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Parenting An Adult with Disabilities or Special Needs (AMACOM Books January 2009)

It is full of advice for transition planning to help parents help their adult child who experiences special needs to create an adult life that works for the individual.
This page was last updated: March 29, 2011
Parenting An Adult with Disabilities or Special Needs:
Everything You Need to Know to Plan for and Protect Your Child's Future

PARENTING YOUR COMPLEX CHILD
Becoming a Powerful Advocate for the Autistic, Down Syndrome, Bipolar or Other Special-Needs Child (AMACOM Books 2006)
A Review of Parenting Your Complex Child by Andrena Lockley, Education Coordinator, Independent Living Centre of Waterloo Region

"Two essential words: communicate and adapt" and "advocating is not waging war" are just a couple of the advice gems in Peggy Lou Morgan's incredibly useful book entitled Parenting Your Complex Child. She offers excellent suggestions to parents and educators of children with multiple disabilities.

Morgan is the parent of 23 year old man named Billy Ray, who has autism, down syndrome, attention deficit hyperactivity disorder (ADHD), as well as bi- polar disorder. The combination has brought about unique and complicated hurdles for the family to overcome. She writes of the successes, setbacks and frustrations of the family in a way that only a parent could.

Morgan's book is based on her own experiences with her child, however, she states that she understands that all children are unique and modifications to the plans she suggests will be likely. Her "every child is different, but here's what worked for us" approach is incredibly valuable. The strength of this book is that she manages to put Billy Ray first both in life and in her analysis. Putting the child first means attempting to see through the eyes of the child and understand the frustration of not being understood as well as the difficulty in expressing one's needs and wants combined with the fear the child experiences when he/she is confused.

There are no steadfast rules as to what to expect with a complex child such as Billy Ray, or with any child for that matter, and Morgan knows this. What the text does is address the day to day problems as well as possible solutions, ranging from difficult morning routines, to hiring staff, dealing with physicians and other professionals, minimizing power struggles between adult and child and other such practical advice. Coming from a parent's perspective, Morgan addresses the hostility, fear and insensitivity of the outside world. This intolerance suffered by children with disabilities is one that is rarely addressed. Often times, parenting advice books suggest ways to make one's child fit in. Not Morgan, her main concern is having Billy Ray accepted for who he is—not who he could be. In addition, this book tackles complicated long term decisions for issues such as planning the child's future once you, the parent, are gone (again, a very delicate yet important topic that is rarely addressed in other advice books of this nature).

Morgan does not get lost in her own story. She offers anecdotes to be sure, but only as examples for the reader to better understand her child and situation. While sometimes it is therapeutic just to read the words of others going through similar situations, it is more beneficial to read the accompanying concrete, step-by-step instructions and suggestions
For example in the first chapter she lays out some general characteristics of the complex child followed by a description of the difficulties she encountered. Next, she offers an easy to read chart that compares parenting approaches based on the complexity of the child. For example she has one column for a particular behaviour, another for the potential response by a parent to an average child; another for potential responses by parents to a less impacted developmentally child, then a final column for the potential response of to complex developmentally disabled child. It is a straightforward technique that helps to see the range of approaches in a given situation based on the child.

Morgan is a big believer in documenting everything. Throughout the book she suggests that the parents or care providers of a child with complex needs keep a journal as a record of medications, changes in function level and behaviour, as well as triumphs. This helps to find patterns. For example, is there a specific time of the day when a certain behaviour occurs? Is it after a certain medication or food? At the end of the book she offers several samples of how to chart all of this information to avoid losing any information and keeping it all organized. As Morgan explains several times in her book, these charts and journals are useful in meetings with educators, doctors and other professionals.

Certainly, this is not to suggest that the advice and solutions Morgan offers are fail-proof or always the answer, however, they are a place from which to start. She writes from a position of great strength and honesty, admitting her mistakes and offering them up for others to learn from. Morgan discusses the notion of creating community for the child; which in my view is a very powerful and important one. One I felt that could have been explored more deeply.

This is not the first parenting advice book of its kind. Others have outlined their experiences, offered suggestions and advice based on the lessons they have learned, but somehow Morgan manages to do all this in an easy to read manner that is neither preachy nor all knowing. She does well at presenting other perspectives, all the while keeping the child at the centre of her discussion. In addition to her own advice she offers outside sources such as books and websites throughout. This is a must read for any parent, care provider or educator of a child with multiple disabilities.

SampleChapPYCC.pdf
SampleChapPYCC.pdf
To read a sample chapter click here.
To read a sample chapter click here.
ch02_PA.pdf
ch02_PA.pdf
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