Because her life depends upon it...

Hi Everyone,

Ellie Prom 2018

Ellie turned 16 two weeks ago and I can hardly believe it. Because she is 16 we are thinking a lot about what they call in this country - transition.  For special needs parents it's really Transition - with a capital T.  It's when Ellie will go from "entitlement", meaning being entitled to services like school, to eligibility to programs - meaning no guarantees that she gets in. It also means minimal oversight or regulation in terms of quality.  Special needs adults are on their own. 

School for Ellie ends the day before her 22nd birthday.  Ellie's school and other agencies hold "Transition Fairs" to get you thinking about all of this. Right now, under entitlement, Ellie goes to school and during the day the school provides not only learning but physical, communication and occupational therapies. There are also after school programs that Ellie gets to attend. It's in a word: awesome - meaning truly awe inspiring in terms of what she receives from her school. She is really happy.  When she turns 22 - unless we figure something out - all of that stops. We are starting now. My goal is to create an enriched day program where Ellie and other 22 somethings with CP can keep learning from wherever they are at and keep having a supportive community around them.

I wrote about this last February and since then we started exploring other day programs too to understand what is out there even though the main plan is to create our own enriched day care. So far that exploration has been pretty dreary and the stories we have heard about other kids in terms of the later half of their life have also been pretty depressing. An example is our neighbor's daughter who lives in a group  home nearby. The parents took care of her at home until they were in their 70s and the mom got sick. She used to be able to get out of her wheelchair to go to the bathroom and she used to be very communicative in many ways. Since she moved in 5 years ago she has gained 40 pounds because of all the pasta and cheap food they feed her. She no longer can get out of her chair herself and there is a list of other things she no longer does.  This is my nightmare scenario for Ellie.  And you know what, it could be even worse. In 2009 a state facility in Florida got shut down because the staff were hurting patients and killed one by putting bleach in the guy's g-tube.  Abuse happens to the vulnerable. It's horrible but it does.  My question is, how do I protect her from things like that after I am gone?  It's a big scary overwhelming question I live with every day.  It's also a galvanizing source of motivation. And the 5 years until she is 22 are going to go quickly.  As we figure this out I will keep you posted. Hopefully I will have good news and be able to build something great for her and others. Right now part of the plan includes me working two jobs to be able to renovate the space.

Ellie at 16:

• She went to her first prom with her Dad in May of this year. She picked out the dress on her own and you can't deny she has style.
• She has a best buddy for the first time and they are both Swifties. 
• She is unplugged from iPad and devise / computer based play right now so that she can focus on her communication and widening her circle of friends. This is the hardest transition of all in that we have to change ourselves. We have to insist on her using her voice and we have to insist that she work hard to do that. As she is our only child the current way we have been parenting - where we pretty much do everything for her has proven to be a de-motivater for her to socialize much with others or go along with other plans or activities that are not her own. This is on us so now we are working to change it. That is what the transition fair taught us - that we need to get others engaged in helping/ connecting with Ellie in parts of her life if we wish her to have the best support network possible. We have to change to ensure that. We are not great at asking for help and that is why we typically do it all along with the helpers we hire.  It's on us to create conditions that motivate Ellie to connect with others - to care to do that. 
• Ellie is taking the bus home from school for the first time and it's going great. We live in a new school district and it's a safer set up. She is doing beautifully with it. 
• Ellie stayed overnight at a school camp for two nights and loved it. She came home and said the best thing was being away from her parents and that she wanted to do it for a week...as this is typical teenage sentiment - part of me is happy to see this reaction! ;-) We are working on figuring out sleep over camp for a week next summer. 
• She's doing beautifully with her power chair.

One of our main goals for Ellie not just this year but for a long time is for her to be able to communicate with others. Communicate her needs, her thoughts, her cares and connect with others. Her life literally depends upon having a say and being able to say. We cut out iPad and computer for the moment as she all she wanted was those devices no matter who was around. Not a great start on widening her circle of friends.  It's not stranger danger after all. It's being able to connect with others. How many people have come into your life at just the right time to give you that bit of help whether it be wisdom or a kind word or aid in some way?  That's less likely to happen with your face buried in an iPad. She did like the idea very much that her main job is to help those who help her because she's the boss. ;-)

She's Driving

Ellie is working on driving her electronic wheelchair. We hope to get to bring it home this summer! 

Stand Out Days

Hi. Back from my surgery - new hip installed. Very unhappy to find out the technology did not include iron man type capabilities or even Wifi, but then again my bar was set pretty low. It's been so long with that joint not functioning that my main goals were to be able to stand upright, walk without a limp, and not be in agonizing pain all the time. So far I have met goal one. Am working on healing and physical therapy to get to goals two and three.

I'm sitting here now with Dave, Ellie, and Nanny Bernie as they make a portfolio. It's part of a kit she got from her uncle. Ellie's attention is waning but Dave is gently keeping her in the game. In school they teach the kids about having their "brain in the group" and identifying which zone they are in and which emotional zone they need to get to, to have their brain in the group. I  love all of this. Adults need it too.

The folio is meant for a sketchbook but Ellie wants to put her newbies in it.  Watching them work together to make this is the most heartwarming thing and I feel grateful for these lovely souls who make up my family.

More pics later.

I hope you feel similar awe about those closest to you and if you don't now - I wish it for you in the future. I know what it feels like not to have that so maybe that's why I am so grateful now.   That's the thing about adversity. It kicks the entitlement right out of you and makes you appreciate what you have.

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.
xo
Kathryn