How Spina Bifida influences how I dress & shop for my daughter

At the beginning of summer, I realized my son had grown out of his 18-24 month clothes, and it was time to upgrade to the next size. Shopping for him was surreal. What is this uber-easy experience of walking into a store, looking for a size, seeing something I like, and… buying it?

Good-ness. SO. SIMPLE.

Dressing kids shopping for clothes AFOs Twister Cables CrutchesWhen gifting events such as birthdays and Christmas come up, people ask what size my daughter wears. My heart rate picks up as I try to find words that explain the requirements of her wardrobe in simple terms. AFOs were hard, but twister cables? It took me a while to figure those things out. And… Holy impossible to dress in winter Batman!

I’m not even going to spend time talking about normal kid dressing concerns – top  & bottom are different sizes, she has opinions now, etc. :)

How equipment affects dressing:

AFOs (ankle foot orthoses): AFOs are thick plastic & metal braces with velcro straps that go up to the knee. Lily’s are “ground reactive” meaning the plastic comes across the front of the calf. These require knee high socks and either wide leg pants, leggings that stop above the braces, or leggings that will stretch over the top. We avoid stretching over the braces because the seam of the brace rubs holes in leggings with the first drop down to the knee and I’m not a big fan of throwing money away. The AFOs also make shoes nearly impossible to find due to the width and thickness of the brace and straps. Some people use tights under AFOs, but they don’t work well for us because they make personal tasks a lot more challenging.

Twister Cables (belted metal cables that bolt onto AFOs): While the twister cables do help position her feet more forward, and encourage development of the appropriate muscles by holding her legs in the correct orientation, they are (to be honest) a mega challenge when it comes to clothing. Theoretically, we could get baggy pants to put on top of the cables. However, we also have to keep pants or cloth underneath to avoid rubbing on skin directly. Also, because they bolt on to her braces, anything that goes under them has to stop at the knee.

Lofstrand (forearm) Crutches: During the summer, we don’t have any clothing challenges due to crutches. However, winter? Oiy! Thick coats and sweaters don’t fit under the arm cuffs, so the sleeve either has to be big enough to fit over the arm cuff and crutch, or has to be pushed up to the elbow.

How reduced sensation affects dressing:

Paralyzed feet: When kids cannot feel their feet, we have to make extra efforts to protect their skin. This means if a sock is folded weird and pressing on Lily’s foot throughout the day, she can’t feel it to let us know it is hurting her. This can cause serious pressure sores, so we check her skin in the morning and at night. We are extra careful to make sure shoes are not too tight, the tongue of the shoe is pulled out correctly, and her socks are smooth and un-bunched.  We also keep her feet covered almost all of the time… even when swimming. She once got 2nd degree friction burns on the top of her feet from crawling on hot pavement during water day at school… we didn’t have to learn that lesson twice.

Spotty reduced sensation in legs: 95% of the time you will see Lily’s legs covered with leggings or long bike shorts and socks up to her knees. She can feel her legs, but not as well as you or I do. Because of this, for example, a simple thing like scooting along carpet can cause rug burns without her realizing it.

My strategies for clothes shopping:

  1. Stock up on capri leggings in the spring. Old Navy has fantastic online sales and I usually do one huge order when the sales seem particularly good. I check again at the end of the season for clearance. Their leggings are usually decent quality material and hold up pretty well. On occasion, though, they will be thin and see through. To watch for this I check the reviews online before I buy.
    • Target has inexpensive leggings but a lot of the time they are thin and don’t hold up well.
    • I love Gymboree’s leggings, and will pop into Gymboree when I’m in the neighborhood to check our their clearance (it’s often a great deal). However, the last couple years they have not carried many capri length leggings (bummer!).
  2. Check the stretchiness of the hem at the end of the leggings. Sometimes inexpensive leggings ARE too good of a deal. On occasion, the manufacturer will sew the hem at the bottom of the leg with regular thread (rather than stretchy thread). This allows for NO stretch. This is quite the challenge for AFO wearers. Only stretchy hems for this girl! And… if the ankles of regular length leggings are super nice and stretchy, I can roll them up to the knee (woot woot!).
  3. Stock up on knee high socks in the fall & during back to school season. Target & Old Navy are my current go-to brands for knee high socks, along with a brand I found online – Judanzy. Old Navy typically releases their knee high socks in late September. Knee high uniform socks have worked for us from Target now that Lily’s feet have grown enough to fit young girl sizes. A good thing about growing older … knee highs are easier to find! When she was a toddler, it was like a second job to track these gems down.
  4. Stay on the hunt for good deals on wide leg jeans. The twisters make any type of long pants difficult, but I have an idea I want to try this fall/winter. I’m going to shop second hand stores for wide leg jeans so that I don’t worry so much about messing them up. :) Then, I am going to split the seams on the outside leg up to the knee, and hem each side separately so the there is an open flap where the seam once was. This will allow me to put her jeans on under her cables while ALSO covering her legs over her AFO braces. I’ll add velcro to each side of the flap so that it can be re-closed to keep out the cold.
  5. Stay on the hunt for good deals on tunic style shirts. Tunics are wider at the bottom and more naturally fit over the twister cable belt.
  6. Stay on the hunt for short to medium length dresses. These types of dresses work well with leggings and have a similar benefit to the tunic style tops.
  7. Buy layers for winter & avoid puffy coats. Because coats are a challenge, I buy thin sweaters to layer over shirts, and then find coats made of thin-ish material to go on top of that. I avoid puffy coats and love a nice thick and warm poncho!

FYI: For shoes strategies (& links to JuDanzy socks), check out my AFO resource page. There is too much on this topic to discuss in one simple post. :)

Sometimes, when I’m shopping, I think of the movie “What Women Want” when Mel Gibson could hear the thoughts of all the women around him. Wouldn’t it be funny if the unassuming shoppers surrounding me in the girls section at Target could hear my thoughts at I tick through my checklist? 😮

What are the considerations you make for your kids when shopping for clothes?

8 comments:

  1. Target just came out with a new brand called Cat & Jack and their leggings are thicker and more durable than the Circo brand they used to carry. So far so good with the new leggings she has worn so far. No holes yet. The Circo brand could get holes in the first time she wore them and lots of worn out knees as well. My daughter wears AFOs and a KAFO so we have found that tights works best for us now with tops/tunics/shorter dresses. My 2.5 year old still does a lot of crawling at home so if the shirts/dresses are too long then she’s constantly stepping on her dress with her knees. Thanks for the tips for the forearm crutches. She still mostly uses a posterior walker at this time so it isn’t a problem yet but hopefully by next year she will be using crutches more often.

    1. I am going to have to check out that new brand at Target – thank you!! I remember that about dresses when Lily was still crawling a lot. We ended up avoiding most dresses and sticking with short ones when we did have her wear them.

  2. Your stories have made me smile remembering my own childhood triumphs and challenges with spina bifida. My mother never said a word the year I insisted on the pants that absolutely did not work with the AFO brace.

    The bottom on the pants would not fit over the top of the brace but I was insistent that it was not a problem. Every time I wore them I would need to put the brace on, then put the pants on, and then put the shoe on. Coming home after school would require completely undressing just to take my shoes off.

    Never admitted to my mother that she was right. Even today clothing can be a challenge, but that was the last pair of pants I ever owned that absolutely didn’t work.

  3. Thanks for the ideas! We have had AFOs for a while (two kids over 20 years!) but just got a twister/de-rotation strap that is giving me fits. How can my 7 year old wear it to school when it has to come off for bathroom visits and she can’t put it back on, but it’s not comfortable to wear under clothes? You have given me an idea–cut a leg off some leggings, but that on her affected leg, put the strap over that, THEN underwear, pants, socks, AFOs, shoes. It’s like a NASA mission with this long checklist! Rock on, mom!

  4. We use tights and cut the legs of the tights off of the top of the tights. Than we put the tights on her legs than AFOs and than fold the top of the tights back over and all the way back down her AFOs. This helps alot because when we use knee high socks they would always slide down into the brace. When she uses her cables we would just put the whole brace over a pair of leggings, that’s just what we found works for us.

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