Parenting A
Child With "Special Needs"
"My parents
understood how much I wanted to be allowed to
participate in the same activities as my peers."
There have been many
labels used over the years to describe children who are
not "normal"; such as, "handicapped,"
"physically-challenged," "disabled," "retarded,"
"developmentally delayed," and the latest label,
"special needs." Personally, I think that every child
is special and all children have needs. But "special"
children have a few extra "needs" that their parents and
caregivers must fulfill in order for those children to
thrive. My own parents did a wonderful job of fulfilling
these needs for me after I was born with a birth defect
that resulted in my having to use an artificial leg. By
fulfilling these needs, they gave me the ability to
survive and thrive in this world. I hope that by sharing
what I have experienced and learned, both as a child
growing up with a disability and as a mother whose
oldest child was born with clubbed feet, I can help
parents of children with these "special needs."
One of the most important
needs that these children have is the need to be treated
"normal." They may require specialized medical care but
they don't require "special treatment" from their
parents. Simply put, these children need to be treated
like any other child as much as possible. How do you do
this? By forgetting the disability and remembering the
child. Look beyond the physical and/or mental disability
and recognize that behind it is a child just as "normal"
as any other and wants to be treated that way. My
parents always treated me as a fully capable person and
never considered me to be "handicapped" but as a typical
kid who just happens to have one leg. I am no better
than and no worse than anyone else. My disability does
not define who I am, it is simply a part of me. Your
child, no matter what his or her disability, is still a
child and should have every opportunity possible to
enjoy being a child.
Although my parents were
able to treat me as a normal child, they still had to
deal with people who did not. They didn't attempt to
hide my disability or try to shelter me from the stares,
whispers, and name-calling that sometimes came from
other people. They taught me not to be ashamed or
embarrassed about my leg but to answer questions about
it so people could understand. I soon learned that once
people understood my disability they usually treated me
as a normal kid too. I also learned that not everyone
had bad intentions for treating me differently. Quite
often they had good intentions. For example, one gym
teacher in elementary school was worried about letting
me try the balance beam until my mother told him that he
didn't need to be so protective. He was afraid that I
would get hurt but she explained that I would be hurt
more by having to sit out than I would if I fell off the
balance beam. After that, he wasn't afraid to let me try
the balance beam or any of the other physical activities
that I wanted to participate in (which was everything
that the rest of my class got to do).
My parents understood how
much I wanted to be allowed to participate in the same
activities as my peers. This is another important need
but one that some parents have a difficult time with
because of fear. As parents, we want to protect our
children and it can be hard to let them risk failure or
even injury. This is especially hard when your child has
a disability. It hurts me when my daughter comes home
from school upset about losing a race in gym class
because of her feet. Part of me wants to protect her
from the pain of losing, but that would do more harm
than good because children need to experience both
failure and success. So, I encourage her to keep trying
and to remember that doing one's best is more important
than winning or losing. Now I understand how hard it
must have been for my parents. I never won a race, never
made a homerun, and wasn't very good on the balance beam
but I am grateful that they didn't stop me from trying.
They were able to set aside their fears and let me
participate in sports and other physical activities (as
long as my doctor agreed). If you are unsure if an
activity or sport is appropriate for your child, talk
with your child's doctor. There are many children with
disabilities who do all kinds of sports (just look at
all the sports in the Special Olympics). Many sports and
physical activities can be tailored to accommodate a
disability so if your child is interested in a
particular one, find out if there is a way that he can
participate. Taking part in sports and activities is a
great way to help a disabled child feel "normal." It
had a big impact upon my life.
When I was seven, I
expressed an interest in baton twirling during the
half-time of a football game. My mom immediately set
about finding a baton twirling instructor. We found a
wonderful teacher, Doris, who was willing to teach me
and allow me to participate in group routines even if
she had to adapt some of the dance steps to accommodate
my leg. Doris let me march in parades with my class even
though in the early days I could only make it about
halfway then had to be carried for the rest of the
parade, (usually on her husband's shoulders).
Eventually, I was able to march the whole parade route.
One year I even marched in three Christmas parades in a
single day. My mother was concerned that my leg would
hurt after so much marching but she knew how important
it was to me so she reluctantly let me. The pain
afterwards lasted only a few days but the feeling of
success has never gone away. By giving me the freedom to
participate in sports, my parents and teachers helped me
to achieve successes and to experience failures. They
instilled in me the belief that I could do just about
anything I set my mind to as long as I was willing to
work a little harder for it than everyone else.
My parents also
recognized that children need responsibilities, even
disabled children. Responsibility teaches a child
self-discipline and helps him develop a sense of
self-worth. My parents expected me to help with chores
around the house, to clean up after myself, and to help
take care of my younger siblings. Because they never
treated me as "helpless," I never saw myself that way.
Instead of feeling like a burden to my family, I felt
like they needed me as much as I needed them. Almost any
child can be given tasks tailored to that child's
abilities. Assess your child's strengths and abilities,
then give him responsibilities to fit them. Even if the
child needs assistance to carry out his
responsibilities, he will still benefit because he will
learn to see himself as a contributing member of his
family and eventually, of society. It doesn't matter how
big or how small the task, the benefit is the same.
Another need that
disabled children have is the need for discipline. All
children misbehave or disobey at least once in awhile.
Children with disabilities do too and they need to be
disciplined just like any other kid. It's natural for
children to "test their limits" to learn right from
wrong. Parents need to set those limits and enforce them
so kids can learn. This is one of the most difficult
tasks of parenting. So it's no surprise that it can be
even harder when your child has a disability. Some
parents may feel guilty about disciplining because they
feel sorry for their child. So they make allowances and
excuses for inappropriate behavior. That is a great
disservice to the child. It teaches him to use his
disability to get his way. It also makes it very
difficult for these children when they grow up and have
to live in the real world which isn't as forgiving and
understanding. You can love and accept your child
unconditionally without accepting bad behavior. I was
never allowed to use my leg as an excuse for bad
behavior and was taught that the world did not "owe" me
anything. I was taught to take responsibility for my
actions and accept the consequences; a valuable lesson
that every child should learn, disabled or not.
Finally, a child with a
disability needs help to accept the disability in a
positive way. Sure, there are plenty of negatives that
come with any disability but if you look closer, there
are positive things to be found as well. For me, any
complaints I have about living with an artificial leg
pale in comparison to the good things that have
resulted. Having an artificial leg has brought me into
contact with many wonderful people that I probably would
not have met otherwise. It has given me the opportunity
to help others faced with a disability to see that it is
possible to live life fully. It gave me the chance to be
on television, on the radio, and in the newspaper as a
role model for other children with disabilities and to
bring awareness to organizations such as the Shriner's
Hospitals for Crippled Children, Easter Seals, and the
March of Dimes. Because of my leg, I dealt with doctors,
nurses, and hospitals on a regular basis which heavily
influenced my decision to become a registered nurse.
(Not to mention all the great practical jokes I've been
able to play over the years!) All of these things have
enriched my life far more than my leg has hindered it.
What some may call a curse or tragedy, I choose to call
a blessing. I sincerely hope that somehow you and your
special child can find a way to look upon his or her
disability in the same way.
Whether your child has a
minor disability, a severe disability, or even multiple
disabilities, he or she needs your loving support,
acceptance, and guidance more than anything else. You
also need support and guidance to help you deal with
raising a special needs child. Seek out resources for
parents in your situation. There are numerous support
groups, web sites, books, and other resources available
to assist you in raising your child and fulfilling your
child's "special needs."
Tamara Walker a.k.a.
MomRN is a pediatric registered nurse, professional
child care provider, web entreprenuer and work at home
mom with two children. She owns and operates
MomRN.com<http://www.momrn.com>.
Tamara's passion is to help parents and children live
safer, healthier, happier lives. She can be contacted at
mailto:momrn@momrn.com and would love to hear from
you!
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