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Sunday, January 28, 2018

Happy 2018 and Ellie is 15

Ellie practicing her sitting at PT
Hi Everyone,

It's been awhile. Where to start...Ellie is doing great. She's healthy, happy, and very 15. She got Taylor Swift's new album "Reputation" for Christmas and has been listening to that and dissecting the songs she likes best. She seems to really study them. Whenever she loves a song she will get on her computer and find it on YouTube, slow it down to .5 speed and play parts over and over until she has them. Then she looks up the lyrics and those online tutorials about how to play it on the piano. These look a little bit like guitar hero which she also slows down and studies.  She goes deep! In other news she is making progress with her electronic wheelchair which will come home with her this summer. She also got a new voice that is iPad based with a key guard and it's much, MUCH better than the Dynovox. It's many pounds lighter, the battery lasts hours and hours more and it's easier to use. She continues to make progress using it sometimes to our chagrin when recently when she said good by to a new carer we were interviewing and I quote, when she was asked to say goodbye she said, "I don't care. Goodbye!"  So much for manners but also, I think I am going to switch to saying, Ellie, so and so is leaving. Versus asking her to say hello and good bye like she's a little kid. I have to change too and start treating her like she is 15. To her credit, it's hard on her when there is a change on her team. As it turns out this person was not the right fit so we probably should have listened to Ellie on that one.

Her hips are doing well. She still does not sit criss cross anymore. I haven't tried to push her on that. She lost some range to be sure on her right hip. However, her hips are not pulling out of their sockets anymore. Trade offs. Her feet are also staying relatively straight although one side is slowly starting to turn again despite the surgery. That is the bummer of CP. Still, I am glad we did those surgeries.  Our biggest issue now is trying to keep her spine from twisting. We are careful to watch her TLSO/body jacket to make sure it's doing it's job. But, again, a trade off. Like the women who used to wear corsets - the price of that spinal support is weak back muscles that then offer limited support to her spine.  We are working with her to build back strength by doing tummy time and having her push up into cobra when she does this. She is getting stronger but I don't think we are doing enough. She's a happy kid for the most part though. She is very keen to watch the weather for possible snow days where she gets to stay home and dance, dance, dance.

She's still a sweetie pie. I think she has reached her final size as well. She didn't make it to five feet but she can wear xs small at the gap so she will not have to be in children's clothes forever once she is an adult.

Kids like Ellie are living longer. The world has not adjusted to that fact yet. I am working on a plan to create a school for her for when she is 22 and can't go to school anymore. I have been told I can't call it a "school" because "school" is only for the under 22 set. But it's still going to be a school.  Why shouldn't Ellie and kids like her who have spent countless hours in hospital and in bed recovering, who have missed a lot of school, keep learning after they are 22?  I get that public funds are not the same but there are funds that already go to supporting people with severe disabilities in some states. Ours is one of them. However the bar for learning in these state centers seems low for the most part. I believe the lack of emphasis and urgency on the need for continued development of kids/soon to be adults like Ellie is rooted in and antiquated understanding of the brain. When Ellie was born in 2002 the doctors told us that whatever she achieved by age 5 was it, because the brain stopped developing at that point. This very wide spread understanding of the brain as been proven wrong by science over and over but our society has not caught up in terms of structures and supports for our children who will live to adulthood with cerebral palsy.  Ellie's brain, like mine and yours, is capable of learning and developing for her whole life. I want her to have a place to go where she still gets to learn science, history, art, math, literacy, art, music, etc. Where there are expectations of her to do so. I can't stand the thought of her at one of those centers where it's really glorified  baby sitting with "activities" that have no real plan other then keeping the clients busy for the day. The thought of that makes me sad and I have visited a few of them and they made me feel very sad at the idea of Ellie being in them. I want Ellie to keep learning and growing. I want to keep bringing the world to her which has been our philosophy all along. There has to be a way to do that.

Ellie with "Drop Mix" making mashups Christmas day 2017
To that end I want to start a school for 22 somethings like Ellie.  It will be a day program with a trained teaching staff as well as specialists. That's the other thing that is a bummer about school ending at 22. Currently Ellie gets occupational, physical and speech/communication therapy, right at school. At 22 that's done. We will have to find a way to get her to these specialists and keep our jobs at the same time. Ellie is still going to need all those services which will still be of great benefit to her. You can see the problem right?  Anyway it's a daunting task to be sure. I have the building to house the school and now have to go through the process of converting it, getting it up to code (after I figure out the codes), get approval for it, see if there are grants or funds I can apply for to help run it ongoing.  Decide to either be a non profit or an "enriched day program" that can receive state and federal funds. One of the special ed teachers i consulted with said the space could fit fifteen young adults with CP, wheelchair users. This does not solve the problem nationwide but I do hope to create a new model of care that may be scalable to other states.  There are probably other societies that take all I say here for granted, Of course! We do this already!, I can hear them say. Fact is, it doesn't work this way here or anywhere in the US. Just a few things to figure out... For me, and I have written about this before, it's about keeping Ellie safe, happy, always learning and respected. I worry about what will happen to her once I am gone. If I can build this, that will be where she can go and have a community around her. That is my goal. It will benefit her peers in the same boat. It's overwhelming to think about but I have 6 years to do it.

I haven't written much because I am struggling between work/life balance and have an injury to my hip that is not resolved. I am not sleeping well from being in pain all the time. I hope to resolve that too in the coming months. 2018 is a year about getting back in balance and finding time to do more than just work.  That may sound counter to the work at hand I outlined above, and maybe it is, but there has to be a way. It may just have to go a little more slowly than I am used to. It's funny how all the skills I learned in my twenties (exercise, nutrition, mindfulness, creating spaces that feel good and support healthy creativity, etc.) are all so important now but due to lack of time are much more difficult to implement. Change starts in small steps and innovation comes from a million subversive acts - meaning shaking up the status quo. I find myself at such a juncture where something's got to change to make this journey more sustainable. I will keep you posted. To the lovely person "anonymous" who wrote recently, thanks for your kind thoughts. I hope all of you out there with similar challenges are finding some ease in 2018.