Tuesday, March 24, 2009

The Etsy Mini

My urge to create only grows when I cruise the creations of fellow Etsy-ites. There are some very talented people out there. The folks at Etsy tweeted about this fun widget above called an Etsy Mini. You can display either your own creations that are on your Etsy site or your favorite creations of others at Etsy. Since I am not quite there in the creation department, I'll stay happily in the appreciation department for a little bit longer.

Wednesday, March 18, 2009

Esra's New Tricycle

Esra braved the brisk, windy and snowy weather a few weeks ago to test ride her new hand-powered tricycle. It is a beautiful thing for Esra. Its silver frame and mountain bike tires will make for many fun outings. Esra was so excited to get in and take ride. It was really cold out though, so she was ready to go back in after only a few minutes.

We are so thankful to our gracious PT for coordinating the application process for this device. These custom cycles are a pretty penny and we are mindful of the funding provided by Save the Kid, a non-profit affiliated with the employees of the local nuclear power station. Thank you!




Appreciating the Future

This TED talk about the sixth sense device being created at the MIT Media Lab is utterly fascinating. Even if I feel totally compelled to ignore the siren call of the iPhone at the moment, I am intrigued by the premise that we can acquire a sixth sense through creatively organizing our technological pieces. Certainly, the future is now. But I don't want it to be. So, how do I think about starting seeds and being economical and earth-wise when this is such a big idea?

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).

Not an FB BFF

Even though I do not participate in Lent, the concept of abstaining from a vice for a prolonged period is intriguing. Why not permanently? I have decided to do that with Facebook, mostly and the internet and email, in general. If I had to tell the world my one vice, speeding wrecklessly on the internet super-highway would be it. Not smoking or drinking or recreational drugs but instead....hours and hours wasted on the computer. So, last week, Sam pulled the plug. Literally. Sam actually disconnects the modem and takes it to work with him, because I am so distracted by the computer. He has been so supportive and loving in helping me make a transition to a healthier frame of mind. It hasn't been hard to give up though, and I'm finding that I'm happier when I don't feel compelled to "check" email all the time.

Moreover, I ask myself, "what kind of person do I want to be when the power goes out?" Certainly, I'd be grumpy because I can't wash my clothes in a machine, and I've insisted that Sam get a generator to power the washer/dryer and fridge if and when the power does go out. I think I could be quite happy without the TV, telephone, computer, internet, microwave, etc. And I haven't had any misgivings for disabling my Facebook account a week before their policy changed even more peoples minds about the service.

Honestly, I've been thinking so concertedly about the help and hinderance of technology in our life and how I want to balance it. (And, I am less and less curious on whether an iPhone would really improve my life!) I remember reading a book review in the Wall Street Journal last year about some policy maker intertwined in the poverty struggles of America. The reviewer stated that sixty years ago, poverty wasn't defined by VCRS, dishwashers and microwave ovens. No one had them. The whole scale was different. Now, even lower income families in the US have those things. I want wealth...of time and experience, knowledge and interest. I can't say that now. I feel pretty empty. The distractions of the computer had to go, so I can work on filling my proverbial cup, again.