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Recently, I was asked to give a speech to parents of very young children
with disabilities on the topic “How to put the fun back in your life after
having a child with a disability.”
I was struck by the complexity of the subject. So many of my friends and
neighbors are “stressed out” from jobs, family life and daily living without
the day-to-day emotional roller coaster of living with a child with a
chronic problem. How can we then handle this added burden in addition to all
the other demands in our “push-push” lives?
I looked the subject up in several sources and obtained some valuable
information. I was able to document the reality of the serious, long-term
effects of the burden we carry, such as the increased rates of divorce and
depression in our families.
Although this information is important, mostly I want to speak from the
heart, because, although I am a professional in the special education field,
my real expertise and understanding (and I’m a snob about it) comes from
being there, from having a child with a disability. I consider this to be a
gift that my daughter has provided me with – it gives me an advantage when
communicating with other parents.
Let me give you a little more information. I’ve been married for 19 years to
the same man and have two children. My 16-year-old daughter, Sally, is
mentally retarded. She was born with several medical problems including a
heart defect. Her first year of life was rough with several hospitalizations
and medical crises. Sally has a severe speech impediment, making her very
hard to understand. My second daughter, Jill, is 14 and perfectly fine.
EVERYTHING CHANGED
The first year of Sally’s life is still vivid to me. It was a frantic time.
I was depressed, anxious, stressed, uncommunicative, despondent, panicky and
totally absorbed in my new baby. Everything changed. My husband and I were
no longer a young, healthy, carefree couple anticipating a normal family
life. We began the process of grieving.
Basically, my entire personality changed. My husband’s did too, but to a
lesser extent since he went off to work every day. I stayed home dealing
with the definite added demands of a child with a disability. My husband’s
upsets were certainly a reaction to my depression. The marriage became quite
strained. Sally became the focus of my life; essentially, she controlled my
life.
I’ll never forget, as our marriage continued to be stressed, the comment of
a marriage counselor we sought for help when Sally was three and Jill was
one. After unburdening myself to him and explaining my unhappy emotional
status, he blithely commented that my problems bore no relation to Sally. He
said I was “copping out” in suggesting that she could produce any stress in
my life!!!
Though the years, my behavior with Sally has revolved around a couple of
themes, at first on more of an unconscious level, but now more obvious to
me.
I COULD MAKE HER NORMAL
First, I thought that if I worked hard enough with her I could make her
normal. And when one is focused in this one direction, it’s pretty hard to
relax and enjoy life. My frantic interventions with her were constant when
she was younger and only with strong self-discipline have they decreased
recently. After all, here I was a special education teacher. If I could
teach other children, I could certainly teach Sally.
My behavior with her and my other daughter has been different. I would
always engage Sally in some “important” educational game, something
therapeutic. Neither she nor I were happy. I often worked with her to the
point where I would be in tears, and she would be on the verge of a tantrum.
I was so intense that my husband would have to order me to stop working with
her.
SACRIFICING MYSELF
The other component of my behavior was the idea that if I sacrificed and
worked hard enough with Sally, I could rid myself of the guilt I felt for in
some way causing her problems. Psychiatrists would have a lot to say about
this. Guilt is powerful. It’s hard to enjoy life while you are wallowing in
it.
Guilt is non-productive, as is blaming yourself, your husband, your doctor,
the food you ate while pregnant, or anything or anyone else for your child’s
problem. While I was engaging in this obsessive-type behavior I had little
time for other people, other interests or for myself. I believed that no one
could help Sally as well as I could and that no one else knew how important
these constant interventions were to her future.
TRUTH HURTS AND HEALS
This all brings me to the hardest part – acceptance of the truth. It hurts,
and we can all arrive at this acceptance only gradually over time. When we
are able to come to grips with our children’s problems, to face them
squarely and rationally, then we can begin to find peace.
This is the key. You cannot do it all, change it all or fix it all. To help
your special child, you must take care of yourself as well as the needs of
your husband or wife and other family members.
GETTING OUT BY YOURSELF
So begin by getting out by yourself or with your spouse. If this causes
apprehension, start leaving for very short periods at first. Where should
you go? Anywhere – movies, a walk, dinner – but go by yourselves and without
guilt. Gradually try to let go of the notion that your existence revolves
only around your child. The child does not take away your right for
happiness and independence. Your state of relaxation after having a break
from daily demands will affect those around you in a positive way.
For some, getting out and finding other outlets may involve joining support
groups concerned with children with disabilities. This is often very
therapeutic, but consider that a total immersion in the world of
exceptionalities is not really a respite. Bowling, for example, is. As a
matter of fact, physical exercise is wonderful. I have been jogging now for
over 10 years, and my half-hour run really allows me time to sort matters
out and put things into perspective.
Now that I have stressed the need for free time out, who will watch your
child? This is an obstacle, but not an insurmountable one. Try other family
members. If they don’t offer, be assertive and honest and request their very
needed and very appreciated help. Ask friends and neighbors. Rack your brain
– you’ll find someone. Also, the next time someone asks you how they can
help, tell them. Don’t be too nervous, proud or shy to accept such an offer.
Remember, this is an uphill battle. Children with disabilities potentially
create disabled families. Force yourself, if necessary, to find new
experiences. You won’t regret it. Focus on your right to have a “normal”
family life and to live a part of your life that does not include your
child. Strive for a lifestyle that is diversified and allows independence,
and you, as well as your loved ones, will benefit greatly.
Shari Klein Weitzner received her master’s degree in special education from
the University of Pittsburgh. Mrs. Weitzner lives with her husband, Jeff and
daughters, Sally, 16, and Jill, 14.
Reprinted with permission from Exceptional Parent Magazine, April
1989, Copyright, all rights reserved by EP. Access or subscribe to the EP
magazine at www.eparent.com or call
1-800 EPARENT.
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There is an
energy in us which makes things happen when the paths of other persons touch
ours.
from the Monks of Weston Priory
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