Showing posts with label others. Show all posts
Showing posts with label others. Show all posts

Monday, October 20, 2014

Dear Parents

On the first week of school we had Kingsley's teachers put a letter in all of his classmates communication bag to be sent home. This is something that we will likely do for the first few years he is at the school, until he's able to just talk about himself to his peers on his own.

Our reasoning for this was a few things. First, we know that people are curious. The parents of his classmates are going to wonder why a kid his age is using a wheelchair. The kids would find out, but if other children are anything like my children the parents will only hear half the story and it will be a very confusing half. We don't want his wheelchair to be the elephant in the playground that no one wants to ask about. We don't want awkward hushing when kids comment on it. We don't want Kingsley to be left out 'just in case'. There is fear of the unknown. We put the parents out of their misery and just told them outright.

Second, people don't know what SB is and this is a simple way to spread awareness about what Kingsley's diagnosis means for him and where to get more information on it.

Third, it was a quick and easy way to establish our hands-off policy regarding Kingsley's wheelchair and let families know to start watching out for latex.

And finally, we want parents to be able to talk about SB and Kingsley easily with their children. If their child does come home with a question about whether or not Kingsley can stand up for example, they have the information to answer them frankly and discuss at their child's comprehension level.

Here is the letter that we sent home (it had a cute picture of King at the top that Jeff added in at the last minute and I don't have, so I'm faking it with this one). Like I said, I have had a few parents mention how much they appreciated it.

Dear Parents,

My son, Kingsley, is in your class this year. He is easy to spot - he’s the one on wheels! Some of the SK’s might remember his sister, Cordelia, from their class last year. It’s natural to be curious about people that are different and we want his friends to be comfortable around him instead of making him and his wheelchair a taboo subject.

Kingsley was born with spina bifida - a hole in his back where the spinal cord was exposed and nerves were damaged. The hole was repaired right away, but the damage is permanent. He is not sick, it is not contagious, and he is not in pain. He is just like every other kid in the class, except that he is paralyzed below the hips and cannot stand or walk. He is okay with this! He loves his wheelchair and is very independent with it.

His wheelchair is pretty cool, but we are very strict about kids not moving it. This is both for his safety and because he doesn’t like it. It would be like another child picking him up and moving him against his will or giving him a big shove - a little bit rude and also pretty dangerous. It’s okay to look though! And if you’re quick you can get a look at his sticker collection or the flashing front wheels.

Kingsley has a suspected latex allergy. He has to stay away from it as much as possible. If you bring in something special to share at holiday times, please make sure you do not send in balloons, latex erasers or pencils with latex erasers.

If you want more information about spina bifida have a look at If your child comes up with more questions that you’re not sure how to answer, feel free to email me anytime (email address).

See you at school!

Jill, Jeff, and Kingsley

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?"
"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.
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:

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:

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

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

Sunday, August 25, 2013

Goodbye, Sweet Birdy

Some of you may remember a post I wrote nearly a year ago now about meeting a mother who was expecting a little baby girl. This sweet girl was going to be born with only half of her heart. The family was facing surgeries, hospital stays, and serious disruption in the lives of their other four children. Her story touched me so deeply, as I know it did for those of you who started following Ava's story and their family's blog.

Ten days ago, Ava passed away. She was eight months old, waiting for a heart that never came. She was so deeply loved, even by those of us who had never even met her.

It seems cliche to say that her mother inspires me, but she does. Lisa has posted throughout Ava's journey with such grace and conviction. It has not been easy and I don't imagine that will change anytime soon. Keep this family in your thoughts and prayers.

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 - 


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. 

Thursday, January 17, 2013

With No Segue

Our new house is awesome. No, we do not yet live in it. Long, boring story, but hopefully very soon we will be moving. In the meantime, I torture myself by daydreaming about how amazing it will be to actually live there. It is a Dream Home in every sense of the word. ;)

The potty action started great, then as I should've anticipated, everything went out the door when the holidays hit. Bedtimes were all over the place, we were all sick, lots of grandparents needing to babysit... Anyway, as soon as our routine started up again, I dusted off the potty and we got back to it. It's so very strange to potty train when nearly every factor is in my control and he has none.

All in all, things are going well. Lots of clean times during the day, lots of potty action, but it's still a learning curve I'm trying to master. All in time.

Remember the pregnant Mom I met at the library? In this city, six degrees of separation is really only about two degrees, so I was able to find her! And of course, she blogs ;) Her beautiful daughter, Ava, was born on December 4th and she's doing very well. This little fighter and her family are amazing. You can follow her story here.

Kingsley turned three this week. It feels like his first year was really heavy and consuming and action packed, and the next two have been kind of chill and just a chance to settle in and be comfortable. He really does feel like a three year old though. He didn't feel much like a one year-old when he was one because of the absence of walking and talking or all of that physical growth stuff. He didn't feel much like a two year-old because of the lack of language and tantrums (aw, shucks!) and toilet training trials that happen then. But three feels like three. I think three is going to be a good year for him.

For those of you who keep track of these things, tomorrow will also be his three year shuntiversary! He's still rocking Billy the First, which is awesome.

We are officially  members of the YMCA. Kinger and I went in there last week and had our tour, signed the papers and got our cards. We went for a workout Monday and had a wee snag though. When I dropped him off, I was one of the first there and they asked if he could stand. No. Could he crawl? No. No biggie, just have him sit there on the play mats. When I picked him up, I realized I had put him in the baby room and he was surrounded by infants. Today, he hung out with the kids his age and I had to drag him out of there (not) kicking and screaming.

And whatever is a mama to do when her camera stinks and her photorific sister refuses to cross the country to update her ancient blog header? Well, obviously, I went back to Laura! So. Ridiculously. Cute. The restructuring is a work in progress. I still need to play around a bit. :)

Friday, September 28, 2012

The Things I Wanted to Say...

So give me hope in the darkness that I will see the light
Cause oh they gave me such a fright
But I will hold on with all of my might
Just promise me we'll be alright
~ Ghosts that we Knew, Mumford & Sons

This week was Meet the Teacher night at the girls' school. Since they're going to school at the other end of the city by our soon-to-be-house, it didn't make sense to go all the way back home between, so we headed over to the closest library to hang out.

In the kids section of the library, my kids moved in like they were at home. Chairs were moved so Kingsley could get up to the table with the toys, Rachel sat down to see what computer games they had, Cordelia broke out the puzzles. There was another family there. A woman, her two daughters that were also playing with toys, and her two sons that were in and out of the shelves of books. They saw the wheels. I heard them asking their mom, pointing to him, sneaking peeks at me out of the corner of their eyes to see if I had heard them asking. I heard her answering, saying the usual things, telling them it was okay. I saw her hesitate for a second, then come over.

She asked me if he belonged to me. Nodded when I said he was. She said something about him, then rubbed her belly as only a pregnant woman can and told me that the baby she was carrying only has half of a heart. I wish I could describe her face as she said it. She was trying to be casual, just making conversation with a total stranger, but we both knew there was nothing casual about it. I could see the fear in her eyes. The pain she was feeling, but trying not to feel. I could see the tears that were always just almost there. I could see the intense bravery, the sheer will to be stronger than she actually felt.

I could feel the sigh leave me. In that moment, right there, I was back to that place where I sat three years ago. Back with the eyes that never smiled, the thoughts that were always somewhere else, the heart that was just a little bit broken.

We sat there and talked while our kids came and went, my three and her four. She told me about the surgeries her baby girl would be facing when she was born, all of the appointments she had, her worries about the other kids, her concern that she wouldn't be able to breastfeed, and the unthinkable fear that her little girl might not make it.

Her journey isn't the same as ours. They're facing longer hospital stays than us, separations that we didn't have to endure, long term issues that are different. But what we had in common was that last joyless pregnancy that we will never get back, the ache that feels like it will never go away, the dread of the unknown, and the simultaneous wish to just stay pregnant forever so that we don't have to face what comes next.

As we rounded up our kids and headed on to the evenings next events, she apologized for unloading all of it on me, said she was just glad to finally talk to someone who had been there and gotten to the other side. She looked at me, at Kingsley, at my girls and her face was full of that desperate hope that maybe, just maybe, this wouldn't be as bad as she secretly believed it was going to be. I had so many things I wanted to tell her. I wished so badly to sit there and take some of the burden off of her. I can take it. I have the benefit of hindsight to know that where she's at now is not where she's going to stay.

If I could've, I would've repeated to her the slogan of the SB world: pregnancy is the hardest part.  I would've made her remember the joy she felt when her other four babies were born and promised her that this birth would be just as joyful, that she really would love this child that much, even if right now she doesn't feel like it'll be the same. I would promise her that she will bond with this baby girl, even if she can't be with her as much as she wants to be. I also would have told her that although the dark cloud of pregnancy goes away, the hard part won't be over and for that reason, she has to learn to be selfish. Get through. She has to get through the hospital phase and she has to get through in one piece, and to do that she'll need to put herself ahead of everyone else. She'll have to demand help, demand sleep, demand support, raise that white flag and call in the troops because there is no possible way that she'll get through that part on her own. There will be epic highs and epic lows, not only because life will literally be hanging in the balance, but also because she'll be a hormonal disaster, let's just be honest about that.

I would also tell her that when she gets through the next year, she'll look back in amazement. She will feel humbled by all that she has seen and done and she will never see life the same way again. She will go through times where she feels like the worst mother in the world, where she wonders how her other children managed to survive with a mother who is so incompetent. She'll also go through times where she'll look at her children and secretly gloat that her friends wouldn't stand a chance against her in a Mom of the Year competition. She'll have times where she pleads for just one day without extras and other days where the extras are so routine that they don't seem like extras at all. She'll see the beauty in a normal day, where nothing happens and no one does anything exceptional. She'll begin to celebrate the most mundane of milestones and finally see them for the incredible gift that they are.

And before she knows it, she'll find herself sitting somewhere while her awesome kids are just being awesome kids and she'll come face to face with her old, scared, terrified, brave, wonderful self from three years ago and she'll realize that thing that someone told her three years ago is true: she's okay. She will still be watching awesome reality TV every other night, still be a slave to her laptop, still be staying up later than she should be, still lusting after boots, and still eating too much candy. She won't have lost who she is and her life will have kept on going. Her broken heart will be repaired, just like her baby girl's.

Monday, November 14, 2011

We Met

I know you're all dying to know ;)

So, on Saturday our little clan all headed out for the SB workshop day at our centre. It was great! It consisted of a few information sessions on the anatomy of SB with levels/functioning information (check, check, memorized that bad boy last year), a discussion on equipment (which featured pictures of Kingsley in all of his various equipment pieces).

Probably the one piece of equipment we were not yet familiar with there were RGO's (reciprocating gait orthotics). For those of you who aren't in the SB world, I have no idea how to really explain them, as I never fully understood them until I saw them. They're basically bracing that goes up to the chest and if the person wearing them tips their chest backward, it pushes one of their feet/legs forward and mimics a walking motion. I think. I may be confused still. I only mention this because we've been looking into them for Kingsley down the road. They wouldn't mean functional walking like most of us do, it would mostly be for exercise and experience.

There was also discussion of hydrocephalus and shunts (check!), chiari malformation (check!) and tethered cords (check!). It made me realize that Kingsley is really making the most of his SB experience, haha. During this talk we got to see a SB doll. For real - a doll! It has SB, hydro, a shunt, Chiari and can have all kinds of spinal issues. You can even cath it and make it a boy or girl. I can't imagine ever needing one of these dolls myself, but it's cool to know they exist.

There was a presentation on the bowel/bladder issues. Nothing new their either! And a discussion of recreational activities for kids with SB. That was cool to hear about different things that are available in our area.

But my favourite part of the day was talking to other families. The day was geared toward kids with children 3 and under. I think there were 2 three year olds, 1 two year old, Kingsley, a 9 month old and a 6 month old. I feel like I'm missing someone here.... Maybe not. They had two families, one who we adore who has a son a year older than Rachel and the other who have a 15 year old son named Eric. Meeting Eric and his family was amazing. I imagine it would be the local equivalent of meeting Aaron Fotheringham. Eric is a wheelchair basketball superstar and he also plays sledge hockey. He and his parents were just so... reassuring. I sat there listening to them and thinking: THAT is the kind of family I want to be! They were just awesome.

We also had the chance to meet and talk to the other families there and a representative from the SBHAO. All of our kids were pretty different, but all definite rockstars. All in all, a very good day. I am really hoping we can do things like this more often!

Friday, November 11, 2011

Tomorrow, We Meet

You know how last May I was thinking that I was seeing people with SB everywhere I looked? Even right on my own street? Well, haha! Turns out I am not hallucinating after all!

Since May, I have met four families with kids with SB. Four! Bringing my total to six (including Nick and a baby girl who we met, but who don't live that close to us). It's nice. Rather awesome, really.

For starters, the girl on my street that I thought I saw really does live on my street and she does have SB. She's a gorgeous kid who walks, runs and has a smile that lights up the world. I spotted her a few times getting on and off the accessible school bus that stopped in front of her house. Then, one day King and I were playing in the front yard and she and her sister were outside and I saw my chance. He was testing out a wheelchair then and headed down the road in their direction. She looked up and saw his wheels. Her dad came out and we ended up chatting for awhile about everything. It was incredible to think that for two years we've been immersed in this world, never knowing that we had guides just four houses down.

The wheels really are a great ice breaker. I take the girls to dance class every week and while there a little boy with a walker came racing (no exaggeration) into the foyer and zipped around like he had boosters on that walker. I happened to have Kingsley there with his wheels. His mom saw Kingsley and came over to see what kind it was. I suspected from the way he walked that her son had SB so I said that Kingsley did and there ya go! One more family in our little network.

The big exciting thing though is that tomorrow our centre is having a SB networking and information day. The first of it's kind since before Kingsley's diagnosis. I've been told that there are 7 or 8 families, all with kids with SB age 3 and under. All in one place! I can't wait.
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