My heart was shattered by autism on July 25, 2011.
“Your son’s delays are consistent with autism spectrum disorder, and we recommend you enroll him immediately in our intensive in-home autism preschool program.”
That word. Autism. Six letters punched me in my gut and knocked the wind out of me. The edges of the room blurred and the evaluator’s voice faded into static as my brain desperately tried to process this information. I nodded and appeared to listen, but I was frozen. It was like a movie where the character leaps and hangs suspended in perfect form while everything else continues at normal speed.
My husband Scott and I brought our son Matthew to be evaluated at our county’s early intervention school campus. Matthew was 22 months old. He had been a happy, outgoing baby; he started talking around his first birthday. I worried when his words vanished six months later. He began melting down in large, echoing rooms full of people and in large crowds. He stopped responding to his name and was happy playing alone as long as we’d let him.
Matthew’s behaviors raised alarming red flags and a cold fear settled into the pit of my stomach. I am a general education teacher, and in 2004 I wrote my master’s degree thesis paper on reading instruction for autistic children. I became fascinated by autism after having several students on the spectrum, and I intensely studied what was known about it at the time. This is why I recognized it so quickly in Matthew.
Even though I knew a lot about autism and taught autistic children, I was not prepared to hear that word used to describe my own child. I was confused about what I did wrong to allow this to happen. Had I missed some prenatal vitamins? Had I inhaled toxic fumes while we remodeled our house during my pregnancy? Did hitting his head as an infant cause damage to the part of the brain responsible for speech? I stupidly thought devoting my career to helping children learn would protect my own children from disabilities. Of course that is illogical reasoning; dentists can get cavities, oncologists can have cancer, and teachers can have children with special needs. Knowledge does not equal protection. However irrational it was, this false and naive belief intensified my grief.
Matthew’s days were immediately filled with behavioral, speech, and occupational therapies. His particular intervention program required intensive parent involvement; we found ourselves in a crash course of parenting a child with developmental delays. We learned to use icons to help Matthew communicate, activities and games to help him learn to follow directions, what his sensory needs were, and how to anticipate and respond to his frustration when he was not understood. Autism is a spectrum disorder with many subcategories of deficits and behaviors ranging from mild to severe; it doesn’t look the same in any two individuals. Therapy interventions felt like the “Whack-a-Mole” game we played as kids; we tried everything we could in this precious window of early intervention and desperately prayed our efforts would help the delays we already knew about and buffer against ones yet to emerge.
Autism was not part of my plan, and my organized and particular personality chafed against this unexpected detour. My older daughter Faith was starting kindergarten and needed me. I wanted to volunteer in her classroom on my days off and I still had my teaching career to tend to. I did not have time to drop everything and have therapists in our home five days a week. When I took Matthew to the park, birthday parties, church, or anywhere with children his age, I saw his peers flourishing in speech, responding to their names, following directions, and doing many other things taken for granted as developmental milestones. I felt sad, frustrated, and angry that wasn’t happening for Matthew and bristled at the unfairness of it all. These feelings quickly segued into depression. I scolded myself to end the pity party, to stop comparing him to others. I’d be paralyzed by anxiety and panic at the oddest times. One night in the shower, I felt crushed by thoughts such as “It’s time to wake up from this bad dream. I just can’t do this.” I reached my breaking point that spring and after talking to one of my pastors, realized I needed to stop suppressing my feelings and find a way to express and process them. I had to take care of myself in order to take care of my family. I started seeing a counselor for talk therapy.
My broken heart began transforming into Kintsugi. So many people poured gold into those cracks, so much that I had gold to share with other cracked hearts.
Our “first responders” were an incredibly gifted and caring team of Early Start professionals. They worked with Matthew and supported our family with a bottomless well of patience, sensitivity, humor, and compassion.
Our local family members mobilized to make sure we had our childcare and transportation needs covered. They were also grieving Matthew’s diagnosis but they all rose (and continue to rise) to his challenges with loving determination.
My church’s preschool bent over backward to include Matthew in a typical class two afternoons a week, completely covering the cost of a 1-1 shadow. The church’s special needs ministry was immediately there to support Matthew in Sunday School. Ironically, my interest in autism led me to help organize this ministry before it became a part of my personal life. I agreed to chair “Donovan’s Door” ministry for two years and connected with many inspirational families in our community. It was heartwarming how many youth and adults volunteered to work with Matthew and other children with special needs on a weekly basis and also at quarterly respite nights.
I’m a better second grade teacher because of Matthew. I considered myself a kind and caring teacher up until 2011, but autism opened my eyes wider to understanding children’s struggles and achievements. I know behavior is communication; this forced my patience to blossom in a way it could not have if Matthew could speak. My teacher experience with special education, Individualized Education Plans (IEPs), and the “system” helps me navigate them as a parent, and my parent experience helps me understand them as a teacher. I empathize with my students’ parents as we all muddle our way through trying to do our best. I know the fear of admitting something is “off” and the instinctual parent guilt we carry. Most parents appreciate how deeply I care for their children and feel we are a team. Their gratitude and trust humbles and reminds me why I teach, because that is how I feel about Matthew’s team. Many gifted and compassionate teachers, therapists, and aides have been part of Matthew’s village since our days in Early Start.
We benefit from living near two powerhouse autism research universities, Stanford and the University of California, Davis. Matthew received thorough testing and groundbreaking therapies for free that would have cost thousands of dollars otherwise. It feels good to know we are helping these dedicated doctors and scientists slowly piece together a complicated puzzle.
Friends showered us with words of support and offers of help. Anytime I share something about Matthew and/or autism on Facebook, the comments buoy my spirits. Autism brought new friends into our lives that we never would have met had his trajectory continued on the typical path.
I received the book Bloom by Kelle Hampton as a gift. Kelle’s second daughter was unexpectedly born with Down syndrome, and I was moved by her memoir about her grief of losing her imagined child and her path to finding beauty in a new reality. I started following her blog “Enjoying the Small Things.” A year later, I entered Matthew in Infantino/Step 2 Company’s 2013 “Everybody Plays” model search after Kelle blogged about her involvement in the campaign. Matthew won a spot in “Everybody Plays,” and my family flew to San Diego for the photo shoot. The whole thing was surreal and thrilling, from the modeling to seeing his photo in one of their ads. It was an honor to represent the special needs community with this toy company. But for me, the most valuable part was meeting Kelle. We had a strong connection in the short time we met and she injected my soul with resilience.
I also found an amazing blog written by Chrissy Kelly, a Fresno, California mom of two boys with autism. Reading “Life with Greyson and Parker” became a cherished part of my mornings. I felt as if Chrissy reached into my mind, took out the jumbled up thoughts, and transformed them into beautifully eloquent words. Her vulnerable honesty resonated with me so I reached out to her through e-mail. We corresponded and met in person a few months later. Before autism became a part of my life, I could not imagine connecting with unfamiliar moms online and drawing such strength and comfort from their witness.
Unexpected gold also seeped into my cracked heart. My husband and I had always dreamed of having two children. After Faith was born in 2006 and Matthew in 2009, we agreed our family was complete. As they grew, we gradually gave away or donated clothes, toys, and assorted gear families amass when babies come into the picture. I felt a blend of nostalgia and relief giving baby things away. I loved raising babies, but I was glad to be done with the nausea and discomforts of pregnancy. I happily welcomed full nights of sleep back into my life and I looked forward to the day when we were done with diapers. When friends teasingly asked me if we wanted more children, I’d laugh yet firmly say, “NO!”
Two years into our autism journey with Matthew, we saw that for all his progress he was still nonverbal and considered on the “severe” end of the spectrum. My husband and I considered the benefits of another child in our family. We painstakingly discussed the “what ifs” and decided to try. After one miscarriage, I carried a healthy baby boy to term and he arrived after a short labor on June 25, 2014. We chose the name “Tobin” for our third child, meaning “God is good.” Toby completes our family; I cannot imagine us without him. He is full of love, joy, curiosity, energy, and personality.
My dear friend Michelle, the author of this blog, helped me make the biggest breakthrough with Matthew. When she was at my home one day I said something to Matthew and she gave me a surprised look as she exclaimed, “I just heard him answer you!” If you are choosing to read this, I am going to assume you already know about Michelle’s incredible gift of communicating with spirit and know the authenticity of what she does. I had never considered that she might be able to communicate with a nonverbal living person, and I am not sure she had either! She later came back and listened to Matthew respond to questions I asked. I was moved to tears by the deep feelings, wisdom, and tenacity of my precious son. I got a glimpse into what it is like for him to live with autism; I learned how to better meet his physical and emotional needs. I know he is all too aware of what goes on around him and he can pick up on nonverbal cues and feelings better than most “normal” people. People sometimes talk about Matthew in front of him like he isn’t there or doesn’t understand; I think it’s a false assumption that a nonverbal child doesn’t “get it.” That drove me crazy anyway, but Michelle’s reading of Matthew lit a fire under me to be an even better advocate for my son. Matthew is smart, he is caring, and he feels everything so intensely that he has had to devise coping strategies just to get through each day. Those behaviors may seem odd to the untrained eye, but they all serve a purpose.
Above all else, Matthew knows he is loved. Words seem inadequate to express my gratitude to Michelle, for helping me know Matthew better and for her willingness to try something different than what she was used to doing as a medium.
For years, the word “autism” made me scared, angry, overwhelmed, and stressed, but now it makes me thankful for the unexpected blessings it brings. I can’t lie and say that every day is easy and that I still don’t get frustrated or worry for the future. But I imagine if my life had continued on the “neurotypical route” and I shudder to think of everything I’d be missing if had my route not been recalculated.
That’s the beauty of Kinsugi. The pottery is made even more beautiful because those flaws have been visibly healed.
“Not only is there no attempt to hide the damage, but the repair is literally illuminated…” — Christy Bartlett, Flickwerk: The Aesthetics of Mended Japanese Ceramics
Thank you for letting me share my illuminated heart with you today.
-Katrina
Thank you for sharing….
I am so glad Katrina shared her story.