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


  1. Thank you for posting this! I was planning on asking you for a copy of your letter so I can use it in a few years but now I can just come back to this post. So helpful. Your explanation is great for parents and I think you did a nice job of sharing what they need to know about SB in a subtle and simple way that doesn't make it too scary or overwhelming. You didn't mention the shunt or cathing and I think that was wise. I've found that those two are the biggies for getting folks freaked out ("Treat him like any other kid-- but remember he has plastic in his BRAIN! EEK!"). As SB parents, it's sometimes hard to know when to cut ourselves off or how much information to share based on what a person actually needs to know. I will for sure be using some form of this letter when Simeon starts kindergarten!

    1. We hemmed and hawed forever about what to share and what not to share. The bathroom stuff we figured they didn't need to know. The shunt stuff, LOL! Yeah, that and his huge decompression scar would've made for great playground chat: "Yeah, they had to remove part of his skull and a few vertebrae. And over there he has a pump drilled into his brain. So, want a playdate this weekend?" LOL!! Oh my gosh, I almost just choked laughing at the thought of the looks of panic and horror on their faces. I figure if that wasn't enough information then they can look at the website. If that makes them super curious, they can always ask, we've opened that door for them.


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