Monday, July 17, 2017

Parenting Kids with Disabilities: Adaptive Equipment

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery

For as long as I can remember, I have needed adaptive equipment.  I was so young, I don’t remember getting my first walker.  Crutches came at around age five, and I was nervous with them.  I could not walk reliably with them for a couple of years.  I was almost eight years old when I got my first wheelchair.

[Image is: Me dressed  in a light blue shirt, jeans and socks in my new blue wheelchair.  My sister, dressed identically, is standing alongside me, with one finger on my new chair.  March, 1989.]


While the idea of new adaptive equipment was great, mastering it took time.  I remember how difficult it was to push this chair at first, and how sessions of at-school physical therapy were dedicated to teaching me how.

While I liked having the wheelchair in particular, by the time I needed to use it more regularly in eighth grade, I found myself reluctant.  Though I used my crutches full-time at school, I felt that using my wheelchair would cause me to stick out even more.

It was very smart for my parents to introduce the idea before I moved to a larger high school, where I would definitely need my wheelchair, so I would have some time to warm up to the idea, and get used to using it on a more regular basis because it was going to be necessary for me to use it there.  But I didn’t have a great attitude about adaptive equipment in general.  I felt it set me apart from my peers, much like I felt IEPs did.

I had been raised to be very independent and whenever possible, to not need help.  To rely on a wheelchair, even though I needed it, felt like a weakness.  Like admitting I needed help.  Help, I was sure, was a negative thing.

BRACES AND SHOES:

I’m going to date myself a little here and admit that when I was growing up jelly shoes were all the rage.  They are, perhaps, what Crocs are now, fad-wise, and I always wanted a pair of my own.  However, because I required supportive shoes, flimsy shoes like jellies and sandals were never something I could wear, especially over braces.

All the shoes the other kids were wearing, I couldn’t wear.  Nothing fit over leg braces except basic Velcro shoes (before I mastered tying laces) and later, clunky hi-top shoes.

I wore braces when I was very young, and then again after my big surgeries at ten and eleven years old.  They were plain, and serious with their straps, and moleskin patches that did little to prevent them from rubbing and causing blisters.

I was not a fan of braces or the shoes I had to wear over them because, like my wheelchair, they were further indicators of all the ways I stuck out and was not like my peers.

WHAT CAN YOU DO:

Speak positively about adaptive equipment:

From the time your child first requires adaptive equipment, speak positively about it.  Even if you, the parent, don’t feel positive about your child needing a wheelchair, walker, or crutches (for example), it will help your child immensely to have a sense of confidence about what they rely on to move through the world.

To do this, talk about all the ways the adaptive equipment helps your child to do things.  Photograph your child in a way that includes their adaptive equipment, as well as portrait-style.  Involve them in the process of choosing a color for their new wheelchair, for example (if they are very young, give them a choice between two colors you, as a parent, could live with.)

Be mindful of how you speak about needing help.  Independence is great, and we all want it, even as kids, but there is nothing wrong with needing a hand.  Or needing a wheelchair.  No one gets through life completely alone.  We all rely on others for things every single day.  It’s not shameful that we are not all electricians or teachers or cable people.  Neither is it shameful for your child to ask for help when they need it.

Find ways for your child to connect with others who use adaptive equipment:

The power of community is huge.  There is nothing more affirming than connecting with others who move like you do.  Others who have wheelchairs, or braces, or walkers.  It makes us feel less alone and that is always a good thing.

I’ve also written about community, and some of the ways I found community via seeking out others like me.  It’s possible for parents to help your kids make these connections, too.

If you’re active online and connect to other parents whose children have disabilities like your child, try video chatting as a way for the kids to connect, and see someone else like them.  If your child is older, look into summer camps in your area for kids with disabilities.  (Ask adults with disabilities if they have recommendations - we are everywhere online and would love to help!)

Speaking of adults with disabilities, as your child grows up, they will crave having someone older who they can ask questions to.  How do you do this?  Form friendships with us.  It is so powerful for your child to see family members hanging out with people like them.  (The internet is an amazing way to form connections!)

Shoe-shopping?  Try buying a size larger:

The fantastic reality is that nowadays, braces come in decorated patterns, and colors other than institutional white, and wheelchairs come in more than three colors.  If your child has adaptive equipment in their favorite color or decorated with their favorite character, chances are, they will feel more comfortable and confident with it.

Shoes are another story.  Chances are, if your child is physically disabled in a way that means they wear leg braces, they might not be able to have as wide a selection as a nondisabled child.  However, if your child is a wheelchair user (even part time) consider checking out less supportive shoes that would not be ideal for your child to walk in, but in a size larger, to wear over their braces when they are in their chairs.

All these things have the potential to increase your child’s self esteem and sense of belonging.

6 comments:

  1. "Payless shoes" saved my butt with the shoes over AFOs problem as a kid. Also I think parents should be telling the child's physical therapist(s) to be positive about adaptive equipment since any negativity I received was from PTs not family. The PTs always had a "be as normal as possible" goal. My family had "be as practical as possible" as a goal. Thanks to my family I have my little scooter and crutches. :)

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    1. Margot, That is such a good point! I know there are some good PTs out there but but I agree, many have the wrong goals in mind.

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  2. I love this! I wore a leg brace from age 4 to age 12, and to say I had a hard time accepting it (and accepting myself) is a huge understatement. The point you make about connecting with other children who use the same adaptive equipment, as well as adults who do, is so important. I always felt very alone because I was one of 2 people in my elementary school who wore a leg brace but was able to walk without any further assistance. And when I went to PT appointments, many of the other kids there with CP were far more affected.

    As a result, I never discuss my time wearing a brace because of all of the shame I carried about it. I'm a writer, and as of earlier this year, I do write about my CP, but I've never mentioned that I wore a leg brace. And looking at old pictures of myself wearing the brace is still very painful for me.

    Which is exactly why this post is so important! Thank you for sharing your perspective with parents so that they will know what steps to take to help their children feel comfortable with using adaptive equipment -- comfortable with being their amazing selves!

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    1. I'm so glad this post resonates with you. I'm sure I've mentioned that it sounds like my sis may have CP similar to yours, and she shares your feelings about never quite knowing where she fit in the CP community. So you aren't alone <3 You have very common feelings, and I, too, had a really complex relationship with my adaptive equipment, hence the post.

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    2. You have. And the feeling that we're not alone is incredible! I've had those same feelings -- feeling "too able-bodied" to fit in with most other people with CP, but not quite "able-bodied enough" to fit in with able-bodied people.

      In the past few months, I discovered how big of a CP community there is online, and it's incredible! I love knowing that there are other people with similar experiences -- people who've had a hard time embracing their CP, people with place blindness, people who lack depth perception, people who startle. But sometimes, someone with CP will mention Botox (it was recommend to my parents when I was a child, but we opted not to do it) or foam rollers or an upcoming surgery or how much pain they've been in, and it all feels so unrelatable at the moment (I've been in intense pain before, but not right now.) But despite how mild my CP is, I've loved being able to connect with others on an emotional level. It's those moments that I realize that I truly am never alone.

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    3. Definitely! Community is really powerful. I had a similar experience when I discovered more people with CP online when I started blogging. It really marked a shift in my life. Looking at CP differently - not as something to be ashamed of but as something that gave me community and identity.

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