Anne Fredericks told me about the unique school program that has helped their son, Jeff. I am pleased she is sharing this experience. We all need encouragement to help our children reach their full potential. We printed Anne's original history of Jeff in our second Newsletter way back in '83. Greg, Ann and son, Jeff live in State College, Pennsylvania.
I wanted to update our friends in the MSUD family about the accomplishments of Jeff Fredericks. For those of you who don't know or remember Jeff, he was diagnosed very late (16 months) and had quite a lot of neurological damage. But since he has a small amount of enzyme, he is considered a variant, and has accomplished a great deal, despite the delayed start.
Jeff is now 21 years old and is going to finish high school this year. Jeff has been in Learning Support classes all of his life. The high school class has been called "The Wild Dream Team." Two years before Jeff started in the class, the students decided that they wanted to take a trip. The teacher asked them to dream. . . "Where in the U.S. would they like to go?" They decided on Disney World. To get there, they asked people to donate frequent flyer miles and money. And they got there!
The next year, their teacher wanted them to give back to the community. So they entered the Good Housekeeping/Paul Newman cooking contest, in which they were finalists. They went to New York City to have lunch with Paul Newman and collect their $10,000 prize. With this money (and some additional community money) they bought a handicap accessible van for Easter Seals. When Jeff got in the class, they won another contest and went to New York. They gave $5,000 to Easter Seals this time. Then it was time for another "Wild Dream" vacation, and they went to Arizona to the Grand Canyon and a Dude Ranch. We are very proud of this group because they set goals, and they surpass them.
But the latest venture has really been incredible. The students came up with an idea that the school district would fund an apartment where these high school students could rotate time for 1 to 2 week stays, so they could really learn to be independent. Well, it has come to be - it is called the Life Link Lab. And Jeff has matured so much at the apartment. There are transition coaches who stay there to help with shopping, meal preparation, budget, chores, and any crisis that arises.
Just before the apartment program started, we attended the Symposium in Missouri. We were especially inspired by the person in Washington State who runs nutrition classes for metabolic diseases at their clinic. We admitted that Jeff (at 19 years) did very little for himself - he refused to make his MSUD formula or do any cooking. When we learned that much smaller children could do those tasks, we vowed to go home and get Jeff to take over these essential life skills. We found a graduate student from Penn State University who started to help Jeff.
Jeff learned to measure using various dry ingredients. Next he learned to pour a package of formula (pre-measured by his parents) into the blender. Then he independently made his own drink. He also adds some extra amino acids and crushes his own pills to add to the drink. This was a big step for him and he is very proud of his accomplishments.
Since he leaves home to live at an apartment for a week or more, he has had to learn to do some basic cooking. He still has a long way to go, but we now feel that he can live on his own with minimal assistance.
Skills for independence
- Written by Anne Fredericks