HANDLING THE SHOCK OF
1. Typical Responses to the Diagnosis
2. Levels of Parental Awareness about the Diagnosis
3. Step to Take after Your Child has been Diagnosed
4. What are your rights?
5. How well have you handled the shock of your child's diagnosis?
6. Learn the Terminology of Your Child's Diagnosis
Typical Responses to the Diagnosis
Do you remember how you immediately felt after
you were told what type of disability or 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 disability and see how many you
What is the cause of our child's developmental
problem or disability?
Could this disability have been prevented?
Did something go wrong during the pregnancy or delivery to cause
Did the doctors do something to cause this problem? Did they leave
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 disability 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
disability 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 disability to our other children?
How can we explain our child's disability to relatives, friends,
How can I deal with others' reactions to my child's disability?
Should we belong to a some organization? What are the advantages
of belonging to a parent group? Are there parent organizations address
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
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.
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:
The parents refuse to recognize that certain characteristic
behavior is abnormal.
The parents blame factors other than the diagnosed disability for
The parents either deny the need for treatment or believe that treatment
will produce a normal child.
The parents describe the symptoms of the disability
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
The parents question their ability to cope with the problems.
The parents state that the child has a specific
developmental disability or special need and call it by its actual
The parents recognize, admit and accept the limitations of any treatments
offered to their child in addressing their child's disability.
The parents request information about suitable care and training
and proceed to gain services for their child and the whole family.
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.
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, 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
• Praise your child
• Set Goals and praise your child for each small accomplishment
• Take the large goals you have for your child
and break them down to workable action steps
• 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 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
• Don't dwell on behavioral failures. Reinforce
for behavioral successes.
• Use Pathfinder: Tools for Raising Responsible Children (Messina1994)
as a guide to follow in providing a consistent behavioral program
to raise your child to become a responsible person.
• 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
• Don't promise a quick cure.
Take a positive approach
• Reassure your child that there is help for the
• 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
• 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.
• 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
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
• 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
need of your child. You are in a vulnerable state at this time and
are open to be 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."
What are your rights?
These rights are a summary of the article
Twelve Parental Rights written by Kay Ferrell, a parent. It
first appeared in the November 1985 issue of The Exceptional
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 disability. 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 disability. 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 disability. 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 disabled children. ''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 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 disabilities 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
can't do a thing 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 disabilities 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 disability. 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 disability.'' 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 disability, you have to risk being aggressive
and, sometimes, even rude in order to obtain the dignity that is
your right and your due.
How well have you handled the shock of your child's diagnosis?
Before you can be expected to deal with your child's
diagnosis of a disability, you must identify the diagnosis. You
must be able to put it into words. Answer the following questions
in your journal:
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?
What does this diagnosis mean? What does it involve? What does it
mean for the future of your child? What questions did you ask and
have answered after you were given the confirmed diagnosis on your
On what level of awareness are you concerning
the diagnosis? Minimal? Partial? Considerable? What is your level
of acceptance of this diagnosis?
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?
What programs, professionals, and schools are available for your
child? What new things are you doing for your child, self, spouse,
and family as a result of this diagnosis?
Which of rights of parents presented in this chapter do you feel
you have not yet used? How do you feel about these parental rights
and how do they apply to you?
Now that you have identified the diagnosis, you
are ready to address your handling of it. Answer the following questions
in your journal:
• How free do I feel in bringing my child into
public places like malls, restaurants, and markets, etc.?
• How comfortable do I feel when strangers ask me what is wrong
with my child?
• How do I handle questions from my parents, in-laws, family, and
friends about my child's condition?
• How well do I relate to the professionals involved in my child's
• How comfortable do I feel in being involved in a support group
for parents of children with this disability?
• How much hope for the future do I have? How realistic is it?
• How much support do I feel from my spouse in handling the reality
of my child's diagnosis?
• How willing am I to face the lifelong advocacy role for my child?
• How much support do I feel from other parents who have children
with similar problems?
• What hardships or roadblocks do I foresee in getting optimal care
for my child's disability?
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
• The diagnosis my child has is:
• I will get answers to the following questions about the diagnosis:
• I will seek to become fully aware of the full details of the diagnosis
and long-term prognosis by this date: (month, day, year):
• I will perform the following tasks within the next three years
to help my child with the disability diagnosed:
• I will use the following rights of parents as I help my child.
• I will insure the physical and mental health of (1) myself, (2)
my marriage, (3) my other children, (4) my target child, (5) our
• I will perform the following advocacy tasks to insure that quality
care is received by my target child during the next three years:
• I will reassess these goals every three years. My first review
date will be (month, day, year):
If you still have problems handling the shock
of diagnosis, return to Step 1 and begin again.
Learn the Terminology of Your Child's Diagnosis
It is important for you to be able to describe
your child's diagnosed disability. This will insure that you are
able to be informed and precise as you seek out and advocate for
services for your child. Review the Glossary of Terms on this website
to facilitate your understanding of the jargon used by the professionals
and programs involved with your child.What follows are descriptions
of a variety of disabilities:
1. Mental Handicap (EMH, TMH, SPMH)
The child with a mental handicap is one who may
not be able to learn quickly or as much as most other children that
age. This includes children who are EMH "educable," TMH
"trainable," or SPMH "profound."
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.
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.
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.
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.
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)".
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
Autism Spectrum Disorder
The child with autism 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.
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
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.
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.
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
Reproduced from coping.org,
a Public Service of James J. Messina, Ph.D. & Constance M. Messina,
Ph.D., Email: firstname.lastname@example.org ©1999-2007 James J. Messina,
Ph.D. & Constance Messina, Ph.D. Note: Original materials on
this site may be reproduced for your personal, educational, or noncommercial
use as long as you credit the authors and website.
Click here for the full
range of Asperger's and autism fact sheets at www.autism-help.org
See the Family
and Carer issues section of the website for more information.