Mama Said

IMG_2693.jpg

On Our Own Journey

By Jennifer Martinez Belt

Imagine this scene:  My son, Thomas, his third pediatrician and I sit in an examination room to discuss how he is doing with his development. Thomas is 18 months old.

Pediatrician: “I am going to say a word, and you will be OK. Your son will be OK. It will all be OK. Are you ready to hear the word?”

Me: Does the word start with the letter “A”?

My son, Thomas, affectionately known as “T,” was officially diagnosed with autism spectrum disorder at age 3. There was very little explanation when we received the actual diagnosis, but we did get a really cool folder with a bunch of different fliers and pamphlets about services, almost like a welcome kit. Informational kits aside, now our family was in a Brand New world, navigating new twists and turns while learning a Brand New map.

There were obviously signs that led to his diagnosis. T didn’t have words, he didn’t like to play side by side with other children, and loud noises bothered him. He was a picky eater and couldn’t stand the tags in his clothing. One thing or another could explain all of these signs away, but something inside me knew the reason, even before the official diagnosis. I wasn’t sad or scared, I was simply ready to take this challenge head-on, determined to travel down the path of the unknown. 

My husband and I did the “how did this happen” game for about a week. Which family carried an odd gene? Did I drink too much Starbucks during my pregnancy with T? And then we put that “game” away and we both jumped on board and started to investigate how to find the care he needed. The why didn’t really matter.

I had heard of almost every disease out there but not much about autism. You see, autism is NOT a disease. You can’t catch it from the water cooler, you can’t drink expired milk and contract it. It is a condition. This condition changes the way those on the autism spectrum communicate with others and how they are able to adapt to their environment. It is estimated that 1 in 59 children are affected in the United States. Honestly, all people on the autism spectrum have different abilities, and while there are similarities, it is not a checklist of conditions that everyone struggles with in the same way.

Autism is a way of life, it has its own logo and awareness month, a signature color, ribbons and buttons. There are support groups, online blogs, books, help hotlines and much more. Other parents with kids on the spectrum are hard to find in person, though. You have to really dig to find other families, so we relied on family and friends to connect us to new networks.

While autism brings many differences to the table, it also brings some super exciting ways to put things into perspective.

I am a parent, just like you. T goes to school, just like your kids. He might sit in a different classroom, but he is in the school. He might need encouragement finding the right word to say, but he will speak. T loves to swim, dance and be outside. He loves watching movies, going out for pizza, and has a wicked sense of humor. He laughs at a good joke and cries when he or someone he loves gets hurt. He will race you to the swings and always win, just like your kids. His differences kind of make him just like your kids.

I decided that the diagnosis wasn’t going to control our future. Autism is different but never less. Instead of looking for losses, I decided to look for the wins—and the wins look different for every family. We celebrate the big and the small victories like trying something new to eat, sleeping in our own big boy bed and wearing a Halloween costume for the first time.

I didn’t set out to be a spokesperson for autism, I just learned to advocate for my son. Just like you for your kids.  I try to help others embrace all kinds of differences, and choose to focus on the joys of this unexpected journey. The map and directions continue to change, but this is a journey I would never change.

Jennifer Martinez Belt is a professional fundraising consultant and CEO of Martinez Belt Consulting. She is a Fort Smith native and graduate of the University of Central Arkansas. She and her husband, Scott, reside in the Heights with their children, Sloane and Thomas.