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Sunday, November 25, 2018

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 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. ;-)