Printer Friendly

Support and independence.

IF I WERE TO LOOK BACK OVER THE years and single out the most exciting event, it would not be dramatic public events - it would be the quiet event of Jim growing up. Twenty years ago, Jim was 15 and we were living in a busy household in which his 18- and 19-year-old brothers were just getting ready to leave home and his 10-year-old sister and 11-year-old brother were still trying to convince me that they had practiced their music and that the teacher really hadn't explained the new math assignment. The house was full of their friends stopping by for a party, or to pick up someone or just to eat one of the countless hamburgers that I was always preparing. Jim had just started work training in a school program.

The older brothers left home only a week apart, and that began the process of my discovery of the lifetime impact of retardation. I left their rooms untouched for almost a week. Then I changed the sheets, vacuumed the floors, straightened the empty hangers. I knew that my little boys were gone and would return only now and then as young men with lives of their own. I also began to realize that Jim would not leave in the same way that his older brothers had left. And I cried again, like the time when he was three and I realized that, although he had learned to move and smile like the other children his age, he did not understand the meaning of the story in the Sunday school lesson. At this time I realized that the marvelous special classes I had helped organize could not perform the miracle that I wanted for Jim. By age 18 or 19, he would not have learned enough to be completely responsible for himself.

The brothers did well in college, graduated, married and about that time, the younger brother and sister also began to get ready to leave home. In only a very few years, the brothers, sister and friends were all gone and Jim and I lived in a quiet house. It was then that I began to see Jim working on what I think is his greatest achievement of the last 20 years, the realization that he can't readily do what his brothers and sister can do: things anyone would be proud of, like graduating from college, buying a car, getting a job, getting married and perhaps the greatest achievement in Jim's eyes - having a child. Jim watches as his brothers and sister do these things and he watches me being proud of them and making things for the grandchildren. (This spring there will be 14 of them!) He goes with me to the new houses, on rides in the new cars and to see the new babies.

Last weekend we walked through the rooms of his younger brother's new house. It has many bathrooms, windows that look over the mountains and the golf course, vaulted ceilings with skylights and a three-car garage. And Jim reached up and put his arm around the now taller younger brother and said, "This is great, Neil."

As I look over the events of the last 20 years, I realize that for me the greatest achievement has been to allow Jim to move from my house and to live on his own. To me, this means allowing him to fluctuate in weight and leaving his grooming skills under the direction of others. It also means welcoming him home for the holidays and understanding his desire to hurry back to the group home for the New Year's ball games. I spend my Christmas Eve as his driver as he plays Santa.

It was only last Christmas that I learned to be more casual about public responses to his disability. We were having lunch in the busy food court of the mall and I was aware of all the people around watching as Jim chose his meal and paid for it. As my irritation started to grow, again, I realized for the first time that being watched is probably as natural for Jim as not being watched is for me. Most of the people who watch do so with a mixture of admiration and curiosity, not resentment or unpleasantness.

Jim has probably not only gotten used to it, but perhaps he would miss the attention if it should stop.

Jim seems to like his life. He is proud of his achievements. He is pleased to live in a group home and have friends that he has made on his own through Special Olympics and the group that takes trips together. Jim has learned to get along with different roommates and job coaches. He does his own laundry and can, for special occasions, even shave to my satisfaction.

I am proud of Jim and all the things he has learned. But I am most proud of his greatest achievement, which is also mine: the realization that children with disabilities grow up to be adults with disabilities, and even though they do their best, they continue to need help. The struggle for me is to be wise enough to offer help only when it is really needed and to accept Jim's best with genuine joy. For Jim, I guess the struggle is to put up with a mother who, at times, loves him too much.

I keep a room for Jim in my home. It is a delightful, but tiny, attic room. In it are Jim's bedroom set and toys and games that friends and relatives have given him through the years. There are games and toys that he likes and uses when he visits, but does not feel are dignified enough to take with him to his group home. (He also lets me keep my doll house in his room.) When his brothers' and sister's children come, they hurry upstairs to play in Jim's room. In that way, Jim does have children.

Throughout these 20 years I have shared the bittersweet experience of raising a child with disabilities into an adult. Sharing that experience with the editors and readers of Exceptional Parent has made the experience more meaningful and less lonely. Thank you for those 20 years of being there. The support of Exceptional Parent is priceless to me and other parents.
COPYRIGHT 1992 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1992 Gale, Cengage Learning. All rights reserved.

Article Details
Printer friendly Cite/link Email Feedback
Title Annotation:Family Hall of Fame; parenting a Down syndrome child
Author:Tingey, Carol
Publication:The Exceptional Parent
Date:Jan 1, 1992
Previous Article:The Alliance for Technology Access.
Next Article:The personal is the political.

Related Articles
Finishing the race.
Is this going to be sad?: a "Wolf-Hirschhorn family reunion" is a time to share tears and laughter.
MPS: the ties that bind.
Parent to parent programs.
1994 Exceptional Parent index.
Welcome Home: Parent to Parent Conferences Make Exceptional Parents Feel Like Family.
Parent to Parent Programs.
1999 Exceptional Parent Index.
Glad About My Brother.
The Great Divide: Adolescence.

Terms of use | Copyright © 2016 Farlex, Inc. | Feedback | For webmasters