ARE NOT ALONE:
For Parents When They Learn That Their Child Has A Disability
Author - Patricia
McGill Smith -Executive Director NICHEY
NICHCY News Digest Second Edition February 1997
you have recently learned that your child is developmentally delayed
or has a disability (which may or may not be completely defined), this
message may be for you. It is written from the personal perspective
of a parent who has shared this experience and all that goes with it.
When parents learn
about any difficulty or problem in their child's development, this information
comes as a tremendous blow. The day my child was diagnosed as having a
disability, I was devastated -- and so confused that I recall little else
about those first days other than the heartbreak. Another parent described
this event as a "black sack" being pulled down over her head,
blocking her ability to hear, see, and think in normal ways. Another parent
described the trauma as "having a knife stuck" in her heart.
Perhaps these descriptions seem a bit dramatic, yet it has been my experience
that they may not sufficiently describe the many emotions that flood parents'
minds and hearts when they receive any bad news about their child.
Many things can be
done to help yourself through this period of trauma. That is what this
paper is all about. In order to talk about some of the good things that
can happen to alleviate the anxiety, let us first take a look at some
of the reactions that occur.
On learning that their
child may have a disability, most parents react in ways that have been
shared by all parents before them who have also been faced with this disappointment
and with this enormous challenge. One of the first reactions is that of
denial -- "This cannot be happening to me, to my child, to our family."
Denial rapidly merges with anger, which may be directed toward the medical
personnel who were involved in providing the information about the child's
problem. Anger can also color communication between husband and wife or
with grandparents or significant others in the family. Early on, it seems
that the anger is so intense that it touches almost anyone, because it
is triggered by the feelings of grief and inexplicable loss that one does
not know how to explain or deal with.
Fear is another immediate
response. People often fear the unknown more than they fear the known.
Having the complete diagnosis and some knowledge of the child's future
prospects can be easier than uncertainty. In either case, however, fear
of the future is a common emotion: "What is going to happen to this
child when he is five years old, when he is twelve, when he is twenty-one?
What is going to happen to this child when I am gone?" Then other
questions arise: "Will he ever learn? Will he ever go to college?
Will he or she have the capability of loving and living and laughing and
doing all the things that we had planned?"
Other unknowns also
inspire fear. Parents fear that the child's condition will be the very
worst it possibly could be. Over the years, I have spoken with so many
parents who said that their first thoughts were totally bleak. One expects
the worst. Memories return of persons with disabilities one has known.
Sometimes there is guilt over some slight committed years before toward
a person with a disability. There is also fear of society's rejection,
fears about how brothers and sisters will be affected, questions as to
whether there will be any more brothers or sisters in this family, and
concerns about whether the husband or wife will love this child. These
fears can almost immobilize some parents.
Then there is guilt
-- guilt and concern about whether the parents themselves have caused
the problem: "Did I do something to cause this? Am I being punished
for something have done? Did I take care of myself when I was pregnant?
Did my wife take good enough care of herself when she was pregnant?"
For myself, I remember thinking that surely my daughter had slipped from
the bed when she was very young and hit her head, or that perhaps one
of her brothers orsisters had inadvertently let her drop and didn't tell
me. Much self-reproach and remorse can stem from questioning the causes
of the disability.
Guilt feelings may
also be manifested in spiritual and religious interpretations of blame
and punishment. When they cry, "Why me?" or "Why my child?",
many parents are also saying, "Why has God done this to me?"
How often have we raised our eyes to heaven and asked: "What did
I ever do to deserve this?" One young mother said, "I feel so
guilty because all my life I had never had a hardship and now God has
decided to give me a hardship."
Confusion also marks
this traumatic period. As a result of not fully understanding what is
happening and what will happen, confusion reveals itself in sleeplessness,
inability to make decisions, and mental overload. In the midst of such
trauma, information can seem garbled and distorted. You hear new words
that you never heard before, terms that describe something that you cannot
understand. You want to find out what it is all about, yet it seems that
you cannot make sense of all the information you are receiving. Often
parents are just not on the same wavelength as the person who is trying
to communicate with them about their child's disability.
Powerlessness to change
what is happening is very difficult to accept. You cannot change the fact
that your child has a disability, yet parents want to feel competent and
capable of handling their own life situations. It is extremely hard to
be forced to rely on the judgments, opinions, and recommendations of others.
Compounding the problem is that these others are often strangers with
whom no bond of trust has yet been established.
a child is not perfect poses a threat to any parents' egos and a challenge
to their value system. This jolt to previous expectations can create reluctance
to accept one's child as a valuable, developing person.
Rejection is another
reaction that parents experience. Rejection can be directed toward the
child or toward the medical personnel or toward other family members.
One of the more serious forms of rejection, and not that uncommon, is
a "death wish" for the child -- a feeling that many parents
report at their deepest points of depression.
During this period
of time when so many different feelings can flood the mind and heart,
there is no way to measure how intensely a parent may experience this
constellation of emotions. Not all parents go through these stages, but
it is important for parents to identify with all of the potentially troublesome
feelings that can arise, so that they will know that they are not alone.
There are many constructive actions that you can take immediately, and
there are many sources of help, communication, and reassurance.
SEEK THE ASSISTANCE
OF ANOTHER PARENT
There was a parent
who helped me. Twenty-two hours after my own child's diagnosis, he made
a statement that I have never forgotten: "You may not realize it
today, but there may come a time in your life when you will find that
having a daughter with a disability is a blessing." I can remember
being puzzled by these words, which were nonetheless an invaluable gift
that lit the first light of hope for me. This parent spoke of hope for
the future. He assured me that there would be programs, there would be
progress, and there would be help of many kinds and from many sources.
And he was the father of a boy with mental retardation.
My first recommendation
is to try to find another parent of a child with a disability, preferably
one who has chosen to be a parent helper, and seek his or her assistance.
All over the United States and over the world, there are Parent-Helping-Parent
Programs. The National Information Center for Children and Youth with
Disabilities (NICHCY) has listings of parent groups that will reach out
and help you. If you cannot find your local parent organization, write
to NICHCY to get that local information.
TALK WITH YOUR MATE,
FAMILY, AND SIGNIFICANT OTHERS
Over the years, I
have discovered that many parents don't communicate their feelings regarding
the problems their children have. One spouse is often concerned about
not being a source of strength for the other mate. The more couples can
communicate at difficult times like these, the greater their collective
strength. Understand that you each approach your roles as parents differently.
How you will feel and respond to this new challenge may not the same.
Try to explain to each other how you feel; try to understand when you
don't see things the same way.
If there are other
children, talk with them, too. Be aware of their needs. If you are not
emotionally capable of talking with your children or seeing to their emotional
needs at this time, identify others within your family structure who can
establish a special communicative bond with them. Talk with significant
others in your life -- your best friend, your own parents. For many people,
the temptation to close up emotionally is great at this point, but it
can be so beneficial to have reliable friends and relatives who can help
to carry the emotional burden.
RELY ON POSITIVE SOURCES
IN YOUR LIFE
One positive source
of strength and wisdom might be your minister, priest, or rabbi. Another
may be a good friend or a counselor. Go to those who have been a strength
before in your life. Find the new sources that you need now.
A very fine counselor
once gave me a recipe for living through a crisis: "Each morning,
when you arise, recognize your powerlessness over the situation at hand,
turn this problem over to God, as you understand Him, and begin your day."
Whenever your feelings
are painful, you must reach out and contact someone. Call or write or
get into your car and contact a real person who will talk with you and
share that pain. Pain divided is not nearly so hard to bear as is pain
in isolation. Sometimes professional counseling is warranted; if you feel
that this might help you, do not be reluctant to seek this avenue of assistance.
TAKE ONE DAY AT A
Fears of the future
can immobilize one. Living with the reality of the day which is at hand
is made more manageable if we throw out the "what if's" and
"what then's" of the future. Even though it may not seem possible,
good things will continue to happen each day. Worrying about the future
will only deplete your limited resources. You have enough to focus on;
get through each day, one step at a time.
LEARN THE TERMINOLOGY
When you are introduced
to new terminology, you should not be hesitant to ask what it means. Whenever
someone uses a word that you don't understand, stop the conversation for
a minute and ask the person to explain the word.
Some parents seek
virtually "tons" of information; others are not so persistent.
The important thing is that you request accurate information. Don't be
afraid to ask questions, because asking questions will be your first step
in beginning to understand more about your child.
Learning how to formulate
questions is an art that will make life a lot easier for you in the future.
A good method is to write down your questions before entering appointments
or meetings, and to write down further questions as you think of them
during the meeting. Get written copies of all documentation from physicians,
teachers, and therapists regarding your child. It is a good idea to buy
a three-ring notebook in which to save all information that is given to
you. In the future, there will be many uses for information that you have
recorded and filed; keep it in a safe place. Again, remember always to
ask for copies of evaluations, diagnostic reports, and progress reports.
If you are not a naturally organized person, just get a box and throw
all the paperwork in it. Then when you really need it, it will be there.
DO NOT BE INTIMIDATED
Many parents feel
inadequate in the presence of people from the medical or educational professions
because of their credentials and, sometimes, because of their professional
manner. Do not be intimidated by the educational backgrounds of these
and other personnel who may be involved in treating or helping your child.
You do not have to apologize for wanting to know what is occurring. Do
not be concerned that you are being a bother or are asking too many questions.
Remember, this is your child, and the situation has a profound effect
on your life and on your child's future. Therefore, it is important that
you learn as much as you can about your situation.
DO NOT BE AFRAID TO
So many parents, especially
dads, repress their emotions because they believe it to be a sign of weakness
to let people know how they are feeling. The strongest fathers of children
with disabilities whom I know are not afraid to show their emotions. They
understand that revealing feelings does not diminish one's strength.
Learn to Deal with
Natural Feelings of Bitterness and Anger
Feelings of bitterness
and anger are inevitable when you realize that you must revise the hopes
and dreams you originally had for your child. It is very valuable to recognize
your anger and to learn to let go of it. You may need outside help to
do this. It may not feel like it, but life will get better and the day
will come when you will feel positive again. By acknowledging and working
through your negative feelings, you will be better equipped to meet new
challenges, and bitterness and anger will no longer drain your energies
MAINTAIN A POSITIVE
A positive attitude
will be one of your genuinely valuable tools for dealing with problems.
There is, truly, always a positive side to whatever is occurring. For
example, when my child was found to have a disability, one of the other
things pointed out to me was that she was a very healthy child. She still
is. The fact that she has had no physical impairments has been a great
blessing over the years; she has been the healthiest child I have ever
raised. Focusing on the positives diminishes the negatives and makes life
easier to deal with.
KEEP IN TOUCH WITH
To stay in touch with
reality is to accept life the way it is. To stay in touch with reality
is also to recognize that there are some things that we can change and
other things that we cannot change. The task for all of us is learning
which things we can change and then set about doing that.
REMEMBER THAT TIME
IS ON YOUR SIDE
Time heals many wounds.
This does not mean that living with and raising a child who has problems
will be easy, but it is fair to say that, as time passes, a great deal
can be done to alleviate the problem. Therefore, time does help!
FIND PROGRAMS FOR
Even for those living
in isolated areas of the country, assistance is available to help you
with whatever problems you are having. NICHCY's State Resource Sheets
list contact persons who can help you get started in gaining the information
and assistance you need. While finding programs for your child with a
disability, keep in mind that programs are also available for the rest
of your family.
TAKE CARE OF YOURSELF
In times of stress,
each person reacts in his or her own way. A few universal recommendations
may help: Get sufficient rest; eat as well as you can; take time for yourself;
reach out to others for emotional support.
Self-pity, the experience
of pity from others, or pity for your child are actually disabling. Pity
is not what is needed. Empathy, which is the ability to feel with another
person, is the attitude to be encouraged.
DECIDE HOW TO DEAL
During this period,
you may feel saddened by or angry about the way people are reacting to
you or your child. Many people's reactions to serious problems are caused
by a lack of understanding, simply not knowing what to say, or fear of
the unknown. Understand that many people don't know how to behave when
they see a child with differences, and they may react inappropriately.
Think about and decide how you want to deal with stares or questions.
Try not to use too much energy being concerned about people who are not
able to respond in ways you might prefer.
KEEP DAILY ROUTINES
AS NORMAL AS POSSIBLE
My mother once told
me, "When a problem arises and you don't know what to do, then you
do whatever it was that you were going to do anyway." Practicing
this habit seems to produce some normalcy and consistency when life becomes
REMEMBER THAT THIS
IS YOUR CHILD
This person is your
child, first and foremost. Granted, your child's development may be different
from that of other children, but this does not make your child less valuable,
less human, less important, or in less need of your love and parenting.
Love and enjoy your child. The child comes first; the disability comes
second. If you can relax and take the positive steps just outlined, one
at a time, you will do the best you can, your child will benefit, and
you can look forward to the future with hope.
RECOGNIZE THAT YOU
ARE NOT ALONE
The feeling of isolation
at the time of diagnosis is almost universal among parents. In this article,
there are many recommendations to help you handle feelings of separateness
and isolation. It helps to know that these feelings have been experienced
by many, many others, that understanding and constructive help are available
to you and your child, and that you are not alone.
Patricia Smith brings
much personal and professional experience to the national parent and disability
movement. She is currently the Executive Director of the National Parent
Network on Disabilities. She has served as the Acting Assistant and Deputy
Assistant Secretary in the Office of Special Education and Rehabilitative
Services, in the U.S. Department of Education. She has also served as
the Deputy Director of NICHCY, where she wrote and first published You
Are Not Alone. She has travelled to almost every corner of the United
States, as well as internationally, to share her hope and experience with
families who have a member with a disability.
Ms. Smith has seven
adult children, the youngest of whom has multiple disabilities. She also
has a seven year old adopted grandson who has Down syndrome.
NICHCY News Digest
Second Edition February 1997
Parenting a Child with Special Needs: A Guide to Readings and Resources
Information Center for Children and Youth with Disabilities
P.O. Box 1492 Washington, DC 20013 1-800-695-0285 (Voice/TT)
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