“Parents and teachers should look at the child, not the child’s label.” – Temple Grandin
“The best thing a parent of a newly diagnosed child can do is to watch their child without preconceived notions and judgements and learn how the child functions, acts, and reacts to his or her world.”- Temple Grandin
“We must not allow other people’s limited perceptions to define us.” – We must not allow other people’s limited perceptions to define us.” – Virginia Satir
Post #1 in category. We recommend reading posts in numerical order.
No Photos
A: I hate her! I hate her! I am very angry! Look what she did to me!
S: What did she do?
A: I don’t want photos! No photos! Don’t take my picture!
S: Why are you upset? Why don’t you want to have your picture taken?
A: No photos! She did a bad thing! She took photos of my chromosome!
S: I don’t understand. Was she taking pictures of you that you did not want?
A: That’s not it.
S: Please explain it to me. What is a photo of your chromosome?
A: Doesn’t matter! All photos! No photos! No photos!
S: It is okay, no photos if you don’t want them, but please explain to me why you don’t want people to take photos of you. You are a good-looking guy. Please come speak with me. You can come to my office. Help me to understand.
A: I don’t want photos of my chromosome.
S: I am trying to understand. Please tell me more. Was there a very bad photo that you did not like?
A: When I was a kid this guy, this photographer, took a lot of photos of me and my family. When my father and mother looked at them at the kitchen table, my Dad said, “Not this one, not this one, not this one. I can see his chromosome in all these photos.”
A’s parents were loving and dedicated to him and had not realized that A was listening as they were selecting their daughter’s wedding photos to be placed in the family wedding album.
All through A’s childhood he had heard his parents and siblings, his schoolmates, his doctors, therapists, teachers, and even strangers discuss his Down Syndrome diagnosis, often in front of him as if he would not understand what they were saying, as if he was not even there. People talked about him, stared at him, or moved away from him. Some were afraid A was contagious. Children teased him about his Down Syndrome, his slurred speech, his short stature and slow learning.
Over the years, he became increasingly ashamed, defensive and angry. Photos were evidence that he was different, that something was wrong with him.
Soon after this event, A happened to find a job in a local restaurant. He was very proud of his achievements in a meaningful, responsible position at the restaurant that paid him a good salary and tips. It was his first job, and it was going well. It was obvious that with his new job, he felt more competent, more accepted, and needed. His personal connections and successes gave him higher meaning, purpose and self-worth.
Over the next several months, he became friendlier with his co-workers and was greatly appreciated by the restaurant’s many loyal customers. A became far more accepting of himself and his new identity, a valued person not limited or defined by his label or his photo.
I am Broken
A French child was terribly afraid to leave her home. It was difficult to know why she did not want to go places or to participate in activities.
One day, she protested and said, “I won’t go. I can’t do it, I am broken.”
Her parents asked her, “What do you mean you are broken?”
She answered, “I have fragile X.” “Fragile things break into pieces.” “I break easy.” “I am broken.” “I won’t go.”
Julien’s T-shirt*
Julien is an intelligent, highly verbal, highly personable 16-year-old from a prominent and wealthy family. His parents gave him a T-shirt that read in bold font across his chest, I Have Tourette’s Syndrome.
At school, Julien would point to the words on his T-shirt when he wanted to get out of his class lessons. He would pretend to be exhausted, pretend to be crazy, pretend to be stupid, dependent, helpless, sad and sorry for himself.
He wore his T-shirt in the afternoons and evenings when he walked to the outdoor food market to beg for sweets, Coca-Cola, and money. He was overweight, and his diet was restricted.
Julien uses his diagnosis to manipulate others. To take advantage of people who are made to feel sorry for him, and to feel some sense of control when he feels powerless. I believe that in part, because of his label and because of his practiced deceptions, he has come to think of himself as limited, handicapped, disabled, stupid even though he is very capable.
One day, on an outing, when feeling particularly frustrated and angry, Julien banged his head on a glass sheet covering a framed poster hanging in the hallway of a public building. The broken glass cut deeply into his forehead. Blood gushed down his face onto his clothes and onto the floor. He frightened himself, and he was ashamed, but told people, “It is not my fault, I Have Tourette’s Syndrome.”
Julien’s parents placed him in a long-term residential treatment center where he wears his T-shirt every day.
*The pros and cons of psychiatric diagnoses are complex and nuanced, needing further elaboration and discussion in future OM blog posts.
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