Saturday, March 7, 2009

Looking for the Light

There is a lot going right now. So, I am refocusing, regrouping, especially after having Esra's transition meeting for the public schools. She's going to stay at the college center until September when she'll move to the preschool program in our town. There were ten educators and therapists at that meeting. Thankfully, Sam was there and he kept the tone simple. Plus, he wasn't afraid to ask questions. That helped me but I was still intimidated easily. The meeting went well and all of our therapy goals were accepted but there is one item that wasn't received well. That is the concept of motorized mobility. We understand it, but no one else was excited about it. Its probably because we are so immersed in the care for Esra that its hard to communicate her needs. Or my needs for that matter.

The most appropriate chair for Esra, who is a non-walking toddler, is not available in the USA. It is made and sold only in the UK. We would have to go to Cambridge for a few weeks to have the device fitted and programmed for Esra. It also costs 16,000 pounds sterling. (Currently, $24,000 USD).

Overall, the educators and therapists associated with Esra are baffled why I would want to travel to England to get a power chair for my daughter. {sigh} For example, I had a very terse conversation with the director of Esra's school yesterday. She is adamantly opposed to Esra's use of powered mobility in the educational setting. I wanted to go crawl under a rock after talking to her. I tried to talk to her about the cognitive components that Esra is missing by being stationary and dependent on others. She was unfazed by my argument. But the director does support home use and will help us secure funding based on our needs at home. So, I guess there is a light at the end of the tunnel.

Here is a link to an article giving some fascinating history on the family that brought about the SnapDragon, the chair model we are seeking out for our daughter. This article articulates what we all have experienced with Esra (extreme dependence), what Esra really needs (a device that helps her be independent and inspires curiosity and cognition) and what we are working to get Esra right now (an elevating power wheelchair).

1 comment:

Twinlinebackers said...

Is Esra not able to use her walker any more? Or does it not provide enough mobility for her?