When Parenting a Child on the Autism Spectrum, 'It Goes So Fast'
“What’s on your mind, Shari?” That simple question asked by social media each time I log in. Most days I ignore the prompt and post what I came to post and leave. Today, however, that simple question had me staring, stunned, by my reaction as tears spang uncontrollably down my cheeks. “It goes so fast!”
Those words. The ones we hear in the most mundane days, the ones that blur months and sometimes years together as one shmoo of a year/day. The words that held different meanings at different times in my early, naïve days of being a parent. The days prior to “The Day of Nevers,” when my husband and I were informed of all the things our firstborn “would never do” by a physician. Later that week our youngest joined us and we were officially a family of four. It seems forever ago and yet, wasn’t I just helping my oldest learn how to ride a bike last week?
“It goes so fast” takes on new meaning when you have a loved one who is neurodiverse. You start to hear about the cliff (the end of traditional K-12) and falling off said cliff. What will happen to him? Can we ever die? Yes, this is our reality and no, I have not found the fountain of youth and worry what would happen to him if we died earlier than 120. I could veer off the ramp and discuss the state of health care for every single one of us, but I will leave that for another day.
“It goes so fast.” One day you meet your precious, perfect child. The next you read a detailed and painful document relegating your child to missed milestones, unmet goals and a list of monumental recommendations that leave many parents crying in a heap of “what ifs.” And then, you stand up, wipe away your tears and look at the living embodiment of goodness, your precious, perfect child. Perhaps, if you are lucky, you pick up your phone and call that wonderful Speech Therapist you just met, the one who will become your lifeline, one of many such angels you will encounter on this journey. You sob to Debby while walking through Target with your newborn son (also crying) and you listen to her warm, calm voice say the following, “You need to remember one thing. He is the exact same child he was the hour prior to you hearing his diagnosis. That has not changed.” Life-changing words from a life-changing therapist!
“It goes so fast.” Wasn’t it yesterday I had that conversation with Debby? Or that we embraced our family mantra, “We will get there, in our time, in our way.” Tying shoes? Sure. By the end of middle school, he was a pro. Riding a bike? Check. By the end of elementary school, he was zooming through the neighborhood. Doing his own laundry? A master by High School. We got this! Being kind and loving? He was born this way.
“It goes so fast.” I recall our first IEP, the feeling of panic and dread at reading more reports with data on my perfect boy and his many missed milestones. I remember feeling as if I wanted to crawl into a hole as I read the projections of what my perfect boy would never accomplish. I have a hollow memory of someone asking my husband and I about our goals for him. I vividly recall us both saying, “Our son is one of the kindest, happiest people we know. We want him to learn and grow and our goal is to keep his spirit intact.” His 13 years of IEPs are a blur of pushing/pulling heart-wrenching reports and one constant theme always remained, that goal. To not break that amazing, warm, kind spirit.
“It goes so fast.” From Initial IEP to Notice of Exit-Summary to today, the last instructional day of high school. I did not once stop to think, they meant that it really goes so fast. . . until today. Wait! I felt so invincible. I was so naïve. It goes so fast; time is the only thing you cannot get back. Have I been a good enough parent to you? Have I done enough for you, to prepare you for the world? Can I ever express how sorry I am for every single mistake?
“It goes so fast.” “Don’t worry, Mom,” you tell me as you call yourself, with pride, “an adult newbie.” You tell me your hopes and dreams, to go to community college, to live on your own and find someone to love, to get a job. All the things Dad and I said we wanted for you; you are making happen.
“It goes so fast.” I sit in semi-disbelief as you sign up with the Disability Services Department at your soon-to-be college. I am in awe as you are invited by Cathy, your amazing Case Manager to present to the entire staff of your public high school about your experience in school. When we read the comments from the over 125 attendees, I nearly burst with pride. You, my tenacious, perfect child taught the educators in your school about neurodiversity and how they might best serve students in the future. You advocated for yourself and in that act, you paved the way for other students like you.
“It goes so fast.” Your undiminished spirit radiates to all who know you as an undaunted adult who is ready for what comes next. Being your mother has been one of my greatest joys and it is you who has taught me so much. You brought me back to my center and introduced a village of amazing therapists, teachers, tutors and extended family that have been your and our lifeline.
“It goes so fast.” Continue to fill your life with love and know you are loved. Whoever first said, “it goes so fast,” was not kidding. It absolutely does.