The Right to a Full Life
by Dorothy Fickenscher
Rare Books Media

"“...things have worked out so that each has been able to live the life they want. It just took a little longer..."

Fickenscher is a mother who gave birth to a set of twins in her late thirties. Elaine and Louis both have disabilities, but they share a common advantage of having parents who refused to accept the limitations described by doctors at their birth. Their mother especially was willing to fight for help and resources so that each could have the life they wanted. Elaine was immediately diagnosed with Down syndrome and received the much-disliked label "mongoloid." Louis was later diagnosed with Tourette's, a childhood nervous system disorder. Elaine's brother helped their mother support her; they were a team. As a young boy, Louis announced to the parents of a disabled child that life isn't fair. He chooses to live a local phone call away from Elaine.

One thing Fickenscher makes clear is that there is a lot of help available. She helpfully notes that parents can get financial aid and generate local support such as classes, groups, and a team that even non-disabled children will join and appreciate. The author's educational background helped support her children and fellow students. Fickenscher spent the children's early years researching options for her daughter, which turned out to be easier than for her son's less-recognizable handicap. She learned research skills while getting a master's degree in education, and her background helps enrich the narrative.

The wealth of useful information the author has gathered is organized in paragraphs with catchy headings such as "An Individual First, Not a Disability" and "A Work in Progress." Although individual disabilities can present more or less serious issues than those addressed in this book, the teaching makes it plain that parental resourcefulness is a key factor in caring for children with disabilities. This book offers much useful advice and encourages confidence that a satisfactory outcome is possible for parents, siblings, and the disabled.

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