Thursday, August 25, 2011

12 Step Program

A few weeks ago I wrote about our family's dependence on Ben's Convaid Stroller and how my realization of this addiction made me change a few things in our lives. For one, Ben takes his second dose of seizure meds earlier in the day. I believe that the meds contribute to Ben's wildness and sleeplessness. This change seems to have worked. We have not seen many 1am and 3am's lately!

Next, I called Ben's new school to see how we can get Ben on the bus without going in the stroller. I want Ben to walk up the stairs, with assistance, and then once off the bus at school, go directly into his walker.  There are many "steps" that need to happen for this to actually happen, i.e. Ben has to get tested by a school physical therapist to see if he meets their guidelines. I am hopeful that even if he is not approved by the start of school, I will at least insist that he is met with the walker at school. I want the new school's staff to visualize Ben as a walker. In fact, I want everyone to see Ben this way. It changes the set of expectations people apply to him.

Then I emailed all Ben's therapists to let them know that kid gloves are to be taken off. For the past several months, I have told the therapists to take it easy with Ben while we play with seizure meds. I shared with them the goal to get him walking to the bus and they have all responded with plans to practice. PTs are working with Ben going up and down stairs while holding on to the railing. The OT is also working on the grab and release skill for holding onto the railing. We have talked in speech about following the commands for "step up", "step down", etc. I also think a video of someone going up and down the bus stairs would be helpful.

At home and when we are out and about, we are using the stroller in only extreme circumstances - it is midnight and Ben is still awake or for very long walks. Otherwise, he is on his own. I think Ben is sitting in a regular chair at the table more consistently for meals. We tell him dinner is on the table and if he is hungry, he crawls on over.

Finally, I asked the camp to follow suit with all these ideas. We left the stroller home each day and Ben used the walker at camp. This gave him more freedom and independence. On the final day, they had a party and awards ceremony. Ben received the "Watch Out, I'm Mobile!" Award.

We all set the bar higher and it seems that Ben is ready to meet and exceed it.

1 comment:

  1. This is very cool-- and courageous. Go Ben! (And I LOVE his hair in the second shot. What a gorgeous color!)


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