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If you are concerned about your child’s future and the transition out of your home, this may be the book you’re looking for.  As the author says, “Transition will happen, with or without your assistance.”  Here is concrete advice for one of the biggest changes in your and your child’s life.

Parenting an Adult with Disabilities or Special Needs:  Everything You Need to Know to Plan for, and Protect, Your Child’s Future by Peggy Lou Morgan.  Published 2009 by AMACOM.

224 pages, includes index and appendices.

Amazon Rating – 4 out of 5.  My rating – 4 out of 5.

Overview:  This book is about the realities and practicalities of the transition of the adult child with special needs to a setting other than the family home.  Whether this transition comes soon after school ends or not until the parents become unable to adequately care for their child anymore, there are things that need to be addressed and accomplished to make that transition as smooth as possible. 

Summary:  Parental involvement is vital to help ensure the future happiness of the child.  According to the author, “the longer an adult child remains in the nest, the more difficult will be her transition to an adult situation . . . plan early.”  All parents of people with special needs face a nagging question:  what will happen to my child when I’m gone?  The author believes that “loneliness is the only real disability.”  There are many good suggestions within the book’s pages regarding making story books of the person’s life and referring to them often, as these can help tell the person’s story in the absence, temporary or permanent, to care providers.  Naturally, you will want to explore all living options available to your child, and the author recommends drafting a transitional plan where you state your desires for your child’s future.  She goes on to discuss goal setting as a way of accomplishing the transitional plan during what may be a long wait for the transition to be possible.  A lot of detail is given regarding wills, estate planning, and working with an attorney.  The book continues with making the actual transition, a parent’s responsibilities after the transition, and ends with a plea to continue to advocate for the civil rights of people with disabilities and special needs.  The Appendices are very detailed and helpful, and the book has an index, making it easy to find what you’re looking for. 

 

Reactions:  I found the title of the book misleading, expecting it to provide advice on actually hands-on parenting adults with special needs and disabilities.  Instead, I found an author who undeniably knows her stuff but who promotes an early transition into a non-family residential setting, a concept I don’t necessarily agree with.  The author also refers to a previous book of hers (Parenting Your Complex Child, published in 2006 by AMACOM) often enough that it would probably be wise to get your hands on a copy of that, too. 

With that said, I found the book to be helpful in several ways, including providing some legal knowledge I’ve been operating without.  After discussing it with my husband, Wayne, we will put together a transitional plan and some of the other things the author talked about, despite the fact that our planned transition is to Ryan’s sister Michelle’s home, not a residential setting like the group home where Andrew lives, and that we’re not planning on it happening for quite a few years yet.  Still, though we’re not old, we aren’t getting any younger, so it’s better to be prepared in advance rather than left short from a lack of preparedness. 

 

Links provided by the author: 

http://www.peggyloumorgan.com

http://www.autism-society.org

http://www.disabilityinfo.gov

http://www.ssa.gov

http://www.ucp.org