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We all need good techniques for finding ways to cope in tough times.
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 to 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 Time
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.
Seek Information
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 Show Emotion
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 and initiative.
Maintain a Positive Outlook
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 Reality
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 Your Child
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.
Avoid Pity
Self-pity, the experience of pity from others, or pity for your child is
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 With Others
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 hectic.
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.
Reprinted with permission from the National Dissemination Center for
Children with Disabilities
(NICHCY).
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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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