It’s 10pm on International Autism Awareness Day. The last thing I should be doing right now is writing because I’m dog tired. Tired from working longer hours than maybe ever in my lifetime, both professionally and personally. Like everyone out there reading this, I’m sure. But then again, it’s totally normal for me to be writing after the rest of my family has gone to sleep, especially since the world closed down. I haven’t been sleeping well, or at least I haven’t been able to fall asleep easily. My mind wanders, and despite my best efforts of redirection, meditation, mindfulness, or just thoughts of peace, it’s impossible for me to push the worries from my head. I spend my days managing two little beauties while fine tuning remote learning schedules. Preparing meals and snacks, entertainment and activities while responding to thoughtful questions about next steps and attending virtual meetings with my faculty. All in a day’s work I suppose. But at night, my mind goes to many other places, mainly to the world of my baby girl. High functioning Autism is a strange world to which one can acclimate. Once you find yourself in a groove, something comes out of left field and it’s almost impossible to know how to react, and I’m not even referring to an international pandemic. A number of weeks ago, it was decided that Clara would actually “graduate” from receiving 1:1 services because she has not only met but surpassed all her goals. And while that’s something to celebrate, much like the public school’s finding of ineligibility for special education, it’s also really difficult to process.
I’ve read in a number of places that “mild Autism” doesn’t mean one experiences Autism mildly but rather others experience their Autism mildly. We don’t know, and this is the part that kills me the most, how hard they’ve worked to get there. Clara, as many of you know, would be easily described as a mild case of Autism. She recognizes feelings and emotions, she’s compassionate, she seeks out social interactions, and she’s fairly intuitive. As her mother, I chalk a lot of that up to the services that she has received. Her 1:1 intense ABA therapy, along with speech pathology and developmental specialists along the way, taught her how to speak. That’s how she learned to interact with others, how to pretend, how to think outside the box, how to request her needs and wants, and how to identify those of others. It’s how she learned her colors, her numbers, her letters, her words. It’s how she learned to take turns, to tolerate “no,” to use the potty, to dress herself. Yes, we of course supported all of those things in many, many ways, but I firmly believe in the deepest part of my heart, that Clara would not be where she is today without the support of these wonderful service providers who have become family. And now, not only are we faced with an international pandemic, but we are also faced with the termination of some of her services. Once the world re-opens, so to speak, Clara will continue to attend a weekly social skills group where they will focus on recognizing peer cues, initiating peer conversation, and a 2+ volley of peer conversations. And maybe that will be enough. And maybe, it won’t be. Maybe this international crisis that can be prevented only by distancing ourselves from all other human beings will be detrimental to my baby girl. Maybe she will slightly regress like all children are bound to do, or maybe she will regress tenfold. Or more. Maybe when she returns to school, or summer camp, or ballet class, she will have no recollection of how to interact with others, how to think outside the box, or how to request what she needs. Maybe the time we’re spending inside these walls pretending and building tents and playing dominos will be enough to keep her head held high. And maybe it won’t be.
Clara is now receiving ABA services through Telehealth which means a few times per week, she meets with an ABA therapist and her BCBA. If you’ve ever known a three-year-old, you can probably imagine how well that is going based on her attention span of sitting in front of my computer. Actually, in my opinion, it’s going better than expected. But with the growing number of COVID-19 cases, it is not likely that we will return to in-person services before her discharge on May 5th. And so, here we stand. In our living room, on a computer screen, talking about animals and shapes, numbers and letters. And here I sit, now at 10:30pm, overthinking and worrying, dozing and dreaming. I know in my heart that Clara will be okay, however you define that term. I know this because of the obvious reason that she is amazing. She has adapted and overcome more in her three years of life than I ever would have expected. I also know this because she has an amazing support system of family, friends, and service providers. I know that when we do step outside our home and venture out into the public eye again, if and when we notice anything of concern, she will be right back where she needs to be before anyone can really blink. I know this because I live this. Whenever there is a need, a deficit, a hey, I wonder if that’s normal…, we jump. It’s what parents do, whether their child has high-functioning Autism or anything else that requires jumping.
And so, I end this evening’s thoughts with a huge shout out to parents, and particularly to those who are homebound in the world of Autism. None of us ever expected to be living the reality that we’re living. No one ever thought they would be “homeschooling” while working full time- either from home or on the front lines of essential work. Yet, here we are. It’s hard, seemingly impossible, actually. But this too shall pass. If everyone in your home is physically well, then count your blessings. If you know someone who has fallen ill, please know that I am sending my prayers, positive thoughts, and blessings to you and to them. Hug your babies when they wake up in the morning, no matter how old they are. And be thankful for all they can do. Breathe through the meltdowns. Bask in the laughter. When they’re sleeping, peek in. Believe me, watching a tiny human’s chest rise and fall can wash away a lot of anxiety. I haven’t quite gotten to the point of watching non-tiny-humans, but based on this motherhood thing, I assume it probably has a similar effect. Because these humans are our babies. They are made from us. They are us. Clara, in all her glory, sass, struggles, and joy, is me. She is my husband. She is her sister. In a way, we all have Autism, because we all live through Autism with her. And while I will spend the rest of my days trying to understand even an ounce of what she has to fight through to present in the ways she does, I will always promise to understand that she does fight, and ultimately, I will see that she wins.
