Sunday, November 24, 2013

Growing up: development and therapy

This time last year, James was in the hospital getting his ng tube inserted in an attempt to get his appetite and his body growing. He was 5 months old and not even 10 pounds... he's come a long ways since that "failure to thrive" diagnosis. He is 19.5 pounds now, and making great progress in development, with the help of the various therapists he sees each week.

A lot of people know about his therapy but I've never really explained what it entails. I'm going to describe below why James needs therapy, what his therapists do, and how he is progressing with it.

We've been frustrated with Early Intervention as an administrative program, and have experienced a few unhelpful and unprofessional therapists along the way, but the therapists can do a lot of good and we've finally settled on a group that we like. He has three types of therapy, twice a week each: physical, speech/feeding, and occupational. That last one sounds weird, and it's tough to describe: it actually encompasses the largest range of skills that are used in everyday life. Social skills, sensory tolerances, fine motor skills and hand coordination, understanding basic concepts like cause/effect - these fall under the umbrella of occupational therapy (OT).

Why does he need therapy? There are two reasons: 1. His hospitalizations and recovery periods were essentially pauses in his development. He wasn't progressing at those times, so overall he is developmentally younger than his actual age. The therapy helps him catch up, and 2. His permanently low oxygen means he's likely to learn more slowly. Fortunately though, it doesn't look like this is slowing him down much... or at least, the extra attention in therapy sessions is counteracting it.

What do the therapists do? I'll give a little overview of what infant/toddler therapy consists of and the types of things they do to help babies learn.

His physical therapist mostly does exercises with him to work on his muscle tone. She has him sit on a bouncy ball and stretch, to develop his back muscles and sense of balance. She has him do squats (leg tone), surf on a tilting board (leg tone and balance), reach for objects (arm tone), and step over a low pole (leg tone and balance). PT was great in helping him regain strength after his last surgery, and is helping him now to work on the muscles and the skills that he needs. His body has to work a bit harder to compensate for the low oxygen, so he needs to put in some focused effort to reach developmental goals.

His speech/feeding therapist is focusing mostly on speech these days. She is great about bringing him new toys to stimulate him and see how he learns best. She is teaching him to recognize sounds, mimic facial expressions, link sounds and objects, and respond to gestures. He's doing great in general, but still working on creating sounds and gestures of his own. We're not really worried: he definitely recognizes words, even if he doesn't say them. He knows: give, ball, come, baba, in, on, and circle, just to give a few. His ST brought him Mr. Potatohead to teach him body parts, and it turns out he loves fitting the parts in the potato. She got him into puzzles by bringing a talking puzzle that said the shape name when it put in each piece. She brought him Connect Four because he loves the little parts. Lots of toys that we wouldn't have thought to get, because they are too old for him, she has found that he loves. Putting little pieces IN and taking them OUT is one of his favorite things to do. We're moving into cars and racetracks now: watching a car race down a spiral track is a new favorite.

His OT is pretty recent. We've only started this past month, and he mostly cries to be with an unfamiliar person. He's getting used to the new therapist slowly though, and she got him fingerpainting this week. Sensory exploration is something he's been very slow to embrace, but little by little he's getting more tolerant about his environment. He likes the sandbox now, likes water and puts his hand under the faucet, is more willing to touch his food, and is starting to accept getting his hands dirty. Until very recently, sensory activities like fingerpainting resulted in James sitting in his chair, immobile, hands held out in the air, unwilling to do anything until his hands were clean. So, although it sounds natural, fingerpainting was actually a big advancement for him. He struggles with wrist rotation and finger movements (necessary to fit a puzzle piece that's oriented the wrong way, or to point to something he wants). He also struggles with cause/effect actions and games. These are what we'll work on in the coming months.

We're so happy with our little man, grateful that he's doing so amazingly well, and proud of how much he can do. We're also grateful though that he has access to therapy services, because we certainly wouldn't have known to do as much as these therapists have done to get him to where he is today.

2 comments:

  1. Thank you for offering us a window into the amazing evolution of James' life, day by day. His own steadfast resiliency, the care and love and expertise of so many remarkable people, including you. xo An inspiration for me to be present and grateful for every sight, touch, sound, taste, feeling that each day offers. Love you James and family!

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  2. Thank you so much for sharing all of this Kirsten... you and your husband are so amazing. I agree so much with Tricia, James is a true inspiration even for those of us who can't be there. xo

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