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Communicating with Children

about their Special Needs

Chapter 8: Communicating with Children

about their Special Needs

Tools for Parents of Children with Special Needs

By: James J. Messina, Ph.D., CCMHC, NCC, DMHCS

A.  What questions have children with special needs asked their parents about their condition? 

Here are some comments which have been reported by parents that they have been asked by their children who have special needs. You will notice that these questions are very open and not guarded. The children asking do not have any malice of intent by asking their parents these questions. In fact one might comment that these questions seem truly innocent and naive.

They are:

  • Will I ever be like everyone else?
  • What makes me different from other kids my age?
  • Why won't the other kids play with me?
  • When will I be able to walk and run like other kids?
  • Why do I have so hard a time learning in school?Why aren't I in regular grades like the other kids?
  • Why do I always have to take that special bus?
  • Am I really a boom boom, like the other kids say I am?
  • Will I ever be normal?
  • Why did God make me this way?
  • Were you and mommy unhappy when you first saw me?
  • Why do my younger brothers and sisters get to do things I am not allowed to do?
  • Why do you and dad always look so sad?
  • Why do the other kids call me names and laugh whenever I am around them?
  • Why do I have to go to those classes? They are for ''slow kids"!
  • Why do I still have to be going to therapy?
  • When will I be through with therapy?
  • Can I use my wheelchair? It's a lot easier.
  • What did the doctors say was the reason I have this problem?
  • What did I do wrong to make me like this?

B.  What do children with special needs need from their parents to effectively communicate about their condition?

As parents it is your responsibility to provide open and honest communication with your children. This is even more important in your dealings with your children with special needs. To more effectively communicate with your children you first must accomplish some behavioral objectives which make such communication easier, frank and more realistic.

Children with special needs need parents who are able to: 

  • Accept their children's diagnosis.
  • Be informed about the laymen's technical knowledge of the condition.
  • Be informed about treatment, prognosis, and the success of such intervention.
  • Be informed about the special education process in the public schools.
  • Resolve their grief, anger, hostility, resentment, and bitterness over their children's condition.
  • Answer any questions in an honest, straightforward way.
  • Judge when their children want to know full details and when they want only general information.
  • Allow the children to ventilate their emotions over the condition.
  • Allow the children to identify feelings that may be blocked or stuck.
  • Disclose what is wrong with the children without masking or hiding the truth.
  • Instill faith in self, faith in others and faith in God.
  • Avoid shifting blame in describing the causes for the condition.
  • Give accurate, scientific, technical information easily understood at their children's level, preschool, elementary, secondary, or adult.
  • Provide support, compassion, understanding, and clarity to the feelings expressed by their children.
  • Be objective enough to listen to their children's distress without reacting in a personal manner to what is being said.
  • React with an ''it's not a big deal,'' and ''that's the way it is,'' and ''we love you" attitude.
  • Instill optimism, encouragement, and a positive attitude in their children about continuing to work hard at reaching their potential.
  • Encourage their children to feel, act, and behave as normal as possible.
  • Be honest, keeping no secrets from their children.
  • Use correct names for the conditions, such as cerebral palsy, spina bifida, Down's (trisomy 21) syndrome, muscular dystrophy, cystic fibrosis, Tourette syndrome, etc.
  • Keep their children in contact with other children with similar conditions.
  • Admit mistakes.
  • Correct the mistakes, seek out further information, and shed light on questions raised by their children.
  • Avoid overreacting to their children's questions, answering only the question asked, giving no further information until their children indicate a readiness. 
  • Openly discuss issues such as death, disease, permanent disability.
  • Trust that they are doing their best to encourage their children's growth and maturation.
  • Encourage their children to become good problem solvers.
  • Avoid self-pity and negativity in all discussions with their children.
  • Become effective listeners, responders, and problem solvers.
  • Recognize that the special need is their child's problem.
  • Consider their children first as children, then as children with a speical need.
  • Use healthy, nonverbal body language, letting their children know they are accepted, loved, and understood.
  • Look into their children's eyes as they speak.
  • Vary the tone of their voice, showing a full range of emotions.

 

C.  Why do parents avoid talking with their children about their special needs?

If you find yourselves having difficulty in talking with your children with special needs about their conditions, then you might be riddled with unconscious or conscious irrational thinking which blocks such healthy communication. It is important to recognize when you are holding onto irrational beliefs, that you can correct them and function in a better coping manner with your children. Parents who avoid talking with their children about their speical needs may have some of these irrational beliefs:

  • Children should never have to carry the burden of their special need on their shoulders.
  • There is no good reason to tell children the truth about the lifelong nature and consequences of their special need.
  • Kids can be so mean; it is better to isolate children with speical needs from "normal'' kids so they won't be faced with such negativity.
  • Children with speical needs will be happier if they are isolated from the real world.
  • I don't believe my child has the problem that has been diagnosed, so why should I tell my child what I don't believe.
  • Life is already so hard on these kids, why do we need to tell them the full picture of what is wrong with them?
  • Children with special needs will never be normal so why should we treat them as if they were?
  • It is hard enough for me to accept my child's problems; why should I burden my child with this information?
  • My child already knows what is wrong due to the special need. Why does my child have to be told by me?
  • It tears me up to see my child's reactions to normal kids, so I just avoid the comments and try to shelter my child from thinking about the differences.
  • It is better to take one day at a time and not answer questions about the future.
  • These kids deserve a break; it doesn't help them to become overwhelmed by the reality of their condition.
  • My child makes me feel too uncomfortable when asking me questions about the child's disability or condition, so I always try to switch the topic.
  • I feel so sorry for my child; it is so hard to be honest and level with my child about the situations and problems related to the child's special needs.
  • We have worked so hard to get our child this far. I do not believe my child has the right to give up all the gains made by making the choice to go a different route away from therapy.
  • I could never answer any questions my child would ask me about my child's condition or special need.
  • It is better to treat the child as ''special'' and keep the child in the dark about the differences my child sees when comparing self to others who are typical. 
  • I would rather take care of my child the rest of my child's life than expose my child to the cruelties of the real world.
  • Kids ask for more information than they really want or are ready for. 
  • It is my spouses' job to answer questions for the kids. 
  • I want my child to live a totally happy life and I will do whatever I can to make it happy, even if it means keeping secrets from my child.

D.  What new skills do parents need to communicate effectively with their children about their special needs?

If you intend to improve your communications with your children, you will want to change your behavioral approach to such communications. What follows is a short list of action steps you parents can take to improve your communications with your children with special needs.

You as parents of children with "special needs"need to:

  • Improve your listening skills.Tune into your children's feelings.
  • Reflect your children's feelings back to them. 
  • Paraphrase the content and feelings of the message given by your children. 
  • Be nonjudgmental about what your children are saying or feeling.
  • Respond to your children with understanding of what your children are saying and feeling.
  • Clarify with your children what they are ''really'' saying and feeling.
  • Disclose your feelings to your children.
  • Give your children honest, truthful, and precise information for what is ''really" being asked.
  • Help your children sort out feelings from the content of the problem at hand.
  • Help your children brainstorm and sort out alternative solutions to a problem.
  • Help your children evaluate alternatives.
  • Help your children think on their feet, yet maintain their perspective, and retain a sense of humor.
  • Help your children be assertive with those who are infringing on their rights.
  • Help your children accept themselves for who and what they are and for what their future will be.
  • Get down to your children's level, touching or holding them while talking with them.
  • Look into your children's eyes when talking, and smile, and use loving gestures.

E.  Steps to take to improve your communication with your child?

If you are ready to improve the intensity, openness and honesty of communication with your children with special needs about the disabilities and handicaps involved in their special needs then you are ready to take the following steps:

 

Step 1: First, assess the state of communication you currently have with your child with a special need  by answering the following questions in your journal:

 

A. What questions has your target child asked about the disability? Make a list of them.

 

B. Which of these questions (1) were you able to answer? (2) made you feel most uncomfortable? (3) did you answer one way, only to find out the child was asking  something else? (4) did you avoid by ignoring or switching the subject?


C. What does your handling of your target child's questions about the condition tell you about your:

  1. acceptance of your child's disability?
  2. level of knowledge about your child's disability, status, and treatment?
  3. level of unresolved grief, anger, hostility, resentment, or bitterness over yourchild's condition?
  4. level of communication skills in handling emotionally laden topics?
  5. level of spirituality, faith, hope, and trust in God?
  6. ability to communicate with your child at your child's developmental age and understanding?
  7. ability to be objective in talking about your child's condition?
  8. level of optimism and positive thinking?
  9. belief in normalization for your child?
  10. comfort in handling issues thanks to the support you feel from your own support group?
  11. ability to handle talking about the negative realities of life?
  12. awareness and acceptance that it is your child, not you, who has the problem of a disability?

 

D. In reviewing the twelve issues in Step 1C, which areas do you want to work on to  improve communication with your target child?

 

E. What resistance to working on this communication do you feel right now?

 

Step 2: Put in your journal those beliefs you hold to that block or make you resistant to talking with your child about the condition. After you write down all of your beliefs, go back and write down a rational replacement belief to unblock you and make you less resistant to communicating with your child about the disability.

 

Step 3: You have identified blocking beliefs and substituted rational beliefs. Now assess your general communication skills. Answer the following questions in your journal:

  1. How well do I listen to the feelings conveyed by my child?
  2. How well do I let my child know that these feelings are being heard?
  3. How well do I show my child that I accept his feelings?
  4. How comfortable is my child in talking with me about a problem?
  5. How effectively do I show my child understanding of the feelings/problem?
  6. How effectively do I problem solve with my child?
  7. How well do I accept suggestions or criticism from others as to how well I communicate with my child?

 

Step 4: You are ready to work at improving your general communication skills. Refer to Tools for Communications on this website. Work on the five units in the book to improve listening, nonverbal, responding, and problem-solving communication skills. Complete these activities, before going to Step 5.

 

Step 5: Complete the following outline in your journal:

 

Plan for Improving Communication with my Child with Special Needs

  1. I will answer all questions my target child asks about the special need and the conditions related to it.
  2. I will work at getting more information about these questions:
  3. I will change the following beliefs:I will change my tactics to ensure that I have enough information about my child from: (1) schools and teachers; (2)doctors; (3) therapists and (4) other professionals
  4. I will prepare scripts to answer tough questions my child might ask me.
  5. the tough questions might be: (list at least three).
  6. the scripts I have developed include: (write out a script for each tough question.)
  7. I will remember that it is my child and not me who has the special need; therefore, the child deserves honest information about the conditions related to the special need. To do this I will change my following behavior patterns:
  8. I will improve the following body language techniques with my child:

 

Step 6: If you still have problems developing or implementing a communication plan, return to Step 1 and begin again.