We live in an age of fear-based parenting. Everywhere you look, you can find information about all the ways you can destroy your child. With the power of the internet, social media, and late-stage capitalism, our village has, in many ways, been replaced with an overwhelming amount of unsolicited advice on how to parent properly and what products one needs to do it. This fear-based marketing and language only intensifies if your child is neurodivergent.
Before my children were born, I devoured parenting books and researched every car seat, crib, high chair, teething ring, and baby item I put on my carefully planned-out registry to the point of obsession. I still remember breaking down the night before I was to go to the hospital for my scheduled c-section, terrified that the fact that my child’s nursery was not yet Pinterest-perfect was some sign that I would be an utter failure of a parent.
I was so afraid that one little mistake on my end would upturn my child’s existence and cause severe trauma mentally, physically, or emotionally. Every book, blog post, and article in a parenting magazine seemed to reinforce the idea that danger lurked around every corner. I remember reading that failure to sleep train would set my children up for a lifetime of poor sleeping habits and, in the worst case, cause death in one book. Then, reading another that said that if I didn’t use attachment parenting, co-sleeping, and anticipate my child’s every cry so I met the need before they cried, I would cause severe emotional damage at the very least and death at the worst.
Every topic I found had conflicting information, and if you read long enough, the results of not following said author’s advice would be the death of my child or severe trauma. Whether it was to circumcise or not, bottle or breast, supplements or not, crib sleeping or co-sleeping, the temperature of the nursery, or the brand of car seat I bought, it seemed there was no way to get it all right.
My first pediatrician was no better, shaming me for my decisions. She once went so far as to lecture me that juice was a gateway to soda and worse drinks that would rot my children’s teeth, give them diabetes, and lead to obesity. I was giving said child juice because they refused all other liquids and had just gotten out of the hospital for severe constipation involving four impactions.
Of course, there are the developmental milestone checklists. By a specific time, a child should roll over, sit up, say their first word, stand, walk, and read. If they do not hit these milestones, they may not go to college or get a high-paying job, or they may…. gasp…. be an adult who never leaves your coach.
When my first child received an autism diagnosis at 2 1/2, I had to stop reading it all for a while. The articles on how I had either already or would soon destroy my child were endless. Was my anxiety and depression for fear of losing the baby or getting it wrong to blame? Was it the vaccines? Did I feed him the wrong thing? Did I wait too long to start therapy? Would he die of drowning or wander away from me at the supermarket and never be seen again? Would he ever be able to hold a job or make a friend?
I will never forget one therapist sitting in my living room and telling me that my child needed 40 hours a week of therapy to learn all the things that other children would learn naturally. She then told me that if he did not answer 200 questions daily and greet people with eye contact and a smile 55 times a day, he would never be able to hold a job, make friends, or marry. He was 3 years old at the time.
I have a degree in early childhood education, specializing in child development for children ages birth to age 8. Everything this woman told me went so far against what I had studied that my heart was breaking. My degree said children needed unstructured play in an environment rich in language, stories, love, and nurturing. Yet these experts were telling me that because my child was different, he did not get to have a childhood. He had to work. They had only covered autism briefly in my program, though, so maybe I was wrong; they were the autism experts, after all.
I think this experience tipped the scale for me and helped me find my voice. The therapist who told me all this specialized in Applied Behavior Analysis (ABA). At the time, and still in many cases today, ABA was considered to be the gold standard in Autism therapies and came strongly recommended by my First Steps coordinator, a program in Missouri for families with children under the age of 3 with disabilities. In recent years, however, ABA has come to be under controversy, with many people within the autistic community going as far as to call it abusive.
I am not here to speak on that. However, I can share that the principles behind it are based on the psychologist Ivan Pavlov’s research from the late 1800s to the early 1900s. Pavlov is most famous for a study where a dog was trained to salivate at the sound of a bell, expecting food. His theory proposed that humans are born as blank slates, and behavior is learned through positive and negative reinforcement from our environment and caregivers.
As I listened to this woman, I was afraid that if I didn’t do what she said, I would ruin my child. Then, I remembered a general psychology class I had taken years before, in which my instructor introduced Jean Piaget and Pavlov, who promptly told us that we could disregard both theories as we had come a long way from there. We now knew that humans were more complicated than either man had realized. Humans are capable of thought and emotions and are a product of neither nature nor nurture but a complex web of both.
At that moment, I found the strength to listen to my heart and explore other options for my child. For what if, as theorists in the early 1900s believed behaviorism was the end all say all of human psychology, ABA was only the beginning attempt to understand the complex and beautiful minds of the autistic community, and new therapies were emerging that would eventually render it a relic of the past.
Thus, after one of the most brutal years of my life, I embarked on a journey and found there were other options. First, the Early Start Denver Model (ESDM), then the Greenspan Floortime Approach, and later, Relationship Development Intervention, which I was lucky enough to find locally. In my research looking for alternatives to ABA, I found tidbits of information that reminded me that just because someone is an expert in their field, it doesn’t make them an expert on my child or what works best for my way of parenting and our family’s beliefs. I learned it was okay to say no to an expert and keep looking until I found the right therapy, school, and people to work with our family. It was not only okay but crucial for my mental health and the well-being of my children.
Looking back now, I can examine all of the different therapists and how my son reacted to each one. I can see now that he had been telling me all along the ones who respected him and those who did not. He was smart enough to see who he could trust and couldn’t, who cared about him as a person and their relationship, and who was too busy focusing on meeting an objective and collecting data to see the child in front of them.
I can see how he kept people he did not trust in his peripheral vision instead of making eye contact, a skill I learned humans were born with, as our peripheral vision is better able to detect movement and threats. Or remember that he often lay on the ground rubbing the carpet when he worked with a therapist who tried to control the play and had a clear objective for the session. He looked other therapists in the eye, sat up, and engaged them in meaningful conversation, making jokes and playing when they met him in his world and showed a genuine interest in him. He cried when those relationships inevitably ended and grieved the loss of people who had become his friends.
My son is in seventh grade now and far from perfect. We recently changed schools after I realized that while he had many people who cared about him at our old school, he was not getting what he needed to be successful. The decision and transition were painful and heartwrenching, but the results have been really good, and I am optimistic about our future in our new learning community. As we navigate the world now and explore his younger sisters’ differences, I still have days when I doubt myself and struggle with which experts to listen to. The difference now is that I know that I am the expert on my children and my family, and I get to listen to all the information out there, then listen to my heart and my children and find what works for us.
I no longer allow people who do not respect my children as individuals to work with them. Whether they show that disrespect by seeing a lack of eye contact as defiance, refusing to give reasonable accommodations, insisting they learn social skills without recognizing that it is just as crucial for their peers to learn social skills and how to communicate with them, or by not challenging them to reach their full potential. My children deserve to be seen for who they are, both their strengths and their challenges.
They deserve to work with people who focus on building their strengths through nurturing relationships while helping them have the support they need to overcome challenges or find ways to work around them. They deserve to work with people who care more about them than any number on a chart or test score. Teachers and therapists who assess them regularly and use the results to guide their teaching, but above all, take the time to get to know my children and guide them with love and caring, looking at the vast array of best practices and curriculum resources and selecting the ones that fit for them.
Most importantly, I have learned that making decisions based on fear tends to lead one down the wrong road. Instead, I am learning to find a calm place and give myself time and the gentle reminder that there is no magic timeline when it is too late to make a difference or switch paths. When I feel overwhelmed, I remind myself that my steps need not be big to take my family where we need to go. Our journey doesn’t have to look like anyone else. These reminders allow me to make decisions based on thoughtful reflection and a careful review of the information. It allows me to slow down, think about what my heart is telling me and what feels right, and know that if nothing feels right, I have not found the answers yet.
My mother recently encouraged me to share my story. At first, I told her no, I am not an expert, and my children are not grown. I am still in the thick of it, trying to determine if my actions are correct. All that doubt and uncertainty came up. Who am I to share my story? Then I thought back to that young mother who had just gotten her degree in early childhood, who had been a nanny for years and helped with younger siblings, nieces, and nephews. That young girl who everyone said would be a wonderful mother. They told me it would be easy for me, but they lied. Those first few years were terrifying and brutal, and I constantly doubted myself, feeling like a complete failure. Afraid to listen to my voice or what my heart told me.
So here I am, writing down my truth and sharing it with whoever is listening. I’m hoping it will find someone who will benefit from hearing it. I hope it will empower someone else to know they are not alone. If you are that person, know you are doing better than you think. Love is a powerful force for motherhood. If you are loving your littles the best you can, which if you are here reading this, I imagine you are, then you are giving them a great start. Have faith in yourself and your children; they are surprisingly resilient and have been overcoming the mistakes of imperfect parents for centuries. You have got this.
If you are reading this my first entry, I would love for you to comment below and say hello. I am still determining where this blog will go, and I would love to hear about the topics you want to hear about or are passionate about.