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My reason for being.

Since the birth of my daughter Lisa, who has Down syndrome, I have had occasion to address parents of young children with disabilities, speaking from my own experience. I still recall a phrase I used assuring them that while having a child with disabilities may be an earth-shaking experience, it is definitely not a life-breaking one. As I look back now, indeed, not only was it not life breaking, but in many ways Lisa really put my life together for me and gave me a raison d'etre (a reason for being).

I confess that in the early years when I heard parents talk about their feelings of being blessed and fortunate to have a person in the family who had disabilities, I did not view it in that manner. I felt these phrases to be too saccharine, and not fully honest. However, as I am to respond to the question "describe the event that has meant the most to you in the past 20 years," I have to honestly say that having Lisa as my daughter is the answer. Without a doubt, this turned my life around and, for the most part, certainly for the better. Lisa has given me a far more enriched life than I could have imagined. As I look back over the past 35 years, the challenge has made me a better human being, as well as given me a great deal of inner satisfaction and a genuine feeling of self-worth.

I recall reading somewhere a wonderful phrase (which I subsequently submitted to Exceptional Parent) that "Parents are like tea bags; we don't know our own strength until we get into hot water." How true that is! Within a relatively short time, I got energized and channeled my emotions in a productive manner by becoming an advocate for parents, as well as for Lisa. Reading a very early article in Exceptional Parent called Parent Power (November 1971) helped get me on my way in what I called "my battle with society." This encompassed educating the community, neighbors, friends and society at large on what it means to be a parent of a child with disabilities.

I was forced to be my own case manager almost immediately. As far back as 32 years ago, I managed to have Lisa attend a day-care nursery for working mothers, where she was the only person with a disability - a first during the time when no one had ever heard the term "inclusion." I initiated a letter-writing campaign to the American Medical Association deploring the lack of education on the part of the medical professionals in speaking to parents of newborns. Today the local chapter of The Arc (formerly the Association of Retarded Citizens) has what are called grand rounds, which are programs where parents of young children address and educate the medical profession.

Long before Public Law 94-142, when no one ever heard of mainstreaming, Lisa's class for "trainables" was held in a basement, the dismissal time was 2 p.m., and lunchtime was completely segregated. I convinced the principal of her school not only to have an integrated lunch period, but ultimately to have the older students in the special education classes work in the lunchroom. I also persuaded the school to institute integrated assembly programs I realize that had it not been for Lisa, these changes, and others since then, might never have taken place.

I became an activist early on, joining parent groups and coalitions, constantly urged on by the editorials in Exceptional Parent. That is how I learned to speak up. Prior to Lisa's birth I led a reasonably conventional middle-class life. However, after joining the Parent Training Network, my whole life changed and became enriched by meeting such remarkable, dynamic parents. I was given the opportunity to make presentations at conferences all over the country on such subjects as parent-professional relationships, letting go, sexuality, siblings, supported employment, etc. Aside from the tremendous ego-building experience this afforded me, in all modesty, I feel that I have made a difference in many people's lives, and hopefully succeeded in changing attitudes on the part of professionals and parents.

I know that by sharing my innermost emotions and feelings with the many professional groups I addressed, I convinced them not to talk about "these children," and urged them to communicate with us by listening to us. I am grateful to Exceptional Parent for the many phrases I've borrowed from the editorials for my presentations. I remember impressing one audience with a phrase used by editors Maxwell Schleifer and Stanley Klein: "Angry people ask for help in angry words, so professionals should listen to the melody and not the words." I have been working diligently to convince parents to work more closely with professionals and understand them, as there is no doubt in my mind that we must learn to work together. Many of my efforts go into what I call parent-professional relationships. Once the professionals understand all the subtle psychological dynamics involved in parenting a child with a disability, and once parents realize that professionals do care and want to understand, the bridge can be crossed.

In addition to Lisa as the catalyst to push me into action, there was my introduction to Exceptional Parent in its first year of publication. After I read each issue, the juices within me would begin to flow, and I became a constant contributor to the Letters to the Editors. I continue to have a wonderful outlet to share my views and spread my philosophy, even on such controversial subjects as sexuality. As early as October 1975, Exceptional Parent was courageous enough to have Dr. Sol Gordon Exceptional Parent Advisory Board member) discuss his views on sexuality in his article Being Attractive. I then wrote in, urging parents to face the issue of sex squarely, openly and clearly.

Along with all the other early parent advocates, I was heavily involved in the passing of P.L. 94-142. Through my involvement with the Parent Training Network, I had the privilege of being at the White House to celebrate the 10th anniversary of that legislation - thank you, Lisa, for that opportunity!

It is difficult for me to believe that I changed from a shy person to one who would speak up at hearings and address large groups of people and legislators. I really feel I made a difference. I truly believe that all parents make a difference, just by the necessity of learning how to cope with our problems and get the system to help us obtain what we need. Whenever I am with a group of parents, my favorite toast is "Here's to us - we're terrific!"

I began to talk and write about the dignity of risk when Lisa was still quite young, and I hope that I influenced some readers to begin to "let go." I still don't know where I got the courage to let Lisa travel by herself in New York City. My article, Children Learn While Parent Squirm (February 1977), described my ordeal. How proud I am of Lisa who, after living away from me for 11 years, now rarely gets lost. The few times she does get lost, she proudly tells me how she "found herself."

I like to think that by describing my anguish and fears about having Lisa move into a group home She's Leaving Home. What Do I Do Now?, June 1979), 1 gave parents food for thought on the importance of beginning early in training children for independence and separation. It was Lisa who said, "I want to move out and get rid of my mother," a pretty normal statement to make. Bringing Lisa to that level of independence gave me a good feeling indeed, and I succeeded in letting go (sometimes too much). Today when I ask her to drop by my house for dinner, she responds, "I have to think about it."

There is no doubt that Lisa has had an impact on her brother Paul as well. (He is two years younger and currently completing his studies to be a clinical psychologist.) Paul, too, became active and participated in many sibling panels where he openly admitted that although he had ambivalent feelings, there is no question that Lisa made a difference in his life.

From a philosophical point of view, if it is true that one reason for our being here on earth is to do good and make a difference in our society, I feel that because I have Lisa in my life, I have managed to effect changes in some small way.

The next important event in my life will be to encourage the fast-growing self-advocacy movement. While parents still need to be advocates and in the forefront of the legislation, services, etc., we have to also learn to step back. We need to turn our thinking around. Instead of giving direction to people with developmental disabilities, we must learn to be directed by them, and hopefully encourage the rest of society to listen to them. Perhaps the next Hall of Fame will include our sons and daughters who have mental retardation and describe their accomplishments. I will never stop educating the public without getting angry. I will keep trying to convince parents not to feel guilty about feeling guilty, but to continue to work with groups and carry on the spirit of this wonderful magazine.

Betty Pendler lives in New York and has a master's degree in community health education from Hunter College in New York City. She has a son completing his Ph.d. in clinical psychology. Her daughter Lisa, 35, who has Down syndrome, has lived in a community residence for 11 years. Pendler is a member of the New York Developmental Disabilities Planning Council and is a consultant and lecturer on parent advocacy.
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Title Annotation:Hall of Fame
Author:Pendler, Betty
Publication:The Exceptional Parent
Date:Apr 1, 1992
Previous Article:Laws and disability: you can make a difference.
Next Article:Decisions, decisions.

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