‘All babies are different,’ he assured us. I was a new mom. I didn’t have any basis for comparison. With just a few words, my heart shattered.’: Mom shares son’s autism diagnosis, ‘I follow his lead’

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“My name is Desiree and my husband’s name is Aaron. I grew up in the city with my large family of five siblings, and my husband grew up in a smaller town with two siblings. My husband is a carpenter by trade and I work for my family business (wedding and event planning). We met in 2012 through mutual friends at a graduation party, but we had known each other for a long time. I was instantly attracted to his kindness, friendliness, and we had a lot in common. From then on, we were inseparable. He is the calm to my crazy! We were married in 2014.

Courtesy of Desiree Buehler

At the beginning of our marriage, we were unsure if children would be in our future. After a PCOS diagnosis when I was 18, Aaron and I were not sure if we would even be able to have children. I was told, ‘You have a 10% chance of getting pregnant naturally.’ After 3 years of enjoying married life and all the adventures, nothing could prepare me for the next one.

I found out I was pregnant. I was SURPRISED, but so so so overjoyed. I frequently took pregnancy tests just to be safe. It was a Monday morning before work, and I was just almost on my way out the door when I thought I might as well look, just in case. The first positive pregnancy test I’ve ever seen. After a large freakout, I gathered myself and headed to work. I didn’t want to tell anyone before I told my husband, so the day went by so slowly.

Courtesy of Desiree Buehler

I was anxiously awaiting Aaron to come home from work when he finally arrived. He was barely through the door when I blurted out, ‘You are not going to believe this, but I’m pregnant.’ Aaron immediately didn’t believe me, and I had to get another test to prove it was true. After the realization this was real, we were overjoyed and celebrated. As most of our family and friends knew of our uncertainty of even being able to have children, they were just as shocked. That made for our pregnancy announcement to be quite the event.

My pregnancy was very typical with no complications, but when we got to the last week, I learned I had high blood pressure and protein in my urine, so they told us, ‘We want to induce you.’ I was alone for this appointment, so hearing that as a first-time mom was quite scary. I immediately called Aaron and he was nervous but supportive. He had confidence in our health care professionalsthey knew exactly what needed to happen.

Courtesy of Desiree Buehler

After 2.5 days of waiting to get called into the hospital to get my labor started, we got the call. We quickly got all our things together and rushed out the door on a Friday afternoon. After they broke my water, they wanted me to walk around the hospital to get the contractions going. What felt like forever was only 2 hours of walking aimlessly around the quiet floors of the hospital. My labor was progressing but at a glacial pace. By Saturday night, I was exhausted. I had not had a good night’s sleep since Wednesday’s check-up when they told me they were going to induce me. During my labor, our baby’s heart rate was fluctuating, and I’d have to flip from side to side, and then they found out our baby was posterior.

Finally, after trying to flip our baby to get him in a good spot, I made it to 10 cm but I was falling asleep in between the doctors talking and asking me questions. After a lot of contemplating and discussion, we made the tough decision to have a cesarean. This obviously was not what I was hoping for, but we just wanted our baby to come out safe and healthy. Our son, Sullivan, was born on a Sunday in December 2017.

Courtesy of Desiree Buehler

Sully was the best baby. He was easy-going, happy, and perfectly healthy. We knew we had it good. He slept through the night at 3 months and ate like a champ. As an infant, I noticed Sully seemed to be looking through me while breastfeeding or over my shoulder instead of AT me. His eyes never seemed to focus on me or my face, but as a new mother, I didn’t have any basis for comparison, so I didn’t immediately recognize an issue.

Telina Fishback Photography

At each of Sully’s routine check-ups, my family doctor hummed and hawed about some of his missed milestones, but he reassured me all babies are different. They develop at their own pace, and nothing major seemed out of sorts. It wasn’t until his 18-month check-up my family doctor began to talk more seriously about his missed milestonesspecifically his lack of eye contact and the fact he didn’t seem to respond to his own name. I really appreciated our family doctor taking his time to evaluate and make the right call for Sully.

Courtesy of Desiree Buehler

At that point, we were referred to a pediatrician for further evaluation. After a handful of visits with our new doctor, he wasn’t convinced of an autism diagnosis, so we tried some practices and methods at home in an effort to improve things. We also had his hearing checked to try to rule that out. Armed with our at-home exercises, we began to notice improvements in Sully, but over time, he plateaued.

Courtesy of Desiree Buehler

In April 2020, our doctor delivered the news we had been hoping we wouldn’t hear: ‘Your son has level 3 autism.’ With just a few words, my heart shattered. A few words left me riddled with worry for Sully’s future. I wondered, ‘Will he ever lead a ‘normal’ life? Have friends? Get married? Learn to speak?’ After I composed myself enough, I called Aaron. He was distraught. Even though we were mentally prepared to hear this diagnosis, it still hit us like a ton of bricks. Leaving us feeling helpless. We asked ourselves, ‘Why Sully?’ Suddenly, everything I envisioned for my child’s life went out the window. Thinking about how he would approach the world being ‘different’ seemed so scary. Life is hard. Going through life being different from everyone else seemed IMPOSSIBLE.

Courtesy of Desiree Buehler

I have definitely grieved the loss of my vision for Sully’s life. His diagnosis felt heavy and so very permanent. What we’ve learned in the 6 months since we learned his diagnosis is the autism spectrum is vast and varied. After time and much discussion, Aaron and I came to the conclusion this doesn’t change the way we love, care, or dream for our sweet Sully. Through continued therapies, I have hope Sully will continue to improve and thrive. Certainly, the amount of support and resources available to families like ours has helped us to feel less alone and has offered some glimpses of hope for Sully’s future.

Courtesy of Desiree Buehler

Our friends and family have also been a huge source of support as well. I texted my closest friends with the news and exactly none of them were phased. We know they will continue to love and support Sully and us through whatever we need. Through all of the well-wishes, texts of support, and offers to help, my mother’s words stand out more than any others: ‘We needed Sully in our family.’ We all needed to invite a little more patience, understanding, and empathy in our lives. Sully is our little reminder to do so.

Courtesy of Desiree Buehler

Fast forward to the present day, and we have already been greatly proven wrong by our smart, funny, affectionate little boy. He is now saying over 20 words and is using sign language like a champ. He thrives on routine, so once we found a routine that worked best for our little family, we were set to keep climbing the ladder. I just want every autism parent to know there are beautiful, amazing adventures beyond the diagnosisin the beginning, it doesn’t seem so close, but it will come. Always know you are never alone.

Courtesy of Desiree Buehler

Our journey with autism has demanded I adjust my parenting style to be more patient, flexible, and agile. To grow with Sully’s needs instead of trying to impose my own. I’ve learned to follow his lead, let him explore on his own terms, and, above all else, to be his refuge. His safe zone to come back to. Every. Single. Time.”

Courtesy of Desiree Buehler

This story was submitted to Love What Matters by Desiree Buehler of London, Ontario. You can follow their journey on  Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

‘I can only do so much.’ It’s just the two of us. One day, I won’t be here. Who will tell her I’m gone? Who will make sure she’s safe?’: Autism mom shares daughter’s journey, ‘I’ll let her lead the way’

‘Her cries sounded painful. ‘Did she nap today? Do you think she’s hungry?’ But I knew it wasn’t that.’: Mom navigates daughter’s autism diagnosis, ‘I’m so proud to be her mama’

‘His teacher handed me a whiteboard covered in symbols. ‘He’s writing in Japanese.’ We were mind-blown.’: Mom describes son’s autism journey, ‘He’s different, not less’

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