As days, months, years, and now a decade have passed, I am moving forward with our family’s life in order to embrace life’s open-ended number of possibilities. To be perfectly honest, I feel as if autism stole so much from our family’s life that I don’t even wish to begin to quantify the losses with words—isn’t that what moving forward is all about? Time did not stand still for autism since late in 2006, so why should I?
The Power of Acceptance
When my daughter, Hannah, was first diagnosed with autism, someone shared the five stages of grief with me. Needless to say, I wouldn’t recommend doing this to anyone with a recently diagnosed child. It felt like a shot through the heart. But now, a decade later, I understand its application. And I can finally say that I’ve made it to the acceptance stage.
This is not to be understood as a loss of hope, however. Hope for Hannah’s possibilities is what pushed me to find all the resources necessary to help Hannah overcome as many limitations as possible. We refused to resign ourselves to settling for less than she is capable of becoming. And yet, even as we fought for her best possible outcome, we had to also recognize that she does indeed live with a diagnosis of autism. She will always struggle with some of its traits, as it is part of who she is. Accepting this was necessary.
Acceptance brought a peace and calmness about the very core of who my daughter was meant to be. Trying to fix or cure Hannah’s autism is over. That drive—an impossible pursuit—threatened to steal our happiness. Though many children emerge into more interactive levels of function, as Hannah did, there is no complete recovery for a child with autism. Accepting this is bittersweet. For years I saw progress and secretly longed to see her completely emerge from autism and to be completely free of its challenges. This was of course not possible, and acceptance shifted something inside me, something beautiful and empowering for both Hannah and me. I providentially accept all of my daughter’s strengths, as well as, her challenges.
Defining and Embracing a Meaningful Life
Author Paul Collins said, “Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” Constantly correcting Hannah’s behaviors and focusing too often on her autism made her feel more different than the autism itself did. Autist Jennifer Cook O’Toole in Sisterhood of the Spectrum said it well: “Girls on the spectrum often mistake our most immeasurable gifts for shameful flaws.”
I was privileged in July to meet Ron Suskind, author of Life Animated, at the Autism Society of America’s National Conference. His brilliant book and film detail decades of time with their son, Owen, who has autism. Ron spoke of acceptance with a poignant statement, “Who defines what a meaningful life is anyway?” Isn’t that true? Our job as parents is to give our children the tools to grow and thrive while discovering their true selves.
Writing the Story to Preserve the Past
With those truths confirming what I’ve finally come to realize about our journey, I look at the two bulging plastic containers in the corner of our office which hold evidence of the last decade’s tumultuous time. The containers bear doctors’ and therapists’ notes, research articles, Individual Education Plans, brushing and eating protocols, PECS cards, my journals with silent scribbles, orthotics, therapy toys, emotion jigsaw puzzles, bills, conference and workshop agendas, sensory and behavior profiles, and more. If I’m moving on, what should be done with them?
A dear friend suggested I read Mary Karr’s The Art of Memoir. Karr says, “Only by looking back on the past, can we allow it to become the past.” In order to toss the boxes’ artifacts, I needed a literary archive for my children. And, I needed to heal.
Writing is cathartic in so many ways. In essence, I gave words to a time in our lives that allowed us no pauses to acknowledge the nuances of the situation we were experiencing. Mary Karr continues, “Writing wrenches at your sides as you do battle with yourself. People who were once in your life are back. Sometimes it’s as if you are knocking yourself out with your own fist.” Karr obviously could not have described the experience any better. Reviewing the past and revisiting doctors’ offices and hard words said to me at vulnerable moments—remembering painful moments of grief and loss and confusion—it all felt like a fist fight and multiple blows to the gut.
But writing our story was worth the pain. Through words, I’ve preserved the past and reflected on all that we’ve learned without needing to keep the tubs and tools that got us where we are today.
A Parent’s Questions and Doubts
When parents are in the trenches with autism there are many behaviors and thoughts that go through our minds that are very hard to shed. As I look back, those actions were all part of the natural process or journey that special needs parents most often deal with.
What or Who Causes Autism?
During the first year after Hannah’s diagnosis, I believed that I was responsible for causing Hannah’s autism. And, if it wasn’t me, I sure was bound and determined to find out what did. I soon found out that if I was doing everything I could for my family, there was no time to become the “expert” on autism’s catalyst. Over time and much grace, I also have come to the much-needed epiphany that I was not in control of Hannah’s autism. There was nothing in my power that I could have done that would have kept her from acquiring the challenges that come with autism.
Does Autism Define a Family?
I also used to believe that I needed to tell everyone that I came into contact with that I had a child with autism. I wasn’t looking for pity; however, I did once feel as if Hannah’s autism was a tragedy for our family. Autism no longer has that connotation for me, and it no longer defines us. At times we still make adjustments to our travel plans or holiday gatherings to accommodate some of Hannah’s challenges, but does it define us? No.
Does Your Child Need to be Engaged 24/7?
Intervention strategies totally took over our lives in the early years. The maelstrom of movement from our front door was enough to make any family crazed. Our schedule was set weekly with no room for flexibility. I felt that if I wasn’t engaged with Hannah every minute of time that I had with her, then I wasn’t doing my job. The guilt of a special needs parent is enormous. I wish I would have listened to a fellow special needs mother when she suggested, “Let the therapists do the therapy, and you be the mom.” I just couldn’t. I felt if I wasn’t always engaged in extending Hannah’s therapy routine, then she would lose skills she had gained. Thankfully, with acceptance, I no longer feel like that.
Can a Marriage Survive the Diagnosis?
Autism is also very hard on marriages. Eighty percent of marriages in which the couple has a child with autism end in divorce. I believe we were both grieving but in different ways. I do know that my husband had a demanding job, and he needed to be there; however, I felt contempt watching him walk out the door and focus on his career while I dealt with most of the therapy and doctors’ appointments along with another child and my own full-time job. Our marriage did not survive, and I would never want Hannah to believe that she or her autism caused the divorce—as they did not. But this is only the story of my marriage; in the years since our divorce, I’ve interacted with at least a hundred other parents who have a child diagnosed with autism, and many of their marriages have survived and grown strong. I’ve been encouraged to see that even though my marriage didn’t make it, many marriages can and do survive the diagnosis.
What Would You Do Differently?
When all is said and done, I would not have done a thing differently. I believe we do the best we can with the situation at the time, and it helps no one to think, what if? Randy Pausch, in The Last Lecture, said, “We cannot change the cards we are dealt, just how we play the hand.” I am proud of how I played our family’s hand.
I welcome any comments that you can share on how time passing brings about acceptance—just drop them in the comments below.