I listen to a lot of music because it provides comfort during times when I am at loss for words. Anytime I start writing about Elisabeth's transition, I am at a loss for words because I feel so much sorrow. I experience sorrow because I know she is losing a valuable connection to her school community. So I am listening to music from a time I was a teenager transitioning into an unknown adulthood. There were choices I made back then that empowered me to be the person I am today.
As my own daughter of 21 years is making her own transition into community life, I wonder what she is drawing upon to bridge into adulthood. Does she realize what's happening? Or is she like most people who take it one day at a time without realizing they're on a pathway through time?
Elisabeth is non-verbal but she is very expressive using sounds, facial cues, and body language bouncing between happy when things are going great and discomfort when things are not so. She is perfect in every way except that she is unable to determine the outcome of her life. She cannot self-determine her life without someone being there, by her side, to make it happen beginning with getting out of bed.
She is also transitioning into community life thanks to the rescue efforts of Hamilton County Developmental Disabilities Services. Up until December, we were without a clue until an announcement was made by one of her transition advocates that funding was available to help her bridge into the community.
The challenge for all of us is defining for her what her community life will look like after she leaves her school community since she cannot determine this on her own. She loves familiarity and closed spaces. She loves navigating through the halls in her school in her gait trainer using the narrow hallways to form a direct pathway into which she must pass through. She loves the echo of basketballs bouncing on wooden floors. She loves ice cream, polished nails, new hair cuts, and sharing her life with anyone pushing her wheelchair.
She has always responded with a determination and purpose at Bobbie B. Fairfax School where her environment was designed for her developing abilities and creating her own milestones. She has developed an ability to do things in this school because it was an environment that allowed her abilities to develop at her own pace. It was a school that understood milestones for one student is going to look very different for another. There were people who challenged her to do what most people take for granted. In just 63 days, that pathway through the hallways and her life for the last 21 years will be a memory.
Looking for a similar environment is very difficult. The hallways, the sounds, and the creative, compassionate, and dedicated people who were part of her progress cannot be duplicated.
Or can it?
With everything changing in the next 63 days, it's hard to imagine how we're going to "reproduce" the same environment to continue getting the desired responses from her. We've had little taste of what happens when things change too quickly for Elisabeth. For example, we noticed dramatic changes in Elisabeth during summer vacations becoming agitated and frustrated because her routine had changed from the school year. So we stayed busy doing things everyday to keep her happy and responsive.
It's hard to imagine what will be going on in Elisabeth's mind when she realizes she's not going back in September which is why transitions are so important for this population of adults wearing a one-size-DOES-NOT-fit all disability label.
Today, I met one of Elisabeth's former pals from school who made that transition a few years ago. She is enrolled at an adult daycare that looks like a huge warehouse on the outside, but inside has spaces allowing interactions to take place between staff and clients. There was a familiarity shining in her eyes as I called out her name and recalled where I knew her from. As I called out the names of her friends and teachers and reported how everyone was doing, she reached out to me. She smiled.
Driving home, I tried to imagine how my daughter would fit in that open space, without any walls to guide her in gait trainer. I hope that as the specialized services change in Ohio, she'll continue experiencing the same confidence and independence in workshops, programs, and activities where she can respond directly. Workshops, programs, and activities that will give her a sense of purpose, dignity, and belonging to a community that values her special abilities.
I imagine that one day someone will recognize her somewhere out in the community and hopefully be blown away by her progress seeing the same determination and purpose in her responses for which she was known. Hopefully, they'll see a spirit that sparkles when her name is being called out for her attention. I hope she will respond in a way that is genuine and meaningful for her.
"I’m a-wonderin’ if she remembers me at all
Many times I’ve often prayed
In the darkness of my night
In the brightness of my day"