(These books are discussed in
more depth in the full-length Recommended Reading page)
11. You Will Dream New Dreams (edited by
Stanley D. Klein & Kim Schive): collection of essays by parents of children
with various disabilities and special needs, both physical and
developmental/mental. Covers reactions to diagnoses, struggles to obtain
services and appropriate education, sibling and societal issues.
10. Supernatural Childbirth: (Jackie
Mize): I might discuss this book a bit in the “full-length” Recommended
Reading, although I may have to categorize this as, “if you can’t say anything
nice, don’t say anything at all.” I was confused by the author’s theology and
she really seems to be saying that if you follow her program, and truly
believe, that God will “meet your faith” wherever it is, and you will have a
healthy baby, guaranteed. No thanks, not my style.
9. Expecting Adam (Martha Beck): The author’s memoir
of the bizarre, mysterious events she experienced while pregnant with her son
Adam, who has Down syndrome. She also discusses the shift in
priorities Adam’s arrival caused for her and her husband, who were both
graduate students at Harvard at the time.
8. Bloom (Kelle Hampton): Parenting memoir about the birth
and first year of life of her younger daughter, Nella, who has Down syndrome.
The theme of “blooming where you are planted” is a metaphor of her process of
accepting and adjusting to Nella’s diagnosis, which was not known to them
before her delivery.
7. Special Siblings: Growing Up With Someone With a
Disability (Mary McHugh): Part memoir, part science/research review, this
book comprises memories of the author’s childhood (growing up with a brother
who had cerebral palsy and mental retardation), as well as discussion of
research about the “typically developing” siblings of children with special
needs.
6. Gifts: Mothers Reflect on How Children with Down Syndrome
Enrich Their Lives (edited by Kathryn Leonard Soper): A collection of short essays
by mothers of children diagnosed with Down syndrome. A diverse mix of
backgrounds, reactions, and opinions.
5. The Short Bus (Jon Mooney): A cross-country journey
by the author as an adult, reflecting on his experiences in the special
education system as a child. Contacts and interviews with several families,
whose children have a variety of learning challenges, who are navigating (or
have navigated) the educational system.
4. Life as We Know It: A Father, a Family and an Exceptional
Child
(Michael Berube): Parenting memoir by a dad (the only one I’ve
read so far) of a son who has Down syndrome. Unless you are a full-time academic/philosopher/thinker
as Berube is, this book may require a lot of patience and/or perseverance. When
Berube is discussing his son and the experiences of his family the book is
enjoyable; at other times it is esoteric to the point of obnoxiousness. J
3. The Year My Son and I Were Born (Kathryn Leonard
Soper): This is the first parenting memoir I read, after David was born and his
diagnosis was confirmed. For a long time, simply reading the title brought me
to tears. Her son’s diagnosis was a surprise at birth; the book follows the
first year of his life as mom, dad and siblings adjust. This book will probably
always be special to me because it was my first.
2. We'll Paint the Octopus Red (Stephanie Stuve-Bodeen): A book for
children; I can’t recommend this highly enough. Our older son Simon really
loves it; it was the first time we’d really talked to him about Down syndrome
(he knew his younger brother had been born early and small, and had a lot of
health problems) and the book helped us communicate that although David will
learn most things more slowly than other kids, with our support and patience he
will learn just about everything he needs.
1. The Hidden Feelings of Motherhood (Kathleen A.
Kendall-Tackett): Covers various challenges stay-at-home and work-a-job moms
face – stress, depression, burnout, fatigue. The author provides fairly dense
summaries of all these issues; it was somewhat exhausting to read: bam bam bam
done. It was overwhelming for me to read at this exact point in my life (everything
she talks about is an issue for me at present, including her chapter on
pregnancy and infant loss). But her discussion of the history of societal views
of motherhood in the US was interesting (and new information for me); she also
effectively demonstrates that “labor-saving devices” (modern stoves,
washer/dryers) really only save work for men while raising expectations for
women.
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