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Communicating with Others about

Your Child with Special Needs

Chapter 9: Communicating with Others about

Your Child with Special Needs
Tools for Parents of Children with Special Needs

By: James J. Messina, Ph.D., CCMHC, NCC, DMHCS
A.  What information must be disseminated to others concerning your child's Special Need?

As parents of children with special needs you are placed in the position of being the "spokespersons" for your children until they become old enough to speak for themselves and in some cases you will have this role for the rest of your children's lives. Here are some important issues which you need to discuss with the important people in your children's lives:

 

1. To your spouse:

  • Your child's diagnosis and what it means
  • The programs and services your child needs
  • Your needs, including the level of support you want from your spouse
  • Plans for a mutual approach to the child's needs
  • Ways to handle this while growing as a couple

 

2. To your other children:

  • Your child's diagnosis and what it means
  • The support and ''normal'' treatment the target child needs from them
  • How to answer questions about the target child's special need
  • How your children can make things go smoother
  • Ways to handle this situation while growing as a family

 

3. To your parents and in-laws:

  • Your child's diagnosis and what it means
  • Treatment the child is receiving and what it does for the child
  • The support you and your spouse need from them
  • How important it is for them to be clear, specific, and supportive in sharing this  information with the relatives and their friends
  • How not to coddle or be overly sympathetic or spoil the child
  • How to treat the child as normally as possible

 

4. To other relatives, friends, and neighbors:

  • Your child's diagnosis and what it means
  • The services the child is receiving
  • How you need their support and understanding
  • How what has happened in your family has not made you any different than what you were before
  • How you will need help in caring for your target child and your other children as you link up with the necessary services to address the special needs.

 

5. To the professionals, doctors, therapists, and teachers working with your child:
  • Your child's diagnosis as given to you
  • When the diagnosis was given and by whom
  • Any second or third opinions about the diagnosis
  • Treatment services the child has received, when they were given, and by whom
  • Your current concerns, fears, and doubts concerning the diagnosis and services being given to your child
  • How the child is responding to treatment, training, classes, medical care, etc.
  • How your child is relating to others with similar specil needs
  • How your child is functioning at home with siblings and parents
  • What milestones are being exhibited at home

 

6. To strangers who ask you questions when you are in the public eye:

  • Your child's diagnosis and what it means
  • How they can change the public's perception and attitude about people with special needs
  • What your child needs from people like them in order to be treated as normally and fairly as possible
  • What agencies and programs exist to serve your child
  • How these agencies depend on donations for financial and physical support to serve children like your own
  • What can be done to lessen discrimination against those with special needs in employment, housing, religious and social/recreational opportunities

B.  What beliefs, attitudes and behavior traits are necessary to respond to questions about your children in a healthy manner?

Parents who are successful in communicating with others concerning their children with special needs have to maintain a rational perspective in such communication. They need to have worked through a number of emotional issues if they are to be successful in their communications about their children.

 
What follows are some of the actions you as parents need to have accomplished so as to insure sound communications with those people involved in your life and the life of your children: 
  • Acceptance of your children's diagnoses
  • Information about the conditions and speiclal needs, their causes, and their prognosis
  • Information about the recommended course of treatment for your children's conditions
  • To believe that you can handle your children's needs
  • To discuss your children's condition without apologizing for their special needs 
  • A resolution for your anger, resentment, and hostility over what has happened to both your children's and your lives.
  • To maintain your sense of humor.
  • To have patience with others' ignorance, lack of information, and misinformation about your children's special needs.
  • To know that others may lack understanding and compassion regarding your children's conditions.
  • To believe that others will be advocates for your children once they have proper information.
  • To know that it is best to treat your children as normally as possible and to demonstrate that knowledge in their presence.
  • To put people at ease in the presence of your children by your ''normal'' treatment and reactions.
  • To accept that those not living with these conditions on a daily basis do not feel as comfortable or as knowledgeable about it as you.
  • To believe that innocent questions from others are not meant to be hurting to you or your children.
  • To educate society with information and common sense training to reduce discrimination against people with special needs.
  • To contain your emotional reactions to upsetting questions and discourage overreacting as this will do more harm than good.

C.  What are some negative consequences of inadequately or inappropriately communicating to others about your child?

Parents of children with special needs have to be aware that they as the "spokespersons" for their children have a major impact on how well their children will be served so that their life needs are met.

 
For this reason it is important to consider the following negative consequences of poor communications on the part of parents:

 

1. If you lose your temper or seem to get angry at questions asked by others they may:
  • Leave you alone, isolating you from any support.
  • Be convinced that their negative, ill-informed beliefs about children such as yours are correct.
  • Become stuck in their discriminatory beliefs.
  • Be turned off to offering help or support to you and your children
  • Find you repulsive, feel sorry for you, or pity you and the burdens you must carry because of your child's problems.

 

2. If you ignore questions from others they may:

  • Grow in their ignorance and lack of information.
  • Be confused.
  • Feel you are either a snob or an elite individual who considers yourself better than others.
  • Be discouraged from contributing financially and physically to your child, you, or the  agencies involved in the treatment and support program.
  • Entrench and grow deeper in their old beliefs, attitudes, and discriminatory behavior.

 

3. If you make fun of or are sarcastic in response to questions others ask you they may:

  • Feel offended and put off.
  • Become stuck in their negative beliefs about such conditions.
  • Continue to be ignorant and ill-informed.
  • Take a revengeful or hurtful attitude.
  • Be lost as supporters or advocates for you or your child.

 

4. If you become overly emotional, lose control, or cry with others comments or questions they may:

  • Be convinced that their negative beliefs about the condition are well founded.
  • Become uncomfortable and decide never to ask questions of you again.
  • Become sympathetic, feeling so sorry for you that they smother, spoil, or in many ways treat your children as ''special,'' not respecting the need to treat them as normally as possible.
  • Continue to lack information and be misinformed.
  • Become embarrassed and begin to avoid you, thus isolating you even more.

 

5. If you blame, lecture, or accuse others for their stereotypic beliefs or lack of information they may:

  • Become defensive or put you under attack.
  • Become embarrassed and avoid contact with you in the future.
  • Feel insulted and attempt to put you down in return.
  • Continue to remain as ill-informed and ignorant as they were before you talked.
  • Be lost to the ongoing support needed by you and your child.

D.  What communication skills help parents of children with special needs to discuss their children?

To be a successful communicator about your children, you need to develop some new skills. What follows are some communications skills which you will need to grow in if you expect to be a good communicators and spokespersons for your children with special needs.

 
You will need to be able to:
  • Use effective listening skills to hear what the others are asking and feeling about your children and your children's condition.
  • Paraphrase back to others what they have said or ask for them to clarify what they meant to ensure that the content and feelings involved are on target.
  • Use reflective responses to indicate to the others that they are being listened to and  are not being judged.
  • Use understanding and clarification responses to put others at ease and enable them to be open to a clear, precise statement concerning your children's condition, treatment, and prognosis.
  • Use an effective combination of listening and responding skills to solve issues, leaving all parties to the conversation feeling like winners.
  • Develop a sensitive approach with people who are uncomfortable but cannot express it. You need to initiate the conversation and begin the discussion.

F.  How can communication skills be improved?

You can take the following steps to improve your communications with others about your children with special needs.

 

Step 1: Before you can improve communication with others, determine the areas in  which you need work. Answer the following questions in your journal:

A. What is the current status of communication concerning my target child with:

  1. my spouse
  2. my other children
  3. my parents and in-laws
  4. my relatives, friends, and neighbors
  5. my child's professionals, teachers, therapists, and doctors
  6. strangers who ask questions

 

B. What information about my target child do I believe each of the above groups needs from me?

 

C. What are my feelings as I communicate about my target child with each of the six groups?

 

D. What are the obstacles to effective communication about my target child with each of these six groups?

 

E. What bothers me as I talk about my target child with each of these groups?

 

Step 2: You are ready to identify the negative consequences of such communication. Detail the negative consequences of your communication (or lack of communication) about your child with:

  1. my spouse
  2. my other children
  3. my parents and in-laws
  4. my relatives, friends, and neighbors
  5. my child's professionals, teachers, therapists, and doctors
  6. strangers who ask questions

 

Step 3: Identify personal attitudes, beliefs, and behavior you need to change to improve communication about your target child with the six groups listed in Step 2.

 

Step 4: You are now ready for skill building. Refer to Tools for Communication  on this website. There you will find steps to improve your listening, nonverbal, responding and problem-solving communication skills. Complete these five units in the online book before going to Step 5.

 

Step 5: Your newly developed skills should allow you to communicate comfortably about your target child with each of the groups listed in Step 2. If you still have problems, return to Step 1 and begin again.