You go through life feeling blindfolded. Your clothes feel heavy and uncomfortable. Everyday smells violate your senses because they are exacerbated.
You can’t tell the people you love that you love them. You can’t sleep. Noises that don’t bother others hurt your ears and frighten you.
As parents you deal with additional stress of financial strains and debt because insurance feels that services that seem basic to your child’s betterment and way of life are considered “educational expenses.”
The characterization of what you or your child suffers in Hollywood is portrayed as the quirky “savant” who can play Mozart at age 7. Your child does not play Mozart.
None of you have slept through the night for 16 years. You get dirty looks in public because your child are “uncontrollable” or “throwing tantrums.”
Lifelong need for care
You have a child that will need your care for as long as you live. You cry every day because you are getting older and the fear you will get ill or die and be unable to provide that care terrifies you.
You have the blessing of a child that is incapable of feeling anything but blessed good and love — despite it being hard for him to tell you.
You are grateful for the strength of your marriage as the foundation of your family’s journey and what this journey has built for all of you.
World Autism Awareness Day
Thursday, April 2, was annual World Autism Awareness Day. This is autism awareness — for Jack, and his family, and for many other families like them that share their journey.
Wearing colors and participating in a campaign is educational and important. Even more important is understanding each family’s journey and learning from them, and giving them our support and care.
It is important to treat a family in a difficult moment in public with respect and understanding.
Needed insurance and services
It is important for us to raise our voices to campaign for health insurance to pay for needed services. It is important for us to make sure our public schools provide services for those who need it most.
World Autism Awareness Day is a day to be aware — but make every day your World Autism Awareness Day. Today is a day to appreciate and understand Jack and his family — both their struggles, and the blessing he is.
For more information, go to www.AutismSpeaks.org.
Susan Shultz is editor of the Darien Times, another Hersam Acorn newspaper and website.