Spina Bifida Mom Life

All the things I wish I’d known…

Spina bifida looks different for everyone. The only thing that seems to be consistent across the board is that the moment you receive that diagnosis for your child, there’s a little bit of panic and uncertainty.

Every time I encounter another Spina bifida mom, I find I learn something new and useful for my own child. Inevitably, the other mom also takes away a golden nugget of information from me, too.

Recently, a therapist who focuses on Spina bifida patients asked if I could compile all of this information somewhere she could share. What a great idea! Why wait until we bump into each other to start swapping tips?

Again, I realize that our needs are never identical, so not everything below will be awesome for you, but here’s everything I’ve gained so far that has made life as a Spina bifida mom easier!

Shoes

Let’s start with the basics, am I right? I don’t know that there’s any question I see more often than, “What shoes work best with orthotics?”

My son’s KAFOs are exceptionally wide. He can’t fit in Billy Shoes and adaptive shoes require us to order up enough in size that they’re difficult to walk in.

We started with cheap Wal-Mart sneakers. The idea was they’re so flimsy that it’s easy to pull them apart to fit the orthotic in. Cat and Jack brand shoes from Target also work well. For either of these, we’d take out the inserts and cut out the tongue and any cushioning if we need extra space. The downside was that because he drags his feet, we were replacing his shoes every 3-5 weeks when he’d completely rip through the front end. You also need to avoid the soft foam soles, because there’s not enough tread to keep our unbalanced kids safe.

The game changer for us was KEEN’s Targhee. The shoe is flexible enough to stretch around the orthotic (we order one size up from his actual foot size). The bottom tread and front of the shoe are sturdy enough to last until they’re outgrown. The bottom of the shoe is flat to accommodate the brace (not like an arched athletic shoe). The front of the shoe curves in the direction the foot should go to accommodate the correct motion and minimalize tripping.

Orthotics

The sooner you can fit your child for orthotics, the better. While you can’t necessarily change the direction of any joints, you can protect them from harm. The longer a join is hyper-extended, the farther it’s going to be able to go in the wrong direction.

We have both AFOs (ankle foot orthotics) and KAFOs (knee ankle foot orthotics). You’re insurance will cover both, as long as you have a good explanation of why you need them, and you don’t order them on the same day. We use the AFOs for focused physical therapy, or as a back up when he has sores from the KAFOs.

Once you get a feel for your child’s movement, you’re going to have a better idea of what he needs than your orthotist does (that’s true of most things as mom, right?). Don’t be afraid to ask for something that will help – even if you don’t know if it exists. My orthotist created a new way of putting the brace together, because we needed something different. I’ve also refused to leave the office until they could get straps that worked to hold his legs in. There is always a way.

Clothing

Now that you have orthotics, the next obstacle is clothing that works well with them. Again, we started with Wal-Mart, and I know other people still use their Garanimals socks or the taller striped sock. We’ve done both knee highs and thigh highs – they just need to be snug enough that they don’t slide down.

Because we still had a lot of skin breakdown, we eventually transitioned to jeggings for a thicker barrier between the brace and leg. These still have the soft stretch of tights, with a little more thickness and durability. These also helped with the struggle to find pants that will fit over his braces.

Mobility Aids

Outside of finding the right crutches/walker/wheelchair, we want our kids to be able to go and do as much as possible.

I’m told I should lead with Bella’s Bumba, for little ones ready to be independent on wheels. I just didn’t know about it until we were past that stage! This is a great option for younger ages with lower paralysis who are ready to GO.

My whole journey as a travel writer for families with disabilities started with a Veer Wagon. I wanted to go places that a normal stroller wouldn’t take us. This wagon climbed mountains and hauled over boulders and fallen trees: it got us out there! Also, wagons are “cool,” so it lasted longer than the stroller.

An easier ride on sand and gravel is the Bob Revolution. This one is still a stroller, so it’s more socially fitting at a younger age.

My Freeloader carrier was the next step. This child carrier was designed with special needs parents in mind and can carry a child up to 75 lbs. Just keep in mind that no matter how ergo-dynamic the carrier may be, you’re still hauling 75 lbs. Know your back and know your limits.

Continence

Just two quick notes on this one.

Pre-lubricated catheters are entered under the same code for insurance. I have no idea why no one tells you this, but you can skip the mess and save time, and it costs you nothing.

Cone enemas don’t always work. If you’ve been consistent for several months and trying all the suggestions (like add-ins for the water), ask for something better. There are other options, like Peristeen. Some people have also started using Navina to avoid leaks.

Specialists, Therapies, and “Experimental” Medicine

These are things we’ve discovered along the way that we’re grateful for, but that doesn’t mean they’re best for you. I’m just excited to share things that have made a difference for us!

Intensive Physical Therapy

Many Physical Therapists prefer intensive PT sessions, where PT is packed into a few hours every day over two or three weeks, instead of ongoing therapy throughout the year. The idea is that as the muscles are being stretched, you continue to push them toward growth – instead of coming back to it for another 30 minutes a week later. It can also be less disruptive to just get it all done, as opposed to time off of school each week.

Unfortunately, there are only a handful of states where intensive physical therapy is available. Because of this, it is possible to send a written note to your insurance, explaining that out of state therapy is required because it isn’t available in your own state. The next hurdle is finding a program that will work with out of state insurance. The only program we’ve found that would work with us was Johns Hopkins in St. Petersburg, Florida. They’re also one of the only Therasuit programs in the nation, so it’s a double win! It was still a weekly phone call to make sure everything went through with insurance, but we went for three solid weeks and paid nothing for therapy!

Spinal Stimulation

I discovered this through Instagram when another parent shared a video of her little one wiggling toes that had never before wiggled.

The stimulation uses an electrical stimulation unit, like a tens unit, to send electrical impulses from the lower back to the legs, like nerves would do to activate muscles. The muscles contract in response. The results have been phenomenal, showing improved circulation, sensation, movement, and continence.

The program involves a short training with Gerti Motavalli in Amelia Island, Florida, and then you take the unit home with you to continue therapies at home.

Clinics and Specialists

Someone advised us early on to always seek a second opinion. Even if things are going smoothly, once a year it doesn’t hurt to ask fresh eyes to look at your child. Through doing this, we’ve ended up splitting our care. Some of our specialists are local, while others are one or two states away. I know some people have a Spina bifida clinic that they feel too connected with to go anywhere else, which is kind of beautiful, but we’ve never had that. I feel like we have the best care possible in every area, because I’m always willing to seek input from someone new.

Also, clinics can be overwhelming. Even if it’s all good news, it’s a lot of specialists and information intake for one day. Another SB mom reminded me to come with your questions ready and to be prepared to take notes. Don’t expect that you’ll just remember anything. If it’s possible for both parents to go, it would make a world of difference. One parent can focus on the child while one parent works with the doctors. We’ve never been able to do that, but it would make it less stressful!

We also turn clinic days into little adventures. Maybe add on a new playground or go out to dinner to make it a special day. This is how we turn it from a medical day to a good memory!

Don’t plan anything for after you get home. You will be exhausted.

Managing to Travel for Medical Needs

I realize that last section can seem daunting, so I also want to share how we’re able to do so much medical travel.

HomeExchange

We do both short stays, and long term programs by using HomeExchange. The concept is pretty simple – you pay a yearly membership fee ($175) for endless opportunities of swapping homes, or using points for non-reciprocal stays. We used HomeExchange for our week of spinal stimulation, for an overnight for clinic visits, and for a big part of our one month intensive PT program. Could you imagine a month in hotel costs? We wouldn’t be able to seek out these treatments if it wasn’t for HomeExchange.

We can’t always swap our home because often part of the family stays home. We try to stock up on points to use when our home isn’t available to swap. You can read more about how we make it work, here.

Credit Card Points

I’m not a travel hacker, but at least once a year we try to sign up for a travel credit card with a big sign on bonus. By meeting a minimum spend of $3,000 over three months, I can earn a domestic flight for the five of us. Between free travel, and almost free accommodations through HomeExchange, traveling for medical needs just became a whole lot more feasible!

Staying in School

I realize I’m blessed in having flexible jobs, but the next big concern tends to be school.

Just tell your school what you need to do, and ask how they can work with you. This is not an absence – it’s necessary medical treatment. Our school has been fantastic about putting together assignments ahead of time, streaming over zoom, and moving work online. We haven’t missed any school for our weeks of travel.

All Abilities Playgrounds

These are more places than you realize! We used to only be able to find them through accessibleplayground.net. Now, we use the wheelchair accessible filter on the GoWhee app, and sometimes you can even google map “all abilities playground near me”!

Adaptive Sports

If your child doesn’t have a cognitive delay, he’s not eligible for Special Olympics… which makes it feel more daunting to find places to plug in.

Don’t be discouraged. There are still plenty of opportunities. We play Little League Challenger, which is available around the U.S.. American Special Hockey Association also runs teams all around the country.

If you do a google search for your state name plus the word “adaptive,” you’ll likely find a state center with options near you.

Our favorite this year was adaptive ski through Vermont Adaptive!

Getting Out

We never see other kids in wheelchairs, unless we’re at the hospital. I started Wonders Within Reach, a travel blog for families with disabilities, to change that. It can be daunting to get back out and about, but it’s so worth it. We share accessible destinations and tips to make getting out there a little easier.

We started with just trying to get outdoors, more. As we’re learning what it looks like to travel with a disability, we’ve also discovered countless resources for families with differing needs. Check out this article for more tips on disability discounts, grants, and other supports for families with disabilities!