- Posted April 5, 2012 by
This iReport is part of an assignment:
Life with autism: Share your story
Severe Autism: Isolation and The Changing of Dreams
Notice: 4 short video clips are included
My husband and I have took time today to share about the isolation we feel and how painful it is for the dreams you have for your child to change. Luke and I took Sammy to the park because this is one of his favorite places. I feel isolated because when I tell people that I have an autistic child, many of them respond with sharing how a cousin, aunt, or brother is autistic. Then, they move right into what amazing thing the person can do or the social issues this person has. Most people do not understand. I believe there is autism awareness here in the U.S., but not SEVERE autism awareness. The opposite sides of the autism spectrum are so incredibly different that I believe you could almost give SEVERE autism a different label. Sammy is 6 years old and still wears a diaper. He has never said his name. He chews on what seems like everything and eats nonfood objects like Christmas ornaments and batteries. I cannot take my eyes off of Sammy, not even for a second. I cannot let go of his hand in public places because he darts away from me, has no concept of traffic, and no concept of stranger safety. The most heartbreaking thing to experience as a parent of a severely autistic child is that my son cannot communicate feelings or physical pain. He can point to basic things like the food or objects he wants and is learning a picture card system of communication. Even within my local autism support group, I feel like I can't relate to other parents who have autistic children.
Luke shared about how his dreams for Sammy changed. When a parent is holding a newborn, his or her heart is full of dreams. Luke wanted Sammy to eventually play soccer and chess. By the time he was 2 1/2, all he wanted to do was talk with him. Dreams change, and this can be a painful process. Once you come to accept that things will not turn out as planned, life gets "easier" to some degree. We have learned to notice the simple things about Sammy that bring us joy. There is nothing like the love between a special needs child and his or her parents.
I have also included two shorter video clips from earlier today: one of Sammy being upset, the other of him being happy. This gives you an idea of the ups and downs that occur throughout our day.