For Adults:
For Kids:
- Leo The Lop
- Witch Week
- Grover and the Everything In the Whole Wide World Musuem
- Glow In the Dark Stars, Moon and Clouds
FOR ADULTS:
by Donna Williams (Avon Books, $10.00)
[from the Spring 97 edition of Dialogue, Volume I, Issue 4]
Considered a classic among autism-related books, Donna's story is a must-read. In contrast to the more impersonal narrative of Temple Grandin in Thinking in Pictures, Donna writes in a brutally honest style inviting us to enter her mind and feel her struggle to survive in an alien world. The author, who originally wrote the book to help her understand herself, hides nothing and candidly describes the mistreatment and misunderstandings by other people without criticism or bitterness. On the book jacket, she says, "This is a story of two battles, a battle to keep out 'the world' and a battle to join it. I have, throughout my private war, been a she, a you, a Donna, a me, and finally, an I. All of us will tell it like it was and like it is. Welcome to my world." Her translations of autistic behavior and suggestions on how to communicate with autistics in the afterword will be especially interesting to those of us who have struggled to connect with autistic family members or friends. It is fortunate for us that Donna did not burn the book as she had intended.
by Marilyn Trainor (Woodbine House, $14.95)
[from the Winter 97 edition of Dialogue, Volume I, Issue 3]
Anyone with a developmentally delayed child can probably relate to Marilyn Trainor when she complains about people who say that the child is a gift from God and was sent to show what love is all about. Couldn't a healthy child show what love is all about just as well? Parents will relate to Trainor as she writes about her experience raising a son with Down's Syndrome and empathize with the diary entries during Ben's first three years. With no apologies, she writes about her initial anger, frustrations, and uncertainty about whether he would even learn to talk. She mentions how she looked for any sign of normalcy, whether it was a smile or a gesture. In later years as Ben grows up, she regrets that he is less and less dependent on her. Throughout the book, she writes of her attempts at advocacy, and how hard it is to open up a society that has come a long way towards acceptance, but not enough. Readers will get a good sense of both the trials and triumphs of raising a disabled child.
by Joseph Shapiro ($14; Times Books 1994)
[from the Fall 96 edition of Dialogue, Volume I, Issue 2]
"There is no pity or tragedy in disability... it is society's myths, fears, and stereotypes that most make being disabled difficult," says the author in the introduction of this book about the disabilities movement. With a great deal of compassion, understanding, and insight, he tells the story of the inception of the Americans with Disabilities Act (ADA), its intention, and the people behind the movement. Touching upon the personal lives of autistic, epileptic, and mentally retarded men and women, Shapiro illustrates the conflict between societal and self-perception of the disabilities. In particular, the story of Jim, a mechanically-gifted mentally retarded man, and the author's struggle to transfer the former out of an institution to a group home is moving and drives the point home. Throughout the book, he underlines the deep desire of the disabled to simply be recognized and treated as normal people. The reader comes away inspired and with a greater appreciation for the ADA and the opportunities it has opened doors to.
by Temple Grandin ($22.95; Doubleday 1995)
[from the Summer 96 edition of Dialogue, Volume I, Issue 1]
Written by a high-functioning autistic, this is an inside account in which the author traces her childhood and her development with detailed self-observations and general discussion of autism. "I think in pictures. Words are like a second language to me," she tells us in the beginning of the book. She compares her mind to a CD-ROM disc and likens reading to programming a computer. She addresses her anxieties, fears, and incomprehension of complex emotions (comparing herself to Data in Star Trek), talking extensively about how she dealt with related problems. For example, she uses a "squeeze machine" that she modeled after a wooden animal restrainer, so she can relieve anxiety and connect to her mother's love. En route, she tosses out an interesting theory that genius and autism may sometimes be closely related. She herself holds a Ph.D in animal science and revolutionized the design of livestock equipment in the United States. Crediting autistic characteristics for helping her career, she would refuse treatment were there ever a cure.
FOR KIDS:
by Stephen Cosgrave (Price Stern Sloan, $3.95)
[from the Spring 97 edition of Dialogue, Volume I, Issue 4]
Stephen Cosgrove (Price Stern Sloan, $3.95) The story of Leo and the lesson he and his fellow rabbits learn is one that many TS children will relate to and be encouraged by. Whether it's because of facial angiofibromas, epilepsy, or autism, many children who are different are faced with questions or teasing that can lead to insecurity and self-consciousness. Similarly, Leo, whose ears hang down, suffers questions and taunts by other rabbits who think he is not normal. In his quest to be normal, Leo tries everything from hanging upside down from a tree branch to convincing the others that they are the strange ones. Cosgrove's story will be the perfect way to drive in the point that "normal is what you are," and even if you are different in some ways, you may share other things in common.
Witch Week
by Diana Wynn Jones (Greenwillow Books, $14.00)
[from the Winter 97 edition of Dialogue, Volume I, Issue 3]
"SOMEONE IN THIS CLASS IS A WITCH," said a note that was handed to Mr. Crossley with geography homework. So begins a crazy witch hunt in a boarding school for witch orphans in a modern society that outlaws witchcraft and burns offenders at the stake. Kids will enjoy the funny outcomes of magic used, and adults will be intrigued by an alternative world theory, speculating that an incident triggered a world to split into two distorted worlds, one with witchcraft and one without. Written by a British author, this is a perfect read-aloud book, amusing for children of all ages and guaranteed not to bore adults. Those who like this book should try the Dalemark quartet by the same author.
Grover and the Everything In the Whole Wide World Museum
by Norman Stiles and Daniel Wilcox ($2.50; Random House 1974)
[from the Fall 96 edition of Dialogue, Volume I, Issue 2]
A colorful book that is perfect for teaching your child everything from names of vegetables and animals, to small things, big things, and everything else. The Sesame Street character starts his tour with "The Things You See in the Sky room", moves on to "The Things You See On the Ground Room" by crashing into its door, and finishes with the door to "Everything Else" after visiting several other rooms. Most things are labeled and the funny illustrations will capture the attention of your child. The book is recommended by Melanie Green in Richmond, VA.
Glow in the Dark Stars, Moon, and Clouds
by Eugene Bradley Coco ($5.99; Golden Books 1990)
[from the Summer 96 edition of Dialogue, Volume I, Issue 1]
A delightful book about a boy who catches some stars from the sky so they could shine only for him. Colorful and busy, this books is sure to keep a child's attention. Read it at bedtime and then turn off the lights, so you can see the stars, moon, clouds, and other pictures glow in the dark. Recommended by Melanie Green, this is one of her son Stephen's favorite books (he is 8 years old with TS). Also check out the other Glow in the Dark books. For three to seven year olds.
If you would like to share you/your child's favorite book(s) or would like to recommend a useful book related to tuberous sclerosis issues, contact the editor.
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