Editor s Note: April is Autism Awareness Month. In honor of this occasion, the Journal asked Kelley Beck to share her family’s story. She, her husband Matt and their three children live in rural Hecla.
“If you’ve met one person with autism, you’ve met ONE person with autism.” Unknown Autism is a spectrum disorder, meaning people who are diagnosed are affected in a variety of different ways with a variety of severities. Our son Austin, who is 15, was diagnosed with autism just after he turned three.
April is autism awareness month, so I’d like to share some of how autism looks at our house. I should add that autism is just one battle Austin fights. He was diagnosed with a genetic disorder called tuberous sclerosis complex (TSC) when he was 9 months old, and often times kids diagnosed with TSC will also have an autism diagnosis.
Whenever I think about Austin’s autism, sensory seeking is the first thing 1 think about. He runs, jumps, climbs, moves, and makes noises constantly. Sitting still is very challenging for him and therefore, taking him places is very challenging. If you see him hitting his ears, spinning objects in front of his face, or making a variety of noises he’s trying to fulfill his sensory needs.
If you come up to visit with him, which he loves, he might grab your hand, pull you close to his face, and steal your hat or whatever you may be holding. It’s uncomfortable for us when he’s grabbing people as they walk by and we try to anticipate what/who/how he may grab, but he is fast!
Oral aversion. Austin has struggled with eating his whole life. I’ve often joked that I wish I didn’t like to eat as much as Austin doesn’t like to eat, but it’s not a joke. Eating is a vital part of life and watching your child struggle with something that should be so simple and natural is very difficult. Thankfully, Austin has a gtube so we can push meds, fluid and food through his tube.
There are prepared meals that we can buy that are made to be pushed through a g-tube, but they’re expensive and the company that I found only has six meal options. 1 decided I could give Austin more variety so I make most of his meals with a ninja blender. This adds a lot to our meal prep and meal time, but I feel good knowing that he’s getting good nutrition without the battle that eating is for him. Early on we just knew that the g-tube was temporary and now 1 can’t imagine Austin will ever be without it.
One of the things that is always exciting when you have a child is when they start talking. Unfortunately, we are still waiting and hoping for the day we can share conversation with Austin. He attends a specialized school and is working on learning to use a communication device. At home, we depend on his ability to point to objects, his noises and nodding yes or no when asked what he wants. There is lots of guessing, lots of anticipating and lots of frustration while trying to figure out and meet his needs.
Austin has no concept of safety or danger. He has to be watched all the time. He loves to be outside, but doesn’t recognize the danger of the street, cold weather, hot weather, water, waiting or all of the other things that may cause him harm.
What can we expect for Austin’s future? 1 wish I could answer that. 1 think about all the things that Matt and I just know; his mannerisms, his noises, when his gtube needs to be changed and how to change it, what meds we can utilize for severe behaviors and seizures, how we have to cut up the food we give him orally, the one cup he’ll drink from that has to contain the one thing he’ll drink, what shoe brands fit his oddly shaped foot, when meds and other supplies need to be refilled, what appointments are needed and when, how to make sure everything is in place with the insurance, convincing him to sit down in the bathtub, and the list goes on.
Watching your child grow up should be exciting, but when your child has profound disabilities and medical complexities, it is scary and worrisome and filled with anxiety. Scary to think about what would happen to Austin if something happens to us? Who can ever know everything we know? Who will make sure he’s safe? Who will love him like we love him?
We would never claim to be experts in autism, but we are experts in Austin and we will hold on to the HOPE that he will always have people in his life that are positive and optimistic and want him to have the best life he can.
