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Old 01-07-2010, 08:24 PM   #1
gandycat
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Toe Walking

Hi, since I've not done a formal introduction.....I'm Susan, mom to Ben (almost 10) and Emelia (almost 7). Ben is diagnosed with SPD only, nothing on the spectrum. But he has a lot of the same physical issues as a kid with autism including toe walking; body awareness issues; weakness in his trunk, arms and hands; gross and fine motor delays.... He's really doing very well despite these issues. He actually jump roped for 12 turns last week at PT, a huge improvement over a year ago. He has no behavior issues and thrives academically.

So, my question is about toe walking. He's done it since he started walking and it has never let up. He's gone thru lots of testing over the years by an OT, PT as well as a pediatric neurologist. Everything has come back normal. He has tight tendons b/c he toe walks, not the other way around. He toe walks to get sensory input (some kids do it b/c they don't like the feel of their heal on the ground). We've done AFO's in the past and he's also had serial casting. After the casting, he walked normally for about two months and then slowly he built up enough strength to go way up on is toes again. It's totally unconscious, he does it w/o thinking. When he's reminded, he goes right down to flat feet but then he's right back up on his toes. We could go back to AFO's again, they force him to walk on his flat feet but he *really* hates them. He has never really taken to them and honestly, they make him more clumsy than he already is (the shoes are two sizes bigger than his normal and he already wears a man's size 9). I should mention to that he is VERY tall for his age, he was 5'3" at his last check up (I'm 5'9" and dh is 6'1, the ped assures me he's just tall and there are no medical issues around it). I keep thinking that at some point he'll just be too big to toe walk, that his body weight will be too much to hold up. He's only 95 lbs now and pretty thin for his height.

I'm just wondering if anyone here has any experience with getting a kid to stop toe walking? I keep thinking that there must be *something* that I haven't come across yet to help. Thanks for any help you can give!
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1973~Aunt Doris' with parents and four brothers; 1977~Aunt Doris' with parents and three brothers; 1982~Aunt Doris' with parents and two brothers, SIL and nephew
1988~Can't remember the name of the hotel! With parents, brother, SIL and nephew; 1991~Hampton Inn with best friend; 1993~Best Western with future husband; 1994~CBR honeymoon; 2002~Rented house with mom and 2 year old; 2004~Embassy Suites, Lake Buena Vista with mom and 1.5 and 4.5 year old
2006~POFQ with dh and kids
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2010~January POLYwith dh and kids
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Old 01-08-2010, 05:14 AM   #2
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I do not have any direct experience with toe walking at that age, but with any variance from typical a NT profile I first ask a few question. Does it create any long-term physiological problems that are not reasonably easily managed? Is it in any way seriously psychologically damaging (balancing against all the damage from worrying about it and trying to “change it)? And first and foremost does it bother him to a significant extent?

I am not sure it is “unconscious” as you think, while he does not think about having to do it, he knows that the sensory response is helpful. If he perceived it as a major social issue, at his age he would (or in the future will) make decisions about using it selectively.

I know everyone has heard me say this before but SPV is part of what makes up the Autism genetic spectrum (actually appears to be about ¼, with social skills/TOM, EF, and an assortment of other characteristics making up the other quarters). While social skills/TOM and EF tend to go hand in hand, very often the other of the characteristic can be isolated or substantially unrelated. I wish the world would loose the perception of Autism and just understand that they are all just a bunch of evolutionary neurological variations (not necessarily either “good” or “bad”).

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Old 01-08-2010, 07:53 AM   #3
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Thank you for the reply. I'm sorry if I sounded like I think autism is a 'bad' thing. I didn't mention that Ben isn't diagnosed with it b/c of that, just so people would fully understand what his behaviors/issues are. I totally understand that SPD and autism overlap very frequently (and really I don't have an opinion of it being on the spectrum or not, but for the moment it isn't, that's all I was referring to). He's been evaluated more than once and he only has SPD symptoms. I wish SPD was officially on the spectrum b/c then he would be eligible for a whole lot of services here in PA that he isn't now!

To answer your questions....it causes long term physical difficulties that will need to be corrected. He doesn't just go up a little on his toes, he walks on the ball of his foot and his toes. It causes the tendons in his feet and ankles to shorten (needing serial casting or surgery), it also causes tightening of the tendons in the hamstring and back area. He is very aware of it and does not want to do it but we don't pressure him at all. We have a non verbal cue that reminds him to walk on flat feet and he is receptive to that. As far as long-term physiological problems, if he continues to toe walk forever it won't be like he can't function somewhat normally. But he'd need intervention that he deosn't want to have. He really does not want to have to go to PT forever and to do casting or AFO's or have surgery.

I do believe it is unconscious for him b/c of the conversations we've had with him. He talks about not being able to walk on his toes when he tries to but walking on his toes when he's not trying or doesn't notice. I believe it is a sensory message from his brain that he just does without thinking about it. He is very aware that it makes him lose his balance, etc. and he doesn't like that. Luckily he is a very likable kid who doesn't get teased. He has a great core group of friends that will also remind him to not walk on his toes and he actually appreciates it. They all saw his casts and braces and try to help him. He isn't bothered by that at all. It's something that he would like to stop but can't. He actually is pretty aware of his need for sensory input and has adapted to providing it for himself w/o us intervening (not always but a lot of the time, especially at school).

And no, I don't feel that there is stress related to 'changing' the behavior. Ben would like to walk on his flat feet, he obviously doesn't quite know how to do it so I'm looking for things we haven't thought of to help him. We totally embrace his unique qualities but that doesn't mean we won't help him in any way we can. I agree that SPD/autism are neurological variations but some of them make Ben's life harder than it would be w/o them and that's not always easy for him. I never make him feel like b/c he's 'different' that it's worse or bad. Our favorite saying is...'it's just how God made you'.

Thanks for the reply
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Susan
1973~Aunt Doris' with parents and four brothers; 1977~Aunt Doris' with parents and three brothers; 1982~Aunt Doris' with parents and two brothers, SIL and nephew
1988~Can't remember the name of the hotel! With parents, brother, SIL and nephew; 1991~Hampton Inn with best friend; 1993~Best Western with future husband; 1994~CBR honeymoon; 2002~Rented house with mom and 2 year old; 2004~Embassy Suites, Lake Buena Vista with mom and 1.5 and 4.5 year old
2006~POFQ with dh and kids
2008~PORS with dh and kids
2010~January POLYwith dh and kids
2012~March-POFQ
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Old 01-08-2010, 04:15 PM   #4
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I was not thinking that he was that well informed and self aware, that is great and makes the situation much easier. I would try (I know it is not instant or easy) to develop PT that he can do at home to provide stretching each day. The long term thing is to try to find a sensory substitute (again easier said than done) do not limit you “search to just propreceptive area, as often other areas will suffice. I would try to find out if there is any underlying areas of stress that he is not aware of or has not let you know about since very often the needed intensity and duration of the “sensory massage” can be greatly reduces if there is an opportunity to reduce any anxiety.

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Old 01-08-2010, 08:22 PM   #5
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He is actually ending PT in a couple weeks b/c the PT is out of things to work on with him (besides the toe walking). We already do stretches at home and I've asked her to make me a schedule of other things to do thru the week.

He's a pretty laid back kid, the only thing he ever identifies as stress is feeling shy. His teachers are always shocked to hear it though and say he is a very friendly kid and seems really at ease. I know when he was smaller, feeling anxious (like at family parties where he didn't know everyone and also was over stimulated) upped all of his sensory needs. In general I don't notice it as much now. But that's something I'll keep an eye on with him.

The PT threatened to put rocks in the toes of his shoes, lol. I keep wondering if there is something like shoe insert that might help to give him some sensory input.

Thanks for the ideas and for your perspective
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Susan
1973~Aunt Doris' with parents and four brothers; 1977~Aunt Doris' with parents and three brothers; 1982~Aunt Doris' with parents and two brothers, SIL and nephew
1988~Can't remember the name of the hotel! With parents, brother, SIL and nephew; 1991~Hampton Inn with best friend; 1993~Best Western with future husband; 1994~CBR honeymoon; 2002~Rented house with mom and 2 year old; 2004~Embassy Suites, Lake Buena Vista with mom and 1.5 and 4.5 year old
2006~POFQ with dh and kids
2008~PORS with dh and kids
2010~January POLYwith dh and kids
2012~March-POFQ
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Old 01-09-2010, 05:47 AM   #6
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Your son sounds like a great kid and an amazing self-adapter. As a self adapter myself, we appear “normal” but in all but the most familiar surroundings we still have to do a lot of additional work and it does often create some “background” anxiety (I was never aware that it was anything unusual during growing up). As I have become studied in NVs and worked with my son and other families I have improved my “adaptation skills” even at my age.

With the intelligence and self awareness of your son, I would recommend that he read some of the sensory books by the leading clinicians in the field, Sharon Heller comes to mind, although she is more focused on the sensory defensive end than that sensory seekers.

While I know he is nowhere near being Aspergers, it would likely help him a lot to read Tony Attwood’s “the complete guide to Aspergers” c/2007 available on Amazon for about $17. While it sounds like he only displays a few of the more sensory based characteristics, it may help him with some of the areas which he self adapted for and allow him to be more efficient in these areas and it does have a lot of practical information and perceptions about SPVs.

It sounds like you have done an amazing “job” of parenting him.

There are quite a few other sensory threads in this section and lots of other parents helping their children adapt for SPV so hopefully others will have some ideas and experiences also.

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Old 01-07-2013, 10:40 PM   #7
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I have been reading and learning a lot about toe-walkers. My adult step-son is a toe-walker. He has been diagnosed as being severely cognitively delayed, with ADD, and PDD. He has never received any treatments for his toe-walking. He is a big guy of 5'6" or so, and he's on the heavy side of normal weight. He's now complaing about sore knees and back. I hope to get him to try Physio and maybe get an orthodic made for him. We're going to Disneyland for our first, and maybe only, family trip this summer. I'm worried that he'll be too sore after our first day to enjoy an entire week.
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Old 01-10-2013, 02:57 PM   #8
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I developed toe walking after a surgery that caused some nerve damage. Have they done a nerve conductivity study? The nerve damage has also caused the feet to turn inward and the toes to drag (quite a site, toe walking with dragging toes while turned in). I now have braces from hips to toes to correct this. They work fine when wearing them, but the nerve damage also makes wearing shoes and socks and the braces difficult to wear for long periods of time.
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Old 01-10-2013, 05:36 PM   #9
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No. I am pretty sure nothing has ever been tested in the past. He has always toe-walked, and I don't believe anyone ever noticed or thought it was an issue (he has so many that they may have let this one slip). I'm concerned that he's not going to be able to continue walking this way now that he is older, taller, heavier, and having to get into the workforce. Now that he's in a work experience position in a store 3 days a week, for 4 hours on each day, he's complaining about his knees cracking, a sore lower back, and sore legs.
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Old 01-15-2013, 09:47 AM   #10
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I don't know if your son may be to old to try this, but when my daughter was younger and was toe walking we used a sock like device with a squeaker in the heel (sorry. Can't remember the name) we told her that every step she took should squeak it became a game of sorts. Daughter has ASD/SPD she loved the squeaky noice and over time it seemed to work, she rarely walks on her toes now. With the physio and the squeakers we were lucky she didn't need any surg or injections. Her O.T. Who she works with now for her SPD has noticed the her calf muscles and hamstrings are still quite tight but we are working on those.
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Old 01-18-2013, 04:49 PM   #11
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Thanks for the idea. I'm not sure he'd appreciate a squeaking shoe, but I will see about putting the idea in his head. Maybe, with a custom orthodic, and some good shoes, he could learn to take a normal stride from heel to toe. He's willing to try, but he will need time and help.
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