~ William Shakespeare
My husband wrote the following as a preface to a ‘Vision of the Future’ plan we developed for Joe seventeen years ago. The effort was initiated by Joe’s Special Education teacher at the time, Joy Nichols Garand (God bless her!):
“This document is intended to be a living document which may change as Joey gets older or life situations change. At the time it was prepared Joey was eight years old. It represents a snapshot summary of how his parents would like to see his life and his surrounding environment develop. Therefore this represents a set of goals for which everyone associated with Joey, and even he himself, must strive to accomplish. By so doing, we will support a very deserving person in reaching his full potential and allow him to be happy in his life. . .”
In a portion of this document, we listed our dreams for Joe. Many of those dreams revolved around his living, as independently as possible, in a happy supportive environment. And we wanted him to be able to go places and do the things he enjoys. Additionally, there were five key ideas that cut to the heart of what we felt was of utmost importance to Joe’s future life:
- We wanted him to “have true friends. Friends to just hang out with.”
- We hoped that he would “find someone to marry. Maybe have a family”
- We expected for him to “be employed in the community.” And that that employment would be “Meaningful. Enjoys it. Adds to his life.”
- With true earnest we dreamed that he “Be fully accepted and appreciated in his community. Feel he is important, loved and that he belongs.”
- Bottom line, we wanted him to live a “Normal life with as few supports as possible”.
That was long back, when we were young on this journey that includes disability. Along the way we have clung to these dreams, sometimes making compromises, sometimes experiencing triumphs, sometimes defiant, sometimes beaten down, many times hanging on by a thread. But all along, we have always refused to give up on the dream of building a life for Joe that is as close to normal as possible.
Skip forward about thirteen years: . . .To the period in our life when we started Joe’s ‘transition’ to adulthood. Joe graduated high school in 2007 with the same classmates that he had gone thru school with, all the way from Kindergarden. He officially left high school two years later at the age of 21 ½, when he had ‘aged out’ of the public school system. As with most high school graduates, there were some life decisions to be made. When he left high school we were told that there were basically two types of options for Joe. We could ‘place’ him in any number of ‘Work Programs’ and/or ‘Day Programs’.
The Work Programs that existed were either Workshops or ‘Enclave’ work group programs. The Workshops are a lot like regular factories except that all the workers have disabilities and the facility is a separate facility just for those who have disabilities. Enclave work groups are groups of people, all of whom have disabilities, who are closely supervised as a group – usually in some type of community setting. I have several concerns with both the workshops and the enclave work groups (which I won’t go into at the moment). The biggest concern I had at the time was that Joe HATES to clean, assemble, sort, package, etc. and would require constant redirection to ‘stay on task’ in either setting. He would not be productive. Most importantly, he would be miserable in this type of work.
When we investigated the Day Programs, we found programs that taught life skills, worked on social skills, spent time on crafts or maybe gardening, held exercise sessions, entertained, and had ‘outings’. These Day Programs were solely for people with disabilities with very few opportunities for real community involvement other than group outings where an occasional interaction with an ordinary citizen would occur. In other words not too different from the high school program he had been in for the last 4 years. He would be busy. He would be entertained. He may gain new skills. He would get exercise. He would have fun. He would probably even really like it.
But is that a life?
I remember being so distraught. What did that kind of life mean for Joe? I laid awake at night, tears flowing, mourning the normal life that Joe must give up. He loves people! He thrives in community! He has been raised all his life in the normal, everyday life that we, his family live! Now he must spend his days isolated along with other adults who also have disabilities. Was he to be forever locked into the same life experience day after day, year after year?! Is that all there is for him?! To be trained, behaviorally modified, and entertained in an endless loop? To be isolated from the rest of society so that building relationships with regular people in the community would be near to impossible? To be ‘PLACED’!! – as in – AWAY – on a shelf?!
Today, I look at my other two sons: one who has already graduated high school, and my youngest son who is a high school senior this year. How different their choices are. How wide open and exciting life is for them – endless possibilities! I remember being told as a graduating senior myself: “The world is your oyster!” Life is there for the taking. All seems possible! Busting into adulthood is liberating, exhilarating, intriguing, wondrous, albeit a little scary. This new-found ‘almost adulthood’ also carries with it expectations. Family and friends expect that you will find your niche, make something of yourself, learn to stand on your own two feet, become productive, and contribute in some way. You expect to take charge, make your own choices and begin to build your life your way, maybe even get married and have a family. You can expect to meet many new people and make new friends (and loved ones) to go and do and experience life with. Life is good and you are just getting started on an exciting adventurous journey that will take many twists and turns as you age and experience life.
One thing’s for sure, you do not expect to be on an endless loop of being trained, modified, and entertained!!! You have no intention of being . . . Placed – Away – On a shelf!
I heard a quote not long ago that stuck with me (unfortunately I do not remember the source in order to give proper credit – my apologies to the author!). It goes something like this: ‘There are some truths you know because you have learned them. But then there are other truths you know from deep within you that you didn’t learn – you just know.’ And I can tell you that I just know that this disparity between how Joe’s future looks and how his brothers’ futures look is just not right.
Fresh out of high school, Joe should be looking at a wide open and exciting life – with endless possibilities! He should be busting into adulthood – liberated, exhilarated, intrigued, and in wonder knowing that anything is possible. We should be expecting him to find his niche and make something of himself. We should expect him to be productive and contribute. He should be allowed to build his own life, maybe get married and have a family. He darn well should be able to expect to meet many new people and make new friends (and loved ones) with whom to share his life!!
Pardon me. Please allow me to step back off my podium – I admittedly do get carried away at times. 😉
Back to those high school / adulthood ‘Transition Planning’ days: Unhappy with the options that had been presented so far, we kept looking. Against the advice of the Transition Team at the high school we looked at one last ‘Day Program’: StarfireU. The Transition Team had told me that StarfireU was for ‘higher functioning’ students and that Joe wouldn’t fit in. But, I thought, ‘How could it hurt to look?’ So we (Joe, his Dad, and I along with Joe’s Service Facilitator) went for a visit – just to see.
The minute we walked thru the door, we knew that this place was different than any of the other programs we had visited. The respect with which Joe was received blew me away. Instead of looking at me when they asked questions about Joe – they asked him. And they listened to what he had to say. They answered his questions – no matter how ‘left field’ they were. Joe was treated with the same respect that was shown to my husband and I. The description of the program was so intriguing. StarfireU members (attendees) spend some of their time in-house with various seminars taught by ‘Community Partners’. These are ordinary (and some not-so-ordinary) citizens who are drawn in from the community to share knowledge and passions. A lot of the members’ time is spent out in the community; meeting people, going places, doing things, volunteering, experiencing life! These aren’t ‘outings’, they are engagements. Interaction and engagement with any and all ordinary citizens is encouraged, supported and facilitated. The StarfireU program is definitely a program like no other. You can’t leave Starfire without being uplifted, inspired and challenged to think (dare I say, dream) in a new way. Of course we signed up!
Now, after experiencing StarfireU for three years, I can tell you that enrolling Joe in StarfireU was the best decision I have ever made. The experience we have had at Starfire has changed our lives and will continue to change Joe’s future. You see, Starfire is not about training Joe – or modifying him – or entertaining him. There is no endless loop at StarfireU. This is a four year, carefully planned and executed, person-centered / asset(gift)-based experience. StarfireU launches participating members into a life full of possibilities along with a supportive network of friends and family. Starfire is all about helping Joe build a full, rich ~ as close to normal as possible 🙂 ~ life that is productive, adventurous, and experience filled. Central to Starfire’s efforts are helping Joe find those friends and loved ones who are thrilled to share in Joe’s life. These are the people who are critical to supporting and sustaining Joe as he embarks on his OWN exciting adventurous journey that will take many twists and turns as he lives the full rich life he deserves.
And so, with Starfire’s help, we are starting to discover that the world is Joe’s oyster too!