6 Things Being the Mom of an Autistic Child Has Taught Me


Once upon a time, I began to realize my amazing first-born stood out more than I thought. I knew he was special, with his infectious affection and incredible jump-up-and-down-arm-flapping excitement. I knew he saw the world with passion; he reacted severely both in joy and displeasure. I knew his heart was full and his mind was active, yet as he continued to grow, the development of his abilities was unlike other children. He knew his alphabet and numbers by a few months after his 2nd birthday, but he couldn’t string two words together. He could put together a 24-piece puzzle, but he couldn’t hear “no” without reacting with force, frustration and anger.

After my father visited and gently advised that I check, I read and read and didn’t sleep for days. I knew my son is Autistic. I also knew it wasn’t a tragedy. I knew it meant more effort to teach some things, but it also meant gifts, lessons and joy I wouldn’t know otherwise. Still, the reality of parenting can be filled with uncertainty.

So I continued to learn all I could, both about autism and about my son’s uniqueness. Most of all, though, I had to learn how to balance apparent opposites in my parenting and, honestly, in all other aspects of my life. I had to learn how to balance conviction and flexibility, discipline and gentility, endurance and self-care.

I realize all of us must learn this — it’s called virtue. It’s those habits of the mind that improve us, our relationships and our communities. It’s that life-long effort to overcome our weakness and impulsiveness in favor of prudence and consistency. It’s the gift of responding properly to those things outside of ourselves. And, of course, this is an obligation and a gift to all people, but having a child on the spectrum moved me with particular force to strive for virtue. Autism taught me about patience and endurance. It taught about conviction and fortitude because nothing will move us to get our act together like our children will. Moreover, in learning how to help my son with his areas of difficulty, I learned a thing or two about human behavior in general. So, for all of us who sometimes feel discouraged, exhausted or hopeless, here is what neurodiversity can do. Here is what autism taught me about virtue:

1. It taught me that every behavior has a motive and an end. It is not without reason.

Not unlike Aristotle’s account of personhood, applied behavioral analysis tells us that every act seeks an end, we get something out of it, we seek some good. With my son, I learned to analyze why he might rock, arm flap or express frustration. Whether it was motivated by seeking attention, avoiding a task, being over-stimulated, etc. The same is true for all people — we do things for a reason, we are motivated to achieve some good, so we act, we do so repeatedly and we become habituated to have certain responses. Learning about it taught me that I had options for coping with stress, communicating my concerns and avoiding harmful situations.

 

2. It taught me to be patient.

Teaching my boy not to be afraid of the toilet took us several months of desensitization, as did bath time, haircuts and other fairly common activities. Sometimes things that are easy for other people take me longer, too. It’s part of the human condition not to be great at everything immediately. Some things take time. The greatest things take time and effort. This teaches us gratitude, humility and fortitude.

3. It taught me to exercise self-care.

As parents, we sometimes forget that we too need care. Planning, observing and being super consistent sometimes results in unshaven armpits, severe sleep deprivation, poor eating habits, etc. I stopped being important to myself in the midst of caring for my children and my home suffered. We can’t serve the most important people if there’s nothing left in us. Caring for ourselves can be an act of humility, in accepting that we have limitations. Caring for ourselves is an act of love, giving those we serve the best we have.

4. It taught me to speak with conviction and not to be afraid.

I used to be afraid of hurting people’s feelings or of making them feel uncomfortable. I still care about not hurting people, but I care much more about forming a positive and nurturing environment for my children. It’s OK for people to see the world differently than I do, but if this worldview involves doing things that hinder the progress of my children, their trust in me or the peace we need to move forward, I am no longer shy about speaking up. Moreover, it is my responsibility to protect my children from all harm, so now I not only speak but actively exclude those environments that cause regression and anxiety in my little family. My babies come first. Just as my son can choose to lose screen time with his behavior, so can those around me lose the privilege of my children’s company with their behavior.

5. It taught me to be a mother.

Honestly, I really sucked at being consistent, disciplined and bold. Having to be up and about 24/7, insistent about what my children need, and having to apply principles consistently moment by moment, day by day, actually made me a better mother. I probably would’ve just winged it otherwise just because I’m naturally that disorganized. But now I even plan meals, shower daily, shave my legs and try to budget. I even find time to write about it now and again.

6. It taught me about my own Asperger’s.

Through observation of my own little Einstein, I saw so many oddities I engaged in as a child. I saw myself in many of his self-regulatory and repetitive behaviors. I saw myself in his sensibility, hyper-focus, and yes, in his intellectual ability. As I read, I learned about the “gender gap” in Asperger’s and autism and why autism can “look” different in women (and why we are grossly under-diagnosed). I will write more about it next time, but I must say now, it saved my life to know the “why” to so many things I wondered at (and disliked) about myself.

There is really too much to write that being Christof’s mom has taught me, but this is a short list to shout to the world that autism is not a tragedy and that it can teach us so much about our humanity. More so, it can teach us so much about being better at our humanity.

Follow this journey on Letters From My Bouncy Castle.

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Photo by Jose H. Guardiola, Jr.

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