his zimmer's to give him a break and some air, but he doesn't really care if he gets a break or not and his bare legs kind of give me the hibbie jibbies. I'm so afraid of messing things up. Once a day I take them off, inspect his legs, have him bend a bit and then I put them right back on. I did end up taking the bandages off all of the way to see the incisions. I really need to toughen up because there was a lot of squeemies and even a bit of nausea. They look great, they're healing well. I just couldn't get Molly Weasley's voice out of my head (please, someone tell me you know what I'm talking about).

His legs are so much straighter. It's so strange. The bend and tension in his legs was so much a part of him, to have his legs just straight and flaccid is a little disconcerting. They seem really long!

the top ones are his legs at rest before surgery. that's how his legs pretty much always were.
the bottom are one week post-op when he got his new casts. his legs rest a bit straighter than that even.

Kingsley is still doing great and is completely unbothered by his casts or splints. He moves around just fine (the splints are FILTHY) and he hasn't had any trouble sleeping, which is good because I'm going to make him sleep in these splints for the rest of his life. He does great in his stander.

So, yup. Halfway there now. Still incredibly grateful that this is going a million times better than it could have gone.

Halloween 2013

The last few years we have gone to a mall for Malloween, but this year they announced that they were no longer doing it. Looking at the weather report, I was panicking. The day before Halloween, a second mall announced that they would do Malloween. YEAAA!!! Whew! Thomas does not run well in the rain.


It worked out perfectly because it poured rain yesterday! Just downpoured all day long. We kept thinking it would let up, but it did not. We hit the mall and made our rounds there. It's a small mall, which was perfect.


Now, in the online world wheelchair costumes are not that uncommon, you can Google and see hundreds of them. In my real world, they don't exist. I have never seen one in real live other than the ones that I've made for Kinger, not before and not after. So, pretty good assumption that no one else around here has ever seen one either, especially based on the reactions he got at the mall. Nearly everyone we passed stopped to comment or stare. Kids came up to touch it, people parted to let him through, many of the store employees gave him extra candy... Kingsley was a little celebrity. It was really cute.


Unless you are Rachel and you are dressed as the BEST Tinkerbell there ever was and you're even wearing REAL MAKE UP and have your best Tinkerbell smile permanently plastered to your face... and no one notices because your brother is a rockstar. About halfway through the mall she asked if she and Cordelia could go ahead without us. She did not like being overlooked, the poor thing.


It was still pouring when we got home, so King had to stay at home while the girls and I hit the few houses in the neighbourhood. The handfuls of candy for braving the weather definitely cheered Rachel up.

Friday, October 25, 2013

The Little Bull

It started with Cordelia. She and Kingsley like to play. She's a bit of a rough-and-tumble kid, so she appealed to King's daredevil side and started tossing his wheelchair around. She'd push him, he'd go flying down the hallway, hands raised and a big scream flying out. It evolved into him spinning around and chasing back after her for more, then just him chasing her down. Somewhere along the line, he started running into her. At first she thought it was funny. It's not funny anymore.

I first realized it was a problem when he almost took out an 18 month old at preschool pick up. He had that gleeful look in his eye that he gets when he and Cordelia are playing. Cordelia and Kingsley and I have had many talks since then about not running into people and not enticing anyone to run into them.

It's not working.

Two days ago, he plowed into Cordelia unprovoked and when she fell down, he attempted to roll on over her. Ughhhhh...

he always looks so innocent...

Let me tell you something: it is really awkward disciplining a child on wheels. When I put Cor or Rach in a time out and they didn't want to be there (shocker) it was very easy to pick them up and plop them back into their spot. It feels wrong to put King's brakes on and park him in a corner. It felt more wrong to put the brakes on his stander, because he can't take those brakes off. I could also put him on his bed, his booster at the kitchen table, his carseat and he wouldn't be able to go anywhere (but I don't). It's strange having so much control over a child his age. It's creepy. Until he started seeing everyone as his personal matador, I haven't had to discipline King much at all. He's a pretty easy going kid whose biggest offense was trying to speed down ramps. This is going to take some figuring out for both of us.

In the meantime, please keep all red capes away from him, okay? Or just watch your back.

Wednesday, October 23, 2013

Thomas the Train

Kingsley, like most kids his age it seems, has become infatuated with Thomas the Train, so it was an obvious choice for his costume this year. After the success with his pirate ship last year, I'll admit I was a little nervous. Fortunately for me, my cousin Natalie moved here last month to take a job at the big theatre here and she's in charge of props. She's crafty. ;)

We started with a box and a 'blueprint' as Rachel fondly called it. I tried drawing pictures of how I thought it could work.

my supplies in the top right: boxes; extra wide, black gorilla tape; red electrical tape; yellow electrical tape; blue spray paint; plumbing piece; and black spray paint that I didn't end up using

Second came cutting, which is extremely scientific and basically involves me dropping a box on Kingsley's head, taking it off, cutting, putting it back on, repeat, repeat, repeat until I realize the box is all wrong, toss the box aside and start again with a new box. I just cut space for the box to slide down over his wheelchair and rest on the various points along the side between his wheels and the chair. Then cut a bit out for his arms to reach the wheels easily.


Next came more technical work - tape. I bought this incredibly strong tape called Gorilla Tape. It makes duct tape look like stickers. I taped all the seams and bends and any point I thought might need reinforcing. This also makes it a tad weather resistant since we do live in Canada and there's a decent chance we may have rain or snow on Halloween.


Once taped, I spray painted it blue. And then painted it again because I'm a very uneven sprayer.


That's when Natalie stepped in and went to work turning a blue box into Thomas the Train.


She used electrical tape for his red lines and his yellow and red #1. We used more Gorilla Tape to make his neck (?? head??) and his bumper in the front, as well as his second set of wheels. His funnel was a random plumbing thing we found at Home Depot that was taped on with more Gorilla Tape and then stuffed with some fluff that Nat just happened to have lying around. Natalie drew his face on paper that we stuck to spare box scraps.


I had to fit his over the front of his wheelchair and leave the back open because of his casts and wheelchair modification in the front. Last year, the ship just dropped over top of him and was closed in the front and back, making it easy to lift him straight up and out. With his casts, there's no lifting him straight up. It tips forward off of his chair and I can get him out that way.


He is quite smitten with it. He had a Halloween party at his playgroup this morning and was so excited to drive Thomas around. For his actual costume, I tried to copy Thomas's drivers who wear blue suits and ties with a blue hat. I couldn't find a hat anywhere and a blue sweater (that he took off) and bow tie were the closest I could come to the rest.

If you have a kid on wheels and want more costume ideas or DIY instructions, take a look at:  http://wheelchaircostumes.blogspot.ca/

Sunday, October 20, 2013

Recovery

Kingsley's recovery from his tendon lengthening has been so interesting to watch. It fascinates me especially since I had my own ortho surgery last spring. To say that our recoveries are night and day would be an understatement - he puts me to shame.


Kinger was discharged Wednesday, the day after surgery. They were able to modify his own wheelchair with a foam covered board to rest his legs on. His casts make it difficult for him to sit back all the way in his chair, so he ends up being slightly reclined all on his own, like they wanted him to be. Huge relief.


He also fit in his own carseat! All of these things I was worried about and so far both are just fine.


And, he can (just barely) fit in his stander!


As for how he is doing, he is amazing. They gave him Tylenol and Advil in the hospital, but I haven't given him anything since we got home. He hasn't shown a moment of discomfort or complaint. He was tired the first two days, going to bed early and sleeping solidly, but that's it.  He can commando crawl, dragging those beastly things along behind him and he can even roll himself over both ways still, it's quite amazing to watch. He's also figured out how to sit on his own. I realize these things seem like mundane feats for a 3.5 year-old, but considering he cannot feel anything from about his waist down, he has to work out balancing without feeling what he's balancing on and now his two biggest props (his legs) are bound in a completely different position than he's used to. So... amazing, yep.


Tomorrow, he has these casts removed and new ones put on. I'm not sure if he'll be wearing these zimmer splints the whole recovery or not. Right now, he kind of reminds me of a hockey goalie. How very Canadian ;)



Friday, October 11, 2013

Counting Down

I love count downs. Count downs to holidays. Count downs to Christmas. Count downs on the radio. Turns out, though, I hate count downs to surgery.

Kingsley's surgeries so far have been like this:

#1, back repair
Doctor: Congratulations, it's a son. I'm going to prep him for surgery now.

#2, shunt
Doctor: Remember that shunt I said he'll likely need? He needs it. I'm going to prep him for surgery now.

#3, decompression
Nurse: the doctor just looked at the images. He needs surgery. You've got less than a week to get things organized.

#4, detethering
Nurse: the doctor just looked at the images. He  needs surgery. You've got less than a week to get things organized.

#5, tendon release
Doctor: when do you want it? Five months? OK, see you in October.

Five months is far too long to sit around thinking about the worst things that could happen and all the ways that this could go badly. The last month has been the worst. Between Kingsley's endless stream of doctors appointments regarding his bowel fun, there has been the consult for surgery, pre-admit appointments, a urodynamics (which he did like a boss), OT appointments, PT appointments, SLP consults, preschool discussions, and finally, a tour of the hospital to desensitize Kingsley to what was going to be happening. It's been a lot to take in and I'm just drained from it all. Spina bifida's impact on our lives ebbs and flows, and lately it's flowing over my head.


I think the hardest part of all of this has been not knowing what will happen after the surgery. Word on the street is that it could go one extreme way or the other: either he will carry on as normal, but with casts or our lives will go into a dead stop for 4-6 weeks while he has the casts on. His PT does not think we will be able to modify his wheelchair to accommodate casts and so will have to use a loaner from the centre which I haven't seen, but has been described as a beastly thing. If he can't get around in the wheelchair, can't crawl, can't sit unsupported, and can't go in his stander, the poor kid will be immobile. We have requested a scooter board be made for him, but it's not ready yet. Another huge issue is how he's going to fit in a carseat and where his legs will go while he's in one. It's another thing we won't be able to work out until he has the casts on him. And of course, how heavy are these casts going to be??  Even if I get him in a carseat, will this modified wheelchair fit in our van without breaking my back?

I am looking forward to this being over. Not only because I'm beginning to dread the casts, but because I'm excited for when the casts are off and he is able to do more. I can barely get his AFO on his one foot now and hate putting him in his stander because I can't get his legs straight enough and I'm constantly worrying if I'm doing more harm than good.

And so, we count down the last few free days before surgery. It's a nice long 4-day weekend that we have to visit with family and just hang out. Tomorrow, we are going to a wedding, Sunday is Thanksgiving, and Monday we will spend just enjoying our time together. Tuesday at 8am, his surgery begins. Counting down...

Wednesday, October 2, 2013

Talking to YOUR Kids

The little boy peeked around his mom's leg with wide eyes.
"Mom, what happened to him?" he whispered.
She looked over at us with equally wide eyes and quickly shushed her son.
"But, why is he in that?" he persisted.
"You can't ask that," she hissed, as she pushed him behind her leg again and continued to watch the show.
The boy peered out again and I caught his eye this time, as his mom looked over at me and made an embarrassed gesture.
"It's okay," I assured her, then crouched down beside Kingsley so that I was eye level with both boys, "He was born this way."
"Do his legs work?"
"Nope, that's why he has a wheelchair."
"Can he feel them?"
"Nope. It's kind of like if your foot fell asleep and you couldn't feel it."
He smiled up at his mom and then turned back to watch the show. Kingsley continued watching, oblivious to the conversation.

~

"That's Rachel's brother!"
"Ask her! Ask her!"
"Rachel! Why does your brother have a wheelchair? Hey, Rachel! What happened to your brother? Rachel!"
Rachel chatted on with her girlfriends, oblivious to the small group of boys behind her, pointing to Kingsley. At the same moment, two of them glanced up and saw me watching them. Their mouths snapped shut, but their eyes were wavering between curiosity and guilt. One bravely stammered: "Did he get hurt?"
"No, this is just how he was born."
"Do his legs hurt?"
"Not at all."
"Oh," they looked at each other and one shrugged before they turned away and carried on with their First Day of School reunions.

~

"How old is he?"
The little boy was standing with me just behind Kingsley, watching as he giggled and tapped the soccer players on the computer screen.
"He's three."
"That's like me!" he said delightedly, "E'cept I'm four."
I nodded, smiling.
"Can he stand up?"
"No."
"Can his legs work at all?"
"No, not really."
The boy thought for a second, then asked with a horrified expression, "But how does he PEE??"
I sat back on my heels, for once stunned by a child's question and unsure how to answer. Who was this kid and what in the world made him know to ask that? "Um... just like you..."
"E'cept sitting down?"
OH. Right.
"Yeah."
He slid in next to Kingsley and they kept playing together until it was time for us to leave.

~

The girls eyes followed us as we entered the room and sat down. Their table was not far away from us, so I heard as she turned to her mom and asked, "Mom... why can't he walk? Why is that boy in a wheelchair?"
Her mom glanced up casually at us and looked at Kingsley wheeling along behind his sisters.
"Well, some kids are just born that way. Their body can't tell their legs to move," she watched a second longer and then added, "His wheels light up, did you see that? Pretty cool."
As her daughter turned back to her ice cream, the woman glanced up at me, as if to gauge my reaction.  I smiled and gave a small nod.


Kids ask me about Kingsley all the time. Kids are naturally curious about the people and things around them. I am sure that adults are equally curious, but we have been taught to squash the urge to ask (or if that hasn't happened, we have a tendency to ask in incredibly awkward ways).

Kingsley is three. His speech is not entirely clear, when he chooses to acknowledge strangers at all. He doesn't respond or appear to care when people ask questions about him, so for now it's up to me to field the questions and I don't mind at all. I don't know if King will want to answer these questions or if he'll one day wish everyone would just shut up and leave him alone. Because of this, I feel a little bit inadequate as to what the universal 'right' way to deal with inquisitive children/people, but in my experience, most parents of children with a disability or adults with a disability would prefer you let your children ask, respectfully, and answer them as frankly and calmly as you can.

Here are a couple great tips on talking to your children about disabilities:
http://www.huffingtonpost.com/2013/08/02/disability-awareness-parents-teach-kids_n_3696279.html
http://crippledgirl.com/2011/03/tips-for-talking-to-your-kids-about-disabilities/

There was also an episode of Daniel Tiger's Neighborhood this past week that addressed a lot of the common questions I get about Kingsley when he makes friends with a girl who uses leg braces and crutches. It would make a great ice breaker for kids to get talking about disabilities: http://www.youtube.com/watch?v=jqjBSulEqYU


It's important to talk to them. To break down the fears of disabilities, differences, diagnoses, and equipment, we have to let children know that they're all okay. Wheelchairs are a wonderful thing. Communication aids are phenomenal. Hearing aids are fantastic. Feeding tubes are divine. They aren't scary, they aren't contagious, they just let kids be kids.


I talk to Rachel and Cordelia (and Kingsley) about differences and disabilities all the time. We recently read a couple of books about kids who use wheelchairs who are bullied (WHY OH WHY are all 'wheelchair' books about this?) because the other kids think they're different. They were flabbergasted. They literally could not understand why these fictitious kids could not see past the wheelchair and realize that the wheeler was just a normal kid. I love them for that and I so desperately wish that other kids felt the same way.


Sunday, September 8, 2013

The Bog

In my search to find places I can take all three kids to hang out, my friend recommended the Sifton Bog. I've been there exactly once in my life and it was with a client way pre-kids. I had completely forgotten about this little gem!

It was a nice, sunny day today and we had nothing to do, so I dragged the kids into the van and off we went. Let me tell you, it was a hard sell. When I explained it, Rachel and Cordelia kept repeating: "But that's it?? Just walking? Nothing else? But what else do we do there? That's it?..." and on and on.

The Bog is basically just a boardwalk. It starts with a stretch of gravel, which was well groved and impossible for King to push himself along. Short trip, then it was wood planks.



It's nice, even planks, very easy for Kingsley to go down. The only trouble was that it dropped off on either side, as in - one wrong wheel and King would've face planted down a foot or so into the dirt and trees. I didn't worry about the girls, but Kingsley loves to watch his wheels light up when he goes very fast (his preferred speed) and that means he doesn't look where he's going. I just held his handle the whole walk and it was all fine.

The boardwalk leads to:


There were a bunch of tween-ish boys when we got there, which ended up being awesome. They had nets and were getting right in where they shouldn't have been (so glad I'm not their mother!) pulling out turtles, tadpoles, and frogs and attracting fish for my kids to watch.


All three were in heaven. We stayed on that dock for nearly an hour, just watching and exploring.


I didn't get any pictures of Kingsley because I either had a death grip on his wheelchair to make sure he didn't wheel himself over the edge or later crawl over the edge when he was lying on the dock, dangling over so he could play with the water.

I will admit, I am not a fan of all of natures creatures. They're all fine from a distance, so it took a lot of effort not to shudder and run away when these boys were running over with turtles and frogs to show Kingsley. At one point, two dragonflies landed on my shirt. I know, dragonflies are all cool and pretty and whatever, but seriously, it took all of my energy to force a smile and not scream as Rachel took this picture. She was thrilled. I was paralyzed with fear.

GET. OFF. ME.

All in all, a gold star trip. Thumbs up for the bog, we'll be back! (with bug repellent)

Wednesday, July 24, 2013

#Pinterest #Win

Way back last year sometime when I first fell in love with the insanity that is Pinterest, I stumbled upon an upcycled crib that got me giddy. Let me just explain why this is beyond awesome.

First, drop-side cribs that are pretty standard are now banned in Canada. If you have one, you can't sell it and you aren't supposed to use it unless the manufacturers sent you the kit that makes it no longer a drop-side crib, just a giant jail cell with four nailed-in walls. This recall/ban happened when King was a baby sometime and did not phase me in the slightest. For starters - our crib broke the night I put it together when I was pregnant with Rachel (Picture this:  there is a hockey game on TV. A 7-month-humongously pregnant woman is putting together a crib. She asks her heavily distracted husband to just hold the board while she screws in the four screws. He agrees. She screws in one side. Someone scores. He lets go. The board splits. The woman cries. Then the woman calls her dad. He glues it back together. It holds three children because Dad is awesome) so, there was no expectation that we would be able to sell this crib either way. However, there's also no chance of hanging on to the crib for future generations since it's already obsolete. I was just thrilled to have ANYTHING to do with this crib other than the dump.


Another reason this crib was so awesome was that it was turned into a desk that could be set at basically any level. We have such trouble finding tables and desks that are the right height for King. Adult-sized are too high, child-sized are too low for his wheels. At one point, we had even considered having a table custom made for him, just to have one. Colouring, playdough, trains, cars, puzzles, snacks, tea parties - there are so many reasons a child needs a table that they can access. Kinger has become an expert at siding up next to things, but most of the time he just gets frustrated and gives up instead.

Sooo... for the last few weeks my sister has been visiting from BC and her husband came along. The man (thankfully) is incapable of relaxing and vacationing. Instead, he scrubbed windows, cleaned out window wells, mowed the lawn, fixed our gate, and then did the grunt work on this upcycle. The original upcycle had some extra board put over and edging or something... mine is not so fancy. Kevin sanded, primed, and then painted the original board with chalkboard paint. It looks awesome. Today, I put the pieces together and held my breath. There are three levels the board could be at, or there was the option of just breaking out some nails and setting it wherever I want. By some total miracle, the highest level was perfect!

PERFECT height in his stander! 

I don't think this could be a more perfect height for his wheelchair

the girls got super excited when they saw the new desk 

the perfect, accessible tabletop for trains! 

This may be my favourite Pin ever. I am so glad that I held on to it and made this happen. So, parents, hang on to those cribs and give your kids a free desk. Brilliant! 

Friday, June 21, 2013

The Big Wheels


“Why are they all staring?" demanded Albus as he and Rose craned around to look at the other students.
"Don’t let it worry you," said Ron. "It’s me. I’m extremely famous.” 

I have had that quote in my back pocket for two years now, just waiting for either Kingsley or the girls to notice the staring. People stare at Kingsley all the time. Sometimes blatantly, sometimes (not so)covertly. We have been at the girls school a lot in the past month so once again, I'm/he's getting the children gawkers and occasional brave question when they've slipped away from their parents: 'why does he use that?' Adults are different, they either avoid looking entirely, as if the wheelchair was wearing a wig of snakes, or they treat King 'special' because of it with waves, honks, extra candy (Halloween and Parades), and big 'HELLO!'s while ignoring his sisters.

People make assumptions about people in wheelchairs, that is becoming abundantly clear to me. Two major ones, I find. 

The first assumption is that they don't want to use their wheelchair, that it's some sort of burden. Let me clear this up right now: it's not. Kingsley LOVES his wheelchair. It is not as though he has the option of wheeling or walking and this is second place. His options are wheeling and being independent or staying where he is put down, waiting for someone to move him. Independence, at any age, is always preferred. Parents of kids like King often panic about this one: a life of confinement in a wheelchair, the horrors! How can they do that to their child? I can't speak for all kids, but I can never say enough how much Kingsley's life changed for the better when he got wheels. He was so passive before, never exploring, never moving. Now, he tortures me by trying to find ways to launch himself down any ramp at top speed. I am not burdened by his wheelchair. I love it. I love what it does for him. I love the independence he has. I do not love the lack of accessible kids activities, but I don't think this would be much better if he used a walker or any other mobility aid (were that possible, which it's not). 

I believe this assumption comes partly from our language, about which volumes have been written by the disabled community about our ableist biases. Right now, I don feel I need to get up in arms over whether Kingsley is IN a wheelchair or ON a wheelchair - I will one day take his lead on that - but I had a convo with my brother recently that I had to correct him on. He is a paramedic and was telling me a story about a call with a cool guy who was in his twenties, totally independent, nice guy, who uses a wheelchair. It went like this: 

BRO: ... so I was thinking about King the other day on this call, blah blah, and the guy was wheelchair bound so we got to talking about my [awesome] nephew and - 

ME: OMIGOSH!!!!

BRO: what? 

ME: with what? Is that why you were there? 

BRO: with what what? 

ME: what was he bound with? Ropes or chains? Did you have to cut him out of his wheelchair? Who did that to him???

BRO: oh. (Pause) Ah. Ok, ok. How do I say it? 

ME: he uses a wheelchair. Unless he was legit bound to it, but that would be abusive... Unless he's three and it's just a belt 'binding' him for safety... 

People aren't bound or confined to wheelchairs. They aren't torturous things. Like I said, the alternative is the state of confinement for Kinger. 

Wheelchair = freedom and independence
No wheelchair = bump on a log


The other assumption people make is a strange one. People assume he is intellectually disabled. I'm not sure what to make of this one. For starters, I'm not insulted by it as I do not think being intellectually disabled is an insult. I am just always caught off guard by it. Also, with SB there's a chance King may have learning disabilities once he gets to school. As of right now, we have no indication of any problems, he appears to be right on track with everything. 

The strange thing to me is how it's brought up. It's often by people I'm acquainted with. People who I'm closer to have just come out and asked if King's cognitive development has been effected and I'm fine talking about it. The main way others ask is by asking if King will go to the same school as the girls. I was so confused the first fifty or so times I was asked this. Of course he will? Where else would he go? I know in some places there are segregated or special schools. We don't have that at all here. There are a few classrooms in a couple schools for kids with ASD and then some for children with intellectual/developmental disabilities, and not all kids who fit either of these two diagnoses automatically go in those programs either, it's all case-by-case. Kingsley does not fit either criteria by a long shot. In fact, at this point I don't anticipate King needing any accommodations other than space, a private bathroom, and someone to help him take his mid-day meds, which we ensured when we switched schools. So, either people don't know that we no longer segregate kids with disabilities (which would be strange, since I'm pretty sure that hasn't happened in my lifetime) or they think he may belong in a special class. Which is a strange assumption since his wheelchair is the only thing indicating something different about him. 

There have been other comments also, like how I can keep him in high school until he is 21. Same idea, if it's needed, great. But I have no indication right now that he will need to make those victory laps to get through high school. Why would anyone else think that?

I have heard that as he gets older, people will start talking to me about him in front of him as if he can't understand or answer for himself. It happens now, but it's not abnormal to do this with kids his age.

People are strange about wheelchairs. I have tried thinking back to how I would have responded previously to someone using a wheelchair and I honestly can't remember. Maybe I was immune to stereotypes because I have spent most of my life working with people with physical and other disabilities and have had people-first language shoved in my face at every turn. Or maybe I was totally ableist and didn't even know it. Either way, I'm glad Kingsley is around to break down stereotypes for others. 

Monday, June 10, 2013

What's a Kid to Do?

The past year or so has been quite educational as far as what is accessible for children in our city. Kingsley has now had his wheelchair for 16 months and in that time I have been endlessly brainstorming about ways to keep him busy. Some places have been awesome. Some are total flops. There are so many things to do, places to go when you have children. So many places that you take for granted. You might notice how hard it is to maneuver a stroller through Gymboree, how inaccessible shopping is downtown, and even get irritated when the automatic door buttons are broken, but until you have an independently wheeling child, those annoyances suddenly become barriers in the most real sense.

Here is my run-down on the places in our 'hood that people hang out with kids:

1. Parks: there are designated parks in London that are meant to be more accessible and disability-friendly. It's a bunch of hooey. These parks usually include a play structure with a single ramp that Kingsley can roll up and hang out on a platform that then has steps up or down to get to the action. Sometimes there might be a bubble thing for him to look through. Wow. They also have dips in the concrete pathways that lead down to wood chips, I assume so that he can roll down into the wood chips? Brilliant. Unfortunately, the wood chips aren't usually topped up, so no matter where you're rolling into this section, you're dropping off a curb to get there. Into wood chips.

 yay! woodchips!!

wow! a ramp to stairs and a drop in the curb to roll on into those fun woodchips

There is usually a swing there that is for people with physical disabilities, in that it's a huge chair with a bars that come over your shoulders and connect between your legs, kind of like on a rollercoaster. They're adult sized. I read the fine print on the swing once, just trying to find out it's purpose as it is so big it fits two of my children at once. It says there are additional straps to support smaller people. The straps are not there.


There is ONE park we have found and - gloriously - it's the one closest to our new house! It has three whole ramps for King and each ramp leads to an actual activity, a piano, a finger maze, and I forget the other thing. Kingsley loves it. There are still wood chips, but (at least last summer) they were topped up to curb level and he loved to sit and play in them. It's a big playground with a lot of paths. It's not perfect, but it is somewhere that we can all go and have fun.


the school playground is also partially accessible

2. StoryBook Gardens: this is a big thing in our city and kids love it. I LOVED it when I was a kid, though it's changed a lot since then. When Kingsley was a baby, this was a great place to take the kids. Kingsley would nap, nurse, people watch, play in the huge sand pit, and have a great ol' time while the girls played. Now, not so much. The park itself is accessible and has lovely paths, but none of the structures, rides, or activities are wheelchair friendly. Kingsley is no longer content to sit and watch, so this place is out. Sadly.

3. Children's Museum: another huge thing for kids in our city and was when I was a kid as well. This place is accessible, has an elevator and ramps, activities at his level and that he can access, lots of fun. However, the museum has HUGE safety hazards in the form of big wide open stairwells on the upper levels. They are central stairs, right in the middle of the action and there is nothing to stop Kingsley from flying right down them or have another kid bump him in that direction. I am shuddering even typing that. There is also a big wide open stairwell down to a mermaid sand pit, where of course King loves to play. It gives me nightmares. It's on my to-do list to email them and tell them to put in some flippin posts at the top of the stairs, for Pete's sake. Until that happens (and I'm not holding my breath), we can't hang out there unless I'm one on one with King.

4. Indoor Playlands: there are basically three in this category - Adventures on Wonderland, Kidscape, and McDonald's. McDonald's is pretty much the same everywhere and they aren't accessible, not even remotely. And it's McDonald's. Kidscape and AOW have the same problem, being that they aren't accessible. They are big places with different spaces within them, lots of kids running here, there, and everywhere, back and forth. He can get in. He can sit and watch. As a baby, there were big mat areas where he could play, but that got old when the only thing I could do with him was PT exercises. Boring mommy ;)

5. Skating Arenas: they are accessible! We haven't been able to go this year, since my PT laughed at me when I asked if I could skate with a torn ACL, but last year we went and King had his borrowed sledge and did great. I have heard that you can even borrow sledges if you call ahead, but I don't know if that's true. The change rooms are just benches, like any skating place, I suppose. I'm not sure I've ever seen a change table, nevermind an accessible change table. We don't hang out long though, so have never needed one.

6. City Swimming Pools: they're kinda iffy. I mean, they are accessible, but not overly. A couple of them have lifts or ramps, but the city-run pools don't really have accessible change tables or spaces to change King other than a bench. It's fine now, at this age and with his abilities, but I know others have had issues with this. It's part of why we've put in a pool at our new house.

7. YMCA: oh, boy, I had high hopes for this place. ;) Fortunately, they have not let me down again! It's great. The change room is great, the pool has a ramp and a lift (though not to the shallow end, but this doesn't bother us right now). The gym, the playrooms, the activities for kids, and the whole place is very inclusive. Kingsley can go anywhere and do (almost) anything. They have a Treehouse room with a structure similar to the indoor playlands, but different in that there are things on ground level that King can wheel into/under. I've only gone to the one in the north end, but I hear the other Y's are also good.

8. Libraries: I can't say enough about how much I love our public libraries. We've been to a handful now, and not one has disappointed us. They all have train tables, books (obviously!), computers, tables at Kingsley's height, toys, floor space to sit and hang out... they're just awesome. We go weekly, sometimes more, all year round. All three kids love them. I love them. We love them. Except the family bathroom in the Westmount one has a hugely heavy door that does not have a button to open it. It's ridiculous. But other than that, love. ;)


9. Movies: Jeff and I have always been drive-in people. We used to drive his half-dead car with the dead stereo to the outskirts of the city and listen to the movies on a beat up old ghettoblaster that ate batteries for breakfast. It was cheap and we could bring our own snacks. Anyway, it's also a great place to bring babies because you can roll up the window or strap them in a wrap and go for a walk if they started to cry. Now, the kids understand what 'adult movie - go to bed' means so we wait until the first movie is a family movie and pack up the kids. The location itself is not accessible, not the bathrooms (unless there's separate one I've never noticed?),  not the gravel paths, nor the playground. But, we can all go and hang out by the van and play, get comfy in chairs and make it work for now.


We took Kingsley to his first movie theatre a week ago! It was great and he did surprisingly well, quite surprisingly considering how big and loud the theatre is. The only issue is that the wheelchair spaces are all down in front and the good theatres are the really big ones which means you'd have to be looking up to watch the movie. Not my favourite place to sit. We parked his wheels and he sat on my lap, which is where he wanted to be anyway.

10. Other People's Houses: this is one that is starting to become a problem and I don't see that changing. He's outgrowing his Bumbobile. His little bum and skinny legs fit in the seat just fine, but it's low to the ground and at his age, kids start to stand up more. To be at the level of his peers/sisters, he prefers his wheelchair or stander. Unfortunately, people's homes are not generally designed to be accessible so his big wheels don't fit and kids don't stay put. They run upstairs to show you their room, run downstairs to grab more toys, want to play outside... And Kingsley is left there with me and the other mom. I am getting better at inviting people to our house to play, since it's pretty kid friendly and King can obviously get anywhere. Even going downstairs, other kids are very eager to wait for Kingsley since it means they get to ride the elevator. This is one hurdle that won't get any easier as he grows up, but I'm not dwelling on it yet. We will tackle it as it comes.

11. Bowling: this is one rare gem that we've stumbled upon. There's a cool place here called the Palasad where you can play arcade games, bowl, eat, and a bunch of other stuff. There was one right by our old house that underwent big renovations and one of the things they did was make it completely accessible! I took the kids to a birthday party there recently, full of anxiety, and as soon as I walked in the door a staff member appeared out of thin air asking if King was going to bowl and they had a ramp there before we even got to the alley. I haven't been to the other big bowling-fun place here, Fleetway, but I'm told they are connected with an organization for adults with disabilities and have made sure it's accessible for everyone.



That's about all that I've found. The malls are also all accessible, but Kingsley's not a huge fan of shopping without an ice cream bribe. Fortunately right now we are surrounded by construction, which is still endlessly entertaining for Kingsley. When we get really bored, we walk up the street to the end of the subdivision where they are preparing the next field for an apartment building. There are a lot of diggers and dump trucks, cement trucks, and cranes around here. The construction crews are so friendly to Kingsley, waving and honking their horns. He loves it.

If there are more places to go that I don't know about, let me know! It's going to be a long summer. :)

Sunday, June 2, 2013

This is Where the Sidewalk Ends

Allow me a moment to whine. 

I have a whole other post planned about how there isn't all that much to do around here when you're rolling, but one of the biggest... I don't know what to call it... Struggles? Frustrations? Disappointments? It's my other backyard. 


Across the street from us is a water drain off thing which is basically a pond, a beautiful, peaceful, grassy, space with wildlife and wildflowers. There's also a ravine and a few pathways and so much to explore. Unless you are using a wheelchair. <insert sad face>

It's been a rough couple of months watching it all blossom from my window or front porch. I desperately want to take King over there to explore. The dilemma is that I can just now walk on uneven surfaces and I can just now start to carry his weight, but I cannot do both at the same time, not by a long shot. 


Today, we had a perfect spring morning, Jeff was home and I just grabbed Cordelia and left the house. It was awesome. We saw new little geese families, snails, singing birds taking baths, hawks soaring. We picked wild flowers and listened to the wind and the water lapping. 

It was so bittersweet. 


Usually, the restrictions that a wheelchair places on us don't bother me all that much. Today, they did. 
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