The Only Point of View
My name is Jerome. I am five. Some people say Iím a special needs child. Others call me disabled. A few label me severely retarded. Theyíre all right. Every cell in my body is missing genetic code. The doctors say I have a chromosomal deletion.
According to statistics I will never speak. I will probably live a normal life span.
This last year Iíve grown a lot. Dad tells people I look like a football player. Mom says Iím strong and active. I am very tactile and want to touch everything. I also love to chew and will grab anything I can reach and put it in my mouth.
Both of my parents love me very much and work hard to keep me from getting hurt. I want to be on-the-go constantly, but donít know the difference between a busy street and a quiet pasture. If I have a chance, I will break free and RUN!
What makes me happy? Food. What makes me sad? Scary dreams.
People wonder how I see them. Iíll tell you. Theyíre outside my bubble. Everything is outside my bubble. I am self-contained. My chewy toys are inside my bubble. Theyíre part of me. When I chew them, something quiets inside me. Then I donít have to run.
Therapists work with me four hours every day. They come to my house six days a week. I like therapy. I am starting to recognize food selections on an Ipad. When I point to a picture, I get a bite! Because of therapy, my teachers in my special education class at school say my attention span is improving.
No one knows for sure what my capabilities will be. I canít learn many things. Sometimes I learn something, but un-learn it almost immediately. When I learn and remember, we celebrate. There is lots of clapping and loud praise! But I will always know how to run. I will never forget that. Put me in a field and I will run with my arms out Ė forever. Then I am free, even from myself.
Everyone wants to know what Iím thinking. Itís very simple. There is no today. No yesterday. No tomorrow. Just right now. This second. Sun on my face. Rough tree bark beneath my hands. Grass under my bare feet. Something in my mouth.
At dinner I point to my Ipad. I love meat. Mom offers salad and I close my mouth. I might agree to green beans, though. Then I will want more meat. I point, and she gives it to me.
When Mom holds me close, I melt. She becomes part of me, too. She is busy, though. I have three other siblings who are seven, three, and one. I am the second oldest child in my family. She still finds time to sing to me. Sometimes I wish I were still in utero and we were really, truly still one.
Dad is very protective. He thinks I might climb on the fireplace hearth and fall, or run right into a hot oven when Mom opens it to take out her lasagna. He has reason to worry.
Some people wonder if I will ever know God - if I am capable of faith. I guess that means Iím not accountable. Mom and Dad make sure I receive the consecrated Eucharist every Sunday. They say Jesus lives in me.
My parents understand things other adults donít Ė like mercy and compassion. I donít know how I know this. I just do.
I am Jerome. I am five. I am different. I am special. Grandma says so Ė she even says Iím an example to follow. Why? I canít do all the normal things people do. But because I canít reach out of my bubble, I have to trust those outside to reach in. Trust. Itís the only viewpoint Iím able to have. Itís the only one worth having.
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