Limb Difference Awareness Month || Q+A

April is Limb difference awareness month and last year I wrote a couple of pieces about limb differences like Limb Differences 101. The other piece I wrote was a personal favorite that has to do with the lack of representation and how that lack is felt by us personally. It’s probably one of my favorite pieces I wrote all last year, if you have a minute I would encourage you to read it. It will help you understand why I work so hard to spread awareness.

But today I’m going to answer some more specific questions. I asked my followers on Instagram to send me their questions they have about anything at all to do with limb differences, our family dynamics as a special needs family or anything else at all. I got some great questions so I’m going to take a few minutes and answer some of them this morning.

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Q: “How would Lamp like us to refer to her body when we are introducing our kids to difference? Any guidance on “in a perfect world” how would your fellow parents discuss/represent Lamp to/with their children?” And “I would love to know what you would hope we would teach our children about limb differences. I always tell my girls to have compassion but people don’t always want you to feel sorry for them because they are happy! Does that make sense?”

A: Great questions! The first thing I have to say is KUDOS for talking to your kids about Lamp and other people with disabilities in the first place. It is not enough to tell our kids to “be nice” when we send them off to school or the playground. Kids need to be educated about disability in order to “be nice.” As I have seen many, many times when kids see someone like Lamp for the first time they have questions! And concerns! And even fears! And it’s really hard to remember to “be nice” when all this is swirling through your young mind for the first time.

Second, I’d like to point you toward my guide for navigating a special needs encounter. This is my 4 step plan for handling a situation when your child is meeting another child who has special needs for the first time like at the playground or in the grocery store. But it is also a great overall guide for how I’d like people to talk to their kids about children and people with disabilities.

The first step of the plan is to stay (as opposed to shushing your child and walking away) and have a conversation about disabiliy. In specific reference to “How would Lamp like us to refer to her body when we are introducing our kids to difference?” I would encourage you to use the term limb difference. Just like if you meet a kid who has Down syndrome, it would be appropriate to say “She has Down syndrome.” In a very straightforward yet kind way. We are not embarrassed or ashamed of our kids differences, or their diagnosis. To call it what it is, is a good thing! It helps de-stigmatize disability as something bad that we only say in hushed tones with a sad voice. As far as the “why” I always say she was just born this way, or this is how God made her. (Of course some people become disabled through illness or accident, but I’m being very general and broad.)

The next part of my 4 step plan is then finding common ground. It’s good to talk about their disability in a frank, yet still kind tone, but then helping your child see that they are more alike than different is key. The last two steps are emphasizing kindness/using kind words, and emphasizing her strengths and the fact that she is differently-abled. Reading that 4 step approach is my best all-over guide for talking to kids about differences.

As for teaching our children compassion, you are 100% right that Lamp and other kids like her don’t want people to feel sorry for them. Compassion is a wonderful trait for all people to have, however it seems that compassion and pity can be pretty easily mixed up. And not just for young children, but for adults as well. While I can be hard to understand this from the outside, I can’t emphasize enough how pity is more difficult to deal with and more devastating than disability itself. I would say that instead of teaching compassion, teach kindness. The definition of compassion says, “sympathetic pity and concern for the sufferings or misfortunes of others. ‘the victims should be treated with compassion.'” Teaching compassion in terms of disability means that others assume my daughter is suffering and views her body and her overall life as a misfortune. Obviously, I don’t think you are teaching your children this. I can tell by the nature of your question that you are very careful to teach your children well,  so perhaps this is a matter of semantics, but if I could redirect the idea of compassion to the idea of kindness I think that is a better fit.

Some conversation points to make with your children might include:
–She looks different, but she has feelings just like you do. How do you feel when other people are kind to you? How about when other people are mean to you?
–She might need help with some things, but just like you she probably doesn’t want to be treated like a baby. It’s probably a good idea to ask her if she wants your help before just jumping in and doing something for her.
–Remember, all bodies are good bodies, Her body is different than your body, and just like you she uses her body to the best of its ability. How does she use her body differently to do some of the same things you do? (ie dancing, writing, playing, etc…)
–She has a mother, father and siblings who love her just as much as we love you! Just like I would be sad if anyone hurt your feelings, I bet her family would be sad if someone hurt her feelings.

Also, understanding ableism or at least beginning to grasp it, is a really great way to open our minds to what it means to live in a disabled body in a world made for and by able-bodies. This is a must read interview from a friend and brilliant writer, Rebekah.

Q: Do Lamp’s siblings ever tease her about being different (when they fight for example)?

A: No, never. Never, ever, ever.

I can think of one time where this line was blurred a little bit–it wasn’t directly teasing and it wasn’t done out of anger or in a mean spirit–but even then it touched off a nerve with her father and I, and there was a long conversation.

Our girls definitely fight like typical siblings–they yell at each other and storm out of rooms and make promises to “never play with you again!” But they love each other very much, play together daily and in general never say anything mean about each other’s appearances. I can’t even imagine either of our other girls ever teasing her about her differences–I think they instinctually know how hurtful that would be. (And that they would be in a lot of trouble.)

I made up my mind a long time ago that our home was going to be our safe place for our girls–all our girls. I have thought through scenarios of what would happen if a guest in our home made fun of Lamp, like a friend of one of our daughters (because that certainly happened to me as a kid with my brother’s friends) and I decided that that person would be asked to leave and maybe permanently uninvited to our house. Lamp has had to deal with a lot of scrutiny in her life–even something as benign as staring is oppressive when you deal with it all the time–and I can’t bear the thought of her ever feeling that way in our home.

Q: “What are some unique ways your family and Lamp have adapted to her needs? Maybe some DIY things you guys had to create to allow Lamp to be more independent?” Someone also asked about if she can eat independently, so I will address that as well.  

A: There are a lot of little ways we’ve adapted to her needs that are pretty easy. She has a small, low to the floor bed she sleeps in. It makes it easier for her to get in and out of and also enables her to make her bed by herself. We designed her room with The Land of Nod a couple years ago and made sure to include plenty of low-lying storage solutions so she would be able to access books and other toys. We also have a snack drawer in the bottom cupboard of a pull out drawer where I keep snacks that all the girls, including Lamp, can access by independently. So keeping things that she wants to access regularly low to the ground is a big one and will be something we continue to keep in mind in our new house as well. Overall our new house is going to have a lot of thought when it comes to Lamp specific accessibility.

When I think of the two biggest things we’ve done to help her adapt to her needs I think of her small power chair and her utensils. Her small power chair was something her dad and I thought up but didn’t know how to make a reality. We were connected with a local non profit called May We Help, an organization of former engineers, artists, handymen and other people who help problem solve creative solutions for people with disabilities to create the one-off things they need that to help them with their daily lives. So they are the ones who actually made this chair for Lamp and it has probably been the single most life-changing piece of equipment she has ever had as her big wheelchair is not great for everyday home use. She scoots around just fine, but when going longer distances–even down the hallway to another room–that takes quite a bit longer than when she’s able to hop in her chair and just go.

The other piece of equipment that has made a huge difference in her life are her utensils. (You can even see a cute little video of her eating.) Her father made these for her when she was about 2 years old and within about 3 days she became totally self sufficient in feeding herself. It was AMAZING. I couldn’t believe how fast it happened. I used to sit with her in the morning and spoon feed her every bite of her cereal–and I was happy to do so. A lot of her other food we could cut up and place on her plate for her to lean over and eat, or we would again feed her with a spoon or fork. The first utensil prototype was made with wood and a plastic spoon. Now he makes them with a moldable plastic he found on Amazon and he attaches metal spoons with screws. She has three sets of utensils–one to keep in her backpack at school, one set for home and one set we keep in the car for when we go out to eat or anywhere else. She uses her spoon and fork mostly, but if she’s eating a finger food like chips or cookies, she will use her feet to feed herself.

When I think about that spoon and fork I am always reminded that she had the ability, she just needed the right set of tools. I think this is applicable to most people with a disability–if we can help them find or create the right tools, they have the ability.

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Thanks you guys! This was really fun for me to answer. I had more questions than what I could answer in this one post, so I plan on doing at least one more Q+A post. If you have a question you’d like to have answered in relation to limb differences, raising a child with limb differences, our family dynamics, etc. feel free to post it in the comments below or email it to me at thislittlemiggy at gmail dot com. I am open to most any question as long as it is kind and asked with respect. That being said I won’t answer any questions that I feel encroach on her or our family’s privacy.