How Having A Neurodivergent Child Has Changed My Outlook On Life

by Sarah Loucks
Originally Published: 
A neurodivergent boy in a grey shirt and a cap walking with his mother

My dream of becoming a mom started with baby dolls. I had names picked out and throughout school, I took every child development class I could get my hands on. I read parenting books, babysat neighborhood kids, and even began working on a degree in child development. I was an expert.

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In my 20’s, I began to have my children. A few things didn’t go exactly how I planned but it was a smooth road. I breastfed, cloth diapered and made sure they had the recommended tummy time exercise. My oldest daughter was toilet trained at 18 months, we learned our ABC’s, and I applauded as my kids met every goal and milestone on time or earlier. School began and of course they were “A” students with spectacular behavior. I was perfect.

After my divorce, my perfect parenting continued just how I planned until a monkey wrench was thrown into my well oiled machine. I was unexpectedly pregnant. It was a dark time of unemployment, depression and poverty. It was an emotionally draining pregnancy and my planned out life became a mess. We hung on despite it all and a little 5 pound baby boy was born in August. I was scared, but I was a master by this point. I could do this with my eyes closed.

I knew something was wrong at home when his urine was orange, so we immediately went back to the hospital we had just came from. It was discovered that he wasn’t able to suck correctly. We spent a week dealing with a poor performing pancreas and blood sugar checks after every feed but we were able to work around it with special bottles and a state of the art breast pump. It was just a little bump but I could make it work. Pumping did not work however and I was devastated when my son began formula feeding. The changes continued from there and it was just the beginning.

He slowly approached milestones and seemed to have his own set of rules. As he grew from baby to toddler to preschooler, his differences grew. He was the most energetic person I had ever met. He was so energetic that he physically hurt himself from his behavior. He jumped off furniture, knocked books off of shelves and broke countless household items from rough play or pure destruction. As my older children continued to be awarded with Honor Roll and dazzle the crowd, my son failed to reflect my expertise. I didn’t understand. I fell off my parenting high horse and the fall was long, hard and painful. I had gotten it all wrong.

I learned that everything that I had thought to be important was actually irrelevant. My organic breastfeeding days were gone and I had a child that had sensory sensitivities. My concern over vegetables and sugar went out the window as my son resisted eating and would vomit if he didn’t like the flavor. I fed him anything he could tolerate. He was so active that he was physically incapable of sitting down long enough to eat so I resorted to strapping him into his high chair and putting him in front of the TV to eat.

He didn’t play with toys like other children. He smashed through the house like a raging tornado and I was certain would never toilet train. His speech was so distorted that I (his perfect mother) struggled to understand his few words and he was unpredictable around other children and animals. He required constant supervision far more than my other children. Inconsolable meltdowns became normal in our household, both his and mine, and my perfect parenting practices fell apart one after the other.

I was assured by other parents that he was “just a boy” and he would “grow out of it.” But as time went on, more red flags popped up and he continued to struggle to interact well with the world around him. Other children refused to play with him because of his impulsivity and he left a path of exhausted child care providers. He started preschool at 4 and I will never forget the look on his teacher’s face when I picked him up from school on the first day. I decided to take him to a psychiatrist.

The process of testing began as well as therapy and intervention. He began speech at school and his teacher gave him small goals such as sitting on the circle time carpet for 30 seconds. I had always been the parent with the “A” students so I had barely talked to my children’s teachers beyond a conference once a year. Now suddenly, I was talking to a teacher every day.

I had decided years ago that I wouldn’t medicate my children, but after a full school year in preschool with zero progress and a constant 1:1 behavior aide, I knew that we had to do something. We began to explore medication and other treatment options. Our household catered to his needs. We bought a sturdy living room set that could withstand his jumps and he began taking melatonin to help him sleep regularly. I learned to stop taking the lead and instead follow his. I learned to play by his rules.

I learned to stop trying to make him conform and instead, I conformed. The school granted an IEP and he continued working with an aide. I built a strong relationship with his teacher, therapists and psychiatrist. I reached out to local parent support groups and I joined online support groups. I let go and I finally started to learn how to parent the right way.

He is now six and I am learning more each day. He plays with his ears or flaps his hands when he is concentrating and clothing tags are like a cactus. We give transition warnings before any changes are made and he has a full book shelf for his collection of household items. His weighted blanket helps put him to sleep and I am certain that we have watched The Sandlot as a family at least 3,000 times. We are all learning.

Today was an awful morning so I cried on the way to school while his favorite song played on the radio so he couldn’t hear me. His hair hasn’t been brushed in two days and his shirt wasn’t buttoned but today was the first day he buckled his own seat belt. He had ice cream on his face but at least he ate. I’ve grown tired of his favorite song but he smiled when I looked in the rearview mirror. I’m growing.

I never thought I would be the mom to give her child cold hot dogs for breakfast, but here I am. I never thought I would be the mom to not care about academic success, but here I am. I’ve learned what is truly important. I have learned to follow instead of lead. I have learned that it’s not a competition. None of it is. I have learned that my children’s’ success is not the result of my parenting but rather their hard work. I have learned that “success” is different for everyone. I have learned that I really have no idea what I’m doing but I’m just guessing and hoping I made the right choice. I have learned to let go of the reins and to allow my children to grow in their own way, in their own time.

My son is growing more each day. He has a bumpy road ahead of him with different treatment options, accommodations and medical advice. I’m not sure what the future holds for us but I do know that I will be right there with him, on the sidelines, cheering him on as he succeeds in his own race, in his own way. I am so proud of his hard work and determination and I will always be there every step of the way.

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