Friday, June 3, 2011

Sure Steps FUBAR

We went to pick up Anthony's Sure Steps yesterday.  He was measured for them 2 weeks ago.  When we got to the orthotist's (very creepy, windowless) office, he told us that the Sure Steps were too small-- the person who did the measuring apparently did it wrong.  According to the orthotist, "We do our best, but we're not perfect."  So he had to measure Anthony's feet and ankles again.  They have very high-tech equipment for this (a tape measure).  Anthony cried the whole time this was going on, while the orthotist assured us he has been working with children for 8 years and "I'm not doing anything to hurt him."  His method of establishing rapport with kids seemed to consist entirely of saying "What's wrong Buddy?" over and over with no inflection in his voice, while not making eye contact.  His response to any questions or concerns we had was to say in a very soft voice, "What would you like me to do?"  It was obvious that he had learned this technique in a workshop on How to Deal with Difficult Clients.

This whole experience was so frustrating.  We feel like we've lost what little confidence we had that the people recommending these orthotics know what they're doing.  They are recommended when kids pronate their ankles, but the guy yesterday said Anthony didn't pronate.  His physical therapist says he does pronate, even though in April she said his pronation wasn't too bad.  It all seems so subjective. 

Anthony's going to walk eventually.  It's not surprising that he's not walking yet- he has low muscle tone.  All of his gross motor skills have taken longer than usual (sitting, crawling, kneeling, etc) but eventually he gets there.  The whole idea of all this therapy, Early Intervention, and now these orthotics is unsettling to me.  Aren't we medicalizing something that's completely normal (for him) but just different?

Paul and I were joking the other day that if we lived in a world where everyone had Down syndrome, we'd be considered very stiff and inflexible:  "You can't put your legs behind your head without bending your knees?!  What's wrong with you?"  Maybe we'd have to go to physical therapy to work on being able to do a full split while bending forward from the waist.  Anthony can do that, no problem- can you?

I think this video makes the point better than I could:


  1. well, that's just crappy, that whole experience. as one of the people that talked to you about orthotics and how we felt they helped archer, I feel terrible. you're right, anthony will totally walk, with or without sure steps -- and maybe just getting a better rep next time would make a difference. The guy who fitted archer was really good.

    either way, you guys are doing a great job with him (obviously) and are by far the best judges of what will and will not work.

  2. remind me if I move to PDX to get the name of that guy so we NEVER go there.
    My sympathies.

  3. I'm sure it will be fine once we get them. The first guy we saw (the one who did the measuring the first time) was very nice and seemed to know what he was doing. My theory is that he and orthotist #2 have some sort of feud going...maybe the Sure Steps really were the right size to begin with and the strange guy just said they were too small to get the other guy in trouble!