Here’s what others are saying about This Crazy Quilt: Parenting Adult Special Needs One Day At A Time
“In a year’s worth of blog posts, a mother goes through the complex process of helping her special needs daughter make the transition from childhood to independent adulthood.
In the introduction to her debut work, Edelman quotes a journalist friend: “This is a story that nobody is telling.” From bookstore to blogosphere, there are many accounts of raising special needs children, but fewer about caring for a developmentally disabled adult child. Edelman explains that her topic is “the parents’ quest to bring their child to the threshold of adulthood, safely and successfully” and to “provide something of a map for others to use.” As Edelman describes with impressive specificity, there’s a lot of bureaucracy involved—in her case, most of it centered on her daughter’s return home from boarding school and turning 21. At that age, she “ages out” of the Connecticut public school system and other state resources, and segues into a whole new frontier of need-based services, of which Medicaid is probably the least complicated. There’s a mass of jargon and acronyms and a crazy quilt of service agencies, all of which Edelman, a licensed social worker, explains fluently. She writes with equal assurance when describing her conflicting emotions: gratitude and frustration with the system, and hesitance about when to help her daughter and when to stand back. She writes of her unmistakably heartfelt love for her child and honestly portrays the difficulties of dealing with her disability. The transition of this material from blog to book, however, is somewhat less well-handled. The text seems to have been transferred verbatim, including some dead and absent links, and its practice of beginning almost every paragraph with an italicized subheading is hardly noticeable in a blog, but somewhat tedious in a nearly 500-page book. However, the book sensitively does what it sets out to do, documenting a complicated and too little-discussed struggle to help others dealing with similar challenges. This account provides both the practical advice of an insider and the compassion and wisdom of a loving parent.
A must-read for parents of special needs children nearing adulthood.” – Kirkus Reviews
(See the review on KirkusReviews.Com)
Special Needs Parents…
“Jill Edelman is a beacon of wisdom, compassion, and support for special needs families.”
Author of The Anti-Romantic Child: A Memoir of Unexpected Joy
“I am the mom of a 20-year-old with special needs. My son’s challenges afforded me the opportunity to venture down roads that I would not have otherwise endeavored, including Past-President for many years of our local Special Education PTA (SEPTA). These and other roles allow me to express with knowledge and personal experience my gratitude to Jill for sharing in detail, so poignantly expressed, daily aspects of her journey. Parenting a child with special needs transitioning into adulthood is NOT easy. Jill’s emotions, her daughter’s emotions, the nuts and bolts of the journey all come together in Jill’s new book Parenting Adult Special Needs. As you read the book you will come to know that you are not alone and you will find actionable tips Thank you to Jill and to her daughter for sharing and making the journey that much easier for the next young adult taking flight.”
“I have referenced your blog to others many times. You do really and truly get it! There is something about reading the journey taken by someone else to make our own journey easier and to view the sometimes difficult experiences with another’s understanding perspective.”
Riverview School parent
“I am looking forward to your book; to re-read all the posts that made me laugh, shed a tear, but always nod in agreement because we are on the same journey.”
Riverview School parent
Special Needs Professionals…
“It is refreshing—no, exhilarating—for one who has spent her entire professional career with special-needs children—and the literally libraries of academic works on ways to help them—to encounter this delightfully personal, frank, and endlessly insightful chronicle of Jill’s daughter at age 21 launching into adulthood. Jill is right there as she leads us on the journey with vividness, humor, and relentless honesty. It will be eye opening and exciting for educators to enter that world with Jill and her daughter—daily, intimately, to see “where it is all heading”–our own work to prepare the child for this very passage. I can think of nothing else like this that has been written; nothing can replace it. It belongs in the hands of every participant at support team meetings in every school. Jill has pulled back the curtain on the future we all try to discern. I love it!”
Robin Shepard, M.S., M.A.
Little Red School House, N.Y.C.
“Parenting Adult Special Needs: One Day at a Time is a go-to resource for parents, siblings, educators and everyone interested in discovering the inside perspective on adults with special needs. This is a terrific compilation of a remarkable journey showcasing what advocacy and support can do.”
Rebecca L. Ciota
“Jill Edelman has created a unique and inspiring resource for families of young adults with disabilities. Elegantly written as a series of daily posts, Jill chronicles the challenges and successes, disappointments and triumphs of her daughter’s first year in her own apartment. With honesty and humility she guides the reader through her daughter’s journey and her own journey as parent. One family’s experience accessing government benefits, working with adult agencies, looking for employment and exploring recreational pursuits will undoubtedly provide insight, encouragement and guidance to other families seeking a fulfilling life for their own adult child.”
Maureen B. Brenner
Head of School, Riverview School
“Jill’s introspective journey will resonate with other families who have been in a position to advocate for a loved one with a disability. Her book will provide a valuable resource to others who will appreciate knowing that there is someone else out there who can truly understand what it’s like from the parent’s perspective. Jill should be commended for her willingness to openly discuss her personal experience and to share her wisdom to benefit those who may be dealing with a similar situation.”
Assistant Director, Supported Independent Living
Ability Beyond Disability
“Parenting Adult Special Needs: One Day at a Time is a great resource for parents navigating the ups and downs of advocating for their adult child with special needs. The book is packed with useful resource information, real-life anecdotes and the unique insight of someone who deeply understands the joys and challenges of pursuing a fulfilling life for their adult special needs child.”
Executive Director, Pegasus Therapeutic Riding
“Raising a child with special needs is very scary, but when that child becomes a young adult with special needs, life gets terrifying. That feeling of terror & the helplessness of not knowing what to do and being alone is overwhelming. By following your daughter’s and your journey, I felt less alone, less helpless, and less terrified. As I followed both of you through the process I felt more empowered to do what I needed to do to provide Christina with what she needs. Thank you for sharing your journey.”
Parent of A Special Needs Adult
Executive Director of LITEhouse
“Jill has navigated the waves of young adulthood searching for the optimal recreation, leisure and vocational life activities that could focus on her daughter’s talents. The balance of activities of daily living, community program participation and meaningful evening leisure options is a hard puzzle to put into action. Jill, passionately dives into and discovers roadblocks can be overcome. Masterfully creating meaningful life experiences and tackling structured living. Jill is an inspiration to all people who are involved in the special needs community. We are grateful to be included in this much-needed ocean of clever conversation, humor and dignity for all of our children with all of their abilities.”
Cindy Freedman CTRS, OTR
Co-owner, Angelfish Therapy.com
“This book is a must read for all parents facing the challenge of raising a child with special needs. It is informative, highly relatable, and often heart warming. As an educator and mother, I found each entry to be full of valuable insight and information. I am sure that Jill’s keen ability to share her very personal journey will be helpful to so many parents who will be taking similar steps to helping their special needs child move into their own adulthood.”
Jennifer Soodek, M.S., M.S.Ed.
Founder of Almost Home Childcare and Head4Success.com