Growing Up Handicapped
When my son Adam was in his early teens and had learned how to communicate through typing on a keyboard, he began writing about his life, from his perceptions and his experiences. His sentences were bold and honest, it was the first time in his life that he was truly able to express what it was he thought and felt. Can you imagine his enduring years of having a very good mind but being non-verbal and unable to say anything? While all that time the world around you has assumed you are mentally impaired and unable to process most things? We were told early on that Adam had a brain development of about 18 months and that he had peaked, it was as far as his brain would go.
At an older age when he finally developed the skills and assistance to truly communicate these assumptions were completely eliminated. Adam had absorbed reading skills, math skills, he had learned about his world from television and media, and he had listened to every conversation around him.
In his teen years he was taken out of special education classrooms and mainstreamed into junior high and high school. The schools were wonderfully cooperative and various students volunteered to assist Adam because of his physical limitations. They helped him get off the bus, get to his locker, carry his books and get to his classes. Between the volunteers and his aids, he had a very positive school experience and even enjoyed a fair amount of fame and popularity. He graduated high school on the honor roll.
Adam is now in his 30's and lives with a group home family, wonderful people who are special ed teachers themselves and had worked with him when he was young. Adam enjoys a wide family circle of cousins and relationships among people who have adopted him into their hearts and embraced him as one of their own, and enjoys a full life of working, social activities and travel. His physical limitations are supported lovingly by his care family so his life did emerge into a wonderful story of kindness and acceptance. He did not have an easy road.
I made a promise to Adam when he was a youth and we shared so much communication that I would tell his story. Honestly, it was one of the motivations behind my founding AMG4D, to honor my son who has led an unexpected but remarkable life. In his teen years he wrote an essay about his life. Following now I offer this essay to you, to share with you on glimpse into Adam's life. Parts of this essay are not necessarily easy to read, nor easy for me to share with others. I chose to do so to honor my promise to Adam to tell his story, and also because many of the things Adam expressed I have heard repeated in many places from many people in the world of special needs. A message that says, "I am not a disease, I am a person. I am not a disability, I am a person. This is his essay, written at age 14.
GROWING UP... HANDICAPPED
by Adam S Wulf
I remember the day the doctor told Mom that I was retarded and would always walk with a weird walk. I felt this was a death sentence. I worried about the retarded diagnosis and what would happen to me. The doctor told my Mom to put me in an institution because I would be hard to care for; impossible to keep at home. He said I would go blind and deaf and there was no cure for my disease. This disease can hit children. Why did I have to be the one? He said that I would never talk and would certainly die young, but that would be a blessing. My Mom cried and cried, she hurt so bad. I did not understand what blind and deaf meant. I only knew we were sad and Mom and Dad cried a lot at night. I really felt bad that I had made them so sad. I did not know what to do. I was worried and scared that they would give up on me. I felt angry at the doctor.
When I was three, I remember visiting Fairview for the first time. Then I understood what an institution was. How could he tell them I would be better off there? Where did he go to school anyway? Did he think he would be a doctor if his parents had sent him to live in an institution? When people become doctors they are supposed to help us, not hurt us more. My doctor took me away from my parents without a thought for my feelings. Don't retarded people have feelings too, or only smart ones with high IQ's? I am not retarded, but it should not matter.
When I was in school, I wanted to tell my teacher I was intelligent. I wanted to tell her I am a nice person. I wanted to tell her I am a person who is different and I have feelings. I wanted to play with the other kids. I wanted to tell the teacher I am a good person and I certainly am a sad person because I cannot talk. Assess the person on the basis of the heart, not on the talking. I wanted to tell her I am a funny person only I can't talk.
Why are disabled people treated so badly? No one would want to live in an institution, so why would we? Other people need to know what it is like to be treated worse than a dog. People talk to their dogs like they understand, no one talked to me that way.
I love my Mom and Dad even though they brought me to Reach Center [a school for mentally disabled]. This is something I knew even without a high IQ. They were very brave to let someone else take care of me. I feel lonely for my family, but I know that when I grow older I can assess the situation without so much emotion.
Now that I am in regular school I am not bored, although it is hard to keep on the honor roll. Science is my favorite subject. The kids are not scary to me anymore. I was afraid they would assess me on what I looked like, not on the basis of who I am. Even though I talk on a typewriter, they do not think I am stupid or funny. I used to dream about going to regular school. I want to be able to go to college and write real literature.
I am happy God took care of me just as my parents asked Him to. Sacrifice some things to make life better in the end. I am strong but my muscles are not; my strength comes from other sources.
Not the end!