Monday, July 29, 2013

Four Eyes

Remember last year when Kingsley went cross-eyed and scared the pants off of us thinking there was something major going on and it turned out to be a random thing that corrected itself?


We went to the eye doctor today and turns out he's still doing great, his vision is great, his eyes are healthy, everything is fine still. Same with the girls, 3 kids with 6 healthy, perfectly working eyes. Unfortunate, kind of, since they are so ridiculously cute in glasses...


I wasn't so lucky! It's funny how a lot of people don't know that I wear contacts, considering how bad my eyesight is (-7.00 and -8.00 for real). Sadly, I rarely ever wear glasses. The ones I have are from before I even got pregnant with Rachel, so, I was a bit overdue for a new pair. As always, I have big ambitions to actually wear my new glasses in public. We'll see. ;)

Sunday, July 28, 2013

The Cuz's

July has been a super busy month, due mostly to my sister visiting with her crew. They live way across the country, so we don't get to see them that often. Fortunately, when she does come, I steal her camera card and take all of her pictures so that I suddenly seem way more adept at photography than I really am.

 at the drive-in, while King was trying to escape and roam free in the weeds

 don't you sometimes wish you could still sit at the kid table? 

 I love how this shows their growth with their legs

 movie night!

this picture just makes me laugh, from cross-eyed Rachel to Kamille's gansta face

summer is not complete without a lemonade stand 

I love how these 5 get along like they're always together, they just gel. Something about their ages this visit was just perfect - they never fought. Can't get better than cousin besties. 

Saturday, July 27, 2013

Going Nowhere Fast

*** This is a poop post. The vast majority of you will want to just skip on over it. It's okay. Come back soon, I'll have something less gross to talk about, like swimming or my nieces visiting or anything that isn't brown. For those of you walking this walk, carry on. ;)

seriously, mom, this is so gross

So, the ongoing frustration continues. After being referred to the new GI doctor, I had high hopes about finally coming up with some great plan to deal with bowel business. I spoke with his nurse practitioner who said she wanted us to do a full clean out before the next step. 

Let me tell you, we've done clean outs before, but never to this degree. I wanted to vom on an hourly basis. Once again, both King and I were traumatized by poop. I will spare you the gory details, but Rachel and Cordelia are more than willing to describe the puddles. 

Puddles, people. 

I now have a toothbrush reserved specifically for the task of scrubbing itty bitty crevices in King's wheelchair. 

Anyway, once that was done, we found out the answers we wanted (there are no little caves or cavities made in his colon anywhere created from constipation and holding stale poop for endless amounts of time. yay.) and Kinger was all cleaned out. And then some. I called up the nurse, eager to hear what the next steps would be. 

Give him fibre so he's not constipated. (he's not constipated)
Give him other fibre so his poop is solid (his poop is solid)
[insert review of King's diagnosis and what neurogenic bowel means for him. for the second time since apparently it wasn't written down the first time. reminder that we want surgery. in the meantime, we want something else to do so he's not going all day, every day]
Try to train his bowel to go at the same time every day (November. Every night since November)
Have him sit on the potty multiple times a day (haaaahahahahahahaha!!! 30 min/day, multiple times a day?? good one)
OK, have him sit on the potty in the morning before breakfast, instead of at night (sigh. really? ok, we'll try)
Ummm.... (ummm??)
Maybe when his lower ab muscles are stronger he'll learn to push. (*crickets* uh... yeah and when his leg muscles are stronger he'll learn to walk, right? kthxbai)

And that's where I hung up and put my head down on my kitchen counter and King rolled up and asked me if I was sad. Oh, buddy. 

I don't know where we go with this. No one wants to talk about enema's, no one has any other suggestions. No one other than his urologist and I seem at all concerned that the train doesn't stop. I'm frustrated. 

A couple of interesting things DID come out of this experience though. The first was that just before we did the clean out, King did get constipated. Nothing changed - his diet, his liquid intake, his liquid output, his health, his activity level, his medicine - other than this. It's just one of those odd things that happened, but it's never happened before without some ominous reason.

The other was that Kingsley is acutely aware of every time he poops, toots or has a stomach gurgle. This is also new. He gets a look of absolute panic whenever it happens also, which makes me sad. I'm glad that he's aware of it, so that he can be changed quickly. I am not glad that he is so bothered by it. 

 are you STILL talking about this??

That's it, I'm all done. We have been having a great summer other than this nasty bit. Hopefully, it'll be our only blip! 



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! 

Saturday, June 29, 2013

A King Lives Here Part 2

Very exciting news: as of this week, our outside is officially finished! Unfortunately, it now suffers the same fate of the inside in that it requires some fancy decorating/landscaping and looks a little bare in the meantime. Not that anyone actually cares except me ;) 

The first and most important part of the outdoor design was making all three entries accessible. As with everything else, we didn't want it to scream WHEELCHAIR USER LIVES HERE. We chose to do everything outside in concrete because it could be a smooth ride for King and could be uniform in all areas. They worked with the grading of our lot so that we wouldn't have to use railings or ramps of any kinds in the front yard. The front door area is covered, the pathway from the driveway to the front door is slightly inclined, but King can easily manage it even now. 

pretend you don't see the garden of weeds begging for attention

The garage is the second entryway that we have made accessible. From the driveway, through the garage and right into the mudroom is a slightly inclined but easily manageable pathway without any stairs. 

On the other side of the garage is a pathway to the backyard. It is 4 feet wide because of a few areas where things jut out and would interfere with the required 3 feet to make it an accessible pathway. There is a door from the garage to this path on the side of the house that has a step down. We couldn't make that accessible, but figure it won't be a big deal. 

 you can see on the fence post there my dad and Jeff tried to make a little string King could use to open the gate since the latch is too high up for him to reach. we'll have to figure that out as he gets older.

At the end of the pathway to the backyard is a junction where you either go down a couple steps to the grass or go to the patio on the left. We mostly just block off this area right now until King is old enough to understand why going down stairs in a wheelchair is a bad idea. 

this is the view looking from the front yard and then looking forward from the backyard. we had to use retaining wall there to keep the pathway level. Eventually, that blank space will be landscaped into something pretty. 

The back patio is my favourite place right now. It has our third accessible entry for Kingsley that leads into our kitchen.  The patio is also concrete and obviously level with the main floor. They had to put a foundation under it to hold the weight of the concrete and use a lot of fancy stones to secure certain parts. I have no idea what the size is, but it's big enough for lots of playing, eating, entertaining, and lounging.


To get off the patio, I had to cave and allow them to put in a ramp. Again, they played with the grading of the lot a bit so that we wouldn't have to put in railings along it, instead, just some decorative rocks and that's it. For those of us who can use them, there are also stairs. The top of the stairs doesn't have a gate and that's something we are debating as Kingsley has made it perfectly clear that it is his greatest ambition to fly off the patio down the stairs. For now, we push the kids picnic table to the top of the stairs as a barrier. The ramp gives Kingsley access to the grass area where one day we will have the sandbox and
my vegetable garden. Both the stairs and ramp finish at the same point - the gate to the pool.


Here is my lousy photo editing to show the whole back entry, patio, ramp, and all that. I probably should've cleaned up, but I didn't. Sorry about that.  


The last part of our accessible yard is the pool. We hemmed and hawed over this for ages. In the end, there were just a few things we did for Kingsley. The first was putting a 3 foot perimetre of concrete, past the edging. The pool cover rolls into the ground, so it's not impeding him in any way. Lastly, we put stairs at both ends as we figured these would one day be something he would be able to get up or down, unlike a ladder. We considered a lift, but had a few adults who use wheelchairs tell us it wouldn't get used. We can add it later if we need to. We also fenced the pool separately, which is something I feel strongly about. The pool gate locks and the kids have had it drilled into them that Rule #1 is that they cannot be within the pool fence without an adult.


 in the picture on the right you can see the white strip on the ground where the pool cover hides. that's the deep end, the other pictures are the stairs in the shallow end. 

And that's it! Just when I thought I couldn't love my house anymore, I totally do. The kids are so in love with the backyard also, they spend every sunny minute outside now. It is AMAZING to be able to just let King outside with the girls on the patio and know that he can just play and be wherever they are, doing whatever they're doing.  I am so happy that we have this house for them to grow up in. 

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. 

Wednesday, June 12, 2013

My Little Kreacher

Harry didn't know whether to laugh or not. The elf straightened up, eyeing them all malevolently, and apparently convinced that they could not hear him as he continued to mutter. 

"...and there's the mudblood, standing there bold as brass, oh, if my mistress knew, oh, how she'd cry, and there's a new boy, Kreacher doesn't know his name. What is he doing here? Kreacher doesn't know..."

~ Harry Potter and the Order of the Phoenix, JKR

can you see the resemblance? 

There's a character in the later Harry Potter books named Kreacher who is an old elf, a bit senile maybe, and who does not realize (or perhaps care) that his internal dialogue is external - he says exactly what he's thinking at all times. He also speaks in third person. This is exactly what it's like hanging out with Kingsley all day. From the moment he wakes up, he is talking and telling me exactly what he's thinking. It sounds like this:

"MOMMY!!! Open my door! I awake! Oh! There's Mommy. Mommy opened the door. Hi Mommy! Mommy's awake. Mommy's turning off my light. No! Don't change Kingsley's bum. Where's my iPad? Oh, there's my iPad. I wanna watch Thomas. Where's Thomas? I can't find Thomas. I found Thomas. I don't want this Thomas. Where's Thomas and Percy? Here's Percy. Mommy, wanna see something cool? Hey, there's Edward. Oh, Mommy's taking off my PJ's. Mommy, I hiding! Oh, there's Rachel. Hi Rachel! Rachel's awake. Mommy and Kingsley are awake. Cordie's not here. Mommy and Kingsley and Rachel are on Kingsley's bed..." and on and on and on. His speech isn't perfect, but I saved you the trouble of trying to interpret what he meant by not typing the way he actually speaks. 

He stops for breath occasionally, but for the most part, if he and I are alone and he's not eating, it's the constant stream. He is also a killer backseat driver. I almost made a video of him driving to playgroup this morning because it was so funny, but it's illegal to play with my phone, so I didn't. Here's some of the transcription:

"Mommy and Kingsley are in the car. Mommy can we please, please, please go to playgroup? Oh! CEMENT TRUCK!!! CE! MENT! TRUUUUUCK!!!! I see a cement truck! Mommy! FASTER!!! Where's the cement truck! OH NO! Cement truuuuck!!! GO FASTER MOMMY! [the cement truck was in the other lane and was turning, we were going straight. this was devastating]. Bye-bye cement truck. OH! A dump truck! Pretty, pretty please? I really, really, really want to go to playgroup. Move, car! Mommy, go faster! MOVE CAR! That car is in the way. Move faster! FASTER!! A school bus! I see a school bus. I love school buses. The school bus has a door. There's a school bus. And a city bus! I see a city - TWO CITY BUSES!! What are you doing, Mommy? Mommy, are you getting your coffee? Oh, Mommy doesn't wanna coffee, Mommy has a tea. FASTER MOMMY! Mommy, do you have your tea? Where's your tea? Why aren't you drinking your tea?"

He seems to save these monologues for when he's alone with people or just around people he is used to, because he doesn't do it in groups. My parents had the kids overnight this past weekend and my Dad had to spend an hour alone with Kingsley. His response: he talks a lot

"hey gwampa, I wanna tell you sumpin..."

Quite a change from last year, no?




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