Parenting a child with a

disability

All families experience normative and transitional life event stressors such
as birth, death, and moving.

In addition, parents are subject to the inherent chronic stressors of

parenting.

Parental psychological stressors are related to the worries that parents

have about the physical safety and the growth and development of their
children.

When a child is diagnosed with disabilities, all of the attention

is focused on helping the child. But parents also need
assistance in coping with stress, their own feelings and
frustrations

Parents of children with disabilities had very elevated

scores on the Parenting Stress Index, signifying that they
perceived far more stress in their role as parents than did
parents of children without disabilities.

List specific stressors associated with raising a child

with disabilities.
Some

of the most frequently mentioned were:

parent guilt
worry about the future

parents' perception that other people think they may be

the cause of the problem

difficult behavior of children with disabilities

feeling a need to protect their child

disagreement between parents about dealing with the
child

CONT

disagreement between parents about the existence of a problem

increased financial burden

finding competent professional services

sibling resentment of attention given the child with disabilities

identify your own specific stressors, and determine if your stress is

primarily

internal

external

physiological.

Internal Stress

Internal stress factors come from within the individual and include
attitudes, perceptions, assumptions, and expectations. Expectations
of parents about their child lie at the root of burnout. When
expectations about parenting are not met, the first thought is What
did I do wrong?

Therefore, parents must learn how to develop realistic expectations

and how to recognize when negative self-talk defeats effective
coping.

Parents should identify their own self-defeating assumptions and

think of alternative messages. They must be kind to themselves, to
accept themselves and their child as fallible, anal to boost their
own self-confidence by noting and using personal strengths and
talents.

Beliefs that Lead to Internal Stress

1. Giving 100% every day is what every parent is expected to do.
2. The success or failure of my children depends entirely on me.
3. I will never be bored as a parent.
4. I will be seen by society as a good and honorable person because of the
effort I put into being a good parent.
5. I refuse to let anyone else care for or influence my children.
6. I should always deny my own needs for rest and recreation in order to help
my children.
7. I should do everything for my children and not require that they take on the
responsibilities that they are old enough to handle.
8. I should spend every possible moment with my children.
9. I should feel guilty if I need a break or want some attention for myself.
10. One role in my life can satisfy all my needs and can support all my dreams.
11. My children should appreciate everything I do for them.
12. My children must like me.
13. Other people must see me as a good parent, able to handle everything.

Coping with stress - Internal stressors

1. Renounce love, affection, and approval from children as needs-rather than bonuses.
2. Boost your own self-confidence.
3. See the positive side of stress.
4. Understand anger and use it constructively. Control anger by controlling wishes.
5. Practice positive thinking by daily affirmations. Repeat positive messages to yourself over
and over.
6. Write them out and put them around the house.
7. Develop a support system by sharing honestly your feelings of frustration, anger, and
concern.
8. Learn to tolerate change because children change often. You and the children both
change moods and feelings.
9. Be able to live in the presence of imperfection.
10. Learn to catch yourself when you say negative statements to yourself and challenge
them.
11. Develop the positive belief that you can control destiny. Be healthily selfish, free
yourself from needing outside approval.

External Stress
External forces also impinge upon parents of children with disabilities.
Neighbors, friends, and relatives don't understand why such a normalacting child is having academic problems. Teachers frequently don' t
fully understand the ramifications of a child's problem. Parents are
called upon by the school to help make decisions about the child's
school program but often feel helpless as the child's advocate because
of their own lack of understanding. Because external stressors are
those that are situational, and often involve relationships with others,
parents are encouraged to develop assertiveness skills. Problemsolving techniques, time management, and goal setting are helpful
when dealing with stressors associated with raising children and
running a household. Because coping with a child with disabilities is so
emotionally draining, parents also are encouraged to develop intimacy
skills and a support system.

External Stress Factors

1. Dealing with school about child's placement or program.
2. Coping with difficult child behaviors.
3. Educating neighbors and relatives about the child's problems.
4. Helping siblings understand the problems associated with
disabilities.
5. Getting child in right school.
6. Helping child with homework.
7. Financial pressures.
8. Working with spouse on child management.
9. Carpools.

 Coping

with Stress - External Stressors

Analyze

Problems Thoroughly

1. Describe the problem with a specific statement.

2. State how it could be worse and how it could be better.

3. Determine what is keeping it from getting better. Propose

solutions for the things over which you have control.
4. Plan action.

CONT

Use Time Management

1. List priorities both short and long term.

2. Do a time use audit.

3. Compare time use with priority of goals.

Develop Assertiveness

1. Know your limits and be realistic about what you can accomplish. Say no to
unreasonable demands.

2. Learn about your child's problems and needs so that you can be an active
participant in meetings with school personnel and can offer suggestions to
coaches, neighbors, and relatives.

Physiological Stress
The final type of stress is physiological stress. Parents of children with
disabilities need to recognize that children with disabilities require
exceptional amounts of energy. In order to replenish energy, parents need
to be sure they get sufficient rest, eat well balanced meals, and exercise
vigorously. During the workshop, parents learn meditation or relaxation
techniques to use when they feel stressed, anxious, or fatigued.
Physiological Stressors
1. Diet
2. Exercise
3. Rest
4. Recreation

Coping with stress strategies

Everyone knows what to do, but doesn't always do it

1. Make a plan and stick to it. Make sure you include all of the elements
necessary for a healthy life.

2. Follow your physician's advice.

3. Team up with a spouse or friend for time off.

4. Use relaxation tapes or exercises to calm down after a hectic day.

5. Find a place of retreat (the bathroom or the car, for instance), and go
there for cooling off when the tension is very great.

6. Make recreation and relaxation a priority, so that you have some time
off during the week. Studies have shown that psycho-logically healthy
families have less-than-perfect house keeping.

7. Hire out or trade off chores that are time consuming

and distasteful. Sometimes it is well worth paying
someone else to do those chores so that you have more
time and energy to devote to yourself and your family.

Parenting

children with disabilities presents special

challenges. Professionals working with parents need to
recognize the difficulty parents face when dealing not
only with the child's everyday problems but also the
associated social and emotional problems of school
failure. Parents are eager to learn better coping strategies
and parent groups can provide both skill training and
emotional support for parents of children with disabilities.

 When

you decided to sign up for having a child,

chances are great that you didn't special-order a child
with a disability..

Children

always bring surprises into their parents' lives

but children with disabilities bring more than their fair
share of growth opportunities to their parents

The

first set of challenges is likely to involve lots of

contact with the medical professions. What can be
done about the disability or illness? Can I have a
second opinion? What is the future going to be like for
my child, and how long will they live? So many
questions and such a scary time!

Soon after the initial medical flurry comes the next issue: educating the child. The
alphabet soup of IEPs (individualized education plans), Public Law 94-142, Americans
with Disabilities Act (ADA)-mandated accommodations, etc., is added to the newly
mastered medical jargon of medical conditions and medications and treatments.
Local, national, and online support groups of people with and parents of children with
the disability become the new mentors in navigating school and life with disability
mazes

But as you deal with the medical, educational, and day-to-day crises of raising
a child with a disability, don't forget your emotional responses and those of
your spouse and other children.
The grief you feel because your child is not perfect, "normal," or whatever you
call it, is completely natural.
All parents worry about their children's futures, but those raising a child with a
disability worry more.
Some parents grieve by going through stages like those faced by people
grieving a death: denial, anger, bargaining, depression, and acceptance. If the
grieving process is not allowed to proceed at its own pace the process may get
stuck.

If the medical condition is progressive, you may go through

the grieving process many times.
Different people grieve differently and it is common for the
disability of a child to highlight differences between two
parents.
One parent may be trapped in denial and the other may take
over parenting entirely. A child with a disability can put much
stress on a marriage and the marriage may dissolve or at least
flounder for a while

What about the other kids?

Not surprisingly, they may feel resentment toward the child with the
disability for getting all the attention, having less expected of them, etc.,
and may feel ashamed of being seen with their disabled sib.
Of course, having a sibling with a disability can also bring many positives to
the child without a disability, including appreciation of human differences,
empathy, compassion, and pride in being a helper.
There may also be conflicted feelings like gratitude for not having the
disability, but fear they could catch it, and guilt for being glad they don't
have it.
To make the positive outcomes happen, the parents need to give the siblings
plenty of information about the disability so the child can answer their own
questions and their friends' questions. "Is it catching?" "Can someone fix
it?" "Why do they act that way?" are common questions.

The non-disabled child also needs to know from the parents

that they are not the disabled child's keeper and that they
do not have to be a superkid to make up for what the child
with a disability cannot do.
Time alone with each child and talking honestly about the
child's concerns about unfairness, etc. can go a long way
toward creating the kind of family where the disability is
just one part of family life.
It may take center stage sometimes; usually, it can be on
the back burner, but not ignored. Nowadays there are
support groups and books both for children with disabilities
and for their siblings as well.

So what's a parent to do? Three key pieces of advice:

At first the disability has to become your new hobby. Learn all you can, join support
groups, track down adults with it.
Realize that your family will no longer be anonymous like "normal" families. The
equipment you have to carry, the visibility of the disability, etc. make quick trips to the
mall or last-minute getaways with your spouse with a babysitter holding down the fort
things of the past. Your organizational and planning skills, as well as your public speaking
and advocating skills, will grow by leaps and bounds.
Take time for yourself and your spouse. Like any crisis, a child with a disability can
cause you to pull together as a team or pull apart. Use respite care, babysitting offers
from extended family, etc., to get couple time even if it's only for breakfast at the
corner diner to celebrate the last week's survival and plan for the next week. When
your child with a disability can go to summer camp, make sure they go even if everyone is
scared. Both you and they need the time apart.

After the Diagnosis

Research a Disability
Accepting Your Child's Special
Needs
Working with Specialists

Something's just not right. You know it in your head, your

heart, the pit of your stomach. Your child isn't
developing like other kids. But you're afraid that giving a
name to your fears and putting a label on your child will
make things real that you'd love to believe are imaginary.
How do you find the strength to move from suspicion to
certainty? And even after a diagnosis is given, how can
you accept that this is your child's fate?
Seeking a diagnosis for a child is one of the hardest
things that parents can do. But fear and denial don't help
your child. Getting the proper diagnosis and treatment
does. As you set out to help your child, keep these five
things in mind:
.

Your child is still your child. The things you love about him or her remain the same.
There were still be moments of joy and calm and silliness and general uneventful
family life. You may learn to treasure those more. Your child is still your child. And
this is just part of life.
Labels are not the enemy. Labels can seem scary or limiting, defining our loved one
by their dis- and not their ability. But a label can also help you to get services for
your child, therapy, insurance coverage, the right school placement, tolerance for
behaviors, understanding and support.
You are not alone. Become part of a community of people who know just what you're
going through.
Every child is different. Kids develop at their own pace, they respond uniquely to
therapies or medications or treatments, they follow their own path.
There's always hope. Life for people with disabilities has improved enormously over
the last century, and there's no reason to believe that progress won't continue