Tuesday, May 28, 2013


Change is good. Change is healthy. Change is how we grow.

 But change is also difficult, uncertain and scary.

Accomplishing change often means hitting some bumps in the road. That's part of the journey. Once past all the bumps the journey is complete and we have new found wisdom. Unfortunately that wisdom isn't available at the beginning of the bumpy road when we need it most.

The bumpy road is the place knows at "transition." We are in the process of changing from one place to another or one system to another or one thing to another. Transition is the process of change.

I like change. But I hate transition.

I am also starting to hate the WORD transition.  Maggie graduates from high school tomorrow and enters "transition." In special ed, transition is name of the period from the end of high school until school service end at age 22. There are all sorts of transition happening now. Some of it starts at 18 when one becomes a legal adult.  Maggie did start receiving social security shortly after her 18th birthday and we completed the conservatorship process as well. California Children's service ends at 21, so Maggie transitions out of that program as well. that will effect a lot of services which we will have to reinvent.  In addition, there is the transition from pediatric to adult medical care, which doesn't have any hard and fast rules.

The term transition suggest there is something at the other end of the road, but in the world of the disabled, that is not always true. Maggie and her peers are being transitioned OUT of these services, but there is very little on the other end. Being a disabled adult is very very different than being a disabled child. There are less services, less protection, less sympathy, and more every man for himself.  

Of course there are doctors who will treat Maggie and I m hopeful that some of her pediatric providers continue for several years. I have said before that the medical world is simply not prepared for an adult Maggie because there is little of no precedent. There was simply no need for medical care because people did not survive this long. The Maggie's of even the most recent past the did not have the opportunities at survival that my daughter has had. It's wonderful that she is here and thriving, but it's scary to be a pioneer.

There are also programs for adult disabled individuals, but I am uncertain about the availability of services for the level of medical intervention that Maggie needs. So many times we have found out that services for the disabled do not consider one quite as disabled as Maggie.

So we start on this bumpy road and wonder where it leads and what wisdom we will garner on our road. There will likely be frequent rest stops on the road and undoubtedly there will be wrong turns. But we have no choice. The only way is forward along the bumpy road of transition. (Better than perdition, I suppose)

 Fasten everything loose and hold on.... Because here we go



1 comment:

  1. I can imagine how difficult it is to be a "pioneer" of sorts -- and that is certainly what you and Maggie and the rest of your family are -- I am behind you in my own covered wagon, hoping to make over the Donner pass.


Hi Maggie loves your comments. It may take a while for the comment to post, but you will see it eventually.