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Handling the Shock of the Diagnosis

Chapter 1: Handling the Shock of Diagnosis

Tools for Parents of Children with Special Needs

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

A. Typical Responses to the Diagnosis:
Do you remember how you immediately felt after you were told what type of special need your child had? 
  • Where were you? 
  • How were you told? 
  • How did you react? 

Well consider the following questions that parents ask after their children have been diagnosed as having a special need and see how many you had:
  • What is the cause of our child's neurodevelopmental problem or special need?
  • Could this special need have been prevented?
  • Did something go wrong during the pregnancy or delivery to cause this problem?
  • Did the doctors do something to cause this problem? Did they leave something undone?
  • Which of us parents was responsible for this problem? Was it one of our faults? Are we responsible for our child having this problem?
  • What did we do wrong to deserve this?
  • Can this special need be ''cured''? Will my child grow out of it?
  • Why did this have to happen to us?
  • How severely handicapped will my child be?
  • Is it safe to have another child?
  • Does the genetic background of one parent contribute more to the special need than that of the other?
  • I cannot help but pity my child. Is this wrong?
  • If our child with this special need lives at home, how will it affect our normal children?
  • How can we explain the special need to our other children?
  • How can we explain our child's special need to relatives, friends, and neighbors?
  • How can I deal with others' reactions to my child's special need?
  • Should we belong to a some organization? What are the advantages of belonging to a parent group? Are there parent organizations address our concerns?
  • Will I always have to be so involved in my child's care?
  • Do I have to change my goals in life because of my child's problem?
  • What are the chances of my child going to college or getting a job later on in life?
  • What programs, schools, specialists are available to help my child?
  • Will we ever be able to have a normal life again?
  • What happens if we precede our child in death? Who will care for him?

 

How well have you been able to get your questions answered? It is important for you to fully explore these questions with the professionals involved in your children's care. Do not stop asking questions until you have a full understanding of what your children's special needs are and what needs to be done to assist your children reach their optimal potential.

 

B. Levels of Parental Awareness about the Diagnosis

What was your level of awareness after hearing the diagnosis given to your child? Compare your level awareness with these of other parents after they received such news:

 

Minimal awareness:

  • The parents refuse to recognize that certain characteristic behavior is abnormal.
  • The parents blame factors other than the diagnosed special need for the symptoms.
  • The parents either deny the need for treatment or believe that treatment will produce a normal child.

 

Partial awareness:

  • The parents describe the symptoms of the special need with questions about the causes.
  • The parents hope for improvement but fear that treatment will not be successful and are skeptical, often looking elsewhere for a better answer.
  • The parents question their ability to cope with the problems.

 

Considerable awareness:

  • The parents state that the child has a specific neurodevelopmental disorder or special need and call it by its actual title.
  • The parents recognize, admit and accept the limitations of any treatments offered to their child in addressing their child's special need.
  • The parents request information about suitable care and training and proceed to gain services for their child and the whole family.

 

Consider these questions:
  • Are you at the considerable level of awareness level?
  • What do you need to do to get to this level?
  • Have you ever met other parents who are at the considerable awareness level?
  • How comfortable do you feel being around these parents?
  • Do you find their approach to their children's special needs difficult to accept?
  • Do you think they have "given up" and have no "hope" by being so aware and accepting of their children's special needs?
 
Often parents who have fully accepted the diagnosis and who have fully read up and learned about it, find that they often know more about the condition than the professionals working with their children. Remember: This is good, this is very good. You the parent are the expert on your child and you have the right to know all you need to know about your child's condition, its causes, the treatments available and the prognosis for your child's future as a result of having this special need.
C. Step to Take after Your Child has been diagnosed

What should you do after your child has been diagnosed as having a disability or special need? Here are just a few suggestions:

 

Admit there is a problem and go to the proper sources for help:

  • Agencies (city, county, state, or national)
  • Professionals (physicians, psychologists, physical therapists, occupational therapists, audiologists, speech therapists, etc. )
  • Programs and schools (for training the child and/or family members)

 

Accept your child as your child is:

  • Let up on pressuring or expecting  normal development or learning patterns and responses
  • Stop trying to fix child. Instead, help child in the ways the child can develop (For example, ask or tell child one thing at a time)
  • Praise your child
  • Set goals and praise your child for each small accomplishment, and take the large goals you have for your child and break them down to workable objectives or action steps which are attainable given your child's capacity to learn and develop
  • Don't dwell on your child's failures.
  • Find your child's strengths and strong points and emphasize them.

 

Be there when your child needs you:

  • Really listen to your child. Your child is saying ''help me'' when your child misbehaves.
  • Don't let other children or adults make fun of your child or how your child is developing. If others make fun of your child, educate them and try to explain to your child that the world is a "hard" or "mean" place and that people don't always act nicely towards people whom they do not understand fully what is wrong with them or what makes them different from the norm.
  • Plan ahead for your child. Don't put your child in a setting that would do more harm than good.

 

Learn to have patience:

  • Give short-term tasks, one at a time.
  • As a parent, work to understand your child.

 

Properly discipline your child:

  • Be consistent.
  • Set short-term consequences and stick to them consistently.
  • Give positive reinforcements for good conduct, like a special privilege, but keep it simple.
  • Keep track of your child's progress to encourage behavior that is expected. Don't dwell on behavioral failures. Reinforce for behavioral successes.
  • Use Pathfinder: Tools for Raising a Responsible Child  as a guide to follow in providing a consistent behavioral program to raise your child to become a responsible person

 

Be honest:

  • Don't tell your child there is nothing wrong. No one knows better than your child does that something is wrong with the child's physical, intellectual, language, emotional or social development.
  • Don't promise a quick cure.

 

Take a positive approach:

  • Reassure your child that there is help for the developmental problem.
  • Development may seem slow, but let your child know that you are in it together.

 

Have faith and trust in the people who are trying to help your child:

  • Don't rely on neighbors or lay people for a solution to this serious problem.
  • Cooperate in every way you can when help is offered.
  • Give qualified suggestions a fair chance to work.
  • But, be ready to seek out second opinions or other intervention options for your child if you feel you are chasing down a blind ally and getting nowhere.

 

Don't give up:

  • Join parent groups for better understanding.
  • Keep communication lines open between yourselves, staff, and child.
  • Check out anything of which you are unsure.
  • Work at trying to understand all you can about your child's condition.
  • Talk with other parents who have children with similar problems.
  • Recognize that your child can accomplish only if you believe your child can.
  • Keep open lines of communication with those in charge of giving care to your child, e.g., teachers, therapists, doctors, church officials, scout leaders, club sponsors, allied health personnel.

 

It is imperative that you maintain your head and wits about you after you have been given the news of the special needs of your child. You are in a vulnerable state at this time and are open to being overly reactive and you might jump on the first solution which comes your way. Remember that your child needs you to be rational and clear headed as you proceed to engage helpers to address your child's needs. You are in the best position to get your child started on the right footing from the point of initial diagnosis if you just "Keep your head about you."

D. What are your rights?

Have you wondered: what is the best way to act now that my child's special needs have been identified? Do I have rights? Do I have a say in how my child will be treated from now on? Must I sit back passively while others tell me what to do? Here is a list of rights of a parent whose child has been diagnosed as having a special need. This list of rights has been identified over the years by parents of children with special needs:

 

The right to feel angry

Nothing in life prepares one for having a child with a speical needs. When it is your child, it seems all the more unfair. You did not ask for this, and there is  very little you can do about it. Your sense of control over your life and the life of your child is at risk. Be angry, but use your anger to get the best services you can for your child.

 

The right to seek another opinion

It makes good sense to seek a second opinion before having surgery, before investing money, or before buying a used car. It should be no different for you and your child, whether you are looking for medical care or an educational program. If you hear of a new treatment that might help your child, why shouldn't you look into it? Times change and so do treatment modalities.

 

The right to privacy

The privacy of each family member can be jeopardized simply by the presence of a child with a special need. Suddenly a series of professionals examine, give advice, and sometimes even judge the actions of individual family members. One parent said that the hardest part for her was having to turn to experts: "it was difficult to have to have someone tell me what to do with my child.'' Some aspects of your life are simply no one else's business. If you do not want to give interviews, or have your child's picture taken, it is your right to refuse.

 

The right to keep trying

Although parenting is not easy, all parents do the best job they can. It can become harder when well-meaning friends and professionals pronounce that you have set goals that your child will never be able to reach, or that you must stand back and accept the fact your child has multiple problems and will never be able to develop normally. There is nothing wrong with you if you are unwilling to give up. If your child has the potential for learning, no one knows what event or combination of events will make the difference for the child. If the others turn out to be right, so what? You will have the knowledge that you did your best for your child.

 

The right to stop trying

Well-meaning friends and professionals have also told parents that they do not work often enough or long enough with their children with speical needs. ''If you would just do this at home for 15 minutes a day and on the weekends, it would make such a difference.'' The truth is that it could just as easily make no difference. You are the one who lives with your child. You are the one who is being asked to do one more thing. You are the one who feels as if you are expected to accomplish at home what trained teachers have not been able to accomplish at school. If you just cannot do it tonight, okay! That is your decision.

 

The right to set limits

There are limits to what one person can do. Don't expect yourself to think about your child incessantly. Your child shouldn't expect to be the center of constant attention. You have limits, and your child has limits. Learn to recognize both, and give yourself a chance to examine the situation before responding in anger or fatigue. You don't have to be a ''super parent.''

 

The right to be a parent

Teachers and therapists who work with children with special needs and their families often give parents activities to do at home. Remember, you are mommy and daddy first. You cannot expect to be a teacher or therapist all the time. Even your child's teacher or therapist cannot teach or treat all the time. (If you ask them, the teacher and therapist would probably admit that they are great at teaching or treating other people's kids, but they don't do half as much as they recommend with their own.)  You and your child need time to fool around, giggle, tickle, tell stories, laugh, and just do nothing. Those times are just as much a part of your child's ''education and treatment'' as the time you spend on scheduled activities.

 

The right to be unenthusiastic

No one expects you to be ''turned on'' all the time. Sometimes you feel sad, you feel sick, or you're worried about money, or your child. If other people take that as a sign that you're "not adjusting'' or that you're ''not accepting your child's situation,'' that is their problem. No one is excited about work every day; it can be tedious one day and new and interesting the next. The same is true of parenting. There will be days when your child thrills you and then days when parenting will seem like the most boring task on earth, You have a right to be "up'' sometimes and "down" at other times.

 

The right to be annoyed with your child

There are days when you like your child and days when you don't, but that does not mean that you don't love your child. Children with special are just as capable of being ornery as other children, and they should be disciplined You may feel extremely guilty about doing it, but your child will benefit and greet you the next morning as though nothing  had happened

 

The right to time off

You need time to yourself, time with your spouse or partner and other adult family members, and just plain time without kids. Many parents describe a tremendous feeling of freedom the first time they went alone to the grocery store after their child was born, even though they were doing a chore, and even though they didn't talk to anyone but the checkout clerk. There are many parts to your life. Each part deserves as much attention and nurturing as does your target child. This refueling will benefit your child in the long run.

 

The right to be the expert-in-charge

You know your child better than anyone else.  You spend the most time with, you have lived with, you know what works and what doesn't with your child. Teachers and therapists come and go, but you are the expert with the experience and first-hand knowledge about your child. You have the right to be in charge of your child's educational, developmental, social, and medical decisions, at least until the child is able to make them as an adult. Professionals do not live with the consequences of their decisions, so while you might want their opinions, remember that they are only opinions and not facts. They cannot tell you: "that you're wrong," "that you will regret it," "that you're selfish," or "that you're not looking far enough ahead." Nor should they make you feel guilty or pressure you into a decision. Parents are the single most important resource that children have.

 

The right to dignity

These parental rights boil down to the right to be respected and treated as an equal. You expect to be neither pitied nor admired, but you expect to be listened to and supported in a nonjudgmental way. You expect to be treated the same, whether or not your child has a speical need. You expect the truth from the doctors, teachers, social workers, and therapists who are there to help you. From your friends, neighbors, and family members, you deserve a chance to be someone other than just the ''parent of a child with a special need.'' You deserve to know why the doctor is looking into or exploring some part of your child's body. If the reason is not voluntarily given, ask. You deserve the courtesy of having professionals who visit your home arrive promptly for appointments. If a teacher or therapist is repeatedly late with no satisfactory excuse, call the program supervisor and ask why. You deserve to be talked to as an adult. If you feel a teacher or a therapist is talking down to you, speak up and tell them so. Sometimes, when you are the parent of a child with a special need, you have to risk being aggressive and, sometimes, even rude in order to obtain the dignity that is your right and you’re due.

E. Learn the Terminology of Your Child's Diagnosis

It is important for you to be able to describe your child's diagnosed special need. This will insure that you are able to be informed and precise as you seek out and advocate for services for your child. What follows are descriptions of a variety of special needs:

 

1.  Intellectual Disability (EMH, TMH, SPMH)  The child with an intellectual disability is one who may not be able to learn quickly or as much as most other children that age.  This includes children who have mild, moderate, severe or profound intellectual disabilities.

 

2.  Specific Learning Disability (SLD)  The child with a specific learning disability is one who seems to have average or better ability, health, vision, hearing, and intelligence, but is still unable to learn things as easily or as quickly as most other children that age. 

 

3.  Attention Deficit/Hyperactivity Disorder (ADHD) The child with ADHD is one who has a neurological condition which results in a problem in paying attention and/or acting impulsively more than other children that age. This problem can be just distractibility and poor attention span or just hyperactivity and no control over impulses and behaviors or can be a combination of both conditions.

 

4.  Hearing Impairment The child with an hearing impairment is one who has a loss of some or most of the ability to hear.  This includes children who are deaf or hard-of-hearing.

 

5.  Blind/Visual Impairment The child with a visual impairment is one who has a loss of some or all of ability to see.  This includes children who are blind or partially sighted.

 

6.  Emotional Handicap (EH, SED) A child with an emotional handicap may seem to act differently, think differently, or have different feelings than most other children that age.  This includes students who are "severely emotionally disturbed - (SED)".

 

7.  Physical Impairment (PI)  The child with a  physical impairment is one who has a severe illness, condition, or disability (cerebral palsy, spina bifida, muscular dystrophy etc) which makes it hard to develop in gross and fine motor arena in the same ways as other children that age.

 

8.  Autistic Spectrum Disorder The child with autistic spectrum disorder (including Pervasive Developmental Disorder (PDD) and Multi System Disorder (MSD)) may seem to act, talk, think or behave very differently from other children that age.  This child may not like to be close to people.  This child has problems with sensory issues, motor planning and emotional and social development.

 

9.  Speech and Language Impairment The child with a speech or language impairment is one who has problems in talking so that the child can be understood, sharing ideas, expressing needs, or understanding what others are saying.

 

10. Seizure Disorder (Epilepsy) The child with a seizure disorder has a neurological condition which affects the central nervous system and results in the child having seizures. A seizure is a time-limited event that results from abnormal neuronal activity in the brain.

 

11.  Homebound/Hospitalized A child who must stay at home or in a hospital for a period of time because of a severe illness, injury, or health problem has special needs as well due to the long term confinement and medical conditions involved.

 

12.  Gifted   A child, who is gifted is one who is very, very bright or smart and who learns things much more quickly than other children that age. Children with gifted intelligence present as many challenges to parents as children with the other special needs listed above. 

 

How well have you handled the shock of your child's diagnosis?

 

Step 1: Before you can be expected to deal with your child's special needs diagnosis, you must identify the diagnosis. You must be able to put it into words. Answer the following questions in your journal:

  1. What diagnosis were you given for your target child? Who gave it to you? When was it given to you? Who did you seek out to confirm this diagnosis? When?
  2. What does this diagnosis mean? What does it involve? What does it mean for the future of your child?
  3. What questions did you ask and have answered after you were given the confirmed diagnosis on your child?
  4. On what level of awareness are you concerning the diagnosis? Minimal? Partial? Considerable?
  5. What is your level of acceptance of this diagnosis?
  6. How have you handled this diagnostic information with (1) your spouse, (2) your other children, (3) your parents, (4) in-laws, (5) other family members, and (6) friends?
  7. What programs, professionals, and schools are available for your child?
  8. What new things are you doing for your child, self, spouse, and family as a result of this diagnosis?
  9. Which of rights of parents presented in this chapter do you feel you have not yet used?
  10. How do you feel about these parental rights and how do they apply to you?

 

Step 2:  Now that you have identified the diagnosis, you are ready to address your handling of it. Answer the following questions in your journal:

  1. How free do I feel in bringing my child into public places like malls, restaurants, and markets, etc.?    
  2. How comfortable do I feel when strangers ask me what is wrong with my child?
  3. How do I handle questions from my parents, in-laws, family, and friends about my child's condition?
  4. How well do I relate to the professionals involved in my child's life?
  5.  How comfortable do I feel in being involved in a support group for parents of children with this special need?
  6. How much hope for the future do I have? How realistic is it?
  7. How much support do I feel from my spouse in handling the reality of my child's diagnosis?
  8. How willing am I to face the lifelong advocacy role for my child?
  9. How much support do I feel from other parents who have children with similar problems?
  10. What hardships or roadblocks do I foresee in getting optimal care for my child's special need?

 

Step 3: Once you have assessed how you are handling your target  child's diagnosis you are ready to develop a plan of action  for yourself. Write this plan of action in your journal:

 

My Plan of Action to Handle my Child's Diagnosis

  1. The diagnosis my child has is:                   
  2. I will get answers to the following questions about the diagnosis:          
  3. I will seek to become fully aware of the full details of the diagnosis and long-term  prognosis by this date: (month, day, year):
  4. I will perform the following tasks within the next three years to help my child with the special need diagnosed:
  5. I will use the following rights of parents as I help my child.
  6. I will insure the physical and mental health of (1) myself, (2) my marriage, (3) my other children, (4) my target child, (5) our family by:
  7. I will perform the following advocacy tasks to insure that quality care is received by my target child during the next three years:
  8. I will reassess these goals every three years. My first review date will be (month, day, year):

 

Step 4: If you still have problems handling the shock of diagnosis, return to Step 1 and begin again.

Helpful Websites

Early childhood News: Intervention: The earlier, the better:http://www.earlychildhoodnews.com/earlychildhood/article_view.aspx?ArticleID=122

Coping Strategies for Parents of Children with Developmental and Intellectual Disabilities:http://www.naric.com/?q=en/publications/volume-8-issue-3-coping-strategies-parents-children-developmental-and-intellectual

What are Some Developmental Problems Children May Have? On wiseGEEK at:http://www.wisegeekhealth.com/what-are-some-developmental-problems-children-may-have.htm

Overview of Intervention on Center for Parent Information and Resources at:http://www.parentcenterhub.org/repository/ei-overview/

Play Therapy Makes a Difference at the Play Therapy Association at: http://www.a4pt.org/?page=ptmakesadifference

My Child Without Limits-Resources for Children with Developmental Disabilities at:http://www.mychildwithoutlimits.org/understand/developmental-delay/developmental-delay-resources/

CDC’s Track Your Child’s Development Help Page at:http://www.cdc.gov/ncbddd/actearly/index.html

CDC’s Developmental Monitoring and Screening at:http://www.cdc.gov/ncbddd/childdevelopment/screening.html

Fetal Alcohol Spectrum Disorders (The Florida Center for Early Childhood) at:http://www.thefloridacenter.org/FASD.php

Living with Fetal Alcohol Syndrome from NoFAS.org at: http://www.nofas.org/living-with-fasd/

My Child has Developmental Delay. What Does this Mean and What Happens Now? FromCleveland Clinic at:
Intervention: The Earlier the Better from Early Childhood News at:www.earlychildhoodnews.com/earlychildhood/article_view.aspx?ArticleID=122

Adjusting to your child’s Developmental Disability Diagnosis on ParentMap at:https://www.parentmap.com/article/adjusting-to-your-childs-developmental-disability-diagnosis

Parents of Children with Disabilities: Resilience, Coping, and Future Expectations onReserachGate at:https://www.researchgate.net/publication/225462574_Parents_of_Children_with_Disabilities_Resilience_Coping_and_Future_Expectations

Childhood and Developmental Disorders on PsychCentral at:http://psychcentral.com/childhood/
Other Developmental and Behavioral Disorders on First Signs at:http://www.firstsigns.org/delays_disorders/other_disorders.htm

Developmental Disabilities on Inspire at: https://www.inspire.com/groups/developmental-disabilities/

Helping Parents Deal with the Fact That Their Child Has a Disability on LDOnline at:http://www.ldonline.org/article/5937