Walking In Quicksand: How Autism Challenges Success

I recently discovered Ashlyn Washngton’s blog, Walking in Quicksand, and it’s brilliant. I am grateful to her for letting me share her post by the same name. I think it is the perfect sentiment to wrap up Autism Awareness Month. As the world turns off the blue lights and moves on, autism families go about their daily struggles. Her post is an encouragement to us autism parents – a reminder of what real success is no matter how we look to everyone else. And to everyone else – this post is a glimpse into our lives as autism parents. What we go through every day to keep our kids as healthy and happy as possible, no matter what the sacrifice. Please take that glimpse with you as April ends, and let it spawn kindness and compassion.

Walking in Quicksand

by Ashlyn Washington

As I prepared for my firstborn’s arrival, I had no doubt motherhood would suit me well. I had been taking care of babies since I was practically a baby myself and I adored kids. I’d easily managed the minor challenges I’d faced in my mostly charmed life. Hard work had always meant success, and I was sure parenthood would be no different.

It didn’t take long before I realized that was a fantasy. I had read all the parenting books and had even taught parenting classes, but I was absolutely no match for my colicky infant and even more out of my league as he grew into an incredibly spirited toddler. I vividly recall meeting my psychologist friend for a play date one winter day. For an hour, my son did nothing but attempt to smack her daughter. I was horribly embarrassed by his behavior. Finally we concluded it must be nap time. “Maybe he’s just frustrated he doesn’t have the language to say what he wants,” she hypothesized. And that was another thing. His development was stalling. He was falling behind in all areas despite our efforts. “I always can tell which parents are reading to their kids,” his speech therapist chided. I bit my tongue to keep myself from telling her where she could stick her self-righteous attitude. I had read to him a solid hour every day, literally from birth. At the same time, light started to bother his sensitive eyes and tags started to irritate his skin. This agitation coupled with me denying him whatever he wanted led to epic tantrums in grocery stores and coffee shops. More than once it was implied that we needed to brush up on our discipline and parenting skills. Evidence that we were dedicated parents was definitely not demonstrated in our son’s behavior nor his development.

Eventually, it became clear our son had autism in addition to many underlying medical issues. While his diagnosis changed everything in our little world, we received no free passes in the outside world and it surely didn’t erase the pervasive feeling that we were failing across the board.

As we chewed up our savings paying for therapy and medical care for our son, we were forced to borrow money from my parents. Proof that we were hard workers who budgeted carefully was not shown on our bank statements. We were decidedly not the picture of financial success or even stability.

As our married friends went on weekend getaways and Caribbean vacations sans kids to reconnect, we took shifts in my son’s bedroom so that we could each get a little uninterrupted sleep. While our neighbors went on dinner dates, we headed to therapy to repair the fractures in our marriage that had resulted from sheer exhaustion and a never-ending workload. Confirmation that we were soul mates who loved each other deeply was certainly not apparent by our frequent bickering. We were not the picture of marital bliss either.

Before autism, we made it to every family event. Remembered every birthday. Were only a phone call away for whoever needed love or support. After, we missed weddings and even funerals. There was nobody who could care for our son and the challenges of traveling with him and preparing allergy safe meals on the road were more than we could take on in our sleep-deprived state. The fact that we cared tremendously about our siblings, parents, and grandparents was not exhibited by our attendance at events that were important to them. The strength of our extended family relationships was nothing to celebrate anymore either.

As our neighbors carefully groomed their lawns and tended their flower beds, we set a goal of mowing the grass before it hit the eight inch mark. Our pride in ownership was clearly not on display when we received a letter from the homeowners’ association that our landscaping wasn’t acceptable. In yet another area of our life, we weren’t meeting expectations.

As my friends faithfully trained for half marathons and stuck to vegan diets, I hid in the pantry gobbling down graham crackers, too tired to make myself a proper meal after toting my kids to endless appointments and returning to cook all their meals from scratch. As my friends advanced in their careers, I threw in the towel. With an undiagnosed immunodeficiency, my son was too sick far too often to be in childcare and his needs were too great to be properly met by anyone outside of our home. In terms of self care, I was failing too.

Most of the time, I felt like I was walking in quicksand. Every single day was so daunting, so unpredictable, so endless. “I have nothing to show for all my hard work. All my dedication. All my sleepless nights.” I sobbed to my dad one night in the Target parking lot.

In time, I realized my ideas of success and failure were all wrong. While I had always been the antithesis of the “tiger mom,” I was judging myself as a mother by how happy, healthy, developmentally on track, and well behaved my kids were. I was judging myself as a woman by how often I made it to the gym and whether I’d remembered to put makeup on my tired eyes. As the mother of a child with special needs, the fact that I read to my son nonstop wasn’t reflected in his speech and language. Our gentle and consistent discipline was not reflected in his behavior. Our hard work both inside and outside our home wasn’t reflected by our clearance rack Old Navy gear nor our messy house.

It was humanly impossible for me to raise a child with special needs while maintaining a Pinterest worthy existence, so I had labeled myself a failure. Years passed before I recognized that as the parents of a child with special needs, our success cannot be measured by any outcome. Our success is measured by the process. It’s measured by the depth of our love for our children. In our home, it is measured by the hundreds of times we’ve enthusiastically joined our son in yet another passionate conversation about heating vents. It is measured by the thousands of nights we bid farewell to some peace and quiet of our own and lay encouraging our son as he battled anxiety and insomnia. It is measured by our patience as he asks his millionth repetitive “why” question of the day. It is measured by the soft zipper-free clothes we carefully select to keep him comfortable. It is measured by the meals painstakingly planned and prepared to give him optimal nutrition. It is measured by the money diverted from our retirement and into whatever intervention might make him a little more comfortable in his own skin. It is measured by the number of nights we’ve stayed up late with Dr. Google, sifting through research that might improve his quality of life. It is measured by the tears we’ve choked back as we’ve held his hand and encouraged bravery during yet another medically necessary procedure. It is measured by the anger we’ve hidden and the composure we’ve kept as we’ve carefully and respectfully disagreed with the steady stream of arrogant doctors, teachers, and therapists who thought they knew our son better than we did. It is measured by the number of desperate prayers asking God to please send our son just one friend. Just one. It is measured by all the times we’ve said no to other things so that we could say yes to him and yes to what really mattered.

As parents of children with special needs, the proof of our successful child rearing will never be in the flashy, easily observable things. It may not be demonstrated by any special talent, music or athletic ability. It might not be obvious on any report cards. Nobody will acknowledge it as we carry our screaming, flailing child out of a store.

We may feel we are failing as the preschool teacher calls to tell us we forgot to bring the snack, visitors arrive to find the kitchen in shambles, and our hair remains in a ponytail for months. But this is not the truth. The proof of our success as parents lies not in these things, but in the depth of our love for our children and in the mundane ways we show it each day.

“Even after all this time, the sun never says to the earth, ‘You owe me.’ Look what happens with a love like that. It lights the whole world.” wrote the poet Hafiz.

Tired and weary warrior parents, you are not failing. The depth of your love will be shown yet again tomorrow morning as you roll your tired bodies out of bed and rise with the sun to light up your child’s world. The depth of your love will be shown as you complete all the tedious and thankless tasks required of you. Quietly and without fanfare, you’ll succeed once again in the most meaningful and noble of ways.

Ashlyn Washington is a tired mom to two kids, one with autism and an immunodeficiency. She has contributed to the Huffington Post, Age of Autism, and Scary Mommy.  She loves espresso, April Fool’s Day, and yoga pants and lives for quiet moments when her kids are sound asleep instead of destroying her house. Read more on her blog Walking in Quicksand.