About this Book
“What are my limits? What do I stand for? What am I willing to do to advocate for someone I love?” Arthur Russell was an average guy. A married man with one child and one on the way, he and his growing family settled in Davis, CA to begin the next chapter of their lives. Soon he would be faced with a challenge that would test his limits and have him searching for solid ground. Daisy Has Autism speaks to anyone who has found themselves faced with a choice about how to rise, maintain their integrity, and ultimately prevail. It is a story of transformation, resilience, and an unending parent’s love.
Recent Blogs, Reviews & Interviews
Caught in the Middle: Whatever Happened to the Individuals With Disabilities Education Act? https://nancyebailey.com/2019/09/18/caught-in-the-middle-whatever-happened-to-the-individuals-with-disabilities-act/
The Mighty: Autistic Girls Should Have Equal Access to Education, Safety and Success https://themighty.com/2019/08/autistic-girls-access-education-safety-success/
Navigating the Limits of Special Education https://www.spdstar.org/node/1434
Aaron J. Wright is the product of a public education and a member of a family deeply entrenched in public education. He is a Nurse Practitioner and the parent of two children, one with autism. Professionally he has worked with severely injured adults and children for nearly two decades. Outside of work he has been a staunch advocate for disabled students in public education and youth sports. He firmly believes in the benefits of a public education and access. He lives in the San Francisco Bay Area with his family and three distinctly different dogs.
Regulation and Adaptation
When the turbulent day is over, she is seasick and immobile.
From a listed deck, people move unpredictably. She is constantly bombarded by waves of olfactory assaults and acoustical batteries. She can adapt to the daily changing angle of the sun but cannot accommodate the unpredictability of manmade light’s sixty cycles. When her sleep finally comes, there is no lazy drift off. No simple secure mooring exists. For her, wake begins its end with a collision.
Her balance is loosely berthed at the end of never-ending semicircular canals. In her wheelhouse, a sticky throttle and a soft brake. Navigation is at the mercy of the current, the phases of the moon, and the multitude of the unknown. There is no ebb and flow. She is a demagnetized compass in the Bermuda Triangle.
In a craft resistant to control, she gives few overt impressions of frustration. She bemuses and confuses passersby.
Yet she is persistent. Is she consciously fighting sleep? Or is she finally endorsing the need for rest but incapable of reconciling the day’s journey?
Perhaps it is my fault. I’m too anchored in my own needs, and constantly capable of, and culpable for, failing her routine. An enigmatic arrangement to her bed exists to which I am ignorant, and of course, she cannot tell me, readdressing that which I thought I had already addressed. It is a layered process with arbitrary rules.
Her hull groans as she’s chosen the wrong tack, the wrong tactic.
Awash in insults, she knocks and kicks.
Foundering, she is discordant under the gravity and weight of a starry dark blanket.
With a heaving sigh, she sinks into sleep. Only in that moment I can see that which everybody is overly willing to see: she is normal; she is beautiful.
The involuntary control of voluntary muscles has ceased, and there is peace in her paralysis. Her face has softened, the tension is gone, and only the required tidal respiratory movement remains.
Has she sunk deeper into her autism and dreams only in that language? Can she think the way that I wish for her? Or is it in a way that others think she is capable of? There are constant explanations for her nature, and backhanded questions of our nurture.
But I dare not shift my course. The jerk of her leg lets me know that this state of rest is temporary, and so is my control. No matter her dreams, she swims in shallow water, and I do not want to be yet another who rocks the boat. I know she will wake before it is necessary. It is our unified reality. She did not make today’s trip alone.
Aboard, she carries a manifest of depleted passengers. It is a truth only soothed by the fact that when she does stir, it will be with people who love her.