Bootfitting challenge - 13 y.o. toe walker on autism spectrum

[newlyn]

Looking for advice on bootfitting for my 13 y.o. son, who is a new skier, on the autism spectrum, and has been a lifelong toe walker. He literally has no dorsiflexion -- 90 degrees is stretching for him.

By way of background, my wife and I got back into skiing last year. We arranged for several adaptive lessons for my son at various mountains, but, while he generally had fun, he has had a very difficult time learning. After several lessons he knows how to turn, but he cannot effectively stop or slow down, so he is still on the most basic of bunny hills. Part of the problem is that he cannot snowplow due to his limited range of motion.

My plan is to get him his own pair of boots over the summer or early fall (when prices are cheap) that we can better fit to him. I don't want to spend a whole lot since he is 13 and the boots probably won't last more than a season, so this will largely be a DIY thing. (Also, as we are outside Philadelphia, I am not sure there are any good bootfitters around here.)

My thinking is that he needs a relatively stiff boot, since he has no dorsiflexion, and then a fairly substantial heel lift so he can get over his toes. Let me know if I am on the right track there.

Also, a consequence of toe walking is that he has a relatively wide forefoot but narrow heel. Not quite sure how to deal with that.

Advice appreciated, and also if anyone knows a good fitter not far from from Philadelphia.

 

[zircon]

Note: I am not a bootfitter, nor do I know anything about ski boots. I am, however, an autistic adult working on becoming an advanced skier and have boot issues.

I am your son 15 years in the future. Different in that I did learn to ski to an intermediate level at age 11ish, but with respect to toe walking, and associated range of motion, pretty close. Seeing a good bootfitter will be all the difference. This is not a DIY type thing. For my most recent boots, the bootseller sold a boot to fit the forefoot and not the heel and that created a fun new variety of problems. After seeing a good bootfitter, I ski with a heel lift and am in the market for a potentially stiffer, narrower boot. Most boots can be made wider in the forefoot. The heel cannot be made smaller.

Does your son have autism-related sensory issues? It's possible that if he's in rental boots the boots are too big—more so than most rental boots—because he can't tolerate the uneven pressure. This is going to make transmitting any input to the skis way harder because he isn't applying any force to the boot with his limited range of motion. All motion is happening inside the boot. I'm pretty sure I avoided this as a kid because I was in a pair of low volume hand-me-down kids race boots from my cousin.

Learning to ski in general is going to be a challenge for him because it requires blending unintuitive fine and gross motor skills for multiple body parts at once. Don't let his boots add to that. See a bootfitter for him, even though it's going to be expensive. After that, get him some lessons with a high level instructor who's able to adapt their teaching style to students as individuals. Good luck!

EDIT: additionally, in my experience, mentioning the autism is useless for discussing range of motion. Sports people and physiotherapists have no idea that autism --> toe walking --> no dorsiflexion. They think it's just about social awkwardness and get confused about why you're telling them this.

 

[Philpug]

Advice appreciated, and also if anyone knows a good fitter not far from from Philadelphia.

Billy Kaplan, he is in the Northeast. He does not work in a ski shop but is a world class bootfitter that can work with specialty cases such as your son's. I will get you his contact info.

 

[Cantman]

Hi newlyn

Looking for advice on bootfitting for my 13 y.o. son, who is a new skier, on the autism spectrum, and has been a lifelong toe walker. He literally has no dorsiflexion -- 90 degrees is stretching for him.

By way of background, my wife and I got back into skiing last year. We arranged for several adaptive lessons for my son at various mountains, but, while he generally had fun, he has had a very difficult time learning. After several lessons he knows how to turn, but he cannot effectively stop or slow down, so he is still on the most basic of bunny hills. Part of the problem is that he cannot snowplow due to his limited range of motion.

My plan is to get him his own pair of boots over the summer or early fall (when prices are cheap) that we can better fit to him. I don't want to spend a whole lot since he is 13 and the boots probably won't last more than a season, so this will largely be a DIY thing. (Also, as we are outside Philadelphia, I am not sure there are any good bootfitters around here.)

My thinking is that he needs a relatively stiff boot, since he has no dorsiflexion, and then a fairly substantial heel lift so he can get over his toes. Let me know if I am on the right track there.

Also, a consequence of toe walking is that he has a relatively wide forefoot but narrow heel. Not quite sure how to deal with that.

Advice appreciated, and also if anyone knows a good fitter not far from from Philadelphia.

Hi newlyn!
Feel free to contact me at: [email protected]
215 760 8226
I’d be more than happy to assist you in finding your son a solution to his fit issues.
Thanks!
Billy Kaplan
Performance Pedorthics Inc.

 

[newlyn]

Note: I am not a bootfitter, nor do I know anything about ski boots. I am, however, an autistic adult working on becoming an advanced skier and have boot issues.

I am your son 15 years in the future. Different in that I did learn to ski to an intermediate level at age 11ish, but with respect to toe walking, and associated range of motion, pretty close. Seeing a good bootfitter will be all the difference. This is not a DIY type thing. For my most recent boots, the bootseller sold a boot to fit the forefoot and not the heel and that created a fun new variety of problems. After seeing a good bootfitter, I ski with a heel lift and am in the market for a potentially stiffer, narrower boot. Most boots can be made wider in the forefoot. The heel cannot be made smaller.

Does your son have autism-related sensory issues? It's possible that if he's in rental boots the boots are too big—more so than most rental boots—because he can't tolerate the uneven pressure. This is going to make transmitting any input to the skis way harder because he isn't applying any force to the boot with his limited range of motion. All motion is happening inside the boot. I'm pretty sure I avoided this as a kid because I was in a pair of low volume hand-me-down kids race boots from my cousin.

Learning to ski in general is going to be a challenge for him because it requires blending unintuitive fine and gross motor skills for multiple body parts at once. Don't let his boots add to that. See a bootfitter for him, even though it's going to be expensive. After that, get him some lessons with a high level instructor who's able to adapt their teaching style to students as individuals. Good luck!

EDIT: additionally, in my experience, mentioning the autism is useless for discussing range of motion. Sports people and physiotherapists have no idea that autism --> toe walking --> no dorsiflexion. They think it's just about social awkwardness and get confused about why you're telling them this.

Zircon, thank you for posting. I think you hit the nail on the head, and gave me some great advice.

EDIT: BTW, if you have any advice/tips for helping him learn I would love to hear from you. As mentioned, we have been setting him up with adaptive private lessons whenever possible, but it has been slow going. I bet you are right that his limited movement is all inside his boots because he really doesn't like how they confine his feet.

 

[newlyn]

Hi newlyn


Hi newlyn!
Feel free to contact me at: [email protected]
215 760 8226
I’d be more than happy to assist you in finding your son a solution to his fit issues.
Thanks!
Billy Kaplan
Performance Pedorthics Inc.

I will definitely reach out. Thanks

 

[zircon]

EDIT: BTW, if you have any advice/tips for helping him learn I would love to hear from you. As mentioned, we have been setting him up with adaptive private lessons whenever possible, but it has been slow going. I bet you are right that his limited movement is all inside his boots because he really doesn't like how they confine his feet.

I was diagnosed at 16, so never took an adaptive lesson and can't speak for that experience. However, do make sure you're getting a real instructor with teaching credentials/experience. At one of my home mountains at least, a good chunk of the adaptive program is done by volunteers who are doing it to feel good and get a free season pass. There's a ton of research out there that says "having X or Y learning style" is a myth, but this is not true for students with neuro-developmental disabilities who do tend to have very real and specific learning needs that get lumped under the category of learning style.

Another possible challenge to keep in mind for lessons: skiing, as you probably know, is a sensation-based sport. Lots depends on how a particular movement feels to you when you're doing it and people on the autism spectrum often experience their bodies differently than the general population. We also tend to explain things (don't want to assume how verbal your son is) repeatedly in a way that sounds the same to neurotypical people and means completely different things to us . These combined means he might run into issues where the instructor is telling him he should feel something a certain way and he isn't or he has trouble articulating the sensory feedback he's getting in a way that makes sense to other people. Example: when I was learning to carve a turn, an instructor kept asking if I felt it in my arch, and I had no idea what he was on about. Eventually gave up trying to figure out, but did get the movement pattern right feeling the pressure from the tip of the ski bending. Not a problem, just needs a flexible and experienced instructor. You might want to see if you can get the same instructor repeatedly once you find one whose communication style works for your son since consistency is key.

Some other random thoughts: balance will probably be harder for him—this can be worked on off skis if he's interested. Try to keep him working on one thing at a time to avoid getting overwhelmed—the autism spectrum tendency to fixate on minutiae can be useful here. Be wary of foot injuries—often with toe walkers the foot bends because the ankle won't which leads to nasties like plantar fasciitis and cuboid displacement.

Apologies for the novel! Hope at least some of that can be useful.

 

[James]

Wonder if the Naboso stimulating insoles/surfaces would help a little. It's pretty new.

https://nabosotechnology.com/neuro-rehabilitation

 

[newlyn]

I was diagnosed at 16, so never took an adaptive lesson and can't speak for that experience. However, do make sure you're getting a real instructor with teaching credentials/experience. At one of my home mountains at least, a good chunk of the adaptive program is done by volunteers who are doing it to feel good and get a free season pass. There's a ton of research out there that says "having X or Y learning style" is a myth, but this is not true for students with neuro-developmental disabilities who do tend to have very real and specific learning needs that get lumped under the category of learning style.

Another possible challenge to keep in mind for lessons: skiing, as you probably know, is a sensation-based sport. Lots depends on how a particular movement feels to you when you're doing it and people on the autism spectrum often experience their bodies differently than the general population. We also tend to explain things (don't want to assume how verbal your son is) repeatedly in a way that sounds the same to neurotypical people and means completely different things to us . These combined means he might run into issues where the instructor is telling him he should feel something a certain way and he isn't or he has trouble articulating the sensory feedback he's getting in a way that makes sense to other people. Example: when I was learning to carve a turn, an instructor kept asking if I felt it in my arch, and I had no idea what he was on about. Eventually gave up trying to figure out, but did get the movement pattern right feeling the pressure from the tip of the ski bending. Not a problem, just needs a flexible and experienced instructor. You might want to see if you can get the same instructor repeatedly once you find one whose communication style works for your son since consistency is key.

Some other random thoughts: balance will probably be harder for him—this can be worked on off skis if he's interested. Try to keep him working on one thing at a time to avoid getting overwhelmed—the autism spectrum tendency to fixate on minutiae can be useful here. Be wary of foot injuries—often with toe walkers the foot bends because the ankle won't which leads to nasties like plantar fasciitis and cuboid displacement.

Apologies for the novel! Hope at least some of that can be useful.

No apologies necessary - this is super helpful!

My son is very verbal/social and intelligent -- his most obvious challenges are sensory and motor planning/coordination -- but I think you are correct that it is hard for others to understand how he perceives things.

The adaptive lessons are widely varied. We found him a very good instructor at Blue Mt in the Poconos, where he made the most progress. There, the "adaptive" lesson is basically just a private lesson with one of their private instructors who has some specialized knowledge/skill. But we also like to take trips to various VT mountains, so there isn't a lot of consistency. (We had a terrible experience with the adaptive program at Mt Snow, which I won't get into here. It almost ruined skiing completely for my son.)

We are working on stretching with him over the summer, but I like your idea of throwing in some balancing too.

Thanks again.

 

[newlyn]

Wonder if the Naboso stimulating insoles/surfaces would help a little. It's pretty new.

https://nabosotechnology.com/neuro-rehabilitation

Interesting. Hard to tell if it is legit or snake oil.

 

[James]

Interesting. Hard to tell if it is legit or snake oil.

I tend to think the concept is legit. Really the question should be is stimulation of the bottom of the foot beneficial?

I don't think you need the surface, natural things will do, but getting them in a shoe would be near impossible. Would like to see a moldable/gluable version that can be used with like the ubiquitous Masterfit type footbeds.
The engineered surface is consistent. I tend to think the matt for doing excercises could be quite good.
Is it better than sisal matts, tatami matts? Don't know, but it's more consistent a texture and not that expensive.

I know David McPhail of Skier's Manifesto is using the insoles. That's where I learned about it.

 

[RuleMiHa]

I have at minimum a sensory processing disorder vs. mild Aspergers and actually have been using the Noboso insoles, balance board exercises, cerebellar training exercises, and balance training to improve my skiing and the quality of my life.

I find the insoles help ground me (I don’t know how else to explain it) in everyday life and improve my movement patterns and decrease my clumsiness. I actually think they might be helpful for skiing but have never tried them for that.

I also found that the type of teaching that works best has only objective observable criteria for movements instead of feeling criteria. I.e. Move your in this type of motion until you see it do x.

 

[newlyn]

I have at minimum a sensory processing disorder vs. mild Aspergers and actually have been using the Noboso insoles, balance board exercises, cerebellar training exercises, and balance training to improve my skiing and the quality of my life.

I find the insoles help ground me (I don’t know how else to explain it) in everyday life and improve my movement patterns and decrease my clumsiness. I actually think they might be helpful for skiing but have never tried them for that.

I also found that the type of teaching that works best has only objective observable criteria for movements instead of feeling criteria. I.e. Move your in this type of motion until you see it do x.

Ok, sold on the insoles. Which style, neuro or 1.0?

 

[zircon]

No apologies necessary - this is super helpful!

My son is very verbal/social and intelligent -- his most obvious challenges are sensory and motor planning/coordination -- but I think you are correct that it is hard for others to understand how he perceives things.

The adaptive lessons are widely varied. We found him a very good instructor at Blue Mt in the Poconos, where he made the most progress. There, the "adaptive" lesson is basically just a private lesson with one of their private instructors who has some specialized knowledge/skill. But we also like to take trips to various VT mountains, so there isn't a lot of consistency. (We had a terrible experience with the adaptive program at Mt Snow, which I won't get into here. It almost ruined skiing completely for my son.)

We are working on stretching with him over the summer, but I like your idea of throwing in some balancing too.

Thanks again.

Your son sounds like a cool kid. I was kind of similar in that I was fairly socially capable, but with sensory processing issues (and learning difficulties that no one noticed until high school when I could no longer get by on being smart alone). Glad to hear you have a great adaptive program near you! I have relatives that volunteer for the adaptive program at the NH mountain I frequent and, while I love them dearly, they are not equipped to deal with developmental disabilities and they seem to be a typical example of the adaptive instruction there A possibility at VT mountains may be to ask for a regular private with a level 3 instructor. I've generally had better luck with their adaptability. Alternately, fixing the boots may help with the stopping, then he can have fun in VT and learn back home. I keep getting a pass for a mountain I've outgrown to continue working with a specific level 3 whose style works really well.

Can he maybe learn to hockey stop instead of snow plow? I remember that being an easier movement to learn because both feet go in the same direction. Better balance depends a lot on hip strength, particularly for those of us that don't really use the whole foot. I really like running coach Jay Johnson's Myrtl Routine which is quick and most importantly fairly easy to coordinate:
http://www.njsportsmed.com/files/myrtl_routine.pdf
https://www.self.com/gallery/myrtl-bodyweight-workout-for-runners

Do keep us updated on how he progresses.

Wonder if the Naboso stimulating insoles/surfaces would help a little. It's pretty new.

https://nabosotechnology.com/neuro-rehabilitation

Those look interesting. Hard to tell if it'd be positive or negative sensory feedback for any one individual on the autism spectrum, though, depending on individual sensory issues. Might have to experiment.

 

[RuleMiHa]

Ok, sold on the insoles. Which style, neuro or 1.0?

Definitely the mildest and start with socks. It’s a weird feeling.

 

[Uncle-A]

One suggestion I would make is to get some physical therapy to work on the foot and ankle issue. That should help with the boot fitting and the skiing.

 

[ted]

Billy Kaplan is crazy good.

As fellow Cped, (more in the orthopedic side, do work very part time bootfiitting) I've visited him.

I don't think I've ever met another boot fitter with a sewing machine for liner mods. Billy has four, each with a different design for different tasks.

 

[surfsnowgirl]

Good luck with the boot fitting. If you ever make it to southern Vermont. I teach at Bromley and we have an excellent adaptive program. I don't work in the BART group but we have a fabulous group of instructors.

https://www.bromley.com/winter/adult-lessons/adaptive/

https://www.bartadaptive.org/

 

[ted]

One suggestion I would make is to get some physical therapy to work on the foot and ankle issue. That should help with the boot fitting and the skiing.

Second this, almost every patient I see with a foot problem has limited ankle dorsiflexion.

"The achilles always wins" is one of my favorite quotes. As the strongest tendon in the body, if it's tight it basically rips the foot apart.

 

[Corgski]

Toe walking can be insidious. It does not take much of a disability for a kid to start walking on their toes, but once they start the resulting loss of range of motion can cause more of a disability than the original problem. One of my sons (also 13) has mild CP which includes spasticity in his left leg and forces him up on his toes. He has also had sensory issues but they seem to be improving significantly with time. The CP is not particularly severe, when his range of motion was at its best he could disguise it but when he loses range of motion he ends up walking with quite an obvious spastic gait. It can be quite a job getting the range of motion back, even while sleeping his brain is trying to flex the ankle.

I am wary of suggesting what treatment options you should pursue, after all you may already have pursued them and the medical issues are different anyway. I can say that for kids with CP the range motion issue tends to get treated quite aggressively, we have been able to maintain/recover sufficient range of motion that he can use a normal ski boot without any lift. One is continuously fighting the foot's tendency to regress so while it often seems that any one attempt may not have been a long term success, without the various interventions over the years I doubt he would have been even close to putting his foot flat. So far we have avoided surgery to lengthen the Achilles but we would not rule it out if convinced it would help. So just in case this has not been suggested by doctors you have seen, I do want to say that a lot can be done to address limited range of motion.

For the ski boot, I would not let this be a DIY project. Feet stop growing early and at 13 can be very close to adult size, so it is possible that whatever you go for could last for quite a while. It is also not necessarily a big deal to expand a boot a modest amount to accommodate some growth.