Having the first signs of cerebral palsy doesn’t set your child’s future in stone

One morning, I received a call from a woman named Elena who wanted to ask us some questions regarding her two month old granddaughter, Debbie. Elena had noticed that when Debbie’s back was touched, she would arch her back and throw her head backwards as well. Her right arm was always clenched in a fist, and she did not move very much. Elena told us that she had already gone to a pediatrician, but had been told that these were not signs of anything serious. As a mother with three kids herself however, she knew that there was something wrong. Considering the signs she had described, I knew that we had to bring Debbie in for some treatment. Once the girl was brought in, I could see why Elena was concerned. Debbie’s right leg did not move as much as her left, and her right hand was always clenched. Her body was stiff and tense, and when we tried lifting her off the ground, she would not tilt her head forward like a child would usually do.

These may be the first signs of cerebral palsy. If a child does not follow an object with his or her eyes, or does not want to turn his or her head to one side or the other, this may also indicate that something is wrong. The same can be said if a child does not grab for things with his or her hands, or if he or she is delayed in rolling, crawling and sitting. Should this be the case, it is best to start your child’s treatment as early as possible.

In the first few months of life, a child starts going through the normal stages of development. He or she learns how to roll, sit up, crawl, and move his or her arms and legs. If a child misses one of these milestones however, it will have a snowballing effect on the rest of his or her progress. For example, if he or she is not learning to get up and sit, it will impair his or her trunk mobility. As a result, the head or legs will not be used as much and the child will be unable to crawl properly. If we address these issues before they hinder a child’s growth and progress, we can minimize the effect of the condition in his or her daily life to a point where it is undetectable. That is why today, Debbie is completely cured, running and playing just like any child.

In many situations, both the medical and therapy community use a child’s diagnosis as a label accompanied by the claim of “permanent disability.” Yet, I have seen individuals with cerebral palsy who are able to lead independent, fulfilling lives. As a parent, it is up to you to teach your child about the world and to guide him or her through any difficulties he or she may come across.

So, if you see any behavior that seems atypical for your child, take initiative. Don’t be afraid to ask questions, and gather as much information as possible. Go to more than one physician, and make sure to consult experts who deal with neurological disorders more often than your general pediatrician. Also, even if your child does get diagnosed, don’t let yourself doubt his ability to develop and become the best he can be. You must believe in your child’s abilities, and focus on making realistic goals and teaching him or her how to achieve them.

My philosophy is that there is no treatment, only life. That is why as a therapist, I believe that there are no exercises to learn, only function. When I have a patient, I only guide him or her during the function so that he or she will learn to do it independently. I also request parents to continue working with their child at home so that there is no disruption in the teaching and learning process. As a parent, don’t let anyone set your child’s future in stone, and remember: your child is capable of things no one can predict.

For more articles, visit http://www.enabledkids.ca

Breakthrough Parenting for Children With Special Needs

By Judy Winter; 258 pages. Subtitle: Raising the Bar of Expectations




Winter combines her talents for journalism and parenting in a book that is part inspiration, part how-to, and wholly optimistic about your family's survival as you take on the challenge of raising a child with special needs. It's a particularly useful guide to those just starting out on the journey of dealing with special needs, and hearing from everybody that it's too hard and their life is over and their situation is tragic. Breakthrough Parenting offers a much-needed antidote to all that gloom and doom.


Pros
Takes an upbeat approach to the challenging task of special-needs parenting. Gives parents of children newly diagnosed a voice of experience to guide them, Full of specific tips for a variety of situations and relationships. Includes inspirational stories of individuals with disabilities succeeding. Offers listings of resources with every chapter

Cons
More useful to those just starting out than those who've been at it a while. May seem too upbeat if you're really struggling. Book was published in 2006, so some resources may not be up to date

Description
Part One: Welcome to Breakthrough Parenting for Children With Special Needs

Chapter 1: The Perfect-Baby Dream
Chapter 2: First You Cry
Chapter 3: No Labels, Yes Hope
Part Two: Guidelines for the Preschool Through College Years
Chapter 4: The Pre-K and Elementary Years
Chapter 5: Middle School, Junior High, and High School
Chapter 6: Advocating for Techniques and Programs That Work
Part Three: Focusing on the Family
Chapter 7: Embracing a New Definition of Family and Planning for the Future
Chapter 8: Preserving Your Marriage, Caring for Yourself, and Surviving the Death of a Child
Chapter 9: Meeting the Needs of Siblings
Part Four: Honoring Special Needs Excellence
Chapter 10: Honoring Special Needs Excellence
A Conversation With Timothy P. Shriver, Ph.D.
A Conversation With Dana Reeve

Guide Review - Book Review: Breakthrough Parenting for Children With Special Needs
Learning that a child has special needs can be traumatic for parents -- in no small part, because professionals tend to present it as the End of the World. They'd do a much better service by passing on this book, which acknowledges the grief that must be processed but also provides an action plan for getting on with your life and your child's.

Each section of the book starts off with a "Bill of Rights," including one for children and young adults; parents; siblings; and professionals. Among the rights Winter bestows on parents are the right to "Grieve the loss of a child with special needs" and "Ask tough questions, including Why? -- but also to "Celebrate your child's birth," "Move about freely in society with your child," and "Be proud of your child's accomplishments." Since our children are so often looked upon as nothing but tragic, I appreciated the balance.

Illustrating the points on hoping for the best for your child are stories of individuals with special needs and their families breaking expectations and living their lives. Also helpful are lists of resources at the end of each chapter that can send you off in pursuit of information for your particular situation.

If you've been a special-needs parent for a while and found your way to advocacy and empowerment and favorite resources of your own, the tips and pep talks here may be less useful than if you'd found them in the early days. Still, as your child grows and changes and moves on through school, there are always new suggestions that can help. And it may inspire you to think about how you can pass on your experience to parents starting out with trepidation, in a support group, a blog, or even a book of your own.

Parenting and Cerebral Palsy