My Son Is Not A Diagnosis, An Understanding Of Neurodiversity

positive parenting 

By Ashley Patek

Make It Stick Program

“I will never forget the day the pediatrician told me that my son had autism”, says Rae B., mother to a 14-year-old daughter and a 12-year-old son who has Autism Spectrum Disorder (ASD), ADHD, anxiety, and speech apraxia. “The tears flowed down my cheeks as I questioned what kind of road he would have. He was considered ‘too bright’ for our special schools here in Australia, yet he was behind the standards for mainstream school. I tried to look ahead, but in the moment, it was hard to see far past the present.” 

Feeling lost and scared, Rae was uncertain of her next steps but she was assured of her unwavering love for her child. “I wasn’t sure what I could do to help my son but I knew I could walk with him on his journey, to understand him, and advocate for him. This took my whole heart, and all of my focus, for years. There were so many misconceptions to overcome, and so much energy expended in helping others understand that a tablet, a behavior plan, or a reward system would not make my son ‘normal’,” shares Rae.

Understanding Neurodiversity

Neurodiversity is a concept that communicates that diagnoses such as ADHD and autism are not ‘abnormalities’ but rather variations in the human brain. This shift in mindset, which is backed by neurological imaging and science, can help families and children frame their challenges as differences rather than deficits, and focus on the unique gifts within each child. 

When discussing autism and brain development, research has shown that these brains have increased neurological connections and synapses. So, if a neurotypical brain has 100 highways, an autistic brain has 1,000. Rather than viewing this as “wrong” or “bad”, it can be seen for what it is, a unique lens in which to view and interact with the world. Everything is brighter, louder, more intense, and details can sometimes overwhelm the big picture. As all people have differences, autism is one thing that makes someone who they are. 

According to the CDC, in the US, one in 42 boys and one in 189 girls are born neurodiverse. And for a world designed for the “typical” mind, it can be challenging for these families to find equal rights, support, and accommodations. Simply put, it can be demanding to have a brain with 1,000 highways in a world built for 100. Seeing and honoring the whole child and whole environment is paramount in meeting each child where they are to further cultivate the unique architecture of their brains. 

A Mother’s Journey 

Being a mother to two, Rae admits that the challenges did not only come in the way of her son’s path but with her daughter, too. “In the depths of my heart, I felt that our daughter was becoming the ‘other child’ - the easy-going one who missed out on attention because I was focused on supporting the needs of her brother. It felt like the oxygen had been taken out of our relationship. I wanted - needed - to find a way to mother both of my children.” 

This is when Rae found the Make It Stick Program (MISP). MISP is an eight-part online positive parenting series that covers everything from self-care to regulating emotions for families with neurodiverse needs. “The secret sauce to showing up intentionally day in and day out was to educate myself, and that is exactly what I did.”

Rae learned that the foundation of parenting starts with the parent. “One of the first things I learned from this program was actually about me, not my kids: self-care. And not in the form of bubble baths to solve my problems, but self-care in the form of self-compassion. It became clear to me that the well-being of us parents is of paramount importance to the long-term success of our kids, no matter the neurotype.” 

She shares further, “I quickly realized that I was suffering from ‘decision fatigue’ and needed to create simple systems and routines to save our sanity. I felt relieved when this course was free of the usual ‘should’, ‘have to’, and ‘need to’ phrases that I had come accustomed to, especially since diagnosis day. I was finally being guided by a strong dose of practicality and empathy for our lived experience.” 

Rae embraced a new mantra that changed her household. “Behavior is communication! Isn’t that brilliant? Through MISP, I learned how to be an observer of my children and to be curious about their unmet needs or lagging skills so that I could model, guide, and teach them in ways that spoke to their developing brains. Instead of focusing on undesirable behaviors, I was given tangible tools to widen my toolbelt and be with my children in all mood and behavior states.” 

Studying emotions in a non-judgemental way has filled Rae with hope. “I finally feel that I can truly model being human - releasing perfection - to show our kids that adults are capable of growth and change, too. It isn’t just them who are working on their emotions and behaviors. I am both a teacher and a student. Having a framework for developing a relationship with both of my children uniquely has been immensely worthwhile. I have come to realize that my children’s diversity is what makes them who they are, and I love just that.”

A Holistic Approach To Neurodiversity

Using what she has learned through MISP, Rae encourages a holistic approach to being with and honoring each child. “Professionals have come a long way in their advances of understanding gut health and other implications of brain development, yet there still seems to be a large focus on the child’s perceived deficits. This approach really ignores the need for holistic training across many areas that can launch each family onto their own paths of discovery.”

“Improving a child’s skills so they can be more mainstream will not change who they are - it will not change who my son is. I encourage that we get to know our children, become curious about them, and then understand how to support them, not change them. We are all on the path less traveled, but we can walk together,” encourages Rae. 

Rae shares that the benefits of neurodiversity are becoming more commonly articulated and celebrated. “The lens is starting to shift. Our children are not a diagnosis, they are human. My son has thoughts and feelings just like the rest of us, he just thinks differently. In the quiet of his heart, he loves fiercely. He is loyal, kind, and thoughtful, and where I once feared for his future, I now know he will thrive, not despite his challenges, but because of them.”

 

 

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