I will never forget the day we received “the call.” I had just walked my son into preschool and came back to the car to see a missed call from our adoption agency. I quickly dialed my social worker’s number and she said she had the file of a beautiful little girl she wanted to e-mail me.
My heart was racing as I waited for the file to download to my inbox and then in an instant there she was. The emotion of seeing my daughter’s face for the first time is hard to describe. The dreams and the prayers of so many years came together to form the face of the little girl who popped up on the screen of my phone.
We knew from her file that she had a limb difference but the specifics were pretty vague. We consulted specialists before she was even home to try to formulate a plan but were told until they physically assessed her there was not much they could do.
After we got home and felt like she was attaching well, we began to set up appointments with several specialists. Her orthopedic specialist quickly determined that she needed to be fitted for a brace or, as it is called in the orthopedic world, an AFO.
AFO simply stands for ankle foot orthosis. In her case, the AFO would control her foot drop as well as give her some stability with her limb difference. We were excited to have a solution but we were pretty clueless what life with a brace would entail and how to proceed.
We immediately recognized we had a lot of unanswered questions about AFOs. We have learned so much through trial and error and research over the last two and a half years. I am by no means an expert but I want to share some tips and tricks we have learned along the way. Hopefully, these ideas are helpful for parents who are just beginning the AFO journey with their child.
Choosing a shoe:
Our daughter only needs to wear an AFO on one foot which means we have to purchase two separate size shoes. She needs one wider and larger shoe for her brace foot and then a regular size shoe on the other foot. She usually wears a size or a size and a half larger on her brace foot.
A quick Google search will reveal there are several companies that make shoes specifically for children with AFOs. If you are on a budget and need to go a different route, we discovered that several popular brands make wide and extra wide shoes in child sizes.
After a lot of research, we landed at Stride Rite. We learned that for clients who have an AFO they actually offer a buy one, get one 50 percent off deal which has been helpful for our budget since we need to buy two of every shoe.
Nordstrom also allows customers to buy two separate sizes of shoes as long as they are one and half sizes different. This is a big money saver for AFO customers.
Some helpful tips to finding a shoe to fit over an AFO.
1. First and foremost, make sure you bring the AFO to the store with you. This is not the time for guesswork!
2. Look for a wide or extra wide shoe particularly with a wide and deep toe box.
3. Hold the AFO up to the back of the shoe before you ask your child to try it on to see if it is a possible fit.
4. Remove the insole of the shoe to make more room if necessary.
(As you put on the shoe, you may need to rock the shoe side to side to help it slide over the brace. It may require a little more force than you are used to but it should still go on easily and the shoe will stretch over time. If the brace fits too easily into the shoe, the shoe may be too large. You want the smallest size possible that will still fit the brace.)
Selecting high-quality socks:
A pair of good quality socks is crucial for AFO wearers. You need to protect your child’s skin from the brace rubbing against it throughout the day. Our AFO company gave us one pair of socks to wear under the brace but I ordered several more so I wouldn’t have to be dependent on doing laundry every day just for the socks.
You want to look for socks that are moisture-wicking and seamless as well as wrinkle-resistant. The socks need to be tall enough to cover the height of the brace. The socks cannot be too baggy because you don’t want them to fall down. We purchase taller socks and then fold them over our daughter’s brace. We have enjoyed this brand of socks and have never had them tear.
Making the brace fun:
Our brace company allows us to choose the color of the actual brace as well as the velcro strap color and a pattern or character. Our daughter really enjoys getting to choose these items and it helps her look forward to each new brace. She chose to have a picture of Superman on her latest brace and truly thinks her brace gives her the super power to run faster.
Choosing pants that fit over an AFO:
We’ve found that wider leg pants work well over the brace and most leggings are stretchy enough to stretch over the AFO.
When the questions come:
When our daughter is wearing pants, most people do not even notice that she has on an AFO. When she wears shorts, however, kids do ask questions. Usually I just answer by saying the brace enables her to walk better and that seems to satisfy most children.
Frequency of purchase:
We are currently purchasing a brace every six months to keep up with our daughter’s growth.
How often to wear the AFO:
Your child’s physical therapist and orthopedic specialist will let you know how long they want your child to wear the brace each day. In our daughter’s case, she wears the brace any time she is outside the house (school, extracurricular activities, outside play, etc). When she is home, she takes it off.
When your child first receives his or her brace, your specialist will most likely advise you to only allow your child to wear the brace for an hour or two at a time each day until your child becomes accustomed to its fit.
Non-brace shoes:
We have found that it is important to have at least one pair of non-brace shoes. If we know ahead of time that we are going somewhere that our daughter will need to be able to get her shoes off and on quickly, we let her wear a pair of regular size shoes on both feet. For instance, we allow her to go without a brace when we go to the pool or an indoor restaurant playground. The process of sock, brace, and shoe can be frustrating to her if she feels left behind when all the other kids can take their shoes on and off rapidly and her process is longer.
AFOs and sports:
The AFO has not slowed our daughter down one bit from any activity. She climbs trees and rides her bike and plays like any other child. She wears her AFO to gymnastics class to give her stability. When she decided she wanted to play soccer, we simply purchased two separate pairs of cleats and removed the insole to the pair for her brace foot. Instead of an AFO sock, she just wore a soccer sock, her brace and then the shin guards on top. We pulled the soccer sock over the brace and shin guard and you could hardly tell a difference.
We have learned a tremendous amount about AFOs since that precious picture from my daughter’s file popped up on my phone screen two and a half years ago.
One of the greatest lessons I have learned… AFO kids are unstoppable!
Great information here in this blog. Love seeing pictures of my precious granddaughter!!! ❤❤❤
I found your post after searching for “playing soccer with an AFO.” This is so inspiring! I am a mom who’s wearing an AFO for the first time in my life after thoroughly breaking my lower leg last year which caused nerve damage. I look forward to playing soccer again with our teenage boys. I, too, have had difficulty finding info about “doing life with an AFO.” Thanks for sharing what you’ve learned. Please pass on to your daughter that she is an inspiration and makes it look fun (and quite easy)!
I’m 15 and have cerebral palsy. This blog is what I truly needed to read right now. I’ve had Night braces before but to sleep in and rarely wore them out of bed. Now I need day ones. My physical therapist has been talking about AFOs but we’ve talked about other options like casting again. I play sports and I was worried about sports. This has saved me from a lot of worry. Thank you!
Thank you so very much for this. GREAT information. My 15 month old will be getting aN AFO and ive just been so overwhelmed by it all.
Thanks so much for this excellent and extremely informative post. My 4 year old is being fitted for an AFO and my head is spinning with so many questions about what this new chapter will look like. The info you provided makes me feel way calmer and like I have a great head start. Again thank you!!
Thank you 😢