THIS CRAZY QUILT

In a year’s worth of blog posts, a mother goes through the complex process of helping her special needs daughter make the transition from childhood to independent adulthood.

In the introduction to her debut work, Edelman quotes a journalist friend: “This is a story that nobody is telling.” From bookstore to blogosphere, there are many accounts of raising special needs children but fewer about caring for a developmentally disabled adult child. Edelman explains that her topic is “the parents’ quest to bring their child to the threshold of adulthood, safely and successfully” and to “provide something of a map for others to use.” As Edelman describes with impressive specificity, there’s a lot of bureaucracy involved—in her case, most of it centered on her daughter’s return home from boarding school and turning 21. At that age, she “ages out” of the Connecticut public school system and other state resources and segues into a whole new frontier of need-based services, of which Medicaid is probably the least complicated. There’s a mass of jargon and acronyms and a crazy quilt of service agencies, all of which Edelman, a licensed social worker, explains fluently. She writes with equal assurance when describing her conflicting emotions: gratitude and frustration with the system and hesitation about when to help her daughter and when to stand back. She writes of her unmistakably heartfelt love for her child and honestly portrays the difficulties of dealing with her disability. The transition of this material from blog to book, however, is somewhat less well-handled. The text seems to have been transferred verbatim, including some dead and absent links, and its practice of beginning almost every paragraph with an italicized subheading is hardly noticeable in a blog but somewhat tedious in a nearly 500-page book. However, the book sensitively does what it sets out to do, documenting a complicated and too-little-discussed struggle in order to help others dealing with similar challenges. This account provides both the practical advice of an insider and the compassion and wisdom of a loving parent.

A must-read for parents of special needs children nearing adulthood.