After my last post Ellie had another surgery or two. The total was 6 and the last one in April of 2023. I'm so grateful she survived. Her new shunt is working so far. It took us a good year to recover from that 6 months of hell and the 6 brain surgeries. It's the most difficult thing dancing with death when you have a child that may die before you do. We are not alone in this, I realize. It happens.
Since I last wrote Ellie graduated from her school the day before her 22nd birthday (by law). She was really sad about it. One day while she was still at school one of the staff there congratulated her on her soon to come graduation as she was driving her motorized wheelchair toward her bus at the end of the day with her favorite teacher. Ellie got very quiet and then cried the entire 45 minute bus ride home and then for another hour at home - a big sobbing watery cry. Nonstop. Heart breaking.
We were told by the state that there were no programs that could accommodate her so we were must do a 'self directed' program was our only option. This basically means- good luck - you are in the hinterlands now.
Since then we found an amazing tutor for Ellie to work with twice a week in what we call her "Life Long Learning Program". We have her going to the gym twice a week to work with a trainer to keep her moving. We got her a gait trainer to also help her build muscle and bone density. We set up a room that she named "Ellie's Office" where she does her life long learning work and her DJ and music mixing. We set this up so she has somewhere to go in the morning versus be in her bedroom all day long. The gym program she is in is the only one we found during the day other than Camp which she was able to get into for 4 weeks. That has been great and she even made a new friend. But we were only able to replace 4 hours of the 40 hours a week program she received while in school.
Since she's been home we've all been adjusting and creatively trying different things to give her a full life. We have always tried to bring the world to her because the world is not accessible to her as it would be to you and me. But like all adversity - she is growing through it. We are seeing her use her voice device more. She has discovered the library here in town and loves the common room where there are kids and hanging out where she can eat in what sort of duplicates her school cafeteria. We have not been able to find a vocational program. It's also very hard to find an adult doctor who will take her. Same for physical therapy. I called all the local places to get her PT and all said they do not work with Cerebral Palsy patients! (I still find that unbelievable. I think it was 10 years ago where all PT's were required to get a doctorate in it. But what does that degree cover if not one of the conditions that requires the most PT for longevity and health?) She has a one to one who is very good with her but she, nor we, can duplicate the richness of what she had at school where she received weekly therapies including PT, occupational and communication therapy as well as in school visits with her orthotist, dentist and optometrist. All of that gone along with all the friendships, teacher relationships, learning, and fun.
We knew this was coming so started a nonprofit to tackle these problems and bridge this huge divide. We are working on building a community for her and those like here with physical and intellectual disabilities. It's called an integrated work/life community and we are making good progress.
We absolutely have to do something to give her a better future. She may outlive us and that is what drives me. The fact that she may outlive us. Which would be great. BUT, in having toured group homes and day programs and finding all of them really lacking for someone like Ellie, we need to create something so that she is not put into situations where she will be at best neglected and at worst abused. The stats on the abuse of those with complex disabilities like Ellie are very high - devastating.
Dave and I are working at our jobs and building this community as volunteers 'on the side' though it's taking up a lot of my daily hours. It's what we are doing to keep her safe when we can't. That's the base level motivation. But the other higher level motivations are to create an environment where she can grow and thrive. Her vision statement for her life after school was to "Live with friends. Work with computers. Be a music producer and DJ."
She's 22 now. Very typical of most 22 year olds who do not want to spend the rest of their life living in isolation with their parents. Of course. She's tracking with her typical peers in this way.
It's an act of hope to keep on with this considering what is happening in our country. But what's the alternative? There is no cavalry coming to save the day. We make our life - we all do.
Because Ellie needs our constant care it forces us to stay present and active. One of the many, many gifts that come with this whole experience of parenting a child who has disabilities. The love we feel for her and her for us is a sustaining force.
So we daily perform acts of hope to scale what seems impossible considering the start up costs of what we are building. We are growing new muscles and skills as we embark on this next phase of our journey as a family. You can learn about what we are doing here:
www.highspiriteast.org 
Ellie at her first Tikki "Bar" happy to be out late after sitting through the Superman movie. Her favorite character was Superman's dog! ;-)
No comments:
Post a Comment