Finding Out Your Child Has a Disability...It's Not The End of The World  by Dr. Mark Nagler, Ph.D. © 2003

Finding out that a child has been born with a disability, or that a previously healthy child has suffered an injury or disease that causes a disability can be the most traumatic moment in a parent’s life.  Shock is usually the first thing people experience.  It can temporarily paralyze you, preventing you from taking action, or even making rational decisions.  In this difficult first period it is always wise to take the counsel of professionals and family members with experience or others whom you trust, while always maintaining the right to make the final decision yourselves.

After coming to grips with the shock of their situation, many parents come to feel that their expectations have been dashed, that they are failures as parents or that their family has been destroyed.  Uncertainty, blame or jealousy may arise.  Parents may worry about hundreds of questions that have few immediate answers which can lead to an unbalanced and overly bleak view of the opportunities, potential, and joy that can be found in raising a child with a disability.

It is not the end of the world, and many families have become stronger, more loving, and more closely knit because of a disability in the family.  The disability gave them the opportunity to work together to help out their loved one, and the entire family shares in the gains that are made by the child.  Many of the negatives that parents imagine that go along with having a child who has a disability simply do not occur.  While you will have to make some sacrifices, you will still have time for your friends, family, and hobbies.  After awhile, many of the activities you once viewed as sacrifices will come to be seen as part of every life, rather than an exceptional burden.

Developing a positive attitude is very important, and although children with disabilities will inevitably become aware of their limitations, they should always be encouraged to take on new challenges.  This is sometimes difficult as children with physical limitations may be reluctant to participate in physical activities out of fear of failure.  Despite these fears, both the child’s and the parent’s perspective should be “have fun, and do your best.”

Some parents of children with disabilities are unable to have their special child live at home with them, but the vast majority is able to successfully manage within the home.  If you are finding you cannot cope, there are alternatives available that will allow you to maintain a loving relationship with your child while maximizing appropriate care.

The most important factor in a family’s success is the motivation to succeed.  If a child realizes that his parents always encourage success and will not be satisfied with anything less than his best effort, he will be motivated to succeed.  Never settling for failure becomes part of his character, and his self-esteem will be enhanced and maintained.

There is a wide range of disabilities that affect children but the constant emphasis on always trying your best, reinforced in an atmosphere of warmth and support, will help any child with a disability triumph over the challenge that he will face.  Instilling this confidence will help him have faith in himself and work on his own behalf throughout the course of his or her entire life. 

All In The Family by Dr. Mark Nagler, Ph.D. © 2003

A disability or serious illness affects the entire family.  When a family is able to cope effectively with a disability, the process can be enriching for all family members.  If, however, the family unit fails to provide the supportive environment needed to successfully manage the challenges, a child's development can be inhibited.  Adjusting to a child's disability can be frustrating, painful, and at times depressing, but in the long run, successful adaptation rewards the whole family.

The family traditionally a child's best source of support.  A child's accomplishments, self-respect, and self-esteem are all molded by his family.  The family should always provide a refuge where the child is loved and supported.  This atmosphere will encourage the children to be independent, creative, and active.  This is what we all want for our children.  When raising a child with special needs, the family atmosphere is doubly important.  While stranger, friends and acquaintances may sometimes let the child down, the family should always be there for him.

The family not only includes parents and siblings, but extended family: relatives and close friends.  They play an important role in your support network.  By surrounding him with love and affection, your child will grow up learning he has an important place in the family and the world.

Many people will not know how to respond to your needs.  Sometimes friends, grandparents and siblings may ignore you.  It might be a simple process for these people to relate to normal children, but they can become reluctant to see you and perhaps even hostile when they feel that they are expected to participate in the care of a child with a disability. You may discover that your relationships become strained or even severed.  Some people just do not possess the sensitivity, knowledge or capacity to care that is required.  It has been said that in times of crisis people discover who their real friends are.  Convey to your friends that you do not only hope for their emotional support but you would also appreciate if they can help you in other ways.  Often when they are provided with appropriate information and made aware of your needs they will change their attitude and become a source of strength for you.

In spite of your efforts, however there may some people that may be unable to provide the support you need.  There's not much you can do and there's no point in worrying about them. For some of your friends and family, time may be an important factor and some people who may initially be unable to help you may, over time, come to be relied upon as an important resource.  Don't refuse someone's offer of help just because it did not come immediately.

Whenever a new child is born into a family, other siblings feel somewhat neglected.  This feeling is often enhanced when a child with a disability is born.  Understandably, older siblings often feel left out.  You must go out of your way to assure them that they are loved and needed.

If you do have other children, they should be informed of the difficulties being experienced by their sibling as soon as possible, as they too will be involved in loving and caring for the child.  Try to make your other children feel that they are very important not only for themselves, but for the help and support that they can contribute.  If the other children are not made aware of their brother's or sister's condition, they will feel isolated and separated.  Consult them on most important issues and situations regarding the care of the new child.  By involving your children you give them a sense of importance and maturity and make them feel they are a valued member of your family.  Many parents set aside a special time each week to discuss any problems that have arisen within the family and the ways to deal with these difficulties.

The Stages of Adapting To A Disability by Dr. Mark Nagler, Ph.D. © 2003

Giving birth to a child with a disability is often perceived as a crisis. The same feelings occur when a disability occurs through injury or disease.  The stages of family adjustment most noted in response to a child's disability are: withdrawal or rejection, denial, fear and frustration, and adjustment.
 
Rejection or Withdrawal
Birth is traditionally a celebration.  If a child is born with a  recognized disability this period may be transformed into one of anxiety.  Bonding with the child is vital and made easier when the parents and family members can hold the child in physical warmth. This is not always easy due to medical intervention or incubators. But opportunities for contact should be from the earliest possible moment.  Feelings of
disappointment should be expressed but hope should not be given up.  It may be comforting to know that most individuals are surprised that they are able to cope in even the most difficult circumstances.
 
Denial
Denial is normal and may even lead to a positive response. Refusal to accept a diagnosis can lead to the pursuit of strategies and interventions that will generate rehabilitation and integration.  Denial can also have negative effects. Some parents can spend thousands of fruitless dollars in an attempt to make their child "normal".
 
Fear and Frustration
Counseling is often helpful to these normal feelings.  Most parents are inclined to feel that they can handle their situation without the intervention of others, but this belief is often false.  There are usually supportive and helpful roles that professional caregivers and others can play for families in distress.
 
Adjustment
The final stage is adjustment, which is an ongoing process.  It is essential to maintain open communication between all the family members.  Complete adjustment is difficult to achieve, but it can be done!  A positive attitude and creating time for all family members ensures that all are valued as important to the family.

Copyright © 2007 Mark Nagler, Ph.D.
Last modified: 09/03/07