Literature
Children with Cerebral Palsy: A Parents Guide, by Elaine Geralis
My Exodus, by Tait Berge
Cerebral Palsy: A Complete Guide for Care giving, ( Johns Hopkins Press Health Book), by Freeman Miller and Steven Bachrach
The Official Parent's Sourcebook on Cerebral Palsy, by James N. Parker MD, and Phillip M. Parker MD
Everything You Need to Know About Cerebral Palsy, by Dion Pincus
Coping with Cerebral Palsy: Answers to Questions Parents Often Ask, 2nd edition, by Jay Schleichkorn
Yes, I Can: Challenging Cerebral Palsy, by Doris Sanford
Going Places: Children Living with Cerebral Palsy, by Thomas Bergman
Journey into Personhood, by Ruth C. Webb
My Perfect Son has Cerebral Palsy: A Mother's Guide of Helpful Hints, by Marie A. Kennedy
The Cerebral Palsy Handbook: A Practical Guide for Parents and Carers, by Marion Stanton
Cerebral Palsy: The Child and Young Person, by L. Cogher. Chapman and Hall, 1992
The Natural History of Cerebral Palsy, by Bronson Crothers and Richmond S. Paine. Cambridge University Press, 1991
Standing Tall, by Paul Harasim. WRS Group, 1993
For Teens:
Cerebral Palsy, by Nathan Aaseng. Watts, 1991
For Children and Pre-teens:
Yes, I Can: Challenging Cerebral Palsy, by Doris Sanford. Questar, 1992
Going Places: Children Living with Cerebral Palsy, by Thomas Bergman. Gareth Stevens, 1991
Arnie and The New Kid, by Nancy Carlson. Viking, 1990
I'm special too! Siblings of special needs children.
by Judy Winter
Being the sibling of a child with special needs may be challenging. With the
support of a loving family, this experience can result in rich life lessons
that serve children well. So take time to let your children know they are
all special.
It's not easy being the brother or sister of a child with special needs.
These siblings may believe their parents' time and energy must go to meet
the demands of their brother or sister with a disability, leaving little
time for them. Research shows that siblings of children with special needs
are at greater risk for depression. They also tend to be over-achievers to
make up for the shortcomings of their brothers or sisters. Plus, they
sometimes bury their needs to avoid adding conflict to already stressed-out
families.
Many parents of children with special needs function on too little sleep,
visit lots of hospital emergency rooms, and are primary caregivers 24/7. So
it's easy to see how the needs of other children in the family may go unmet.
That is especially true if these children appear to be doing well in other
important areas of their lives, including school.
It's not easy trying to be the perfect child.
Being the one without a disability can be a pretty heavy load to carry, too.
Through no fault of their own, these kids are asked to cope with the loss of
a simpler and more normal family life, and give up regular family outings.
They may be afraid their siblings will embarrass them in front of their
peers. They may wonder how special needs in the family will affect their own
social life, future plans and responsibilities. Add to this mix powerful
emotions like anger, grief, fear, and the protectiveness siblings often feel
toward the child with a disability, and it's easy to see why these kids need
to understand where they fit in a challenged family.
Seek a regular life in spite of special needs.
From the beginning of our special needs parenting adventure, we promised our
oldest child, Jenna, that her brother's special needs would not shortchange
her life dreams. During the past 12 years, it hasn't been easy to keep that
promise. But now we are enjoying the fruits of our commitment and spending
time with two well-adjusted and happy children. Jenna, now 18, is following
her long-held dreams of becoming a photojournalist. She has high self esteem
and a wisdom beyond her years. And she's a wonderful big sister and role
model for others.
Here are six tips to meeting the needs of siblings without disabilities.
1. Make one-on-one time with the child without a disability a priority.
If that means getting a sitter, do it. Siblings deserve time away so they
can have your full attention. Such efforts may also help your child make it
through those days when special needs demands more of your time and
attention.
2. Encourage your child to express honest feelings about having a
brother or sister with special needs. Siblings may hold back emotions to
avoid adding stress to the family, or because they feel guilty about having
negative feelings. Let them know these feelings are normal.
3. If despite your best efforts, your child still has a hard time
coping with her role, seek professional help. This can challenge even the
most well adjusted child. It's OK, and sometime necessary, to ask for help.
4. See your family's special challenges as a chance to model positive
problem-solving behavior for your children. Kids with brothers and sisters
with special needs often display a maturity and sensitivity beyond their
years, which can serve them well in other challenging situations.
5. Encourage your children to keep journals, then honor their privacy.
6. Try hard to avoid using siblings as caregivers. There are community
agencies designed to help with these needs. Access them.
Judy Winter <mailto:jappwinter@aol. com> is an award-winning journalist and
recipient of the Michigan Federated Chapters of the Council for Exceptional
Children 2002 Exceptional Parent Award for her work promoting quality
education for children with special needs.
Jenna Winter, now 18, spends time with 12-year-old brother Eric. Her parents
have worked hard to meet her needs as a regular child in a family with
special needs. This has allowed her to aim high, while becoming sensitive to
the differences of those around her.
visit Partnership For Learning at http://www.partners hipforlearning.org
Becoming Your Child’s Best Advocate
By Liberty Ebright
Being a parent is a huge job with a laundry list of requirements. At any given time you might need to put on a different hat and take on a new role. Sometimes you act as a nurse, cheerleader, teacher, police officer, chef, dietician, chauffeur, etc. As parent of a child with special needs, you will also have to become an experienced advocate.
The following are some steps you can take to become the best supporter of your child’s rights and needs. They can be applied to doctor visits, school meetings, etc.
* Believe in yourself and your abilities, remind yourself that you are important and have a right to be involved in your child’s decisions.
* Deal with your perceptions or feelings about yourself as a parent of a child with special needs. Don't let feelings of anger or denial get in the way of your ability to negotiate.
* Be prepared for all meetings, doctors, school, etc. Know ahead of time the important points you want to make. Ask relatives and friends for their input. Make a list and take it with you.
* If possible, take someone with you to take notes, to help you make a point, or to provide moral support.
* Learn to communicate assertively, rather than passively or aggressively. An assertive person clearly and positively states his/her point of view and takes into account what others have to say. Other people generally respect an assertive person.
* Share your dreams and your vision for your child. Talk about your child’s strengths, interests, abilities, needs, and what things you would like your child to do better. Suggest the kind of environments and/or supports and services that you believe will maximize your child’s abilities.
* If you don't understand something, don’t be afraid to ask for an explanation. (We are all guilty of this.)
* If you don't agree with something, speak up and say so. Give facts to support your point of view, or just say it because you have a gut feeling. At least you will get it off your chest.
* Be willing to learn from others. Be open-minded and a problem solver.
* Show that you want to listen. Look and act interested.
* Understand your rights, as a parent of a patient or a parent of a student. Acquire knowledge.
The ultimate responsibility for your child’s growth and education is in your hands. Reach out to professionals who can help you, but don't give your responsibilities over to them. You are the constant in your child’s life and will need to manage and coordinate the services he/she needs as professionals come and go.