Did you know April is Autism Awareness Month? This poem was originally published on my blog on April 1, 2009, and it wasn’t something I thought of as particularly good - I just sort of dashed it off. After Ryan died it went viral, as much as something could go viral back in 2009, and was even published by a few newspapers. Because I am traveling for work this week and that always exhausts me, I will publish is here in memory of my Ryan and in honor of my son Sean, who is also on the spectrum. God bless all of our children who are affected.
The Face of Autism
The face of autism lives in my home.
He is often confused.
He is rarely smiling.
He is dismayed by change.
He makes odd food choices.
He often shows a lack of understanding for the feelings of others.
He repeats things endlessly.
He has quirky habits.
He can be downright surly.
He is lit up by music.
He is gentle with babies.
He shows great compassion for visible suffering.
He occasionally shows great intuition.
He will entertain toddlers for hours with silliness.
He has a deep love of the Mass.
He has an innate piety.
He navigates a world he does not understand better than I could.
He is the child who made us parents.
He taught us so much.
He is the face of autism in our home.
He is my joy.
Dear Mary Ellen:
I remember the blog post about the “Face of Autism” quite well. I would look forward to reading more about your beloved Ryan, and of course I was devastated when Ryan died.
There are two autistic men in my life. It’s hard to believe that they are actually young men now. Both Matthew(my nephew) and Tim (son of a very dear friend) are in their mid to late thirties now, and are dealing with their challenges in different ways.
Matthew as a toddler was quite obsessed with certain videos and certain foods. He would watch the Fisher Price Visit to the Farm endlessly. At one time he would only eat white foods, and I particularly remember him eating white American cheese or only Breyer’s vanilla bean ice cream.
With all of his struggles, Matthew was a loving, affectionate boy. He had to learn how to ask first if it was okay to give a hug, which he did learn. My brother got him interested in sports statistics, which gave him an outlet to express himself.
Right now, Matthew lives with my brother in a small town in Pennsylvania and has a part time job at McDonald’s, which he loves.
Matthew’s mother died when he was about 7 from breast cancer, and I can only imagine how his mind struggled to comprehend.
I only became acquainted with Tim when he was about 12. His mom Cecilia decided to rejoin the choir after an absence of many years, and she brought Tim along with her. Tim loved being a part of the choir. He played the guitar, recorded songs he had written and liked nothing more than to sing with people.
Tim attended a BOCES program for high schoolers and even attended community college classes for a brief time. Tim’s mother died when he was 17 from a brain tumor, and one of my life’s greatest joys was being able to spend time with her during that last year. Afterwards, Tim and I would enjoy burgers from All American before choir practice and lunch after Sunday mass. We always had Mother’s Day lunch together.
Tim also was able to find a “nightclub “ of sorts that was specifically for adults with disabilities. He loved his nights at the Starry Night Cafe, and I bless the social workers who came up with this idea for people who were no longer eligible for the “under 21” social activities. The members played games enjoying performing for each other and shared snacks.
In the past few years Tim has transitioned into living in a group residence in Suffolk County. He misses his old life, but he has friends and takes part in group activities. Tim has one older brother, and his dad has become engaged to a wonderful woman.
I do remember that when Ryan died that I asked Matthew’s mom Regina and Tim’s mom Cecilia to watch over him.
I can only hope and pray that our Church and society can find ways to help make all autistic persons feel welcome and see them for who they can be.
Sorry for the long comment….
Mary
Beautiful!!