NAELA, the national trade group for special needs estate planners, has published Karen Mariscal’s survey of the best special needs parenting memoirs ever written. The survey is reproduced here in full:
Parenting a special child is difficult. It involves intensive caregiving, time-consuming appointments, wrestling with special education issues, and more, not to mention the heartbreak. But it also brings great joy and sometimes transformational growth. Along with our statutes and forms, we practitioners might find it helpful to understand some of what our clients have experienced before they come to see us.
That’s where books come in. There are many great ones out there that vividly describe special needs parenting with honesty and compassion. Below are my favorites. Several authors have written two separate memoirs, one about the experience of raising a young child and one about parenting an adult. Some are older and use outdated terms, but the parenting experience is timeless, and the classics are classics for a reason.
Far From the Tree
Parenting children with many different types of issues.
If you read only one book on the subject of raising a special child, it should be this one. Andrew Solomon spent more than 10 years interviewing families who raised children with different needs, ranging from deafness, dwarfism, Down syndrome, autism, schizophrenia, multiple severe disabilities, to prodigies, transgender, children who were conceived in rape, or who became criminals. There is a riveting chapter for each.
The parents in every category struggled but ultimately learned to overcome their biases and accept their child. Their individual experiences vary greatly — think of raising a transgender child versus raising one born with multiple handicaps — but they all find themselves in the predicament of having to parent a child who is very different from what they expected and who experiences life, particularly childhood, very differently than they did.
Done right, parenting a special needs child is a recipe for personal growth. Solomon describes the positives of having a profoundly disabled child:
Having a severely challenging child intensifies life. The lows are almost always very low; the highs are sometimes very high. It takes an act of will to grow from loss: the disruption provides the opportunity for growth, not the growth itself. Constant high levels of stress may age parents of profoundly disabled children, making them crankier and more vulnerable, yet some cultivate a deep and abiding resilience. It turns out they have grown more skilled at handling other life stresses. Even as the downside wears you thin, the upside keeps on giving. The more difficult the problem, the more profound these positives may be.
Masterfully researched and beautifully written, Far from the Tree allows the reader to look into the lives of people who have parented children in the most challenging circumstances and are grateful for the experience. This is humanity at its best.
Life as We Know It and Life as Jamie Knows It
Down Syndrome/disability rights.
Michael Bérubé’s excellent books about disability are not emotional memoirs. Rather, they discuss genetics, philosophy, language, and social policy as they relate to people with Down Syndrome and intellectual disabilities, while at the same time telling the story of raising his little boy Jamie. He dives deep into how language and culture can cast preconceptions about ability and disability and what is lost when we allow cultural norms to change the richness of human variation into defects. He struggles with the consequences of amniocentesis on Down Syndrome babies. And although he is pro-choice, he makes a compelling argument that people with intellectual disabilities play a fundamental role in creating a more humane, compassionate, and hospitable society. Much will be lost if we try to eliminate what is not disease, but rather simply aspects of human diversity and difference.
The Siege and Exiting Nirvana
Autism classics.
Clara Clairborne Park wrote two classics on raising her autistic daughter, Jessy, first from birth to age 8, and then when Jessy was 40. Already a mother of three when Jessy was born, she was well aware that the problems were not in their parenting. Park is a superb writer with the approach of a scientist, carefully collecting data on her daughter’s behaviors and language and using it to find ways to reach her. She details the steps she took to mount a siege against her daughter’s attempts to shut out the outside world, also known as nirvana, without any real professional help since professional help was largely nonexistent in those days. These books are dated — the first was written in the 1960s — but the experience of parenting a high-needs autistic child is essentially the same and is brilliantly recorded.
Loving Rachel and Rachel in the World
Multiple disabilities.
In Loving Rachel, Jane Bernstein tells with unflinching honesty about her difficulties with both parenting and marriage when Rachel was a baby. Rachel in the World picks up later and details Rachel’s transition period as she leaves school and becomes an independent adult. It ends when Rachel turns 22.
Herculean efforts were required for Rachel to become an active member of society, with her own (supported) home and job. Rachel in the World helps us understand what many of our clients deal with as their children age. For Bernstein, it wasn’t easy — these books are not uplifting — but it turns out that it was worth it. Rachel is now 35, and Bernstein recently reported:
Although the story is full of struggle, now I can say that all the effort spent on getting Rachel where she is has really paid off. Until COVID, her life was rich with work and activities, and even now that everything’s gone, she’s managed to hang in, mostly because the skills she learned have enabled her to have some satisfying at-home activities.
Bernstein’s books are a testament to what is needed from society at large in order to take care of our adult intellectually disabled population: government support with housing, caregiving, supported employment, and day programs.
Spelling Love With an X
Fragile X.
Author Clare Dunsford elegantly and honestly describes her life with her son, J.P., a charming young man diagnosed with Fragile X syndrome. The book is a blend of personal memoir and scientifically researched information about Fragile X. For Dunsford, Fragile X was a family affair in that three of her four siblings were also carriers. Brimming with love, Spelling Love With an X both explains Fragile X and shares the insights of a compassionate scholar on motherhood and genetic inheritance.
Butterflies and Second Chances
Mitochondrial disease.
NAELA member Annette Hines, Esq., a special needs attorney and estate planner in Natick, Massachusetts, has written a book that powerfully describes, from beginning to end, how it feels to parent a severely disabled child. Elizabeth was born with a mitochondrial disease that would prevent her from walking or talking and would ultimately end her life at age 17, yet Elizabeth was the love of Hines’ life, and Hines’ descriptions of her amazing parenting journey hit me hard and deep. A shout-out to the role that Hines’ current husband, NAELA lawyer Mark Worthington, played in this. Mark is not only a brilliant lawyer but clearly has a heart of gold. He proves once again that angels come along when least expected.
Making Peace with Autism and Autism Adulthood
Autism.
In Making Peace with Autism, Susan Senator describes how she initially battled her son Nat’s autism with all her might and then gradually came to accept him as he is. (This progression is unusually intense for parents of autistic children since they often don’t know the extent of their child’s disability for a number of years.) Autism Adulthood discusses adult life on the spectrum and provides important information on navigating the system.
Raising a Rare Girl
Baby with multiple disabilities.
Heather Lanier is a poet, and it shows in this gem of a memoir about her experience of becoming a parent to a disabled child. In retrospect, Lanier ruefully admits that she was infused in the culture that expects people to have “superbabies” and was unprepared when it turned out that her daughter Fiona had a rare genetic syndrome that caused her to be profoundly disabled. Readers are the recipients of the wisdom she learned along the way. The book is insightful, sometimes funny, and ultimately uplifting, as Fiona heads off to kindergarten, walking on her own and excited to go.
Hidden Valley Road
Schizophrenia
Don and Mimi Galvin had 12 children, and six of their sons had schizophrenia. Author Robert Kolker tells their family’s remarkable story weaving in scientific information about schizophrenia and the history of doctors’ and scientists’ attempts to understand it. This book shows the effects that this kind of disability can have not only on the parents but also on the unaffected siblings, some of whom were courageous in their support for their brothers.
About the Author
Karen Mariscal, Esq., a special needs planner in Wellesley, Massachusetts, is the mother of an intellectually disabled autistic adult son and an avid reader. Send the names of your favorite books on this subject to Karen Mariscal at Karen@MariscalLaw.com.