Tuesday, October 23, 2012

Oct Advocacy Campaign: A Day in the Life of Autism

For the month of October we will be collecting stories from families affected by autism to share with our Senators and Representatives. This should be a brief story, statement or collection of pictures that illustrates a day in the life of someone with autism or of someone who cares for someone with autism.

Below is an example of "A Day in the Life."  It is a fictional example but contains elements that may be applicable to your family. (Plus if you follow the show Parenthood you might love it.) Please take a moment and create a document representing your “Day in the Life of Autism” to send to your Senator and Representative.

You can send your completed documents as attachments to utahautismcoalition@gmail.com with your physical address in the body of the email and we will make sure your document is sent to your public official this month. It will also be added to a collection of documents we may use at the Utah State Capitol Building during the legislative session. If you would like your document to be kept more private between you and your legislators, please indicate so when you send it in.

Thank you so much for taking the time to participate in this effort.

Dear Senator Needsaname,

My name is Kristina and I am a voter in your district. I want to share with you about my son Max and a day in our life with him. Max is 9 years old and has autism, which causes him a great deal of discomfort when experiencing loud noises, bright lights or strange textures. We know we have to keep his routine fairly constant or we have trouble. Last week he hit his cousin during lunch for not sitting with him. Last year we had to place him in a special school for children with autism after he smashed the classroom fish tank because the buzzing of the filter was irritating him immensely. Our doors have 3 locks on them and an alarm system to prevent Max from wandering. One day he was actually picked up by police after taking a bus across town alone. We worry constantly for his safety.

Max participates in a treatment program for autism that is extremely helpful in managing his symptoms. He has improved his language skills immensely and continues to amaze us with his ability to learn socially appropriate behaviors and improve his frustration tolerance. This has come at great sacrifice for our family as our insurance plan excludes all diagnostic testing and treatment for autism. Just to get him diagnosed, we had to pay $1,200 out of pocket. My husband recently because self-employed and accessing a health plan that covers autism treatment is a significant challenge. His treatment bills became so immense that we often wondered how to pay for our home or how we will send our other children to college. We continue to fight for ways to get him the treatment he desperately needs because we know that through treatment he can overcome many of the obstacles of autism and achieve great things.

Sometimes it hurts that we don’t get to do things that typical families do, but we wouldn’t trade our Max for the world. Though Max can be a handful, he is often the bright spot in our day. He knows every family member’s favorite food, color and activity. He notices so many details that I would probably miss in life without him around. He has a wonderful sense of humor and keeps us laughing. He loves his siblings and parents very much though sometimes he is challenged in showing this love. Max is extremely intelligent and generally does well at school academically, though we have regular struggles with social problems. He has made amazing progress, however, and against all odds was just elected class president. When he puts his mind to something he gets it done. He is honest, loving and has so much to offer in this world. I am sharing this story with you to help you get to know us, as members of your district, so that you can better understand the needs of our family and our wonderful son Max.


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