“The best description for our autism journey is a race for time. The time it took to understand what he needed. The time required for acceptance and understanding. The time it took for me to process the feelings I was truly having and channeling them into something positive.
Brooks was nearly two years old and really wasn’t talking. At the time, I had a really good girlfriend with a daughter one day older than Brooks. This little girl was talking up a storm. I remember a specific playdate when the kids could not have been much more than 18 months old, and his little friend said, clear as day, ‘BACKPACK.’ She knew what her backpack was. She knew what her backpack was for. And she had learned a new word! My son, at two, was maybe saying dada, mama, some version of car, and some version of dog.
I decided, ‘I’ll give him till three to see if he starts saying more words.’ I was hoping for a communication burst. However, by three, he really hadn’t made much more progress. His behaviors were starting to elevate showing frustration, as he wasn’t able to communicate clearly with others, and we were having more meltdowns and a difficult time consoling him. Meeting all his needs became tough. I remember taking him to our pediatrician, right after his third birthday. I told the pediatrician I wanted to have a speech pathologist look at his language skills to evaluate him. At the time, the pediatrician told me, ‘You could take that avenue, but I’ve never suggested it.’ I always thought to myself, ‘I think this is the right thing to do but why has nobody told me to do it? Was I supposed to know this already?’
I started down the road of getting him tested through child services programming in our school system. We had an evaluation at 3 1/2 years old where they told us, as a family, he was behind in all areas of learning and all areas of skills including OT, PT, and speech. Psychological testing did not qualify him on the autism spectrum so we were giving the very broad diagnosis of developmental delay. We were told he would start preschool with an IEP. We signed up for interventions both privately and through the school system, and we were on the road of special needs parenting. I still didn’t feel like I was doing a very good job. I felt lost and confused.
Actually, I was expecting our second child, my daughter Annie, at the time, and I remember breaking down. I didn’t know how I could be the mom Brooks needed, accommodate his delays, and be the mom my brand new baby girl would need. I cried really hard that diagnosis day in my kitchen on the tile floor. But I did what we do. I got up. I was going to take the next step.
We started preschool. He had great teachers. I met some of my dearest mom friends, still to this day, in those first preschool classrooms. These moms would become some of my best teachers. I watched these women parent issues I thought only I had ever seen. Two of these dear friends showed me what it looked like to advocate for and accept a diagnosis. But at this point in my journey, I don’t really think I was ready for fully accepting. Plus, I didn’t have a ‘real’ diagnosis. He only had a developmental delay. I know this is going to sound confusing but it is really difficult to explain what your child needs, what tools will work best, and which accommodations will be most successful when you are working with a limited amount of information and understanding. I started to dig, I started to read more books and blogs.
By kindergarten, the school psychologist suggested we do another diagnostic test for autism spectrum disorder. And I knew he would be on it. His preferences, his rigidity, his mannerisms, and his behavior struggles indicated he was most likely on the spectrum. I had this feeling of sadness yet relief I now had a name for all the things I was seeing in and feeling for my child.
Brooks has always been high energy. He has always been a bright light and he has continuously pushed me to try new things and do a better job at being his mom. I decided to get more information. I decided I would go to the best diagnostic testing area for autism in our state. It had a one and a half year waitlist. But I signed us up. IEP meetings, speech pathology appointments, and early education adjustments filled our life. I started to talk about autism a bit more with friends and family, but I still needed time. Then, at the end of first grade, we were told the general public education school system could no longer meet his needs. I had that feeling again because now, I was being told my son did not fit the mold, did not fit in, and, worse, was unable to be helped and taught by the school system. We were going to remove him from the general education setting and start from scratch to find a school that would best suit his needs.
I decided that same spring I would start running. And I was going to run longer, and harder, and faster, and stronger, than I had ever run before. I was going to be a long-distance runner. I knew could. I was already in my own sort of long-distance race. It was the one I was facing with Brooks. The one autism brought to my attention.
Luckily, we found a fabulous school where he started out in second grade. The fit was worth all the wait, hardship, and setbacks it took to get there. It was then I decided I was going to start explaining how I felt, why I was running, and my son’s journey, to friends, to my son’s friends, to my acquaintances, to the moms I knew through church, to my family, and even to strangers on the Internet. I ran my first marathon that October and immediately knew running was a passion in my heart. Long-distance training runs are a place for me to think clearly, a place for me to organize my thoughts, a place for me to take a short hiatus, and helped show me I truly was a strong mom. I fully attribute my success in the long-distance running to the perseverance I was taught by Brooks. He has met hardship with good spirits.
Brooks is never tired or sad for a long period of time. He bounces back from trials and he faces daily struggles. When things are hard for him to do, he continually persists until it becomes a more regular innate task. He is a kind and thoughtful big brother. He is nurturing. He is sunshine. He has taught me good things take time. I mean, I knew this as an adult, but watching him grow has been a picture by picture visual representation. When I had the opportunity to run a 50k trail race a few months after my first marathon, I was anxious but I loved it. I loved it because it is just so freaking hard. And it is just you. It is just you and this giant obstacle you’ve been working towards. That you alone are tackling bit by bit, minute by minute, and mile by mile. That is what autism feels like to me.
I signed up for and ran the 2019 Marine Corps marathon raising funds for Autism Speaks. That race was in the pouring, I mean, torrential downpour rain. I wore that Autism Speaks racing tank top proudly and ran the race without a running partner. I felt so proud conquering that race, like a warrior. I have continued to do other long-distance races and will continue to fundraise for Autism Speaks. My running has never been just about me. It has always been about awareness.
My autism journey, I’ve realized with time, is also not just about me. It is not just about Brooks. It is about the people we touch. The kids who are his classmates. His friends. The siblings of his friends. It’s about the connections I’ve made with other moms who have experienced similar circumstances with their children. Those who are in the throes of diagnostics, or in the steps of grief as we accept, adapt to and run our new race. Give yourself time. And give yourself grace. Know you will always be the parent your child needs. You will learn more tricks, nuances, and skills to manage the diagnosis. With time, your child might even start to surprise you on your journey.
Just this summer, my husband, Brian, suggested maybe I ask Brooks if he would want to go on a run with me. He is nine years old now. He’s talking. He makes his own choices. He is speedy playing in our yard. So, I asked him, ‘Do you want to run with Mom?’ ‘Yeah, sure.’ He got his music on. He has a little iPod shuffle. It is red because that’s his favorite color. And that day, I took him and we ran one mile. He smiled and danced and I had to remind him a few times about road safety. But I ran alongside him! And I felt so content.
When we ran our first neighborhood 5K together a few weeks later, pure joy. We sat on the deck afterward, with sweaty hair, eating pineapple popsicles. It is like I always knew; I had never been running any of this race alone.”
This story was submitted to Love What Matters by Allison Frels from Highland, Maryland. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more touching stories like this:
Do you know someone who could benefit from reading this? SHARE this story on Facebook with family and friends.