Last week during Colten’s physical therapy with the EarlyOn PT (we see her bi-weekly), the words “twister cables” came up and it made me reel. I wanted to shake the PT and say, “Just let him BE, he crawls around, he pulls to stand, he even stands to play with assistance. STOP making it harder.” At our previous session with her, she really pushed for more AFO wearing and we’ve tried to work into that. It is hard to put braces on a child that moves non-stop, but when he’s braced, he moves so much less. Is it because he doesn’t want to, or because he hasn’t learned to? It’s hard to put braces on a kid that can stand without them and mostly just twist his ankles upside down…but when he stands with braces, he twists his knees and his hips. Is it better to ruin his ankles or his knees? Will he learn over time how to adjust? They re-assure me that YES, he will learn, and you may now often hear us tell Colten, “fix your feet… find your toes…” and other such phrases. All of these phrases are starting to instill him in a very important concept: he has feet and he needs to take care of them.
When I complained to the Beaumont PT, who we see weekly, about the idea of twister cables already, when he’s not even walking yet, she agreed that those might be overkill for him, yet there might be value to seeing if we can attain a better alignment. When Colten crawls or pulls to stand, his legs turn inward – at the feet if he has no braces on, and from the knee if he has braces on. When he stands, he is so focused on trying to balance and play that he doesn’t focus on the position of his feet at all and is often standing on the top side of his feet or ankles, and his toes are turned 90-degrees in, or even more. When I see him in those positions, I’m a little glad he cannot feel his feet much because it just looks painful! Granted, if he could feel them, he might not do that. Hmmmm. Anyhow, I complained. Too much too much too much. Let the kid be. I DON’T CARE WHEN HE WALKS, even if EarlyOn likes to have kids “taking steps” by the time they move to the next program at 18 months. I want him to move in ways that work for HIM. Yes, I want to give him options, but I don’t want to give him twister cables when he is just getting used to AFOs. By the way, these are what twister cables look like… basically a waist band with metal rods or cables down the side that attach to another pair of AFOs (because making them to fit his existing AFOs would be silly, right?! They come with a second whole set of AFOs):
So instead of discussing that any further, our PT had a different solution that was more conservative than twister cables but would still give Colten the alignment help he needs – TheraTogs. From their website: TheraTogs are one of the most innovative, versatile and progressive modalities available for physical and occupational therapy practices. TheraTogs are a live-in exo-muscular system for neuromotor, postural, and sensory training. The system provides a versatile, flexible approach to addressing and managing mobility, sensory input, and stability issues.
TheraTogs fit over or under clothing – ideally under but for timing and dealing with a fussy boy, we went for over. TheraTogs velcro to themselves and can be worn with or without braces. The PT put these little “shorts” on Colten, then ankle straps, then took a long TheraTog strap and connected it at his ankle, wrapped it around his leg to get the proper external rotation, and attached it to the shorts. At first Colten was not happy being manhandled into these but it really took just a few minutes and then when we put him down to crawl he went right after a toy. And instead of flopping in, his feet stayed up how “most kids” feet stay when they crawl. And he didn’t seem to notice much of anything, which was SUPER cool. The PT said this system is for some reason hard to get insurance to cover (sometimes the best therapies are hardest to approve, sadly) and it appears it would cost about $800 for us to get him the pieces he needs. So we’ll talk more about this in the coming weeks to see if it’s a viable option for Colten. After he crawled around a bit, his PT was ready to get him working. I had mentioned to her how he seemed to be trying to “cruise” at the couch now but just didn’t seem to know what to do with his feet and would only move his upper body and then fall. So she supported him in a standing position, I motivated him with fish crackers, and what you see in the next video is what he did 3-4 times back and forth along that table/bench…
[VIDEO: Colten “Cruising” in TheraTogs]
He certainly was unstable and needed the support, but he did much better with this configuration of AFOs and TheraTogs. It was pretty sweet to watch him do this! Goldfish crackers… such motivation! I would be really curious to see how he does without AFOs and just TheraTogs – maybe this week at PT we’ll try that! I’m not sure they can help his feet from turning upside down though since it goes only down to the ankles, not around the foot itself.
And did you notice SHOES?! FINALLY after much searching and talking and trying on of shoes, Payless won our money. This shoe debacle had me extremely frustrated. The tidbit one mom gave, to remove the insole, helped… then my own wonderful genius of a mom suggested I take the shoe’s tongue right out, which would make the velcro fit even better. Voila! I bought a new pair of shoes, tore out the insole, cut the tongue out and now we have shoes that FIT over AFOs!
So for other caregivers out there looking for shoes to fit over AFOs, here are my newbie tips:
– Wide or Extra Wide shoes will most likely be all that fits
– Payless always carries shoes in wide (although not all wides are made equally!), and NewBalance and Saucony carry wide (but much more expensive). I have heard Target and Walmart often have at least a shoe in wide, as well.
– Avoid anything too constrictive over the tongue area, such as bungees/strapping – it makes it harder to get the foot in.
– Take out the insole (caution: some are really glued in so I do not recommend removing those in the store unless you’re buying them!); some are even sewed in – we just skipped over those.
– If it’s a velcro strap, you’ll probably find little success with the velcro straps that loop over and fold back onto itself; look for ones that are “one-way” so it doesn’t fold back over itself – it just crosses and attaches to the other side of the shoe.
– Remove the tongue if you want – the AFO most likely provides enough top of the foot support. Just check how the shoe is constructed so you don’t remove it too far in and cause the shoe to fall apart.
I took the boys to a birthday party at a bounce house today (big building full of kid-friendly inflatables for them to bounce/climb/play on). I knew Colten wouldn’t spend a ton of time in the bouncers, especially if it was crowded, and I knew I couldn’t carry him very long (he is one heavy boy), and he would get trampled by kids if he crawled, so I decided to take his Bumbo wheelchair with us as another option for him instead of sticking him in a stroller and having him just stuck there. He likes to move so much it’s hard to keep him contained!
I got past the internal struggle of taking the wheelchair out in public… I don’t know why, but I just felt funny about it… Richard took him to school in it once, but this was out in public with lots of strangers and for some reason, I was just not sure about it. Happy to say though, I am so glad I took it! There was a large open area in one section and after he rode one of those penny horses 10x, played in a couple bouncers, and got mauled by some curious girls, he wheeled around in that chair like a pro (except he does run into people when going backwards as he’s obviously not looking). I was amazed at how well he maneuvered it, turned it, and propelled it through the area! He even took it up and down a hallway, getting himself turned around 180 degrees at times to go in the opposite direction! I was quite impressed – I had not seen him move so well in this yet. We’ve only had this chair since mid-December, and on the days he actually goes in it, he spends no more than 5-10 minutes at at time in it, 1-2 times during the day. Quite impressive how quickly little brains learn! But when you think about it, a child learning to walk will go from standing to walking in a matter of a couple months, so he went from just rocking the wheels back and forth to propelling in both directions and turning himself in the same time frame.
Unfortunately, all that wonderful description and the only video I got was a bit of him in the hallway, but you can see a little of how he knows when and how to change directions. He also realizes it is a little easier to get into trouble when he’s higher up…
[VIDEO: Colten “Cruising” in the Bumbo Wheelchair]
All for now, hope you all have a good rest of the weekend!