Reviews and Endorsements
It is hoped that through the writing of this book, readers gain awareness or find affirmation, take ownership of their family's situation, become empowered to advocate for and live an enviable life, and finally to become both a leader and facilitator to achieve the goal of Everyone Belongs and People of All Abilities are given the accommodations they need to live an enviable life.
"Never doubt that a small group of thoughtful, committed citizens can change the world;
indeed, it is the only thing that ever has."
Margaret Mead
Here are some reviews and thoughts on the book from friends, readers, and medical professionals.
Deborah Bruns, Ph.D.
Professor emerita, SIU Carbondale
Tracking Rare Incidence Syndromes (TRIS) Project Principal Investigator
Jim has undertaken a guidebook, one that the majority of parents, family members and caregivers won’t read and those that do may not want to. Caring for a child with multiple, complex needs is not how individuals picture themselves. They don’t picture changing diapers on a teenager. They don’t think about emergency room visits and extended hospital stays. Having a child is celebrating accomplishments and enjoying shared interests and activities. While these will occur, it is not what many of us think of or would imagine. Rather than walking your child down the aisle, they reach a goal of sitting unassisted for two minutes.
This guidebook comes from the heart and mind with stories, advice, facts and resources. It includes humor, poems, letters, photos, social media posts and heartfelt commentary from a variety of sources. Each contributes to building a complete representation of Aidan’s life, his valuable and meaningful life. These pieces also provide a way to reflect on what is key to consider in meeting the range of needs for a child with multiple, complex needs including medical, therapies, equipment, day to day care, education, social and recreation needs. Jim walks us through the “what” and the “how” with candor and a clear awareness of his strengths and vulnerabilities.
What is presented is the means to provide an enviable life. It is motivating and also practical. This is highlighted in discussing transitions, of which there are many when supporting a child with multiple, complex needs. It’s the expected and unexpected transitions and knowing how to prepare beginning at birth and continuing until death.
Jim and I have known each other for many years. It started with Jim sharing information for my research study focusing on rare genetic conditions including trisomy 9 mosaicism. At the time, Aidan was one of the oldest children I’d met and Jim was a font of knowledge I sought out many times. He shared information with a breadth and depth of someone who had experiences across the expanse of medical settings, schools and community settings. Spending time with Aidan definitely made an impression as did watching their interactions. Aidan’s joy at swimming in a lake and eating his favorite snacks showed what an enviable life looks like along with Jim’s joy at his son’s interests and accomplishments over the years.
I encourage those touched by someone with multiple, complex needs to step inside the world Jim and Joan created for Aidan and learn about the ups and downs, the decisions, the planning and the forks in the road. The stories, emotions and advice are genuine, from a place of lessons learned and following your gut. Above all, it is a celebration of Aidan.
Laurie Rosenfeld, Mother of Torri, and Disability Advocacy Ambassador
I first met Jim, Joan, and Aidan in 1999, at the Rochester, NY Support Organization For Trisomy conference. It has been my great pleasure to call them friends and teachers. As parents of both a medically complex and a typical child, my husband and I have walked a similar path. As you will learn in this book, Joan and Jim have been dedicated and effective advocates for Aidan for many years. This book presents their learned experiences in a relatable and usable manner.
Creating and Living an Enviable Life: A Guidebook Supporting Medically Complex Individuals offers excellent ideas on traversing the world of disability as an advocate for your loved one, while also offering practical advice on navigating school, medicine, and the greater community. Sprinkled in with the practical advice will be plenty of humor, joy and hope. Mixing these ingredients can help you create an enviable life recipe for you and your child.
If you are looking for support and advice to help you steer through the ups and downs of parenting a medically complex child, while also finding joy and peace in the balance, this guidebook can help you. Jim has tapped into his personal experiences, and his vast community of supportive relationships with professionals in medicine, education and disability advocacy, to provide a handbook for you to use to help your child achieve their own enviable life.
Along the way, Jim will also offer insights on how to maintain your own joy; keep yourself healthy, so you may continue caregiving; plus address the difficult questions about your and your child’s futures. These are topics of uncertainty for all of us who take this journey. Taking Jim and Aidan along, as companions and teachers, helps lessen the heaviness of some days, and reminds us to bask in the sunlight, on as many days as possible.
I encourage you to read as much of this delightful and helpful book, as you can - perhaps a few pages today, or a chapter next month. Each word was written by Jim with joy, love, and the hope of smoothing the path for the rest of us on this journey. Reading this book and getting to know Aidan and his extensive community connections will stir your emotions - and leave you with the lasting joy of an enviable life well lived.