A New (or Old) Diagnosis - "You Are Not Alone"

(While these excerpts from You Are Not Alone* by Patricia McGill Smith focus on a child with a developmental disability, they also apply to any significant medical, developmental, learning or mental health problem.)
“When parents learn about any difficulty or problem in their child’s development, this information comes as a tremendous blow. The day my child was diagnosed as having a disability, I was devastated—and so confused that I recall little else about those first days other than the heartbreak. Another parent described this even as a ‘black sack’ being pulled down over her head, blocking her ability to hear, see and think in normal ways. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents’ minds and hearts when they receive any bad news about their child.”
“Many things can be done to help yourself through this period of trauma. That is what this paper is all about. In order to talk about some of the good things that can happen to alleviate the anxiety, let us first take a look at some of the reactions that occur.”

Common Reactions

On learning that their child may have a disability, most parents react in ways that have been shared by all parents before them who have also been faced with this disappointment and with this enormous challenge. One of the first reactions is that of denial—“This cannot be happening to me, to my child, to our family.” Denial rapidly merges with anger, which may be directed toward the medical personnel who were involved in providing the information about the child’s problem. Anger can also color communication between husband and wife or with grandparents or significant others in the family.
Family on steps

Fear is another immediate response. People often fear the unknown more than they fear the known. Having the complete diagnosis and some knowledge of the child’s future prospects can be easier than uncertainty.

Then there is guilt—guilt and concern about whether the parents themselves have caused the problem. “Did I do something to cause this? Am I being punished for something I have done? Did I take care of myself when I was pregnant?” For myself, I remember thinking that surely my daughter had slipped from the bed when she was very young and hit her head, or that perhaps one of her brothers or sisters had inadvertently let her drop and didn’t tell me. Much self-reproach and remorse can stem from questioning the causes of the disability.

Confusion also marks this traumatic period. As a result of not fully understanding what is happening and what will happen, confusion reveals itself in sleeplessness, inability to make decisions, and mental overload. In the midst of such trauma, information can seem garbled and distorted. You hear new words that you never heard before, terms that describe something that you cannot understand.

Powerlessness to change what is happening is very difficult to accept. You cannot change the fact that your child has a disability, yet parents want to feel competent and capable of handling their own life situations.

Disappointment that a child is not perfect poses a threat to many parents’ egos and a challenge to their value system. This jolt to previous expectations can create reluctance to accept one’s child as a valuable, developing person.

Rejection is another reaction that many parents experience. Rejection can be directed toward the child, toward the medical personnel, or toward other family members. One of the more serious forms of rejection, and not that uncommon, is a “death wish” for the child—a feeling that many parents report at their deepest points of depression.

Seek the Assistance of Another Parent

Boy in wheelchair
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 the world, there are Parent-Helping-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 or call 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 will be different. Try to explain to each other how you feel; try to understand when you don’t see things the same way.

Seek Information and Learn the Terminology

Some parents seek virtually “tons” of medical information; others are not so persistent. The important thing is that you request accurate information. Whenever someone uses a word that you don’t understand, stop the conversation for a minute and ask the person to explain the word. 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. (For printable health log sheets, see the Care Notebook page.) In the future, there will be many uses for information that you have recorded and filed; keep it in a safe place. Again, remember 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.

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. Try not to use too much energy being concerned about people who are not able to respond in ways you might prefer.

Remember that This is Your Child

Remember, your child comes first; the disability comes second. Although your child's development may be different from that of other children, 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. 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.
* To read the complete article, contact the Utah Parent Center and ask for You Are Not Alone: For Parents When They Learn That Their Child Has a Disability, by Patricia McGill Smith, Executive Director, National Parent Network on Disabilities or go to You Are Not Alone (McGill Smith).


Information & Support

For Parents and Patients

Center for Parent Information and Resources (DOE)
A large resource library related to children with disabilities. Parent Centers in every state provide training to parents of children with disabilities. Lists local conferences, support groups, advocacy tips, and suggestions for finding schools and other local services; Department of Education, Office of Special Education.

Utah Parent Center
A non-profit organization that provides training, information, referral, and assistance to parents of children and youth with all disabilities including physical, mental, hearing, vision, learning, behavioral, and emotional. Staff consists primarily of parents of children and youth with disabilities.


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National Support Groups, Disab/Diag

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Authors: Chuck Norlin, MD - 1/2009
Robin Pratt - 12/2003
Content Last Updated: 5/2016