Charlie’s Story – A Mother’s View
Linda Thompson, Charlie’s Mother

When our son Charlie was born on Christmas Eve eighteen years ago, we had no idea the adventures and challenges in store for us. Welcomed into the family by his mom and dad, brother and sister, he was the center of our attention…and did he ever respond! As the weeks went by he became very precociously social. Charlie would make eye contact, smile, and engage people in interaction, often with great persistence. With his blond hair, cute chubbiness, and contagious smile, who could resist? Therefore it was easy to allow his doctor to shrug off our concerns about his development in general. But finally when Charlie was nearly one year old, the doctor agreed there was reason to be concerned. After a battery of tests, the only conclusion was that Charlie had a disability. It wasn’t until he was 12 years old that he was diagnosed with Angelman Syndrome.

Throughout his toddler years, Charlie continued to touch people with his outgoing personality. An example of this was an incident that will forever stay with me. Charlie started walking at the age of 2 ½. The first time he walked into the grocery store all the employees at the front of the store turned and clapped and cheered for our little trooper! I knew there would be people pleased to see this new development, but I hardly expected this much reaction!

In the meantime, even without a diagnosis, Charlie was growing up and decisions needed to be made about school programming. Therapists and school staff alike were puzzled as to how Charlie could be so tuned in to people when his other developmental milestones were lagging far behind. All I knew was that Charlie’s sociability was a strength we could build on to help in other areas where there were more difficulties. We worked through the years on a program for Charlie so that he spent the majority of his time with peers who could interact with him and model appropriate behavior. Charlie was an observer of the extreme. He would watch very carefully what other students were doing and when he felt confident enough would try it out for himself.

Charlie had his first work experience in school in 5th grade. He took a cart around to the classrooms to pick up library books and then returned them to the library. The following summer Charlie had his first community work experience. He sold and served coffee from a coffee cart to people in their offices at the Rural Institute on the University of Montana campus. What great opportunities to socialize!

Charlie then made the transition into middle school, and work became a staple of his program. He accumulated a number of job skills doing tasks like paper shredding, cleaning the teachers’ lounge, and helping to stock the juice cart in the lunchroom. In the summer after 8th grade, Charlie worked once a week in the local PLUK office shredding paper. It was gratifying to see how easily he transferred the skills learned at school into a completely different environment. Watching Charlie being so competent in learning job tasks and enjoying the social environments he became involved in, I knew that for Charlie, a good quality of life as an adult would have to include working in the community.

The question was: how would we accomplish that seemingly overwhelming task? I knew that in the traditional world of adult services Charlie would have a difficult time getting a job in a sheltered workshop, much less a job in the community. Charlie needs individualized supports and opportunities and wouldn’t fit easily into an existing group program.

When Charlie was in 8th grade I really became concerned about his future years in school. Four years in high school would go very quickly and I felt a sense of panic about what would be accomplished in those years and how we’d reach the goal of a community job. It was about that time I attended a couple presentations by students who had participated in the WISER Project through the Rural Institute. The students, who all had severe disabilities, had so much self-confidence and pride in what they had accomplished on the jobs they each held in the community. I realized this would be the best course of action for Charlie. The process appealed to me because it focused on discovering the student’s strengths, abilities and interests rather than the student’s deficits.

In Charlie’s freshman year we were able to join the project. The first step for his vocational team involved attending a fall training session given by Marc Gold and Associates. The training was inspiring not just for me but also for other members of the team. As I was responsible for writing the Vocational Profile, I also led the discovery process and relied heavily on information from Charlie’s case manager and high school paraeducator. I interviewed other family members and Charlie’s former middle school case manager. Each time the team met, every member gave valuable input and I was able to add more detail to the document. We were all discovering new bits of information that we hadn’t known before about Charlie and also new ways of looking at the things we already knew. I cannot emphasize enough how important it was that each member of the team was fully engaged in the discovery process and believed in its value.

As I worked through the Profile document, I would type in the information, print it out and send it to the other team members so they could look it over and be prepared to add their feedback when we had our meetings. Through the discovery process we were able to see how many job skills Charlie had actually developed. At school, Charlie had performed tasks including paper shredding, various jobs in the library involving the collection of books, scooping ice into bags and taking them to the nurse’s office with a cart, cleaning counters and the teachers’ lounge, and stocking shelves. We also learned about Charlie’s preferences by discovering the things he helped with around the house and while shopping such as pushing carts, unloading items onto a conveyer belt, unloading groceries at home, and using a broom and dustpan to clean. Skills learned in community jobs included serving coffee from a coffee cart to offices in a building on campus, shredding paper and disposing of the shredded paper, and cleaning up the workspace with a hand vacuum. In addition to what we learned about job tasks and preferences, the common thread running through the discussion was that it is important for Charlie to be in a social environment, that he enjoys being around people who are social, friendly and who give him positive feedback. He likes to feel competent and complete tasks. Included in the conversation were other factors crucial in determining appropriate job sites, such as environmental conditions, degree of supports needed, and type of instructional strategies.

Once we identified all these conditions we were able to specify what contributions Charlie could make in a work place, ideal conditions, and what Charlie would prefer to do. Getting down to these specifics made it easy to identify potential employers.

We now have a document, the Vocational Profile, that will be used for Charlie’s lifetime. It will be updated from time to time but it reveals much about Charlie that will never change and will be invaluable to any job developer new to the team.

Transition is still a scary time with many unknowns, but this process has given us the tools to face the prospect with much more confidence. Charlie is now working in the community in an environment that he enjoys with a great employer and fellow employees. The employer was targeted because the situation matched what worked for Charlie. This job was custom-tailored to him based on the information we discovered was necessary for him to be successful. His job coach amazingly fits all the criteria we established as “ideal.” I can see how good Charlie feels about his job and feeling competent carries over into the rest of his life. As is the case with many students, Charlie doesn’t get these same feelings of competence from academics, but there are many employment arenas in which he can make a contribution.

From the beginning we always did our best to build on Charlie’s strengths, often to the dismay of professionals who believed their “program” would meet his needs. Because we included people from other agencies on the IEP team, a more balanced picture of Charlie emerged as all the team members could bring a different perspective of Charlie to the table. I believe that enabled us to create a program that addressed Charlie’s strengths and needs, and led us eventually to the discovery process and the Vocational Profile.

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