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?




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. :)

Monday, June 3, 2013

Surgery #6 ...and Maybe #7

Holy crap, right? He hasn't even had his 5th surgery (the hamstring/Achilles/foot release in the fall) and already we are planning more. It's like booking a years worth of vacations, only a lot less fun. But it's free, LOL! 

We have a whole lot to think about, but the ball is starting to roll on a surgery called a cecostomy. This is where you might have to Google while I convince myself that by not explaining it, I'm respecting his privacy. ;) It's going to resolve all of the poop woes. We hope. 

This is where my head feels like it might explode. I feel like for the last few months I've been throwing my hands up saying that if a c-tube is inevitable, then let's cut to the chase and just do it. Now, his specialist was like, 'it's inevitable, let's do this!' And I'm balking. 

Here is where my head is at:
Is it really inevitable? Really really? How really really? Is the alternative constantly monitoring and ruminating about nothing else? Because I'm not down with that. 

I can't find a downside, risk-wise. I think things will need to be changed out, it's a surgery, so the usual complications would be at play. But he's young, he heals well, and at this age, he will barely remember. 

It feels like a big decision to be making FOR him, but his GI described it like getting his ears pierced - you can always take out the earring and let the hole grow back in. 

Doing it this young (I think I'd aim for next winter after he's done with the ortho fun) was unexpected, but I'm all for skipping more med experiments, enemas and anything else that may cause damage and frustration, only to end up here in a few years, exhausted. 

While we were there, he also tossed out the idea of doing a mitrofanoff (Google) at the same time. THAT was not even on my radar. Jeff is all for it and I am not so sure. At first, I was an immediate NO! Because we don't have uro issues, he's all good and managed, so let's not fix what's not broken. I may come around though. There are some pro's to that as well. 


He will have just turned 4 when/if we do this. He will have 8 months to adjust to this before he starts school. Doing it then will also mean I will still be at home with him, since I'm going to have to find myself a job or something when all three kids are in school ;) 

I'm a little bit freaked out right now. I'm trying to remind myself that this isn't really making him more atypical since the way we deal with these things now is not at all typical, it's just different. Different is scary. Scars were once scary. Shunts were scary. AFO's, wheelchairs, catheters, drugs with long names- all scary once upon a time. This will be a piece of cake. One day. 

If anyone has any experience with these, any good stories or glaring reasons why we should stop all contemplation, then please, let me know. 

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. 

Wassup

I've noticed a lot of other mom bloggers who have kids with SB sort of trail off posting after their kids turn three, which I am totally guilty of. I have one explanation: the unmentionables. 

King is almost 3.5 (holy crap!!!!) which means he's at the age where a lot of his peers are doing or done the potty thing. By 4, most kids are there. I have lofty dreams of winning this battle by about that time, but for now, it's a daily angst. 

Imagine your worst potty training experience. Multiply that by one neurogenic (aka totally ignores your pleading and plans) bowel and add in the fact that this is 100% out of Kingsley's control and you have my frustration. 

I can't talk about it much because 1. It's poop and poop is gross, 2. No one wants to read that, 3. King will one day keel over from embarrassment that I've said this much. 

So, this is our life. 

There have also been a few other minor ortho-type stressors, but by some miracle everything has started to work itself out as of a week or so ago and we have a bunch of appointments lined up that should start to ease my stress and hopefully give us a plan. 

When I'm not dealing with that unpleasantness, we are living smack in the fishbowl that is our house. The yard has been in progress for weeks, but pretty soon it will be done and I won't be literally surrounded by work crews and various tradespeople stopping in to do this or that. It's all worth it, but it's a bit strange. 

We are hiding in the basement so we aren't on display. 
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