Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery and Faith is a book filled with novel ideas about the experience of neurodiversity by a neurodiverse mother of neurodiverse children. Author Jacki Edry was better prepared than most for the experience of raising children with disabilities. Edry volunteered with an autistic child in her community as a teen. She then attended Hampshire College, a school known for its alternative, self-directed curriculum, where her thesis was “Educating Autistic Children.”
The reader of Moving Forward might be excused for coming to the conclusion that a Higher Power had, for much of her life, been preparing Jacki Edry for the job of raising differently abled children. But destiny went one step further, by zapping Edry with a massive tumor on her brainstem. Brain surgery and its aftermath gave this first-time author firsthand experience in what it is like to have a brain that fails to function as expected. In short, if Edry had not already been neurodiverse prior to the surgery, something she had suspected might be the case, the surgery ensured that she was so, by affecting her vision, balance, hearing, and more.
As an insider of the neurodiverse world, Edry found herself, more than ever, as someone in a unique position to help parents understand and advocate for their neurodiverse children. Moving Forward is a slim volume, but one packed with insights into the neurodiverse world, and on parenting and educating neurodiverse children. The book is also a chronicle of Edry’s personal struggle with a dire health threat that led to sensory impairment. Finally, the book is an affirmation of faith and positivity by an incredible mother and person. The book led this reviewer to deep personal introspection on parenting and personal adversity, leading to the conclusion that there is always something we can do to move forward with our children and ourselves.
I spoke with author Jacki Edry to learn more:
Varda Epstein: Several of your children are neurodiverse. Can you give us a rundown of some of the ways in which they are differently abled?
Jacki Edry: I have a child on the spectrum, several with ADHD, several who were diagnosed with dyslexia (which was actually Irlen syndrome and improved with colored spectral filters), several with APD (auditory processing disorder), and SPD (sensory processing disorder).
Varda Epstein: You speak a lot about balancing the sensory system as being the most effective treatment for neurodiverse children. Why is that?
Jacki Edry: If sensory processing is out-of-whack then the information that is being received can be off-balance or incorrect. In general, we rely on sensory input to process information. If there are problems with input, then even if the processor is working properly the output will be wrong.
For example, imagine punching in the wrong numbers on a calculator. The answer will come out incorrect, even if the calculator processed the info accurately. There are three stages of processing information: input, processing, and output (giving answers). If a person experiences challenges at any of these stages they will likely be considered to be neurodiverse/neurodivergent. This is not, however, always a problem. Different, but not lesser, is certainly what I believe in. Neurodivergent people do amazing things every day and contribute infinite wisdom and talent to society. It is, however, critical to address and accommodate for the things that make life difficult or uncomfortable for people with neurodiversity in order to enable them to achieve what they aim to achieve and to live a happy, comfortable and satisfying life.
Surrendering to G-d’s Mercy
Varda Epstein: You had a serious brush with death. Can you talk about that?
Jacki Edry: Staring death in the face is not easy. I think one of the hardest things for me was knowing that if I was to die, it would be extremely difficult for my family. I wanted to be there for them. I know that in Judaism the spirit goes to the heavens, and doesn’t disappear—but if that were to happen, I wouldn’t be easily “accessible” to them, which would be challenging. I wanted to be able to take part in raising my children, guiding them, watching them grow and develop and build their families. I wanted to be able to give them all a hug and to be a supportive partner for my husband. The thought of losing that was saddening (to put it mildly).
I was also terrified of remaining cognitively impaired or a burden on my family.
There are no words to describe how I felt when I parted from my family to go to the hospital, and how I felt upon entering the operating room. The only thing I could do was to completely surrender to G-d’s mercy, and hope that He would decide it was best for me to stay present on this earth. It was very comforting to know that He was with me.
Varda Epstein: How did you manage to cope with your children and their special needs, along with the upkeep of your household, on top of your recovery?
Jacki Edry: I learned to choose my battles and to prioritize. My house was (and still isn’t) as orderly as I wished it to be. I couldn’t always provide my family with everything I thought was important to them. It was difficult. There were times I was incredibly frustrated, and I struggled. I elaborated on this struggle throughout the book. I guess it boils down to just realizing that I could only do my best in any given situation, and even if things aren’t exactly as I would like them to be, G-d put me in the position that I need to cope with things as they are—and if things aren’t perfect, He knows that I am trying as hard as I can to manage and accept what he has chosen for me with as much grace as possible. I also learned that sometimes it is important to ask for help, even though I much prefer to be on the giving end.
Varda Epstein: What made you decide to write Moving Forward?
Jacki Edry: My primary goal for writing the book was to assist others. I figured that my unique experience enabled me to gain insights into the world of neurodiversity and faith that would be useful for others to know about. I have always loved writing and believed that I could put this gift to use in order to empower others.
Varda Epstein: The experts tend to suggest that stimming be prevented or stifled. You appear to disagree and that is interesting, because it’s the first time I’ve seen anyone suggest that stimming might actually be therapeutic. Can you tell us a bit about that?
Jacki Edry: This is a very difficult question and there is no one answer for it. I believe that stimming happens for a reason and I imagine that in most cases it is due to an unbalanced sensory system. Stimming serves a purpose.
I believe that if one carefully observes a child who is stimming and is successful in figuring out why the child has the urge to stim, then it is possible to try to find a way to help them to balance out their system, which will help them to reduce or eliminate their need to stim. Behavioral interventions do not address this imbalance, which is why they are not usually successful in this area for any length of time. In many cases, one “behavior” will be eliminated through a behavioral intervention, but another one will take its place because the difficulty or imbalance that triggered the need to stim was not addressed.
Varda Epstein: How did your post-surgery experiences inform your understanding of neurodiversity?
Jacki Edry: They gave me an opportunity to experience the things I had been observing for years firsthand and reinforced that my line of thinking about sensory issues was accurate.
Moving Forward: The Ideal Mindset
Varda Epstein: Moving Forward tells us not to listen to experts who tell us that we/our children will never heal or recover completely, and may never improve. What would you say is the ideal mindset of the parent with a neurodiverse child?
Jacki Edry: To believe that things can always get better and improve. To have hope. To observe your child all the time and try to understand where he/she is experiencing difficulties and to seek creative solutions. To love and enjoy your child and not compare him/her to others. To learn from your child, because I assure you that she/he will teach you a lot. To be flexible and ready to change your plans and mindset as they grow and develop. To have a good sense of humor and to appreciate the little things in life. I believe that they are actually the big things in life—we just need to take the time to recognize and appreciate them. To trust your instincts and to surround yourself with positive people with who you and your child feel comfortable being around.
Varda Epstein: In your experience, the recommended therapies don’t always benefit, and may even be to the detriment of neurodiverse children, and a diagnosis is often not much more than a wastebasket term? Why then, is a diagnosis still important?
Jacki Edry: I think that the importance of a diagnosis changes depending on the stage of life the person is in. Diagnosis is important for children because it enables them to become eligible for funding from the medical and educational systems. It also provides people with a common language to share with others. It does not, however, provide parents with the tools they need in order to help their children.
As they grow older, many neurodivergent people recognize their diagnosis is an important part of their identity and it becomes something that is appreciated and celebrated, a source of strength and empowerment. They might seek out peers who are experiencing similar things to them, and to join forces with them in order to form friendships and to advocate for the things that are important to them (and to society at large!), such as academic accommodations or inclusion in the workplace.
Varda Epstein: Parents reading your book are going to think you have the patience of a saint and that they could never match you as a parent. How would you respond?
Jacki Edry: I try to be patient, but I certainly do not have the patience of a saint. I simply attempt to do my best, which is all anybody can do. Some days I am more successful than others. When I fail, I try to recharge my batteries and correct my mistakes.
We are all human, and our abilities change from day to day and minute to minute. So, I don’t think that people should compare themselves to me or to others as a general rule. All I can suggest is that we try to be patient with ourselves and not only with our children, and then do the best that we can in keeping with our varying abilities.
Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery and Faith
By Jacki Edry