‘How do you know what Brayden wants when he doesn’t communicate?’ You have to listen with more than just your ears.’: Mom shares son’s autism diagnosis

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“The world knows autism exists, but so few in the world understand it. I saw something once that said, ‘If you’ve met one person with autism, you have met one person with autism. There are no two people alike.’ 3 years ago, I was one of those people who knew autism existed, but I didn’t know much beyond that.

Brayden was born in September of 2017 during Hurricane Irma. I’ll never forget watching the lights flicker and wondering if the hospital was soon going to look like a scene from the Wizard of Oz. Brayden’s delivery went smoothly. Right when he was born, my delivery team all said, ‘Oh my goodness, he’s a toe head.’ I quickly responded, ‘What’s wrong with his head?’ If you’re like me and thought this meant my son was born with a toe for a head, you would be incorrect. Brayden was born with the brightest white-blonde hair. He was absolutely perfect.

Megan Stillson Photography

Flash forward to 3 weeks postpartum. My husband was a high school cross country coach at the time and he was at a meet a little over 2 hours away. We were still new to the area we were living in at the time and about 2 hours away from any family. I started to experience intense pain in my back, so I called my mom to see what I should do. Even as an adult, you never stop needing your mama. She told me I needed to find someone to take me to the hospital as soon as possible. The problem was we didn’t know many people because we hadn’t been living in the area very long. I called the one friend I had made and thankfully, her husband was able to drive me and my 3-week-old baby to the hospital.

Megan Stillson Photography

When I got to the hospital, I told the person at the front desk, ‘I don’t know what’s wrong with me, but I just had a baby and whatever pain I’m experiencing is worse than childbirth.’ They soon discovered I had a kidney stone. About a week later, I had surgery to remove the stone. All this was very hard on my mental health. I was no longer able to breastfeed, which was something I had my heart set on. I felt like I was failing as a mom. I became depressed, but I got the help I needed and tried to be strong for my son. Postpartum depression is real and it is so important to seek out help if you need it.

MG Photography

Being a mom was something I had dreamed of for such a long time. I had always worked with children in some way, whether it was working in a church nursery, babysitting, or working in an afterschool center. Prior to having Brayden, I had been around children since I was a child myself. I have very clear memories as a preteen begging my mom and dad if I could help on Sunday mornings in the church nursery instead of going to service. Because of all the hands-on experience I had, I felt I had a good idea of when milestones should be met, and if they weren’t met, when I should start having concerns.

Courtesy of Colleen Taylor

Our concerns initially started when Brayden was not walking at 15 months. At 12 months, we were told to give him a little more time but when he still wasn’t walking at 15 months, we wanted answers. He did finally start walking at 16 months. I always joke and say he skipped walking and went straight to running, and he hasn’t slowed down since. We did start early intervention services at 15 months, as well as speech and occupational therapy. This was when the word ‘autism’ started to be thrown around.

Something else happened when Brayden was 15 months. We found out we were expecting baby number two! Surprise! So, on top of fighting to get a diagnosis for Brayden, I was now pregnant with his baby brother. When Brayden was 18 months, we were given something called the MCAT. This is a checklist typically given to every child around this age, to see if there is any risk for autism. Brayden scored high-risk. We were then referred to a developmental pediatrician. We were told we would have to wait anywhere from 8 months to a year, or possibly longer to be seen.

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I think the question I get asked the most is, ‘What were the signs that first led you to think Brayden has autism?’ So many people told me I was crazy or, ‘He is still so young, give him time.’ While that might be true in some cases, I knew in my gut something wasn’t right. Usually, a mama’s gut isn’t wrong. One of the early signs we noticed was him not responding to his name. At one point, we thought something could be wrong with his hearing. Another sign was hand/arm flapping when he got excited. This was something we thought was a cute little quirk he did; come to find out, this is called stimming. Stimming is a way he self regulates. Another was a lack of language. Brayden babbled as a baby, but he never spoke words. He had a loss of skills. Brayden used to wave, play peek-a-boo, blow kisses, and at some point, he lost all of those skills. Little to no eye contact, not playing ‘appropriately’ or ‘pretend playing’ with toys— these were all things we, and his therapists, noticed at an early age.

While we waited to get in to see the developmental pediatrician, we continued to receive early intervention services. All his therapists agreed, Brayden is probably on the spectrum. I called the developmental pediatrician’s office monthly and at one point, weekly, until we got on the schedule.

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In September of 2019, 6 days after Brayden turned 2, I was induced at 37 weeks. I was having weekly ultrasounds at this point because the baby was measuring small. At one of these routine ultrasounds, I was told, ‘You have no more amniotic fluid and need to have this baby today. Drive yourself straight to the hospital and tell them you are there to be induced.’ Um, what? This was, of course, a surprise to me. We were already dealing with an emotional time in our lives as my husband’s grandmother had just passed away the day before. But, I got in my car, called my husband to tell him the news, and drove myself to the hospital. I had another smooth delivery. So smooth the doctor didn’t even get to the room in time. A nurse delivered our sweet baby. I didn’t know I had any more love in my heart to give until they placed Jensen into my arms.

MG Photography

We finally were seen by the developmental pediatrician in January of 2020. We went into this appointment already knowing what the outcome was probably going to be, so we had time prior to this to process and learn more about what autism is. This is a huge piece of advice I would give if you are waiting for a diagnosis. Most people wait months to years to be diagnosed. In that time of waiting, use your time wisely, and learn all there is to learn about autism.

Courtesy of Colleen Taylor

This first appointment was a consultation appointment to see if a diagnosis appointment was necessary. This appointment went well. It was full of so many questions. Questions at that point I could answer backward, standing on my head, and in another language. Maybe a bit exaggerated, but if you’re a parent of a special needs child, especially in the early stages of being diagnosed, you understand exactly what I mean. One of the questions asked at this evaluation was, ‘How do you know what Brayden wants when he doesn’t communicate?’ I remember answering, ‘I just know.’

Courtesy of Colleen Taylor

If you spent a full day with Brayden, you may find him ‘challenging’ to understand. When in reality, he’s quite simple to understand. You have to listen with more than just your ears. At the time, he didn’t take my hand and lead me to what he wanted. He didn’t, and still doesn’t point to things he wants. He doesn’t vocalize his needs. He doesn’t respond to simple commands like, ‘Go get the ball,’ or ‘Where is Daddy?’ or ‘Throw the paper in the trash.’ If you spend enough time with Brayden, you’ll find that he’s really quite simple to understand. You simply have to stop trying to understand his differences and embrace his differences. Another thing mentioned at this appointment was how happy Brayden is. This is so true. He’s so happy. He smiles 95% of the time.

Courtesy of Colleen Taylor

Brayden has already taught me so much in his first several years of life. Listening with more than just my ears is probably the most valuable thing he has taught me. One month before a global pandemic hit, Brayden was diagnosed with Autism Spectrum disorder. Looking back, I am so thankful for that. Otherwise, we might have waited months before getting a diagnosis. A diagnosis is just words on a piece of paper, but those words can open up so many doors for a child.

Courtesy of Colleen Taylor

Our family is firm in our faith. I honestly don’t know how we would get through each day without God and the support of our family and friends. But even with that in mind, I’m still human. I’d be lying if I said I wasn’t angry with God after our son was diagnosed. I’d be lying if I said I didn’t cry; I still cry some days. I’d be lying if I said it wasn’t hard to see other children meeting milestones and Brayden falling more and more behind. I’d be lying if I said I wasn’t afraid of what the future looks like. I’d be lying if I said I didn’t get overwhelmed. I’d be lying if I said I didn’t feel guilty or I feel like I was the cause of Brayden’s diagnosis. Guilt is something I think I struggle with the most.

Courtesy of Colleen Taylor

I have a genetic condition called Neurofibromatosis Type 1. I passed this genetic condition down to both Brayden and Jensen. Since Brayden’s diagnosis, I have learned autism and other developmental disorders are 40% more likely in people who have NF1. I sometimes think, ‘If I didn’t pass down NF1 to Brayden, would he still have autism?’ But listen, as I tell myself, you can’t have those thoughts, or think like that. Autism is not anyone’s fault. It isn’t something to be ashamed of or something bad. Autism doesn’t define a person or what they will become. I wouldn’t change one thing about Brayden. He is who he is. He was created in God’s image and God makes no mistakes.

Courtesy of Colleen Taylor

Accepting an autism diagnosis is something that can take time. There isn’t anything wrong with that. Take the time you need. Get help, find support groups, seek out people who understand what you are going through. Doing this is what has helped me more than anything else. Brayden has been through more in his short life than some have been through in a lifetime. Brayden is strong, he is tough, he is brave, he is joyful, he is smart, he is important, he is kind, but most of all, he is so loved. Brayden is only 3.5 years old and we are still new to autism. With age brings new challenges. We have faced our fair share of challenges throughout this journey, and with age will come new challenges. But we will never lose our faith in God and we will always be Brayden’s biggest supporters.”

Courtesy of Colleen Taylor

This story was submitted to Love What Matters by Colleen Taylor from South Carolina. You can follow their journey on Instagram, TikTok, and Facebook.  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 powerful perspectives from special needs moms:

‘Please be able to talk to me one day.’: Mom to son with autism says ‘he is truly perfect’

‘If I close my eyes and listen to this song, all my sadness goes away.’ A stranger decided to send a surprise in the mail.’: Mom details stranger’s act of kindness for daughter with autism

‘There will be days you will hit rock bottom.’ I wish they asked about our support system. But I wish they would’ve finished with, ‘It WILL be okay.’: Mom to sons with autism says, ‘It’s challenging, but beautiful’

‘DON’T let it hurt him like it did your brother.’ I can still smell the hospital and hear him cry. My son would be SUCCESSFUL.’: Sister of brother with autism becomes single mom to special needs son

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