“All That We Never See: Our Journey With Autism”
By: Áine and Gerry Crosse
Published by Book Hub Publishing (2020).
Reviewer: Dr. Phil Noone
“I just want to grieve and sleep.”
Poignant words from a mother, left alone to take care of her three autistic children since the sudden death of her husband, Gerry, just 7 weeks ago. In a desperate plea, Áine Crosse detailed her plight on Joe Duffy’s RTE programme, LiveLine, last week, seeking respite support so she can cope with her very unexpected and devastating situation.
After hearing this interview and reading a subsequent article written in the Irish Daily Mail (Saturday August 8th) by Maeve Quigley, I decided to read Áine and Gerry’s book to try to understand, in a very small and humble way, her world and her life.
When I first met Áine in 2018, I was impressed by her capacity for positivity, her unending struggle to raise her three children, diagnosed with Mitochondrial disease and autism and her love of make-up, style and life. I often wondered how she coped. And now, after the death of her husband, she is in crisis, not coping, emotionally and physically exhausted and totally worn out.
I empathise. I try to understand. But, how can I? Her world and its daily demands so far removed from my peaceful garden as I contemplate her life and read her insightful book.
This book draws you deep into their daily world, offering at times funny, shocking, heart breaking moments of real life as they navigate the unscripted world of mitochondrial disease and autism. Their moments of joy and laughter co-exist amidst their chaotic home life, where struggle and challenge live side by side with inspiration and hope. I shared their wonder and astonishment when they discovered that their son, Darragh, is a gifted and talented computer programmer, having taught himself coding, unaided by teachers or educational institutions.
This is a serious book that captures the honest, clear-cutting voices of the narrators, two very brave parents trying to find moments of peace in a very uncertain world. Their strength and resilience evident in every page, their bond of love and friendship clear in every written word. Their motto “to live each day as it comes knowing that day is precious to us” (pp:142).
Many incidents narrated in this book are memorable, but I will mention just two. In Gerry’s chapter, he draws us into the stark isolation that embodies his life: “Nobody comes to your house anymore because it upsets the routine. You become uncomfortable with people coming to the house because you’ve been living this life for so long, completely immersed in your children’s lives and their routines. You have practically isolated yourself from society. This is not your fault” (pp:154).
Gerry details in this chapter, his observation, understanding and knowledge of what occurs in a ‘meltdown’, offers tips in how to deal with it and to reduce its impact. He recommends observing everything that occurs when a meltdown starts. What changed, what is different.
His truth is that you have more control than you think you do. He gently advises that coping is like a muscle that you need to exercise to make it stronger and more capable. With observation of yourself, your own mental state, your own stressed behaviour, your own reactions, even cooking a different recipe with different ingredients, different smells can trigger a meltdown. It is from observing, noting, learning that the muscle of understanding and coping develops.
I found this a very interesting and novel formula for many challenges in life and I thank Gerry for sharing it so honestly with us.
The second incident I wish to mention is the arrival of Jamie, the assistant dog for Lisa, their ten-year-old daughter who also has Mitochondrial disease and severe autism. She is captured beautifully with Jamie on the front cover of this book. Áine describes how Jamie helped during one of Lisa’s meltdowns: “Her meltdowns are loud and full of movement; not the sort of thing that dogs tend to be attracted to. In that moment, Jamie walked straight over to Lisa, not one bit phased by what was going on, and lay down beside her making his presence known. Soon afterwards, she started to wind down. Each of us looked at each other, and then to Jamie, and to Lisa, none of us could believe it” (pp:130).
Many nuggets of advice and wisdom are contained in this book. As Áine and Gerry caution, there is no textbook learning, every child and situation is unique. Áine adds: “These children are remarkable, and we believe that they deserve a place that is familiar; a home where they can continue to grow in a place that makes them feel safe. And through nothing about the future is certain, if we know anything, it’s that we always find a way” (pp:139).
I am moved. Quietened as I read. Realising how lucky I am, living each day in relative calm, immune to the chaotic world and worries of Áine and her seven wonderful and extraordinary children, some of whom are young adults.
Wishing you well Áine. Thank you for taking the time to reach out to others by writing this book. I have no doubt you will get the respite assistance and support networks you require to enable you to care for your children at home, develop, love and cherish all of their different personalities and wonderful abilities.
Thank you, Susan, of Book Hub Publishing for mentoring and repping Áine, and for co-editing this book with John.
Thank you, Dr. Niall, of Book Hub Publishing for sharing this book with me.
I believe that every day I awake I learn something new. This book has taught me about courage, hope, resilience, determination, the will to carry on amidst exhaustion and chaos and the enduring love that exists between parents and children.
And finally, to Gerry, may you rest in peace. Your presence in the world is missed, your legacy of love, patience and kindness enduring forever.
I am humbled.