Book Review: You will dream new dreams

What can 63 parents, including 3 who are divorced, 2 single moms, 2 blended families (divorced but now remarried), and 56 married people tell you about raising a child with a disability? A lot! Of the more than 63 children with disabilities highlighted (some families have more than one disabled child), only one child is living in an institutional setting, the others live at home or nearby. The 63 stories are loosely grouped by the age of the child when the book was published. It begins with parents talking about their newborns and ends with parents discussing their adult children.

The title of this book gives you insight into the overall tone of this book. It presumes that parents of children with disabilities experience profound disappointment losing their original dreams for their unborn child (presumably non-disabled) and they need to be reminded that other dreams will emerge.

Speaking directly to new parents of disability children, the editors focus the 63 stories around these themes: You are not alone; even though you experience sadness and feel hopeless, we survived and you will too; there are no easy answers but you will find inner resources; even though you have lost your dreams, you will heal, be happy again and dream new dreams.

The editors' advise new parents to read the stories in small sections. Each story is written by a parent (mostly mothers) and tells the story of how they discovered their child's disability, how it impacts their life, and how they have dealt with it. Each story is followed by personal family information including the names of all adults and children in the family, birth years of children, location, and frequently, vocational information about the parents.

This book is most useful for parents who, like the 63 authors: birthed children they presumed would be non-disabled, were very sad that their child was disabled, and need support and encouragement to reach out to other parents of children with disabilities.

An unusually wide range of disabilities is presented in the book ranging from Down Syndrome (the most common disability mentioned), cerebral palsy and autism to rare conditions such as unbalanced chromosome translocation, VACTERL association, TTTS (twin-to-twin transfusion syndrome, as well as some undiagnosed conditions. Yet the themes of learning self-reliance, getting parent-to-parent support, and becoming an advocate for your child run throughout.

Typical progressions described
Using typical comments from the different parents, here is the progression these parents went through:

1. Shock: "Suddenly the sound of shattering glass echoes in your head. Your heart sinks to the floor... You cry"
2. Sadness: "I cried out to God: 'This pain is unbearable." (p. 27) and "You are tired beyond belief but the night offers no reprieve...you feel acutely alone." (p.103)
3. Wishing their child was not disabled: "Parents of disabled children would give anything for their child to be like anyone else." (p.74)
4. Feeling overwhelmed by disability: "I didn't want my life defined by my children's disabilities." (p. 135)
5. Dealing with professionals "I even lost my name. Professionals called me "Mom". What happened to [my] identity?" (p.154)
6. Finding support from other parents of children with disabilities: "I joined a support group... what a lifesaver...[they] provide support... offer advice, encouragement, and helpful information."
7. Taking back their lives: "Although we have benefited greatly from...professionals, the key to our efforts with Nikki has been learning to trust and rely on our own instincts."
8. Seeing the joy in their child: "We began to see if we made adjustments to create the best world for our son, it would be the best world for us, too." (p. 105)
9. Having a long term perspective: "Over time I came to realize that our child was more like typical children than not, that life holds no guarantees for anyone and that life's very unpredictable nature is what makes it so special." (p. 76)

This book provides important support and validation for parents who are going through this process. It also has an extensive resource section (U.S. only) that gives parents links to key government offices. Co-editor Stanley Klein is a co-founder of Exceptional Parent Magazine and co-editor Kim Schive also works at the Magazine.

Additional personal reactions to the book
A Personal Reaction to the Book

I, too, am a parent of a disabled child. My 11 year old daughter has cerebral palsy. But unlike the parents profiled in this book, I did not experience the "disappointment and anguish... that feels like an open wound that will heal only gradually" (p. xviii) that the editors talk about in their introduction.

The parents of disabled children that I know are frustrated with governmental systems that ignore the diversity of all children; tired of fighting for basic rights; and angry at the seeming endlessness of disability discrimination. But they are not sad that their child has a disability.

In only one of the 63 stories does any parent talk about the medicalization of people with disabilities' lives. All the rest of the stories talk about the "work" of being a parent of a disabled child.

Included in this collection is a famous essay by Emily Perl Kingley "Welcome to Holland". In that essay, Kingley says that having a child with a disability is similar planning a vacation to Italy but ending up in Holland. She encourages parents to "buy new guidebooks, learn a new language, and meet a whole group of [new] people" (p. 216)

Unfortunately in this book, parents are only willing to learn about their disability and their disabled child from other non-disabled people. Only one parent talked to adults with their child's disability. The other 62 never mention talking to any disabled people. No wonder they feel alone. It would be like living in Holland and only speaking Mandarin.

Occasionally parents sneak in disability-positive information. One parent talks about consciously putting her child in both school and play environments that are either disability-focused or non-disabled-focused. She knows that her child lives in both worlds and wants him to have access to maximum information and resources.

I laughed when reading stories of parents who would finally stop fighting their child's disability and begin to let the child lead. As my daughter would say "Duh!" We all learn best when doing something we want to do.

One parent realized that shopping for new dresses encouraged her daughter to walk more than physical therapy did. A parent of an older child finally accepted that his son was learning math concepts better when trying to figure out bus fares than when doing math problems on paper. As the parents said "It's amazing what happens when you stop nagging and start motivating."

For me the most upsetting aspect of the book is the multiple levels of invisibility. Although a large percentage of parents of disabled children get divorced, this book is overwhelmingly written by married people. There is no mention of race, adoption, of the age of parents, of parental income, or sexual orientation. These factors heavily influence the availability of resources for raising a child with a disability.

There are no stories by parents who chose disabled children. During one my friends' prenatal testing, she learned her daughter had Down Syndrome. So she and her husband intentionally chose a name that was easy to say and spell. She told me that although her hospital has many support groups for pregnant women who aborted their disabled fetus, there was no support group for women who kept their disabled children.

Books like "You will dream new dreams" foster the belief that all parents of children with disabilities are sad, disappointed and discouraged. Maybe some parents do feel that way. But lots of us are excited about our disabled children. We talk to them about growing up and moving out on their own, finding romantic relationships, becoming parents and workers. We treat raising a disabled child as one might raising a child of a different race. We realize that our child needs to be culturally literate in both the disabled and non-disabled world.

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