Tuesday, May 5, 2009

Toe Walking Continues.....

Here he is, my little ballet dancer. Yep, a few years ago he went to see the Nutcracker ballet and insisted on taking ballet. Why not? Others joked with us because MJ was always walking on his toes and so ballet dancing would probably be almost natural to him.

I stuck him in tap dance too, hoping that it would get him practice in putting his heels down, but he still has that awful habit of walking on his toes.

What do you do about this? If you've read our first post on toe walking, well, this was really what gave us the first clue that something was different with MJ. We've had so many various opinions and advice given to us on what should be done, but in the end, nothing has really changed.

We've been told he walks on his toes because it's a sensory issue with Sensory Integration Dysfunction.

We've been told it's because his heel cords are too tight and so they stretched and casted him for a summer.

We've been told to just do nothing and then when he was 6 maybe they would do surgery to cut his heel cords.

We once had him in physical therapy which wanted him to be in leg braces called DAFO'S. But that never happened.

All in all, it's not something he can't do---walk with his heels down. I mean he can if we sit here and tell him over and over and over again, but what kind of a crappy life is that?

Poor kid used to have to listen to it all day. It was like Hi, MJ, come play, PUT YOUR FEET DOWN, want some milk? PUT YOUR FEET DOWN! Get in the car, PUT YOUR FEET DOWN! And you would have to chant it all day long. I wouldn't do this. I didn't think it was right to have every word coming out of my mouth to my son as PUT YOUR FEET DOWN!!!

We used to have arguments with family members who couldn't handle this and wanted to spend the whole day pushing him down and yelling at him to put his feet down, but it wasn't worth it.

I mean, yeah, we worry just as much as anyone would that this is going to cause problems and hurt his bones or muscles or joints as he gets older, but what do you do?

I liked the idea to force him to walk normally, but the casting didn't work, and do I really want a kid with Asperger's who already has enough to worry about have to go around with leg braces too?

And even if I thought somehow he could be helped, he now knows when doctors are watching him walk that he walks down when they evaluate him, so then the doctors think I'm just a hyperchondriac over my son's symptoms.

So, what to do what to do? Bad habit? Something neurological? Something physical? What really is it, and will it cause him problems?

I know toe walking is something that has been connected to autism, and so is that just an added thing to his Asperger's? But don't we want to fix that?

Or do we? I mean, really, I don't care how he walks if it doesn't hurt him. I mean, I love MJ and so what if he is weird? He has many quirks, but that doesn't make him a bad person. I get angry at those people who are always trying to "fix" my kids' "issues". If it will cause him problems with his health or mentally, or whatever, then we will find a way to take care of it. As for now, it is the frustration still of wondering what IS right? What should we do if anything. We always ask and always bring it up to countless doctors, and so far they aren't so concerned, so we will let it be at that.

And, yeah, being a toe walker gives him those strong calves that the other little ballerinas seem to have a hard time being up and balancing, but our MJ does a great job!

5 comments:

Juliet said...

I think you know what is best. If it's not hurting him then who cares how he walks! That shouldn't give people the right to treat him differently or tell you that you aren't doing your job as a parent, only you and your husband can decide what is best for him.

Eleanor said...

Why worry about it? As he gets heavier, it will naturally be harder for him to walk on his toes.

When I was a kid, I walked on my toes, and it drove others nuts. Was I Asperger's? Possibly, but never diagnosed. Now my son is nine, and he walks on his toes. He might be Asberger's, but it isn't causing severe problems, so we aren't doing testing to attach that label to him.

Dana said...

I know this is an old blog but I'm hoping to find out if your son outgrew his toe walking or what happen? I found your blog while trying to find help for my 7 year old daughter. We have done PT, swimming PT, we have done leg braces too only for her to toe walk in them as well!!! I'm at a loss and the older she gets the more the people point it out. We suspect that our daughter has Aspergers, as her dad was recently diagnosed with the syndrome.

Becca said...

He is about to celebrate his 16th bday this week and I can tell you yes, he still toe walks although maybe not as badly. I notice it mostly when he has no shoes on. Sometimes when he is standing next to me I think he is so tall and then it is because he is up on his toes. I can tell you he still dances and nothing has ever come of it as far as any injuries or anything. There was a point when he was maybe 9 that we took him to a specialist and they basically said they could do a risky surgery to cut his tendon chords but honestly in the end it probably wouldn't stop him from getting back on his toes again so why risk it? The specialists said it would not cause him harm if he continued to walk on his toes his whole life. We decided the months of pain and rehab that it would take to rebuild those muscles were not worth it and so we let it be. He can walk with his feet down usually when wearing shoes stands flat on the ground so I don't worry. Yes, it is a little quirk and people will notice it and give you all sorts of advice but it doesn't really matter and if it is the biggest problem of being on the autistic spectrum, then you are lucky.

Becca said...

He is about to celebrate his 16th bday this week and I can tell you yes, he still toe walks although maybe not as badly. I notice it mostly when he has no shoes on. Sometimes when he is standing next to me I think he is so tall and then it is because he is up on his toes. I can tell you he still dances and nothing has ever come of it as far as any injuries or anything. There was a point when he was maybe 9 that we took him to a specialist and they basically said they could do a risky surgery to cut his tendon chords but honestly in the end it probably wouldn't stop him from getting back on his toes again so why risk it? The specialists said it would not cause him harm if he continued to walk on his toes his whole life. We decided the months of pain and rehab that it would take to rebuild those muscles were not worth it and so we let it be. He can walk with his feet down usually when wearing shoes stands flat on the ground so I don't worry. Yes, it is a little quirk and people will notice it and give you all sorts of advice but it doesn't really matter and if it is the biggest problem of being on the autistic spectrum, then you are lucky.