07/21/98

Striving for Independence..

Q: Our daughter Sylvia was born with Cerebral Palsy. Although cognitively above average, she is confined to a motorized wheelchair, produces muffled speech and requires a full-time aide at school to help her with note- and test-taking, conversing with others, eating and other daily living skills. Aides have been her lifeline at school; and the computer is her lifeline at home. She composes all her assignments and emails her friends from the workstation in her bedroom.
This fall Sylvia enters the 8th grade and has asked us to let her attend school without an aide (except to attend to her physical needs). The constant presence of the aide inhibits her friendships, she says, and therefore isolates her socially.
We sympathize with her need for privacy and freer social contact but feel obliged to oppose her request because of the pressure it would put on teachers and friends to take up the slack caused by the absence of an aide. What are your thoughts on this?

A: Children naturally strive for independence regardless of age or circumstances. I admire your daughter Sylvia's spunk and determination.

Out of respect for her wishes, I suggest that you convene a PPT (Planning and Placement Team) meeting as early in the school year as possible and invite her 8th grade teachers, the designated aide, all relevant special education personnel, the school principal and Sylvia herself. She must be a participant in the discussion of methods to increase her self-reliance and decrease her dependence on the aide. Set the agenda in advance of the meeting so that everyone present can bring suggestions to the table. Here are a few of mine:

- The aide could follow Sylvia's class schedule, but be a support person to other students in each class as well -- to be available when needed, but not always by her side.

- Tape record teacher lectures, so Sylvia can listen to them later. This will reduce note-taking requirements and dependence on the aide for notes.

- Discuss assistive technologies that could help with verbal communication (a voice synthesizer?) and organization of workload (a laptop or palm pilot?)

- Lunchtime is a key social event. Brainstorm ways for Sylvia to sit with her friends in the cafeteria (without the aide), even if it means that she actually eats (with the aide's assistance) before or after the regular lunch hour.

- Identify one or two class periods a week when Sylvia and the aide are alone together, to review assignments, clarify academic material and map out strategies for Sylvia to prepare for tests or complete complex assignments. Some of their interaction could also occur via email, since Sylvia is already accustomed to computer correspondence.

Sylvia's participation in the problem-solving process will put her in the driver's seat in more ways than one!

Please send questions or comments to bbruno@snet.net.