Yes, April 2nd is World Autism Awareness Day and I’ve painted my toenails blue, our entire family recently walked in the 4th Annual Coastal Run/Walk for Autism to raise money for Autism Society of North Carolina and GHA Autism Supports and tomorrow, April 2, the Hupps will be wearing their Love/Support/Advocate for Autism t-shirts. It’s one day where people light it up blue and puzzle pieces symbolic of the mystery that autism poses fill up social media. Whenever I’m needing encouragement from someone who has walked this journey long before me, I pull out my copy of A Thorn in My Pocket by Eustacia Cutler, who is the mother of Dr. Temple Grandin. Dr. Grandin has autism and opened many doors into the understanding of what people with autism experience–their sensory load (or overload), so to speak. She was diagnosed in 1949 and her mother’s tenacity, perseverance and courage forged an avenue for Temple and opened the doors to a community for autism that, frankly, puts me in sensory overload at times.
Mrs. Cutler did not have iPads and communication apps, IEPs and all of the tools and resources that we have today to assist our children and adults in navigating through daily life as they struggle with autism. She’s a champion that we can all look to when hope wanes. Perhaps you, too, will find encouragement in some of my favorite quotes from her book:
“There are no answers. There are only choices. And making choices takes a kind of persistent courage.”
“Autism uses up all the oxygen – it puts the other children in the family in the roles of helpers. But they are children too and have a right to the freedom of childhood. Yet when as parents we are no longer able to care for our autistic children, it is the siblings who will have to step up. We have no choice but to build strong, willing siblings and we must make sure that they don’t feel they have been shortchanged.”
“Temple’s journey is marked by shared concern and shared expertise. There was nothing more important than consistency between school and home.”
“I think it is at this time that Temple asks me, “Why am I different?” She doesn’t ask, “Am I different?” but “Why am I different?” “I don’t know why,” I tell her, “but don’t worry about it. We’re each of us different, each given traits that work for us and against us. What is important is to understand the traits so you can run them, and they don’t run you.”
“You’ll survive, that’s what. You’ll find your footing and stagger up onto dry land holding on tight to your child. You’ll limp, but you’ll make sense. There’ll be good days and nightmare nights, moments of great pride and days when you want to slink out of sight. But it won’t be raw knees in the undertow.”
And, my all-time favorite quote goes out to Maureen Morrell, who co-authored the book, Parenting Across the Autism Spectrum: Unexpected Lessons We Have Learned”. Maureen was the first person I spoke with after we received Adam’s diagnosis. At the time we spoke over two decades ago, she was a parent advocate for TEACCH (Treatment and Education of Autistic and related Communication handicapped Children) in Chapel Hill, NC. Justin, their twenty-something son, had recently moved out of their home to a residential setting when she wrote these words:
“So what have I gained from being Justin’s parent? An extraordinary relationship with a high-maintenance, low-functioning, difficult young man with a killer smile, a mischievous sense of humor, and a charm all his own. The defining relationship of my life has brought me (literally and figuratively) kicking and screaming into a life I did not want, but now cannot imagine being without. If, as Judith Viorst tells us in Necessary Losses, our growth as human beings is inextricably linked to our losses, parenting Justin has forced me to grow into a better person than I believed myself to be (Viorst 1986, p. 5). For how could I not learn to be courageous when I witnessed his courage in facing a world that so often scares and confuses him? How could I not learn forgiveness from a child who never held a grudge despite my parental failures? And how could I not learn about the difficult demands of love when living with someone who could sometimes act so unlovable? Sure it taught me that love is not just a feeling, but also a choice.
I have had remarkable teachers throughout my life. Yet some of the most important lessons in my life over the last quarter century have come from (many would say) the least likely source–my son, Justin. In this future that I did not expect, I miss his presence in my daily life. My heaviest responsibility, he has also been one of my greatest gifts.”
I agree wholeheartedly, except I must add that Larry has steered our ship through some tumultuous waters, all the while helping us to hold on to the Anchor. Our daughter, Sarah, has been and continues to be a source of encouragement and a pillar of strength in all of our lives. Amen.