Thursday, December 7, 2017


Since Elena is mainly a crutch user, her hands are busy most of the time. This makes carrying difficult.

We've been trying to give Elena tools to be as independent as possible, but carrying is always at issue. While she is at home, and inside the house, she does not use her crutches. We expect her to do as much as possible on her own, safely. We have been practicing carrying dishes (mostly empty dishes) for a few years now; E clears her place after eating, which means bringing any dishes/cups/cutlery to the sink. She will typically try to carry things in one hand (which can mean a few trips) and steadies herself along the wall, table, or other surface as she walks (which is fine, if her hands are clean. Ahem.). In general, E hates making more than one trip to do this, but we're pretty firm about being safe with dishes and cutlery. She puts away her own clothes (can not carry the laundry basket), and carries toys and books (typically one-handed, but can use two if the distance is short).

At school, she carries her own backpack most of the day. This is touchy because her backpack is heavy (much to my dismay; we've tried lightening her load, but it is largely a losing battle with the school district. They refuse to support ultralight material since she has an aide that can carry for her if needed. I understand this, but they miss the negative social impact of E having to have a grown-up at her side as a middle schooler). If she works too hard on carrying a heavy load, she crouches more, slows down, and tires quickly. Her aide does a good job trying to balance Elena's desire to be self-sufficient with her expectation to function for the school day.

She has a standard sized backpack; we she does not generally carry her school computer to/from school as she has one for school and one for home. She does carry it from room to room, during the school day, as needed. We keep her 3-ring binder thin and regularly empty papers to keep it light. She typically has 2 copies of required books (normally for language arts; one for school and one for home). She carries a water bottle also, but only fills it halfway to keep it light. No matter what we do, it's big for her.

BACKPACK PICTURE, before school day (max weight)

Out of school, and especially on trips, we are trying out carrying options. The end goal is for Elena to be out with friends, and able to 1) answer a phonecall, 2) pay for something, 3) carry something she buys with her (in a bag, or backpack, or on a tray to a seat) and keep up with her group.

She, like many middle schoolers, wants a phone (she does not have one; this is another subject all together) but even if she DID, she has to prove she can carry it and use it. Her clothes are largely knits (they are easy to get on, and are not stiff) and almost *never* have pockets. I did find these, which are pretty awesome.

She has several sized backpacks, but if the phone rings, she can't get it out fast enough to answer it. It is also difficult for her to get into her backpack (if it's on her back) in a standing position (she prefers a place to set her crutch, possibly sit, take off her backpack and rummage through it). Purses, for the most part, are unusable b/c they end up swinging into her crutches or falling off her shoulders.

A hip pack is a great option; we have several sizes (small, large) and a few colors. Elena doesn't love the look. But it works.

Small pack. Doesn't hold much.

Large pack. Easily holds phone, easy to get in/out. Of course she doesn't like it

I've also considered a holster-type bag, where it would attach to belt loops (most of her clothes do not have these) and be secured by a strap around the thigh. But it would be potentially problematic in the bathroom (in general, belts are for E) so that idea was nixed.

I have considered adding pockets to all of her clothes (kangaroo zip pockets) but I have never sewn a pocket in my life, nor have a ever sewn in a zipper. I bought these shirts for the girls in the past. I've considered making a vest, with pockets all over, but my sketches don't look good enough so I haven't done much with it.

We have a few magnetic pockets that can are secured over the waistband of pants. Overall, it's pretty useful--but some are too thick and heavy, and others too small to hold much. My favorite is this one; lightweight, with a zipper. Again, possible issues of losing the pocket during a bathroom trip (in the past, the instruction is to take off the pocket and stick it to a metal surface in the stall before toileting). And, unfortunately, the pockets have erased hotel cards in the past (magnets!).

Large magnetic pocket. A little bulky, and uncomfortable when sitting.

I looked at bags that attached to crutches, but they are very small and don't seem to be built for quick accessibility. I also worry if she puts the crutches to the side, that money/keys could be easily stolen.

We had an OT group work with us this summer on a carrying option. It had to be accessible from the front, not get in the way of using the bathroom, be secure so things wouldn't fall out, and cute. They came up with the "Pocket Sash", which works very well. We brought it out with us (it was awesome in New York!), had her carry a few things (including money, something like a phone, and her clip-on sunglasses).

Pocket Sash!

Elena's biggest complaints about the Pocket Sash were 1) it was hot (really?) and that 2) she was upset that you couldn't see her outfit b/c the sash blocked everything on some of her favorite shirts. So while the Pocket Sash was incredibly useful, it isn't working with Elena's fashion sense on some days. I still think this is our best go-to-carrying option. I could alter it a bit, but I really think the pockets are in a great position for her.

Still working on this. Suggestions, anyone?


Anonymous said...

I think a fanny pack is the right choice, but she needs a more "teenager-y" one. Maybe one of these?

Anonymous said...

The pocket sash is a good idea. As a young adult with CP who also uses crutches, I've found cross-body purses to be helpful! Be sure to keep the strap as short as possible so that the purse doesn't knock into her crutches though.

Margot Cole said...

Ok as a college student I have very similar issues. Here's how I solve the phone problem: Tell every single person who calls me to leave a message so I can take my time, then sit and answer the phone by taking off the backpack. I have some shoulder bags and sashes too but generally let the phone go to voicemail so I don't rush and drop the phone otherwise I could damage it. It works fine especially since I can just use a "call back missed call" with one button.

I made a film about my college experiences as someone with spastic diplegia CP that might give you an idea of how Elena could do certain things without her aid as a crutch user.
Link is here

EmilyBright1979 said...

After almost 40 years as a crutch and wheelchair user, I found a phone case that works for me.

It is pricey and made for adults, but I can put an ID or credit card in the case as well. Well worth the investment.

TheCzarsOf45 said...

I use crutches, AFO, and my chair. My chair has an under seat storage area for a phone, my Apple iPhone 4 lives there. In my OtterBox Extreme rugged case. E and I move similarly. My AFO happens to be Allard BlueRocker Customs, grown up KiddieGaits for the record. And your CPO can make that transition when E does. And he's ready for you, I helped get him there with E. E and I have SDCP similarly, we move alike. I am a broadcast professional (and in East Tennessee, and wheelchair athlete. My knowhow and how I adapt, is yours always, you and I think alike in how we adapt our world).Sarah Kate Sligh and her parents think alike. We're here to help. I am here for you, for E, for V, and like minded people. I share about how we adapt to our world! My knowhow is yours forever.

Shannon Stone said...

I have arthrogryposis and use a posterior walker (similar to a reverse kaye) so like Elena, my hands are occupied a lot of the time. I have found that a small crossbody purse is the best solution as it is less likely to slip off my shoulders. As anonymous said, make the strap as short as possible. I also use an Otterbox case on my phone, they are pricey but come with a lifetime warranty and my phone has survived being dropped many times on everything from carpet to concrete.

Anonymous said...

As a crutch user in my early twenties, I would enthusiastically recommend cross-body purses! My favorite way to carry my phone is in a Vera Bradley cross-body wallet. The prints are cute and colorful and the wallet fits my phone, keys, ID, money, etc. The body strap is adjustable. Some of the retired patterns are available on Amazon for a discounted price.

I've figured out how to have phone conversations on the move! I use earbuds with a built-in mic. I string the extra cord around one ear so that the mic is on my chin/in front of my mouth. Success! Hands-free cell phone conversations.