Showing posts with label equipment. Show all posts
Showing posts with label equipment. Show all posts

Saturday, February 1, 2014

School

It is February and I have a four year-old, which in these parts mean one thing: SCHOOL. I know it's different across the country and everywhere else, but here our kids start Junior Kindergarten (JK) September of the year they turn 4, which means it is now time to register my boy. It's optional, I can wait until Senior Kindergarten (SK) or even grade one, I think. But I don't want to, he's ready for this.

Step One is registration. This happens right now. It involves contacting the school for a registration package and tour of the school, which we didn't need because the girls go to the school and I've been there enough. If your child is like most children, you drop off the paperwork and that's the end of it until the orientation stuff happens later in the year. If you're child is like Kingsley, you have to casually mention that to the school secretary. It's hard to be casual. We get to fill out all of the paperwork and then move on to step two.

Step Two is a meeting with the principal. The school secretary is going to call us back with a time. I'm told this is more of a casual meeting, just to feel things out and understand who Kingsley is.

Step Three is a big meeting with all of Kingsley's people and all of the school's people. We discuss what he will need to be successful in school and then how that will all be put in place, so I'm told.

I am not all that concerned at this point. Kingsley's needs are pretty straightforward:
* he needs a barrier-free environment, which the school is as far as I can tell
* he needs help with his bathroom business and medicine during lunch hour
* he needs someone to transfer him from his wheels to the floor or to a chair and then back whenever he wants
* he needs a chair at table height that is adapted somehow so that he can sit stably to do seat work and eat comfortably
* he needs someone to help him with his outdoor clothes, especially in winter and possibly help him navigate through recess
* as of now, he needs someone to make sure he eats, drinks, and doesn't choke or puke; this could change if he just decides eating is cool

The school should be able to figure all of that out. We are hoping that there will be an EA (educational assistant) in the room to help with the transfers and transitions to/from outside and hopefully with snacks/lunch and recess. I have no idea how the bathroom/medicine stuff works, but it will be figured out. Kingsely's current PT will help get the chair ready by September.

I have homework to do in the meantime. First, I have to figure out how to answer all of this paperwork. There are so many questions that don't have simple answers. Second, I have to make one of those All About Me books for Kingsley - an easy-to-read book discussing Kingsley's strengths, interests, diagnosis, needs, and whatever else I think his school should know about him. I have seen fabulous ones that are super creative. I am not creative. This will take some figuring out.


In the meantime, we are still in the depths of winter and up to our eyeballs in snow. It warmed up enough that I was able to take Kingsley out to play in the snow today, which he loves.


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. 

Monday, November 18, 2013

Casts Off

The casts came off today.

It was a very strange day. Kingsley didn't want to take the casts off. He kind of gets set in his ways that way, once something is a certain way it has to be so. I don't think he was actually attached to them, but we did make the mistake of calling them 'Thomas blue' to match his Thomas costume and so he was very sad that he'd have to have his Thomas Casts taken off. He's very sad that Halloween is over.

His casts were cut off without any drama (though don't you have that moment of panic where you're sure that the saw is going to accidentally slice through skin??) and his surgeon came in to check on him and see how his legs had healed. She was very happy, they're straighter than even she thought they'd be able to be.

Kingsley lay there as the three of us stood over him - the man with the saw, the surgeon and I. I was watching his legs as we were chatting and suddenly I noticed something.

"He can't kick."

His surgeon tried to reassure me, he'd probably need some time to strengthen the muscles again, he'd get the strength back...

"No, I mean he couldn't kick. He can't do... that."


video

This whole thing came about because Kingsley has a bit of hamstring, but no quad. He can pull his legs up, but not put them back down. He bends at the knee, but not straighten. Not at all, ever. He pulls his legs up, bending his knees and unless gravity pulls them back down, they stay there, bent. 

"IT'S A CHRISTMAS MIRACLE!!" the saw guy seriously said that with a huge grin and I almost high-fived him. 

His surgeon thinks it's more likely that he was so tight he wasn't able to push back against it, but she couldn't say for sure. We will have to see what happens next. 

I made him do it over and over and over and over. We got home and I made him keep doing it. 

In. Out. In. Out. In. Out. 

I was so excited! 

You know the term 'bittersweet'? It pretty much defines SB. Right in the middle of giving King another thumbs up for kicking me I heard this bored voice in the back of my head: so what?

So what. 

Really, what does it matter? He isn't going to walk. He isn't going to stand. It's very sweet that something new and unexpected happened, that the surgery was such a success, but nothing really changed, that's the bitter truth. 

Wahn, wahn, wahn....

I am very thankful that the surgery was such a success. I'm trying to see this new little movement as a sign that he really did need the surgery to happen. As a parent, entering the world of 'elective surgeries' is a very scary place to be. Potentially putting Kingsley through a surgery that ended up being useless somehow making things worse would be dreadful. That didn't happen, so huge sigh of relief there. 

Before and After: the top is before, which should be obvious. This is as straight as his legs would be when he lay on his tummy. His feet are upside down, sorry, but you can still see how pronounced his 'ballerina foot' was compared to now when it's just a foot. 

Tomorrow, we see his orthotist and he will be fitted for new AFO's and we will talk about RGO's. Kingsley has loved being able to be lifted into standing at any time with his full leg casts/splints on the last 5 weeks. He has finally expressed an interest in standing and walking, which has never happened before. This is perfectly timed with new gear that will get him more independently upright than his stander. He will need a lot of motivation to use RGO's and he seems to have it. Fingers crossed for our next adventure.  


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.

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.


Saturday, September 7, 2013

The Little Fish

Jeff and I met as lifeguards, have I mentioned that? We both grew up in water. I did swimming, he did diving and waterpolo. We both love being in the water and are completely comfortable there.

Rach is reenacting our lifeguarding days

Having a child who can't use his lower body stumped me. How in the world would he fit in our family? How would he go to swimming lessons? How would we take him to the beach? What in the world would he do in our backyard pool??


I started taking Kingsley swimming when he was a baby at our Centre which has a very, very warm little therapy pool. At the time we moved into this house last spring, I'd say Kinger was the most comfortable in the water of the three of them. He didn't panic when he was dunked (though he didn't like it either), he could float almost on his own on his back, and he really loved just hanging out in the water.


Through sheer exposure to water, the girls have magically learned to swim this summer. It's truly blown my mind. Rachel has gone from a timid floater to swimming in the deep end all day, every day. Cordelia isn't comfortable in the deep end yet, but she's gone from freaking out if her face got splashed to swimming underwater.


Kingsley is finding his way. He wears a puddle jumper in the water, which is a fabulous invention, in my opinion. In June, I had to be thisclose to him to make sure he didn't tip over and get a big mouthful of water. He didn't know what to do with his arms, couldn't stay level, and only went where we took him. I predicted the most boring summer in the world, having to stand in the shallow end keeping him from drowning while everyone else got to actually swim.

workin' on the chest muscles

Fortunately, I was totally wrong. King is a little fish! I don't even have to be near him, he just swims around using his arms. If his face goes in now, it's because he wanted it to (or because Jeff dunked him). He likes to hang out on the stairs and play with his trains (aka bath toys), take the dog for a walk (aka hang onto the tube for the automatic pool vacuum), do push ups on the lane rope, and ride on my back as I swim around. He's also good at jumping in (aka sitting on the edge and throwing himself into the pool).


I don't know what the future holds for him in the pool. I know there is a place I can access for 1:1 swimming lessons that I'm going to tap in to soon and see if they can teach him to swim without his legs. I'm confident that he'll find his way.

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. :)

Thursday, March 14, 2013

R.G.No.

In the midst of our crazy move and unpacking frenzy, we had an appointment to have Kingsley casted for his RGO's. RGO's are Reciprocating Gait Orthosis. They are basically braces up to his waist/torso with a spring action so that when he leans back the right way his foot will kick out. Lean the other way, the other foot kicks out. It simulates walking for someone who cannot walk themselves.

They receive mixed reviews in the SB world. Older generations remember them as torture devices, but current parents of younger kids like them. From talking to some PT's about the way things used to be, there used to be more of an attitude of 'walking at all costs', which I don't feel like there is anymore. Wheelchairs weren't even mentioned until kids were 3yo and all walking options had been addressed. Jeff and I know that RGO's are not going to be a functional means of walking for King. We have realistic expectations of this being an exercise for him, another way for him to be up and doing something. I don't plan on taking him out around the town or walk to school or anything.

My reason for wanting Kingsley to have RGO's is that I see a future for him in which there will be some way for him to be upright, functionally, if he wants to be. I don't know what it will be or what it will entail, but technology is progressing so quickly that things like Segway's and Exoskeleton's are only going to open doors. I want him to be confident being upright and for his body to know what it feels like to move this way. I want to provide these opportunities for him now, just so that nothing is closed to him later.

Which brings me to his casting appointment.

We had our initial appointment with the orthotist a few months ago to discuss it and get the paperwork started. Sidebar - these fun little braces will cost over $12 000. For real. Fortunately, we have a program here called ADP that covers 75% of the majority of equipment we will need for Kingsley, but do the math and *choke*, these are no joke.  There was very little chance that ADP wouldn't cover them, we weren't worried about that, but they were a little slow on their approvals lately, so we just let them take a few months to sign back the form while we dealt with house stuff. Now, the approval was in, we were set.

Unfortunately, the orthotist gave us some bad news. Kingsley's legs are too tight. He can't straighten his knees and his hips are getting tight now also. Kinger has some unique functioning of his legs that doesn't always work in his favour. One is that he can flex his hips and bend in his knees a bit. This tucking action allows him to lift his feet a couple inches up off the floor when he's seated on a chair (use your abs and hips only to do this, that's what he has). It allows him to also tuck and get into an all-fours position. He can't, though, squeeze his knees in to close his legs, nor does he have any quad at all, so when his legs tuck in, he can't push them back out, they either fall down naturally or they stay. Mostly, they stay. He sits crossed legged, he sleeps frog legged on his stomach, he kneels all splayed out. He's only ever stretched out when he's in his stander and even being in that 1-3 hours a day is just preventing him from getting tighter, not loosening him at all.

What this means is that Surgery #5 is coming up. They will have to release his tendons, both legs and his ballerina foot/ankle, followed by casting for 6 weeks. Yikes. This will allow him to have straight legs again and a foot that more easily gets to 90 degrees. It's not a surprise, we knew at some point this would have to be done.

It is important that we do this surgery first, even though technically they could accommodate all of tightness in his RGO's. Accommodating may make them harder for him to use them and for all of the reasons mentioned above, we really want this to be something that Kingsley does not hate or resent. We will be heading back to ortho in a couple months and see what she thinks, start to plan. I'm hoping to wait until the fall. I have my own ortho surgery in two weeks (eeek!!!) and it'll be a couple months before I'm back to normal, followed by summer with a brand new pool - hello! Can you imagine how horrid that would be for poor King?? Six weeks in casts will be hard enough.

This surgery doesn't scare me that much. Surgery is surgery, so it doesn't thrill me or anything, but surgery on his legs seems so much less intense than, you know, brain surgery. One day at a time.

Tuesday, March 12, 2013

Crazy Good

We are in our new house and it is amazing, there is no other word for it.

The move was on Saturday (my birthday!) and it went perfectly. It was so smooth, I don't think there was a single glitch. Everyone arrived when they were supposed to, everything was delivered and installed on time, and the kids did great at all their grandparents houses.


I know I promised pictures and details, but this house is so beautiful that any pictures I take right now would just not do it justice. I am very good with the unpacking, but things are still a little crazy.

I will say though, I can not get tired of asking, "Where is Kingsley?" all day long. The independence he has here is incredible. He loves to explore, to touch things, to look, to play, to just GO. He has only used his wheelchair in our old house a couple of times and even then could only get so far. The bumbobile is amazing, but puts him at the height of someone on their hands and knees. Here, he spends most of the day in his dynamic stander or wheelchair and he can access every part of every room. I cannot express how grateful I am that we were able to build this house.

He has a new bed that arrived the week before we moved in. It's a top bunk, with the full side rails that come off, but it's a double bed size. We got it from Crate Designs, which is an amazing Canadian company. He loved playing in his new bed the few times we visited the house and watched things being delivered or installed, but come the first night he gave me a look of pure terror when I announced it was now time to SLEEP in the new bed that he loved so much. It took him until nearly 11pm to fall asleep, constantly waking to check and see that I was still there, but he eventually did and the next two nights were/are just fine. He's been skipping his nap, so I'm sure that's helped.


I'm very happy now that the move was delayed a week and that this week is March Break. Having the girls home does slow me down a bit, but our days are so busy settling in that having to get up for school would be dreadful.


Back to unpacking now. :)

Wednesday, February 20, 2013

The Back Bone's Connected to the...

We got in to see ortho! I was sent an email this morning about a last minute opening this afternoon. Craziness, but we made it happen.

I really like our ortho. She's new, but seems to really know what she's doing. SB isn't the most popular diagnosis these days, so I sometimes get the impression that some of King's specialists or people are kind of dusting off cobwebs to remember SB details when we talk. I don't get that with her, she asks the right stuff and looks at the right things.

Anyway, she was not concerned with his back. She said a degree or two a year is to be expected and he looks alright to her. She and I talked over tethered cord, what I'm seeing, why she's not concerned about that. Lots of relief. She sent him for x-rays afterward (which he did not like) to see how much he's changed/if he's changed. She also recommended that his wheelchair get adjusted since the kid is growing and this is likely impacting his stability, which is totally true. We also talked a bit about long term scoliosis, what it involves, what it would look like if there were actual problems, what those problems would mean. Nothing I need to worry my little head with now.

She also checked out his feet while he was there and asked about his ballerina foot and whether it was getting worse. She thinks that he will likely need a lengthening in the back of his ankle at some point, to keep his foot at 90 in shoes. Right now, his AFO's are doing the job.

So, phew! She's going to call us if there's something on the x-ray we need to know about, but otherwise, let's get on with the move!! :)

Friday, January 11, 2013

A Word About Emily...

This month Parents Magazine decided to put an adorable little 3.5 year old girl on their cover. This is not surprising or particularly newsworthy, except that the little girl has SB and she's standing there wearing AFO's and holding onto her gold walker. I'm sure this is not news to most of you ;) but I will force it down your throat a little more, because it's super awesome.

Emily is on the cover because she made a great cover model. There is no article about special needs or SB or anything relating to that aspect of Emily's life. She's featured on a page showing how to make cute Valentine's cards.

It's amazing. It's such a little thing, but it has touched so many of us.

Kingsley doesn't see a lot of kids on wheels. We know two boys, both a bit older than him, that use walkers, but the vast majority of people he sees on wheels are elderly or adults in power chairs. To see a little girl his age, wearing the same kind of braces he wears, using a walker on a magazine like any other kid... it's awesome. It's normalizing.

I was out getting groceries tonight and I wandered down the book/card/magazine aisle looking for things for Kingsley's birthday party when I remembered the magazine. I zipped down the aisle and there it was! I may have shoved a bunch of other magazines out of the way so nothing was overlapping with it. They should thank me, really. It'll sell out now. ;) At check out I was grinning ear to ear. I had to stop myself from accosting the check out woman with 101 reasons why it was the Best Magazine Cover Ever.


I showed the girls the cover when I got home. Cordelia smiled and then said she wanted to eat her necklace. Rachel said it was a pretty necklace, then paused. She looked at me with a little smile, looked back at the picture, looked at me... "She has a walker-thing." I confirmed that yes, she did have a walker. I pointed out that she also had the same orthotics that Kingsley wears. She said: "Ooooh... Her skirt is like a fairy skirt." Cordelia came back to peer over Rachel's shoulder at the cover again. I'm not sure if she was looking at the walker, the AFO's, or the skirt, but she nodded and that was the end of it. AFO's and wheels are everyday things for my family to see. Thanks to magazines like Parents, they can be normal for all families to see.

Monday, January 7, 2013

A Resolution

I spoke with the General Manager at the YMCA this morning regarding my visit last week and what I had perceived as a message that Kingsley and his wheelchair were not all that welcome at the Child Minding program. As he said in his email, there was a terrible miscommunication. There building is completely accessible and welcoming to people of all abilities, as they state on their website. He told me about a few programs King can do while he's there, different ways he can participate, and of course that I can drop him off and go work out anytime. He sounded very sincere and welcoming.

I am immensely relieved. Part of me knew this had to be the answer, but... well, there's often a 'but', isn't there? I have replayed the conversation in my head over and over again over the past few days, thinking about how I had come to the conclusion that he wasn't welcome. I guess, if it was so obviously inclusive and accessible, the conversation should have gone like this:

Me: ... and the room is accessible, right?
YMCA: Yes, of course, our whole building is.

The end.

Instead of:

Me: ... and the room is accessible, right?
YMCA: [Any other response]

If the answer was so simply 'yes' then why did I get told everything except 'yes'?  I don't know, it seems more like a staff issue than anything else. It doesn't really matter since 'yes' is the actual answer. Kinger and I are going to go by sometime this week and have a tour and check out all of the places we can both hang out now that the girls are back in school and winter is making us stir-crazy.

Thursday, April 5, 2012

Transfers

I give up.

I completely and utterly resign myself to the fact that there is no point in worrying about Kingsley in any capacity. I worry, I stress, I wonder, I ponder. I question whether he will do whatever and when something will happen.

It's useless.

My latest query is when Kingsley will learn to transfer himself in and out of his gear and how he'll do that, when he'll be strong enough... We've been trying to make some long-term decisions and his timeline for independence is a factor, see. I've been talking to his therapists about it this week, some other families, doing a little Googling and Youtubing.

I think he was listening.

Today, I heard King chase after his sisters in his Bumbobile as they ran for the stairs and then up them. I heard bumps and thumps. I called out and he responded calmly, letting me know he was fine. He sounded amused.

This is what I found him doing:

video

Right after this, he decided to hoist himself up on the bottom step. He didn't quite get there, but he did manage to get his chest up onto the stair. And then he stole my iPhone, turned it on, found the photo icon, and watched himself pop out of his chair over and over and over.

So, that's that. No point worrying anymore! ;)

Thursday, March 1, 2012

Living

I've been a total blog fail!  I've been blanking on anything to blog about lately, which I suppose is a good thing, right? We've just been doing boring life stuff, no excitement, no drama, no scares... just the way I like it!

And so for the second  time this year already, I'm going to do a pathetic little recap of all the big things in our life that we are currently consumed with...

1. Rachel's birthday. It's on March 19 and we are planning an epic Mermaid party to beat her Fairy party from last year. When I say 'epic' I do not mean that this will be the type of party that ends up on pinterest, because I am just not that put together, but it will be awesome for her... thanks to pinterest ;)

2. My birthday!! It's next week and to celebrate, I'm going away for the weekend. I've never done this before. It's funny because I'd be the first to give someone a funny look when they say they can't leave their non-breastfed kids, but even though King is no longer attached to me I just haven't ever gone away. So, I'm going. Two days without children or Jeff. I'm giddy with the thought of it!

3. Kingsley finally got his custom seat for his wheelchair! It's GORGEOUS and makes his ride look so cool. He loves it, I love it. I have no pictures. Total fail.

4. Skating! I took Kingsley and Cordelia with my friend Jen and it was a total success!! I'm just so proud of the two of them. We're going to start going a lot more regularly.

5. We are waiting to start speech therapy. He's at the top of the list and we just need to get ready for the call. In the meantime, I feel like he's communicating more and more. I'm so torn on this whole speech thing, it should probably have it's own post, but oh well. ;) I swing from KNOWING that Kingsley does things in his own time and worrying that things don't always go the way they're supposed to with him. Really, if I don't think about it, it doesn't bother me at all. I understand most of what he's trying to communicate to me and he responds as if he understands everything I'm saying to him. Speech will come.

6. Yoga. OK, this is just what my life is revolving around! My beloved Moksha Yoga finally opened another studio TWO MINUTES from my house. 'Love' doesn't begin to describe it, I pretty much want to camp out in their parking lot. I used to go to hot yoga all the time before kids, between pregnancies, and then life just got insane after Kingsley and I haven't been back on my own. I didn't know how much I needed this until I stepped into that hot room and felt like the weight of the last three years just lifted. I get up at 5:15 in the morning to go, that's how much I love it. The downside is that I tend to go to bed a lot earlier and obviously my blogging time has faded away. I'll work that out.

7. Crafts. We've created a crafting monster. Actually, I love it. The three kids sit at the kitchen table together and craft. Kingsley's mediums are crayon and sticker. He's getting quite talented. Mostly, I think he just loves being there with his sisters doing big kid things.

And, yep, that's about it. King's doing great, he's gotten over his colds, he flies around the house getting into trouble, and he's expanded his Love List to include Tyrone from the Backyardigans in addition to Elmo. He's having another brush with fame, but that I really will save for another day. ;)  And I'll start taking pictures, too!

Happy March!

Wednesday, February 8, 2012

Dirty Clothes

It's a little odd, but I get so happy when I see dirty clothes these days.  

Dirty clothes because it's Kingsley that is dirtying them. For so long, his clothes looked pristine, like they weren't even worn. I've made a lot of money reselling them, but that time has passed! 

His clothes get food stains because he is eating food and feeding it to himself. Such a strange hurdle that has everything and nothing to do with SB, but one that we are getting over one meal at a time. His diet just continues to expand and he's starting to eat as much as the girls. No fruit or vegetables though - that's just craziness. 

His clothes are also getting stains all up the sleeves because he rests them on his wheels - his bumbobile wheels, his wheelchair wheels, his dynamic stander wheels. He rests them on there when we're outside the house doing stuff and they get just filthy, but it's awesome because he's out there, getting around. 

His clothes are dirty because his belly sweeps my floor as he crawls from one side of the house to the other. He used to be so passive, we worried that he'd never learn to crawl. He'd just lie there or sit propped somewhere, content to just be. He's not remotely content with staying still now.  He moves from sitting to lying to rolling to crawling to lying to sitting... and then all over again. But it's on the floor where the girls spill and dribble and stomp through in their boots, so he's messy. 

His clothes are getting markers and glue and paint and glitter all over them because he loves to play with his sisters and do what they're doing. He's so much more interested in toys and games and crafts. He colours pictures, he stabs paper with markers, he freaks out when he gets glue all over his hands and wipes it across his shirt... okay, that's not totally awesome, but it's still progress.  ;) 

At night when I take off his clothes and put on his pajama's, I love looking at the mess he was wearing. I used to feel guilty about tossing his clothes in the wash since they pretty much looked the same going in as going out. 

Who gets excited about dirty laundry? This mama. :)  I'm not taking any of this for granted. 
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