It is not often that I find a book that gives the unvarnished truth about what it’s like to raise an intellectually disabled child. Not what it is like to first find out that your new baby has a problem, and all the heartbreak that goes along with that (although as the parent of an autistic child, I love those books too), but what it’s actually like to raise them to adulthood.
Jane Bernstein‘s memoir, Rachel in the World, here, is a revelation. This is a book that should be read by every parent of a teen-ager or young adult who is intellectually disabled, and also every legislator making budgetary decisions about what our adult population needs. Published it in 2007, some of it is dated (for example, Bernstein now regrets using the word retarded, a common descriptive term back then), but the author’s insights are as relevant now as ever.
Bernstein’s daughter Rachel was born with optic nerve hypoplasia. The cause is unknown, although it appears that some insult to the fetus, possibly viral, happened during the seventh or eighth week of development. It took years for her to know whether Rachel would be blind (she is, legally, although she makes very good use of her vision), whether her seizures would continue (they eventually responded to medication), or whether she would have an intellectual disability (she did). In addition, her behaviors made her extremely difficult to raise.
Rachel in the World is the best book I have read about parenting a child that has grown out of the cute, “kittenish” stage and still requires 24/7 care. When Rachel was young, Bernstein thought that the whole story was about love — that loving Rachel was enough. As time went on, she learned that in fact it is so much more. Bernstein documents this evolution in vivid detail. It turns out that in addition to love, which was always there, Rachel needed outside support; more support than Bernstein could have imagined when Rachel was little. She needed a village.
Like most of our population, Rachel needed assistance with both employment and housing. Bernstein made enormous efforts on both fronts, working with various state agencies whose people sincerely tried to help. The chapter called “Rachel at Work” details what Bernstein had to go through to make sure her daughter would have something to do when she graduated. Bernstein had always blithely assumed that Rachel would be able to work, without really considering what Rachel was able to do. In fact Rachel was easily distracted and couldn’t stay on task; was an incessant talker, and was unmotivated. For Rachel to become a productive member of society required herculean efforts by her school system, her parents, and the community at large.
The second part of the book is all about finding Rachel a place to live outside of the family home, which proved even more difficult.
Parenting an adult disabled child, Bernstein saw in the faces of other older parents of a kind of blunt fatigue. “The parents of young children are full of tears and rage, consumed with blazing hope and a belief that their love will conquer everything. But we – parents of the older group – are tired. When we see each other, we never cry. We are not part of support groups. No one rails about the system, though the system utterly fails our children when they grow older. . . . When did I change?”
Rachel in the World is Bernstein’s attempt to answer that question, and is a call to arms to our legislators who are responsible for budgeting sufficient money to take care of our adult intellectually disabled population. They need housing, caregiving, and supported employment or day programs. We are lucky to live in a state that understands this, but budgets are always tight, even without Covid. We can never be complacent about advocating for this population. In my opinion, Bernstein’s parenting journey explains this better than any data or statistics ever could.
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