Today was a tough day. Actually, today, thus far, has been largely delightful, amazing in moments, playful and spontaneous in others, with an epic meltdown thrown in. Somehow, a really tough 90 minutes quickly becomes, “I had a tough day.” I’m guessing I’m not the only one who will brush over a whole day because of some hard minutes or hours.
Though sometimes, tough is really tough.
Yesterday, we celebrated the 5th birthday of our youngest. She is our preemie, and so her birthdays always bring both great joy, and painfully remembering her traumatic birth and first month in the NICU.
Tomorrow, our preemie heads off to kindergarten. She also has Autism. After three years of Birth to 3, special-ed preschool and time with typical peers she’s ready for her mainstream class, we believe (and hope). Today, she reminded me what Autism is all about at the end of 90 minutes of trampoline fun. She wanted to go into the one space she was too young for, and could not accept “no.”
There are many challenges associated with Autism, one of which is trying to decipher in any given moment, “is this behavior developmental, or Autism?” Upset because she can’t go where she wants to go: developmental; throwing herself around the floor, not able to breathe, risking life and limb (hers and mine) to express herself: Autism. When the answer is developmental, we are usually a little more strict, we uphold high expectations, we see her through without letting her “play us.” When it’s Autism, we try to identify the need and quickly meet it. The hand-dryers are on in the bathrooms: we cover her ears and escort her out. Meet the need: over-stimulation and unwelcome sound that is painful to her: MAKE.IT.STOP!
Today, however, it was a double-whammy. She wanted to play where she couldn’t, yet she didn’t at that moment have the skills to manage it. My first step is safety. I try to keep her head from making contact with the cement floor. I wrap her up in a sensory hug. I absorb the thrashing as much as I can until she’s done. This time, I needed help to carry our things so I could get her out to the car. Thank you for the help of strangers who knew I was struggling, and didn’t judge.
Right now, she’s fine, lying in her bed NOT taking a nap. I am spent, physically and emotionally exhausted from the experience. And yet, her quick recovery reminds me of what is so truly important, her resilience. New things are hard for her; even when they are welcome, even when she can do it and even when they are fun. New sometimes means that her sensory needs are heightened or that she is over-stimulated more quickly and easily. Yet, she will come back to center, every time. My daughter is 5, and in a surreal, powerful, and beautiful way, I trust her. I always trust that she’ll come back to center: grounded, and perhaps even with a new skill. Even more, she’ll come back to center as spirited, beautiful, loving, playful and inspiring as she has always been. Yet, I’ll appreciate it even more, because I’ll be reminded how much it takes, and how hard she works to keep her amazing essence.