Book Review: The Down Syndrome Transition Handbook

Down Syndrome Transition Handbook
Cover image courtesy of Woodbine House

The Down Syndrome Transition Handbook:

Charting Your Child's Course to Adulthood

By Jo Ann Simons, MSW; 289 pages.

In a nutshell: Even if your child doesn't have Down syndrome, you'll find helpful information in this handbook for dealing with special-education transitions, special-needs trusts, guardianship, supported employment and housing, government benefits, and all those other adulthood issues you've been trying not to think about.

Simons is a parent who's lived through her son's transition and has a lot of information and opinions to share.

What You Might Like

  • Author is both a parent and a professional, offering an informed but compassionate viewpoint
  • Information useful for kids with a variety of diagnoses, not just Down syndrome
  • Offers details and advice on special-needs trusts, guardianships, and government entitlements
  • Book is well-organized so you can find the section you need at any particular time
  • Stories from the author's family and others lend a personal perspective

What You Might Not

  • The author is opinionated on certain subjects, which may bother those who feel differently
  • It's disheartening to learn how much negativity is necessary to get needed services
  • Might have benefited from some forms and checklists to help parents get organized

Full Review

Have you planned for your child's future? Often, parents of kids with special needs are so caught up in the crisis of the moment that it's hard to worry about transitions that are years away.

We're fighting with schools, consulting with specialists, driving to endless therapy appointments, struggling with homework, developing behavior strategies, researching remedies, handling hospitalizations. Planning for the future seems presumptuous, and then the least of our worries. But kids do grow up if we're lucky, and the time comes when they have to make the transition from school to adulthood and a whole new advocacy challenge for their moms and dads.

Jo Ann Simons has been through that transition as a parent of a son with Down syndrome and has helped other families through it as a social worker. The Down Syndrome Transition Handbook draws on all that experience to lay out the challenges in a compassionate yet no-nonsense way. Though the information is written specifically for families of young adults with Down syndrome, and the language and stories used throughout reflect that, the book will be worthwhile reading for parents of kids with any intellectual or developmental disabilities that will cause them to rely substantially on government assistance for their medical, occupational, and housing needs.

Depressing reading, too, if you've become accustomed to playing up your child's strengths and clinging to hopes that your young adult might be able to make his or her way in the world. Simons spells out all the ways in which a parent's advocacy style has to change to hold on to those government entitlements, as the things you may have felt like fighting for -- from high-school diplomas to evaluations that recognize abilities to full-time paying jobs -- are likely to cost your child more in supports and services than they're worth.

I found much of this book terrifically disheartening, the adult equivalent of those IEP meetings in which professionals kindly explain to you all the ways your child will never amount to anything. It made me want to find a way to change the system, rather than circumscribe my child's life to fit within it.

Whether you wind up making the decisions Simons recommends or different choices, it's still good to know what you're up against. This well-organized and generally friendly resource, which considers a variety of options beyond the ones the author personally favors, lays the issues out well.

Read an excerpt.

Disclosure: A review copy was provided by the publisher.

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