What I’m Learning About Autism, Parenting, and Us
I have been thinking about autism a lot lately. Not just because I work for MAC Midwest, but because both of my teenagers, 13 and 16, were diagnosed with autism in the past year. They also have ADHD. So do I, though I found that out a decade ago. My husband and I feel, at times, that we are not entirely equipped to parent these humans we created, seeing some of their needs as beyond our reach to meet as consistently as we would like.
I have had the opportunity on several occasions recently, running into friends and acquaintances with whom I share overlapping experiences, to both educate and be educated following their question, “What’s new with you? How’s the fam?” In these moments, I choose what to share, and I decide if I can hold whatever kind of reaction they may have. “AuDHD! Yeah, both kids, who knew?” But we did know. We knew something, anyway. We knew our children were struggling to exist in the world, despite being kind and interesting humans, bullied through grade school for their clothes, their interests, or the ways they express themselves.
I explain this is good news. We are understanding more about how their nervous systems are calibrated, which gives us better vocabulary to talk about our lived experiences. I explain that my kids have never been more capable of advocating for their needs. I explain the spectrum and our new normal: prioritizing regulation at every transition, for all of us. We have slowed our pace at home so no one has to feel bad about what they may need at any given time.
Sometimes this means lying on the floor next to a wailing kid because he cannot get what he wants, or cannot do the thing he needs to do, despite being able to do it on other days. I hear you, buddy. This is disappointing. Thank you for letting me know how you feel. I’ve got you. We can do hard things together.
These are the things I can say on my best days. My capacity, like theirs, fluctuates. It depends on sleep, hydration, remembering to take vitamins, and feeding myself well. I have been practicing my strategies for years, and they are just beginning to learn tools to make tasks more interesting or motivating. They need to be able to do the activity, and eventually, to know when to do it without prompting.
Daily nurturing, in any dose, keeps us growing at whatever pace we have. No one is behind.
This is what I want every parent on this path to know. We are all moving through a world where “typical” can feel like an aspiration, but it does not have to be the target. We learn to celebrate a tiny win and honor the enormity of a disappointment we may not fully relate to. Our stories are shaped by our support networks, our privilege, the services available where we live, and our family and friends’ comfort with our children, our choices, our routines. Our stories are strengthened by our ability to tell them.
One of my favorite things anyone said to me after I shared my kids’ diagnoses was, “Well, they couldn’t have picked better parents. What an honor.” I remind myself of that sometimes.
I had an incredible journey preparing to raise these two before I ever met them, learning so much I did not know would be so applicable in my parenting. It is an honor to be exactly where I am, positioned as an advocate and coach as they gain the skills they need to thrive as adults.
I am cultivating a powerful gentleness for myself and for the world. Because of my children, and for them, and for all our children growing up and daring to exist in spaces where they are sometimes made to feel they do not belong.
May we be people who help the world see them for the wonders they are.
Article by Sarah Monahan, MAC Midwest Director of SLP & OT Services
