Shoes. I love them. I could obsess about the different shoes I have on my wish list and build outfits around a fabulous pair of statement heels in a heartbeat. Did I have any idea I would think more about Buster's shoes than I would about a sleek pair of Jimmy Choos? Absolutely not. I am so, so tired of the kiddo shoe struggle that is finding the right pair to fit braces, cast boots, carbon fiber aids, etc.
But let me back up a bit...One of the challenges with cerebral palsy is that it can cause muscle tightness (and/or weakness, depending on how one is affected, and everyone is different). The muscles then can pull on the child's bones, and don't allow the bones to grow properly. Buster started to show signs of a troubled gait about a year after his strokes. He started to have difficulty getting his heel to hit the ground when he walked or ran. His calf muscle is tight, and the muscle near his shin is weak, which creates a bad combination for a proper heel strike while walking. When a typical person walks, the brain uses the muscle in the front of the leg to pull up on the toes so the person can land heel first with each stride. What the calf tightness also means is that his leg bones are constantly being pulled, while also still being formed through development. Tight muscles cannot grow properly, if at all, and unless there are measures taken to relax the muscles, they will continue to pull on bones, causing larger problems.
Although many people see adults with cerebral palsy and may think that the condition worsens over time, it actually is static. The muscles do not get tighter, but what causes the worsening appearance is the fact that the person may have underdeveloped muscles that have pulled at bones for so long that "proper" gait and other gross motor skills are largely hindered. To combat this, interventions are administered during childhood to prevent as much future damage as possible. Physical and occupational therapists and Physical Medicine and Rehabilitation (PMR) doctors work to create plans for various devices and support systems to help with movement: braces, gait trainers, Walkaides, elbow crutches, therapy sessions, gait analysis, Botox injections, etc.
Buster began his slog through the orthotic world with a Supra Malleolar Orthotics (SMO). When he first learned to walk, at 17 months, he seemed stable on both feet. His hemiplegia (weakness on one side of the body, with both his arm and his leg affected) is on his left side and his therapists were worried about his future gait and immediately suggested an SMO. An SMO is a small, plastic brace that wraps around the foot and reaches up just past the ankle bone.
It provides the ankle with more support so the patient's foot does not roll inward or outward. I remember questioning the suggestion for Buster to wear one, only because it looked like his walk was "typical" for a child his age. Of course, I am not a physical therapist and I couldn't see the fine details of a gait that a therapist could. Additionally, I was in denial about how serious Buster’s needs were at the time and about how they would increase further down the line. The push to get him a brace scared me because it made his condition more “real” to me. People would see the brace and I knew that questions from friends, family, and strangers alike would quickly follow.
After using an SMO for a short time, it was clear that Buster needed an Ankle Foot Orthosis (AFO), which is a much bulkier piece of equipment. AFOs are created by molding a patient's foot and leg, and are custom made to provide support and to keep the foot flat, to allow for muscle stretching while wearing. This is supposed to help keep the range of motion in a desirable place for the best gait possible. Some AFOs have hinges, some do not--it depends on the child's needs at the time. Buster has had multiple AFOs, each one with a slightly different purpose.
Here's where the shoe trauma comes in. AFOs, because they are molded to each child, fit differently on each child and each brace for each child can fit differently on them. Because Buster was so young when he first received one, he needed new braces every six months or so, to keep up with his growth spurts. Each brace required a different shoe, and what worked for one AFO didn't necessarily work for the next generation. In addition, because Buster had a brace only on one foot, it meant he needed a different size shoe for each foot. I am in various Facebook groups with parents of children with cerebral palsy and soooo many of those parents ask the same question: What shoes can I buy that will fit my child's AFO? SMO? Carbon Fiber Brace? Here are some things I have learned along the way, as well as some suggestions for starting out:
1) NORDSTROM IS A LIFESAVER. I love Nordstrom, for so many fashion reasons, but after I learned about their child shoe policy, I will always be their biggest fan. I never thought to go there for Buster's shoes but I took him one day at the suggestion of his physical therapist. Here's the gold: Nordstrom will sell you two different size shoes, if the difference between the sizes is more than a size and a half. Yep, believe it! No more buying two separate pairs at another retailer! I took Buster in for a fitting, and his AFO created such a size difference between the two feet that they were happy to sell me a single pair of shoes in two different sizes. The manager usually has to sign off, in my experience anyway, and they simply write down your name and the two different sizes sold in case of a necessary return. One time I brought Buster in to try shoes on and the size discrepancy was less than a size and a half, but they STILL sold me the shoes. I cannot promise this will be the case for everyone, but I have found that the Nordstrom customer service is so excellent, that I've never had a problem. Especially once the salesperson sees Buster in his brace ;)
2) BILLY Footwear : I first found BILLY Footwear years back, when Buster had already gone through a couple of bulky AFOs. Before I learned about them I resorted to purchasing two different size shoes (so, two pairs) from Stride Rite or Target. If you haven't heard of BILLYs yet, you’ll love them. They were created
after Billy Price, a co-founder of the company, fell and broke his neck. He couldn't put on and take off shoes independently after his accident and he, along with co-founder Darin Donaldson, created a shoe with a zipper that wound all the way around the toe box and past the heel. Unzippering the shoe allows it to open almost in half, and it’s zipper pull makes grasping much easier—a necessary element for people who also have affected hands or arms. Nordstrom, at least at the time, sold one version of BILLYs, which worked out perfectly---the hightop sneaker. Now the company offers toddler sizes, adults sizes, and wide sizes, and has added athletic sneakers, winter boots and rain boots to its collection. Let me tell you: Buster's first pair of BILLYs were amazing! He could zip and unzip his shoes on his own, and he could effortlessly pop his AFO foot in once the shoe was fully unzipped. We have also tried the low-top versions of BILLYs, but they didn't work for us.
It will depend on each child's AFO, since some are bulkier than others; even Buster's AFOs varied over the years, either from switching from hinged to non-hinged, or from molding differences. One of the orthotists who worked with us over the years felt that BILLYs were too shallow for an AFO, and that may be the case for some children. The high tops worked well for us, and I can't say enough positive things about what the company is doing to make more fashionable shoes that are accessible to people of different abilities. It is important to note that BILLY shoes were not specifically designed for AFOs, but their website says they are actively trying to make their footwear more AFO friendly. Regardless, if you're on the hunt for shoes, these may work wonders for your child.
3) Nike FlyEase: Once Buster got a bit older, he wanted "cool" shoes. And if I'm being honest, he wasn't a huge fan of the BILLYs. I happened to love them and still think they are a great option for cute, Van-style shoes. But I'm sure you know how it goes: my then five year old started wanting to wear basketball shorts and football jerseys more than the adorable polo and madras shorts I had picked out for him. Sigh. So, Nike, here we are. One of the best things about the Nike FlyEase is that they look like regular Nikes! Not extra big, not with large lug soles, no platform or anything else that would "give away" the fact that the shoes are workable for braces. AWESOME. The sneakers have a zipper, similar to BILLYs, but this zipper is around the ankle and heel. They also have a long zipper pull to make
manipulation easier. Although only a small portion comes unfolded, the shoe itself is fabric and very flexible. We could easily get Buster's AFO into the Nike FlyEase and zip it closed. The tongue is also pretty stretchable and can be pushed far forward to allow for more room when slipping in the AFO. The fact that the Nike FlyEase is fabric ended up being both positive and negative for Buster: the fabric was flexible enough to fit around the AFO toe box, but it was also so soft that the AFO edges eventually ripped through the toe area; however, that took quite a bit of time to occur, and with constant, every day tough wearing, I wouldn't expect the shoes to stand up to Buster's rough play and sharp movements. For the price, for the fact that these shoes look "cool," and their ability to fit multiple AFO versions (of Buster's) I would mark these a clear winner. There are now multiple FlyEase versions, and I would imagine there could be options for different brace styles and sizes.
4) Zappos: Did you know that Zappos has an adaptive shoe section? I had no idea until a short while ago! I checked it out, and they sell BILLY shoes among other brands as well. This could be a great option if the BILLY site is out of stock on a style you're looking for. And they have free returns which is incredibly helpful if you'd like to order a few sizes and figure out what works best before making a final choice. I never ordered anything for Buster online simply because I needed to make sure the shoes fit his brace before purchasing. I'm a bit of a procrastinator and many times Buster needed new shoes, like, yesterday, and I was in a rush to get him something (anything) that would work. No time for even three day shipping. Ha.
5) Shop local. I am all about supporting small business, especially because many of them are local experts in their products. I have taken Buster (and Birdie and CJ) to a local shoe store near our home and I learned that the owners and sales people had worked with many children who wore braces. We live in an area with multiple children's hospitals and specialty healthcare sites so the exposure may be different where you live, but finding a family-owned or small business near you is worth investigating. Our kids attend a private school with a uniform and I began a search for shoes that fit the school's requirements. I went into the small shop with low expectations and I left a long time customer. The salesperson was amazingly helpful! She knew each shoe in stock like she had made them all herself--some were more adaptable than others, some companies offered wide sizes, and even when a product her store carried did not work for Buster she suggested a different brand that I could purchase elsewhere. I felt so comfortable knowing the sales staff really wanted to find something that worked for us, even if it meant taking our business somewhere else.
6) Target: This may not be the absolute best option in terms of offerings, but Target is also worth a look. Online they sell BILLY shoes (if you search "adaptive shoes"), and many of their kid shoe offerings have double velcro straps which means the shoe may open up enough to slip in an AFO or other type of brace. I have also purchased high top shoes for CJ that have zippers up both sides. Granted, I never tried them on Buster but depending on the brace, similar styles might work. I know many Target employees in our neighborhood and they always mention to me that they are working to incorporate more adaptive clothing and shoe options. Great news for families with kiddos who have special needs or sensory challenges! I do not believe Target has an option to buy two different size shoes, so you may need to buy two pairs for some braces, but at around $20-$30 a pop, this could be more feasible for some families.
I am always looking out for other shoe options, either for Buster or other kiddos I know. I will post more as I discover exciting solutions but if you know of any, please send me a message!
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