‘I don’t know his favorite color. He can’t tell me. I’ve grieved. Imagine not being able to communicate?’: Autism mom describes highs and lows of parenting, ‘He makes me a better me’

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“He is my miracle boy. I wanted more than anything to be a mother and after nearly 2 years of fertility issues, I was blessed with Graham. I had gone to an esthetician for a facial and before starting, she asked me if I was pregnant. There were ingredients in the treatment that could possibly be harmful to a baby. I told her I was late, but I wasn’t pregnant. ‘Wouldn’t I know if I was pregnant?’ I asked her. She insisted I find out for sure before doing the procedure, and so I left her office annoyed as I headed to purchase a pregnancy test from the drug store down the street. I remember taking the pregnancy test and not really even paying attention as I awaited the results. I had taken countless tests, and they were always negative. I nearly fell over when I saw that positive sign, and after a few minutes of squealing and jumping up and down, I drove straight back to the drug store to buy more. I was so elated but also incredibly anxious. I was terrified of losing this sweet baby I had fought and prayed so hard for.

Courtesy of Leah Debity
Courtesy of Leah Debity

Despite my fears, I had the perfect pregnancy and uneventful labor, minus the 2 hours it took to push out his head. His cry was like music to my ears, and as I held him to my chest, I couldn’t stop crying. I thought my heart was going to burst from my love for him. I just kept saying, ‘I love you! I love you so much!’ I had no idea just how fierce that love would become.

Courtesy of Leah Debity

The first 8 weeks of his life were a blur. He was extremely colicky, especially in the evenings. He woke up more times than I could count during the night, and he nursed around the clock. The exhaustion of a needy newborn, recurring mastitis and lack of sleep wore on me. Around 4 months postpartum, I finally accepted I was dealing with postpartum anxiety and sought help. Thankfully it was around this time he seemed to be calmer and settled. We were finally getting into our groove. Life and motherhood felt a little more manageable as my little baby grew into a toddler. He was always off the growth charts, hardly ever got sick, and met all his milestones early with the exception of talking. He was a joy, easy-going, and content as a toddler. I never once worried about him struggling. In fact, I still feel a rush of guilt sometimes when I look back at old videos and pictures. ‘How did I miss the signs? Why didn’t I notice anything unusual?’ I thought.

Courtesy of Leah Debity

At his 2-year check-up, we decided to pursue an evaluation for speech and developmental therapies. He was significantly behind. The few words he had said at that point, I felt like I was reaching for them if I’m being honest. In those early days, I was in tears during every single evaluation and therapy session. I was really pregnant with my second son at this time. Between my hormones and my nerves, I was a hot mess mom just trying to make sense of everything that was going on. It felt as though my son was being held under a microscope, and I hated it. It felt like the weight of the world was on me. Everything was so new and foreign. I felt clueless and like I was a failure. ‘How did I not see that my son was struggling?’ All of a sudden, I wasn’t sure how to parent my own son.

Courtesy of Leah Debity
Courtesy of Leah Debity

I remember the first time one of his therapists had spent time with him, and she kept comparing him to her son who had autism. She also continued to make comments about his sensory seeking behavior. I thought she was crazy. ‘He’s got a lot of energy, and he’s a boy! She just met him! How dare she put labels on him when she doesn’t even know him!’ I thought. I’m not sure if I was ignorant or in denial. Maybe both.

Courtesy of Leah Debity

My hope was after we started therapy and with time, the words would come but as time passed, more questions and concerns arose as we became aware of his needs. He made very little eye contact, didn’t respond to his name, didn’t follow commands, and constantly sought for sensory input through spinning, chewing, or being upside down. I realized and accepted we were dealing with more than a speech delay. Since then, we have added feeding therapy to work on sensory aversions, occupational therapy to work on fine motor skills and sensory processing needs, and developmental preschool where he gets socialization in a classroom setting. I wish I could say getting him all those services was easy. My husband and I have spent hours upon hours advocating for Graham with countless emails and phone calls with our insurance company. Graham is worth the fight, and we will continue to do whatever we need to do to help him.

Courtesy of Leah Debity

Our most recent battle was concerning a communication device to assist him in communicating his wants and needs. We had tried many other forms of communication and nearly 2 years of speech therapy at this point, and he was still not yet verbal. My son needed a way to communicate, and this device was the next step. Though my husband and I could usually figure out what Graham needs, it was harder for his teachers and others. Can you imagine being hungry, thirsty, or needing help and not being able to communicate that? He needed a voice and with the help of his speech therapist, pediatrician, and his daddy and me, I’m happy to say his communication device arrived a few weeks ago. He’s really mastered the ‘want’ button on his device, and we’re all grateful for that, especially him!

Courtesy of Leah Debity

There are some extremely hard things we have walked through together. Watching his little brother surpass him in some areas stings. I have seen his baby brother take on the big brother role, and it’s bittersweet to see their unique relationship form. I worry about his future sometimes when it seems as though he’s getting left behind. I watch friends his age having funny conversations, riding bicycles, and playing superheroes. I can’t help but wonder… ‘Will he ever get to drive? Graduate from high school? Or fall in love? What will happen to him when I’m gone?’

Courtesy of Leah Debity

He doesn’t play little league. He can’t tell me about his day. I don’t know what his favorite color is. He doesn’t ask me 1000 questions a day like most 4-year-olds do. I feel like I can never let my guard down because I am constantly observing him to make sure he’s safe and his needs are met. Many times I have to play detective to figure out why he’s upset because he can’t tell me. I don’t leave him often because I worry he won’t be able to communicate what he needs to whoever he’s with.

Courtesy of Leah Debity

I’ve grieved all of that. There’s a process of letting go of what you thought your child’s future would be and accepting the gift you have been given. His life really is a gift to the world even if it’s not exactly how we would have pictured it. We don’t focus on the negative. There’s so much good to be seen. It’s easy to find the good in things when it comes to Graham.

Courtesy of Leah Debity

The other day we were spending some time together, and as his big blue eyes met mine, I said, ‘I love you!’

He then replied, ‘I luh la.’

I couldn’t believe it! There have been times Graham has repeated words and then we never hear them again. They leave almost as quickly as they come… giving my brain whiplash, like, ‘Did that just happen?’

Courtesy of Leah Debity

This moment was so amazing, and something I have dreamed about since becoming his mother. I thought I would feel different after hearing him say those words, but I didn’t. His love for me didn’t change because he has loved me all along. And he shows me in ways that really do mean more than words. It’s in his eyes, his smile, his kisses, and his big squeezes.

Courtesy of Leah Debity
Courtesy of Leah Debity

It’s moments like these that make me grateful to be his momma. I wouldn’t trade him for another kid out there. He is pure joy. He makes me a better me. He shows me what it’s like to really live. He softened my heart and opened my eyes to the world around me. I see the good in people because of Graham, and it is a wonderful feeling to know your child is loved and accepted as they are. These people are Graham’s safe place. I’ve also been fortunate to meet many amazing warrior moms in the special needs online community. We have a bond that cannot be understood by most, but these mommas, they get it. They cry with me, laugh with me, and encourage me through the ups and downs. Their strength inspires me, and I’m blessed to call them friends.

Courtesy of Leah Debity

Motherhood was a great awakening for me. Add in special needs motherhood and you can multiple that awakening by 1000. It’s humbling and eye-opening. It’s a call for compassion, empathy, and realizing you could just as easily be in someone else’s shoes. It’s understanding how blessed you are and finding the good even in the bad. It’s learning you’re not in control and learning to trust.

Courtesy of Leah Debity
Courtesy of Leah Debity

Growth through motherhood is painfully beautiful. The learning, the adapting, the changing… it hurts. It’s messy, but it’s needed. Being Graham’s momma saved me in many ways. Everything I do for Graham is to help him communicate and feel his best. We will never stop advocating for him. In the midst of helping him find his voice, he’s helped me find mine. He’s taught me more about life and love than anyone else in this world, and for that, I will forever be thankful for my miracle boy.”

Courtesy of Leah Debity

This story was submitted to Love What Matters by Leah Debity. 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.

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