Limb Difference Awareness Month || Q+A Part 2

Answer Me: Yes this is true, kids at school think she is very cool. And she is. She has a lot of friends, and many people will tell you she is the most popular girl in school.  (I’m diving a little deeper into this answer below, but I’m not specifically addressing the rest of my answer to the 6 year old who asked this question.  :))


I think this is in part because of the presentation I gave to the entire school at the beginning of the year teaching them about Lamp and her differences, so of course everyone knows her name and they know a little bit about her. The other reason, I believe, is because she is very funny, friendly and outgoing.

I talk a lot about the fact that when we are out in public other kids tend to point, stare and whisper at and about Lamp. And while this is true, it is also true that as soon as kids get to know her and are educated even briefly about her differences, most of the time they are very accepting. This is one of the big problems I had with the book and movie Wonder (which I forgot to mention it in my original critique). The idea that at the age of 10 Auggie has no friends his own age is absurd to me. Even if he has been home schooled and in and out of hospitals his whole life, this just does not ring true to me or any other special needs family I know. I get that this might feel like a persnickety distinction to make perhaps–on the one hand I am constantly pushing for inclusion and education so that our daughter and other people like her can have access to the same opportunities everyone else has access to, while on the other hand I balk a little at the outdated stereotype presented in movies like Wonder (not because of a 6 year old’s question) that people with disabilities are friendless outcasts. But yes, somehow both are true.

Q: Yes, tell me about household chores! For real, now that we have two kids — one who uses a wheelchair and one that doesn’t — I am not sure about how to handle chores.

So far the regular chores are just for my older two girls, though as I’m writing this I’m realizing that I need to add Zuzu to the chore rotation soon. Both Lamp and her big sister are in charge of doing 3 things each day before school–making their bed, their daily chore (explained below) and practicing their music.

From the time Lamp was about 4 we started helping her learn to make her bed. Her bed is small and low to the ground, but she has been making it herself for years. Of course it takes her much longer on her own, but I think it’s important that she spends the time to figure these things out and learns to do it on her own. Because the mornings can be a bit rushed, her dad and I sometimes help her make her bed and by sometimes I mean often–Ha! But again that’s because of the morning rush. When she has the time she can and does make her bed very well on her own.

For their daily chore we have a chore chart that hangs in the pantry door and tells them what they  have to clean each day–Monday thru Friday. All the chores that Lamp has are accessible and something she can do on her own. For example, she cleans the baseboards twice a week, she uses our hand held Dustbuster vacuum to vacuum the bathroom floors (lots of long hair on the floor in our house!) and she also spot cleans the kitchen floor. So yes, all of these are close to the ground, and easy to access for her. Her older sister’s chores are things that are higher up and more in her reach–like cleaning the bathroom counter tops and sweeping the kitchen floor.

Additionally, they are also both in charge of keeping their room picked up and they clean and vacuum it every weekend. Again, we try to keep most of Lamp’s toy and clothing storage in reach for her so she can be responsible for picking up. They are also expected to help with setting the table, unloading the dishwasher (Lamp sits on the counter and puts silverware away) and  in general helping me keep the house picked when we have “family pick up time.”

I’m a BIG believer in chores and kids pitching in around the house, but sometimes the chores go undone and so they do them in the afternoon or we get off track and have to get back on track, but overall our system works well.

Q: Hi! I was curious as to prosthetics. Or transplant? With all the innovative research happening for folks who lost their ability to walk or use a limb I wondered if that was something that could benefit Lamp?

A: I’m not an expert by any means, but I can speak to our experience and what I’ve heard and learned about these subjects over the years.

So Lamp has had 2 prosthetic arms in her life, both when she was very young. About age 2, maybe 6 months to a year after her second prosthetic arm (which, by the way, cost $10K), we stopped using her prosthetic arm. The best place to read about this decision is here. (And then you can read about my favorite funny moments of having a kid with a prosthetic arm here.) It was hard to walk away at first because I worried that we weren’t “trying hard enough” but it was her wonderful doctor (the first doctor we met who really knew and understood limb differences) who gently urged us to let go of them. He said 30 years ago the thinking was to get them in a prosthetic arm as young as possible, but in his experience the vast majority of congenital kids (ie kids born with limb differenes, as oppposed to people who lose a limb later in life) do better using what they have, and not some super heavy, plastic appendage that offers no feeling and is difficult to use. Again, I talk about it more in this post including how it’s different for upper prosthetics vs. lower, and for people who have lost a limb vs. people who were born without limbs. Again, I’m not an expert, but this is what I’ve heard and observed in the past several years.

As far as a transplant, I’ve never heard of transplants for kids born with limb differences. (I do remember the one boy who had a hand transplant, but as I remember he was born with hands and lost them to a disease. And of course that’s the only case I’ve ever heard of. ) I’ve heard of such things as limb lengthening surgeries, but I think that is generally for people who might benefit from a slight limb lengthening–like if one leg is an inch or two shorter than another leg. Lamp’s limbs are more complicated than simply being shorter than other limbs, so I don’t really see these as options.

But here is the main reason I don’t think about or spend time researching these options, which actually ties into what I remember her doctor telling us about prosthetics. When I was still insistent on giving Lamp’s second prosthetic a try her doctor said that was fine, to let her use it when she wanted to, but never force her to use it. He said that the only time he ever saw real problems with prosthetics were when parents forced their children to wear them, as that caused massive physicological problems for the children because usually in these cases parents wanted thier children to “look normal” more than they wanted them to be able to function well and be happy.

If we were solely committed to seeing her walk, we may have done surgeries by now that could have possibly gotten her there, but at what cost? And in fact, I’m not sure any good doctor would have conceded to surgery because, as one doctor said in regards to surgery “We can do lots of things to her, but we want to make sure we are doing things for her.” Lamp knows how to use her body to the best of her ability. Any surgery could threaten those abilities, without promised results of better function in other areas.

I love what special needs spotlight participant Karen discussed as a child with a disability whose mother spent years trying to “fix” her. She says, “My mom was my role model, and I still aspire every day to be as tough as she was. However, underneath her tough exterior, she carried around a lot of grief about my disability for many years. She was determined to “fix” me with constant, intensive physical therapy and visits to specialists all over the country. She meant well, but I felt bad for not improving physically as much as she wanted, and because deep in my heart, I didn’t want to be fixed. I just wanted to be accepted as I am. So that aspect of my childhood was very difficult. When I was a teenager, my mom started getting involved with the disability rights movement, and became friends with adults who had disabilities. She began to see that I actually could have a good life as someone with a significant disability, and that society is what needs fixing, not me.”

Like a lot of parents I want what is best for my kids, and for a while I was definitely stuck on the idea of Lamp walking. But I got over that. As I say in this post here, “Isn’t it funny how success can look so different depending on the lens you’re looking through? From the outside looking in getting Lamp to walk could seem like a huge success and if we had pushed hard enough–surgery, more therapy, more equipment–perhaps she would be there already. But that big success would have come at a bigger cost. A cost that she would she would potentially pay the rest of her life…A whole, happy person is much more important than any individual thing we can do, be or have every time. That’s what I learned today.”

I hope that helps. 🙂

Right now she absolutely loves Keala Settle who plays the bearded lady in the Greatest Showman. While I have to admit to having some conflicting feelings about that movie and the messages about  disability, I totally get why she relates so well to the bearded woman character and her message of not being ashamed of who she is. I’m not scared to be seen / I make no apologies / This is me!

And she does have a couple friends with limb differences–both older than her. First was her friend Jessie we met at a hospital appointment in Dallas and the second was a girl who babysat her a couple of times here in Ohio and who’s mom she took piano lessons from. We would like to go to some limb different camps or find some other places for her to be around some limb difference peeps as it makes such a big difference to her meet and know people who look like her!

Thanks again for all your questions! I enjoyed answering them and I hope you guys enjoyed this as well. If you have any more questions feel free to ask in the comments below and I’ll try to get around to them!


XO, 
Miggy