I found myself staring at this blank page….just staring and thinking, “What do I write? How do I write it?” There have been other times where I’ve had an opportunity to write about this world we personally know as Autism. I’ve avoided it. How do you put into words what this experience is like? I am going to try.
My husband and I have 2 boys, ages 6 and 7. Our oldest, Joe, has Autism and our 2nd, Matty, is on the spectrum with different disorders. When Joe was born he had so many struggles. He did not like to be swaddled, but he loved lots of movement. The 1st full year he never slept a whole night and had severe Gastrointestinal problems. We tried everything from medicine to homeopathic remedies. Nothing worked. Well, almost nothing…he lived in his swing. That poor swing went through so many batteries we really should have bought stock in them. My dad, a very devoted grandfather and Hawkeye fan had his own trick to get him to sleep. He would bounce him on his knee and sing the Iowa Fight Song….it was like the Heavens above had opened in song! If the swing was dead, it was to the knee we went. It was tough enough having Joe go through all these problems. Then I found out I was pregnant again when he was 8 months old!
Joe was almost nonverbal until the age of three; and the words he did know were really difficult to understand. He started speech therapy, but I knew before long that something else was wrong. Everything in me knew he had Autism.-You know-that really big, scary “A” word. I noticed his lack of eye contact, and his inconsistency of wanting and not wanting stimulation to his body. When Joe was five we received the official diagnosis. Even though as a mom you know your son has Autism, to hear it from the doctor is surreal. To this day, I have a hard time saying my sons are Autistic. I can say they have Autism, but not that they are Autistic.
We had barely gotten Joe diagnosed when we started to notice problems with our second son, Matty. Matty is on the spectrum but is the opposite of Joe in many ways. He has uncontrollable anxiety and explosive disorder, which greatly affects his life and ours. In some ways, this makes him more challenging than Joe. Lately it seems the word Autism gets thrown around quite a bit, and when people hear Autism most think of the movie Rain Man: spinning endlessly in circles, flapping arms, and lining up perfect rows of cars. This does not describe my boys. Yes, they have Autism, but they look “normal.” You wouldn’t know just by looking at them that they have Autism. I like to call this The Many Faces of Autism. There is no one face or look to Autism. Autism is an individual disorder. Just as different we all are from one another, so is every Autism.
Many times people with Autism are more in tune with their senses than those without Autism are. For instance, Joe needs constant pressure on his body, he wears a stocking cap all day in school, he sleeps with 6 blankets on or with his weighted blankets. His body doesn’t regulate temperature the way we do. It will be the hottest day of the year and my son will be outside digging, wearing his wool stocking cap, full sleeved under armor shirt, and jeans. On the coldest day of the year he has his shorts on with a light sweatshirt….he doesn’t feel the cold temperature as we would. This can be very scary if I don’t pay close attention.
Because of this sensitivity, stores are never good. You must come absolutely prepared. When we shop as people without Autism, we are not aware of the buzzing lights above, the clanging of the carts outside, the cash register constantly beeping, shelves being stocked…too many things to even list. A child with Autism hears all of these, but amplified by fifty. It’s overwhelming. It’s stressful. It’s pure pain for them to go through. If you already have a difficult time talking, how do you express this pain you are going through? One of two things usually happen: a complete meltdown or he puts his head phones on and focuses on nothing but the phone. I know my exits, I know where the bathrooms are, I know where the book aisles are in every store. We go in knowing exactly what we are getting and how long we will be in there. We set the timer. My phone battery is ALWAYS fully charged. I believe in giving my boys the tools they will need to suceed. I want them to know they can do things just like others, they just need to find a way to help themselves. I tell them that I will not always be there to do it for them. This is why I have taught the boys to put on the headphones, and get things ONLY on the list.
No matter how prepared I am, sometimes the outbursts still happen. People stare to see what the commotion is all about. It’s ugly to see as a shopper; it’s even uglier as mom. You hurt for them. When people see this they feel its their place to tell me how to parent them. It’s when I hear these ugly comments towards my boys and I that I see the need to break the stigma of Autism. Teach people to not judge by just what you see because there is always something more that you can’t see. People just don’t understand what Joe and Matty deal with on a daily basis. Or what our family goes through as a result of these trips.
When our sons got diagnosed I had know idea what to do next. Where do I go, who do I see….what is my next step?? I felt so lost. It took me years to find help, and I am still looking. I really want to ease some of the burden for other families. So I have been working on an information packet for my community called the Next Step Project. It will list all the doctors and therapists who treat Spectrum Disorders in Johnson and Cedar Counties, as well as a few in Iowa County. It will list their specialty, what kind of insurance they take, explain what a medical waiver is and if you need it, the different kinds of therapy and what is the difference in a IEP vs a 504 plan. You have to become as educated as you can about your child’s diagnosis to best serve them and yourself. I want to save a family time because time is so precious with Autistic children, so precious.
To raise money for this project and raise awareness about the many faces of Autism, I am hosting a 5k FUN Run/Walk in my hometown of Williamsburg this Saturday, April 26th. The money I am raising will help with the Next Step Project information packets that schools will be able to give to parents if asked. Money raised will also go to help schools get the proper therapy materials to help a child get through a school day without disruption or distraction. Therapy items include Weighted Vests, Weighted Lap Blankets, Chewy Tubes, and many other items for children of ANY disability to use. The race begins at 9:30 a.m. at the Williamsburg Town Square. Race-day registration is available beginning at 7:30 a.m. You can still participate by attending in your best BLUE OUTFIT and registering that morning. Cost is $30, and you will get a t-shirt after the run if we run out that morning. Questions about the run? Contact Kari Kueter: [email protected] or on Facebook (click link for more info).
Thank you for letting me share our story!
**Special thanks to Kari Kueter for sharing her perspective with us today! If you’d like more information on Autism, be sure to visit the Autism Speaks website.
Awesome Kari! I loved reading your post.
Thank you for your post. My daughter will be 7 in a couple of weeks and she was diagnosed with Aspergers and anxiety when she was 4. She is high functioning but I totally know what you mean about trying to go shopping with a spectrum kid. She also does not feel the cold, could ony sleep in the swing as a baby, and we have a weighted vest and lap pad for her. She reads at least at a 4th grade level but has the emotional and behavior level of a 2 yr old. It gets very frustrating because she is so smart and to others se looks totally normal. I love your idea of creating a comprehensive list for other parents, I know I could use one.