Editor’s note: Every day, millions of Americans living with autism and their families face unique challenges that many of us will never fully appreciate. This month is National Autism Awareness Month, and all Americans can make a commitment to better understand autism. That said, below is a guest editorial by Crestonian Loyal Winborn, a parent to a child with autism.
According to the latest CDC reports, one in 68 children will be diagnosed with autism. I can’t tell you what that will be like for every family, but I have been asked by our paper to share what it is like for my family.
I am not going to lie to you, it is hard. It is hard for Alexander — the youngest — who doesn’t have autism. He has not attended many things since his brother — who has autism — can have panic attacks for events that are out of routine.
It was hard for my first wife, who gave up custody of our children and moved out of state. It is challenging at times being the only one he trusts.
I am often the only one who he lets calm him down or leaves events with him to help him sort through things. It is challenging on my new wife as she came in after I set so many routines as a single father for years, and had to become part of the inner circle. Most of all, it is very hard on Evan, as he is the one with autism.
Autism is a big spectrum, and it affects many people in many different ways. If you could, imagine for just a second what it is like to have over-sensitive senses.
Imagine if your sense of smell is so strong that laundry detergent in a store aisle is enough to make you feel gassed out or nauseated. Or, if your sense of sight is so sensitive that changes in light are like flares of sunlight blinding you until you can slowly adjust.
Simple changes in sound are just as bad as cannon bursts or sirens. You can hear the humming of lights as loud as a song on the radio. Imagine hearing every conversation in the room and not being able to focus on any of them as they all sound so overwhelming.
Evan and other children on the spectrum often flap their arms, hum and rock repetitively. There is a theory that nerve endings in extremities often misfire and people on the autism spectrum often feel as if their limbs “fall asleep.”
That is common and happens randomly to them. This also makes things we take for granted hard for them. Pincher grasp motions and fine motor skills are often delayed or near impossible without constant practice and work. Evan hums to block noises or change frequencies in sounds around him. By generating his own noise, he is controlling some of the things that are assaulting his senses.
Evan needs routines and he clings to them for comfort. We have routines for breakfast, after school and bedtime. They are like a contract to Evan and need special permission in advance to be broken.
One day I changed the locks and door handles in our home so I could have matching keys for the garage and house. Evan refused to touch a door handle for a week as they had changed without warning. After that I learned to include him in changes, and things got smoother.
I don’t think the tornado experience was as hard on anyone in our house as it was on Evan. All of his routines, collections and things were gone. We ate at different places, slept at strange places and had odd schedules for that first week.
He would cry with overwhelming depression anytime he saw the wreckage that was our home and panic attacks increased to heightened levels that summer with every storm or site of rebuilding our home.
The contractors and home builders would let me bring Evan in to show him the progress and they worked with him to prove they were putting his bedroom back to the way it was before.
With Evan by my side I often see the best and worst of many people, including myself. I used to get embarrassed if Evan had a fit while eating out, or if people made comments about him at a store or sporting event.
I am glad that was short lived, as he is nothing to be embarrassed about. I was selfishly self-aware that people looked at us or judged us. I have no problems in life. I am fully functional, working mind and body, and I am blessed. Evan was dealt a raw deal, and he is handling it better than most of us could ever imagine.
Now if people make negative comments, I honestly feel sorry for them. Most people however are great.
We have some good routines and great family and friends in our lives. The staff at Kelly’s Flowers, Adams Street Espresso and the Purple Cow can all make Evan smile the biggest smiles.
He beams with joy at the mention of going to those places as he loves the food and how nice and friendly the people there are to him. He likes shopping at hardware stores and grocery stores.
He has gone to many Iowa State football games, camping trips and more. Special events take many days of prep work, story boards with activities pointed out and pictures of people who will be there.
This summer we are planning for his first big commercial airliner ride. I am terrified and excited for him. We have much more work to do, and I am scared it might not go well, but I am pre-selling the heck out of it like it will be his greatest adventure yet.
There are many fears and frustrations every parent has for special needs children. I refuse to live in fear.
When I worried about what would happen to Evan if I am gone or die unexpectedly, I addressed it. Parents can build a Special Needs Trust.
I had lawyers help me build an account for Evan that only goes to his care if I should pass. It is court ordered and Evan cannot be sued or challenged by the state for those funds as they are not his, they are a trust fund that is managed on his behalf without counting as income.
It was set up in the Nebraska courts when I lived in Omaha, and I will never live in any state that will not recognize that court ruling.
The hardest thing to watch as a parent is when Evan is upset that he is different — when kids make fun of him, or if he is frustrated watching them and not being able to join in.
He talks about it some to me, but mostly he internalizes it and prays a lot. He is very spiritual and loves church and church camp as there is a camp for children with autism we go to every summer.
One day I asked Evan why he is so religious and I wanted to see if he was really understanding faith or if he just liked the routine of it? He looked me in the eye and as serious as he as ever talked, he told me “Dad, in heaven I will be like everyone else.”
I have never said anything like that to him, but I know the sermon Pastor Ben mentioned, in Heaven all ills are healed, and all tears are wiped away. Evan hears and processes what people say around him, and it breaks my heart when people act as if he doesn’t.
In closing I will tell a story from a man with autism. He said he learned algebra from a man he never met. He would wait for people in the special ed room to ignore him and talk about their family lives and then listen to a man teach math down the hall.
He could not read or write so well, but in his head he did math with this man over and over again for a few years.
When he got a computer and finally learned to type, he proved he could do math very well and this shocked people as they did not have him in math classes his entire high school career.
Many estimate and sometimes prove people with autism are highly intelligent and compassionate people, but they are trapped in bodies that do not function well for expression, communication and fine motor skills.
Evan has taught me so many things in life, and before him, I am not sure I ever truly knew what unconditional love was. I know it now, and will never forget it.