our kid's on the move!

i wanted to share something a little different today.  i'm going to plug a local "business" after a phenomenal experience benjamin and i had on monday.

a few months back, ben started physical therapy.  it's amazing what a little bit of misalignment can do.  ben, as a result of his metabolic condition ("X-linked hypophosphatemia), has bowed legs.  his bowing is pretty much localized to his ankles but he has adapted a variety of ways that he tries to correct for this relative instability.  we hoped that physical therapy would be a way to help him stretch and strengthen ~ and to, with time, help correct some of these bad habits.  with time and the medicine he takes, his bones will straighten and we wanted to supplement that with physical therapy.

we started out at standard UF based clinic.  the therapist was nice enough but visit after visit, would spend nearly the entirety of the session commenting on just how rare ben's condition was and how she had never med a child with the same problem.  she identified a couple of fairly obvious issues for us to work on with some home exercises but beyond that, with all due respect, really wasn't that helpful. as i said, all of the attention was paid on this rare condition that he has rather than trying to dissect apart the small physical issues that we can actually address in therapy.  we grew frustrated with time ~ i got sick of hearing how rare his condition is (i know.) and even more sick of hearing how she didn't know how to help him (then why are we here?).  we let PT slide as it soon became something pretty useless in our mission to help our son.

a few weeks ago, two separate people who are very dear to my heart (my brother Andrew who is finishing PT school here at UF and my best friend Elisa who is also a PT by trade and recently got her Ph.D. in Rehab Science) mentioned the name of a woman, Claudia Senesac.  Dr. Senesac is an impressively trained pediatric physical therapist who, among the lengthy myriad of accolades on her CV, is well known for running a local program called "Kids on the Move".  they suggested i contacted her with the idea that she might be able to think outside the box a little with ben.

in a very rare moment of using the "doctor card", i emailed her explaining who i was and the situation we were in.  i asked if she would be willing to see ben and give us her thoughts.  less than a week later we had our first appointment at KOTM.  housed in an old early 1900s home in NW Gainesville, this was so different than the sterile clinical environment of our previous PT appointments.  as we entered the renovated space from the back, i was struck by the authenticity of the space.  to the right as you enter the small quaint house, is a great room, decorated in a beautiful jungle mural with all of the toys, contraptions, and therapy equipment encorporated into the design.  windows fill the walls and natural light bathes the entire space.

ben took to "ms. claudia" right away.  she addressed him rather than focusing on me which had irritated me with our previoustherapist.  they quickly bonded and it was clear that she has spent a lifetime working with children.  that first visit she watched him very intently, offering him toys in what seemed like simple playtime but in actuality was a very astute study of his entire body and its alignment.  we undressed him to his pull-up and she picked him apart from his head to his toes.  the things she picked up on in that visit blew me away.  she quickly commented on his tight hip flexors and poor core strength, the things that the other therapist had focused on for weeks, as if they were minor in comparison to all the other little opportunities we had to help make improvements.

this week, ben and i returned to "claudias house".  he excitedly ran up the ramp towards the entrance and barreled inside asking "is it my turn?".  ms. claudia greeted us and we quickly got to work.  what happened in that 45 minute session is something i would not believe if i hadn't watched it happen.  she offered ben a shallow bin of small toys and with my permission began to stretch him.  a massage with purpose! with the toys as a distraction she spent nearly an hour working on his rolled ankles, strongly caressing his alignment back into place.  she worked on ligaments and muscles in his legs and hips.  we distracted him with toys and conversation and she would occasionally catch my glance with wide eyes and mouth to me, "martina, he is AMAZING".  he didn't fight once and at one point, he even laid back....put his head in my lap and smiled. he was enjoying it!

claudia later told me that she worked on him very aggressively and that she was absolutely astounded by his ability to sit still and let her do all that she had done.  i took this to mean that it's doing him good....all that stretching and re-aligning probably feels so good to him.  when he stood up from our session that day, his legs were NOTICEABLY straighter and his gait had changed entirely.  for those of you who don't understand what PT is all about....i can tell you i watched it's value unfold before my eyes.  he didn't waddle out of "claudias house" that day....he walked more comfortably and with a straightness he has not known before.

meeting this woman and hooking up with KOTM has been a godsend in our house.  KOTM is well known in the community for working with children with autism and other developmental delay. ben doesn't have autism so i can't speak to the specific therapies that they offer but i can say that i have heard amazing things.  and after the brief experience we have had with dr. senesac, i imagine that they are all true.

here's to keeping our kid on the move....judging by our complete inability to keep him still for family valentine's photos last weekend....i think we are totally on the right track!