Children with Special Needs
To accompany Chapter
There are many
ways that we refer to children who have special needs – exceptional
children with handicaps; children with disabilities.
It is important to understand the term
parents and children prefer.
there has been emphasis on understanding that rather than saying “special needs
child,” we say “child
This puts the emphasis on
the child first
rather than the special need.
It is also
important to understand that there are many categories of special needs
variety of strategies that might be used by families to encourage
development of the child.
This lecture offers some general information about
exceptionalities and discusses some of the common problems that
when they have a child with a special need.
Categories of Special Needs
: (1-7 from
Hallahan and Kauffman (1994) Exceptional Children: Introduction to
disabilities – these are limitations that affect
learning or school attendance because they need special equipment,
2. Mental retardation – children who have
intelligence (below 70-75 IQ). Mental
retardation can be mild, moderate or severe.
3. Learning disabilities – children who
difficulty, but have intelligence within normal range.
This is sometimes coupled with behavior
4. Communicative disorders – speech and
5. Deafness – little or no hearing even
with hearing aids
6. Visual impairment/blindness – With
impairment the child
can read by
using large-print books or magnifying glasses. Blindness
means that the child’s vision is so impaired
that they must
read with Braille or use audiotapes.
7. Emotional and behavioral disorders –
This would include
children and other children whose behaviors adversely affect their
8. Developmental delays – Children who
delays in physical,
cognitive, or social-emotional development. They
need special education and other services.
9. Chronic illness - These children are
often in the
from their parents, may have to undergo painful medical procedures,
school, may regress in behavior, cause economic strain in family
10. Gifted children – children who have
ability intellectually or who excel in creative or artistic areas. They often need school services that present
them with more challenge than the regular curriculum.
Difficulties for Parents
Parents who are raising a child
with special needs face special challenges.
following essay describes how many parents feel when
they give birth
to a child with a special need.
Welcome to Holland by
Emily Pearl Kingsley
“I am often
asked to describe the experience of raising a child with a disability –
to help people who have not shared that unique experience to understand
imagine how it would feel.
this . . . .
you’re going to have a baby, it’s like planning a fabulous vacation –
You buy a bunch of guidebooks and
make your wonderful plans.
The Michaelangelo David.
gondolas in Venice.
You may learn some
handy phrases in
It’s all very exciting.
months of eager anticipation, the day finally arrives.
You pack your bags and off you go.
hours later, the plane lands.
attendant comes in and says,
“Welcome to Holland.”
“What do you mean,
I signed up for
supposed to be in Italy.
All my life
I’ve dreamed of going to Italy.
there’s been a change in the flight plan.
landed in Holland and there you must
important thing is that they haven’t taken you to a horrible,
filthy place, full of pestilence, famine and disease.
It’s just a different place.
must go out and buy new guidebooks.
you must learn a whole new language.
you will meet a whole new group of people you would never have met.
a different place.
than Italy, less flashy than Italy.
after you’ve been there for a while and you catch your breath, you look
and you begin to notice that Holland has windmills, Holland has tulips,
even has Rembrandts.
everyone you know is busy coming and going from Italy, and they’re all
about what a wonderful time they had there.
for the rest of your life, you will say, “Yes that’s
where I was
supposed to go.
That’s what I had
pain of that will never, ever, ever go away, because the loss of that
a very significant loss.
“But if you
spend your life mourning the fact that you didn’t get to Italy, you may
be free to enjoy the very special, the very lovely things about
Some of the situations parents of children with special
needs face are:
- Anticipation of what baby will be like; imagining the new
dad and baby; and having to readjust expectations once child is born. Research shows that parents with higher
education tend to be more disappointed and feel more stress over having
disabled child than parents who are less educated.
- First time parents may not have a basis for comparison when
their child’s behavior (i.e., thinking a short attention span is
behavior rather than being symptomatic of a physical or emotional
- Not getting cues from the child
to indicate wants, needs, emotions (smiles, gestures, sounds). The child who has a flat affect or is
unresponsive may cause the parent to feel rejected or frustrated
can’t read their child very easily.
- Sometimes parents have a hard
time seeing past the disability and may see their child and as an
tragedy rather than as a person (in one study a mom said she kept
child as his disease or a collection of symptoms rather than as a
- Denial and grief are common
first reactions (sometimes parents even refuse to acknowledge the
with their child, even refusing the say the words “muscular dystrophy”
Syndrome” - almost a belief that if they don’t acknowledge it, it will
- Dealing with other peoples’ reactions
to their child. Sometimes parents are so
worried about what grandma will think, or how their child will compare
or her cousins that they become less effective as parents.
Parents of children with special needs should
work to have supportive people around them; people who are encouraging
- Sometimes parents see themselves
in a negative way for having a child with a disability.
It is not uncommon for parents whose child is
born with a disability to blame themselves. Mothers
in particular, may think that the child has
because of something they did or didn’t do during the pregnancy. While it is sometimes the case that mom
smoking or drinking during pregnancy is the cause of a child’s
times a child is born with a disability and there is no way of knowing
happened. Parents need to get past the
guilty feelings and figure out how to best parent their child.
- Parents sometimes see the child
in a negative way; may feel actual dislike for the child and feel
guilty for having
negative feelings toward the child. If a
parent can’t overcome their negative feelings toward the child, outside
intervention is probably warranted.
- Parents face the challenge of
accepting the child’s disability and dealing with it as best they can. They also face the challenge of spending time
with other children in the family. It is
not uncommon for parents to find themselves neglecting their other
because the child with the special need takes up so much of their time
efforts. It is important for parents to
seek out respite care for the child with special needs and make an
spend quality time with their typically developing children.
- Marital and family tension and
stress increases after birth of disabled child; and a couple
was strong before child was born has a better chance of surviving. If there were stress or problems in the
couple relationship before the child was born, the relationship is at
risk of falling apart. Relationships
tend to decrease in quality or disintegrate when many stresses pile up
of one another.
- Moms often report feeling
trapped by their lives; feeling that they’ll never be free; and have
of helplessness and depression. Research
shows that fathers feel less distressed over the situation of having a
with special needs than mothers. This is
because most of the time, the bulk of caring for the child falls on the
mom. Moms, however, are shown to be more
flexible when dealing with the child and the disability and react more
effectively to their child.
When a child with special needs is
born into a family, very often the forgotten people in the family are
Parents need to spend
so much time with the child with special needs that the other children
neglected or shunted aside in favor of their sibling.
It is not uncommon for siblings of children
with special needs to experience the following reactions.
What Parents Need Help With
- Feelings of ambivalence about
their sibling. They know they should
love their sibling, but may feel resentment, frustration, and even
the child. Parents often become upset if
the typically developing child says something like, “I hate my
brother,” or “I
wish she’d never been born.” While it is
a common reaction to get angry at the child who says this sort of
thing, it is
important for parents to try to put themselves in the place of that
understand where those feelings and behaviors are coming from. Some one-on-one time with each parent on a
regular basis is important so that parents can maintain positive
all their children.
- Siblings of children with
special needs may resent the time and energy it takes from the parent
- Sisters tend to have more
responsibility in the family than brothers and are more likely to
discouraged and depressed because they are expected to pick up the
mom has to care for the sibling with special needs.
It is not unusual for daughters in the family
to become responsible for caring for the other children, making meals,
siblings off to school, etc. Parents
need to take care not to force too many responsibilities on their
- Siblings have to deal with other
kids’ reactions to their sibling with special needs.
When other kids make fun of their sibling,
they often are torn between feeling ashamed of their sibling and
have to defend their sibling.
- Parents sometimes won’t let
siblings talk about their feelings, particularly negative feelings. Upon hearing something negative from their
child, they may say “You don’t really mean that about your brother,” or
have to love your sister all the time; if you say something negative,
hurt her feelings.” Parents need to
realize that, just as in a family that has children with no special
the family with a child with special needs, siblings are not always
get along. There will be times when they
fight or say they hate each other. Parents
sometimes don’t have the energy to deal with
feelings of their typically developing child as well as the other
- Kids sometimes need outside
counseling to deal with their feelings (in one study a girl said she
hatred toward her sister for “ruining her life”). Kids
need to understand that it’s natural to
have negative feelings toward the sibling with special needs. They also need to learn ways to deal with
those feelings and develop and nurture a positive relationship with
Parenting a child with special
needs is often a frustrating experience.
say they can’t get a clear diagnosis for their
child; they have
difficulty dealing with their child’s school; they aren’t sure what
services are available to them.
some of the worries parents often have in this situation.
- Needing a better prognosis for
their child. Parents often say they have
difficulty getting a good idea from their child’s doctor of how their
will progress. They want to know what
life will be like for their child a year, five years, ten years down
the road. They express much frustration at
what expectations to have of their child. To
be fair, doctors sometimes aren’t able to give a
definitive answer to
a parent’s questions. For some
disabilities there is a wide range of potential development, and in
instances, treatments for one child may not work as well for another.
- Needing more support from extended family members. Very often parents of a child with special
needs feel all alone with their situation. Family
members sometimes aren’t sure what they can do
to help, and sometimes
family members have no desire to help. I
had a student a few years ago who had this very difficulty. She and her husband had adopted four
children, all of whom had special needs. The
special needs varied (learning disabilities,
hearing difficulties). She and her
husband were very committed to raising their children so that they
develop as fully as possible, given their particular special need. Her parents, who had been looking forward to
becoming grandparents, were so disappointed that she had adopted
special needs, they closed off communication with her and her family. They didn’t feel equipped to be grandparents
of children with disabilities. This, of
course, was a very sad situation for my student and her husband. But in many ways it was a bigger loss for the
grandparents. They were missing out on
what could have been a precious experience.
- Needing better professional support. Parents
say they don’t always get enough information;
they often feel
rushed when talking with medical professionals. They
sometimes find it difficult to get information
networks, resources that would be helpful. With
the internet, parents now have the ability to
find a great deal of
information on a wide range of topics. It
is easier nowadays for parents to gather
information and then develop
questions for medical personnel based on the information they’ve
- ifficulty in dealing with
child’s school. Parents of children with
disabilities have rights under the law. There
are laws in place that guarantee all children an
appropriate education. In some instances
schools are very supportive of parents and children with special needs
hard to accommodate their needs. In
other situations, schools are resistant to putting in ramps for
accommodating children who need aides in the classroom, etc. Cost is often cited as a factor when schools
don’t comply with the law.
- Parents say they sometimes get
double messages from medical personnel. They
hear phrases like “parents are crucial for helping their child” and
hear phrases like “parents are inadequate and ill-equipped to meet
child’s needs.” It is hard for them to
know whether they are needed or are seen as in the way.
- Parents also state that they
encounter professionals who see them as obstacles to the child’s
treatment. Ideally, the medical
personnel and other professionals who work with the child will welcome
parent as part of the team. The best
thing for the child is when the parents and all the other individuals
a connection with their child can work together on helping the child to
best he or she can be.
Things that Help Parents
1. Open, honest communication at
all levels (doctors, nurses, family members, school personnel).
2. Learning where resources are
that will help.
- need to know how
to enrich child’s environment
- need to know how
to communicate with child
Developing resiliency; and being
realistic about their
situation and going
on from there.
4. Working with the challenge of their
special child, rather than fighting it.
5. Being persistent with people who
are supposed to help the child:
- social services
- testing centers. In the past I’ve shown
a video in my class
that is about parents talking about raising their children with special
needs. One mom tells the story of the
day her child, who was in a wheelchair, needed to have some cognitive
done. She arrived at the agency where
the testing was to take place, but found that there was no ramp for her
wheelchair. She asked how she was
supposed to get him up the stairs, especially since she had two other
with her at the time. She was told that
she’d have to carry him. This was pretty
much impossible because of his chair, and having to hold the hands of
children. She explained that legally
they needed to have a testing room accessible to children in
wheelchairs. After making a big of a fuss
situation, someone finally found a cramped storage room on the first
where her son was given the test. The
testing conditions were poor and he ended up scoring much lower than
thought he could have if he’d been able to take the test in a regular
room. She and her husband garnered
attention and support from others in the community to make the testing
accessible. They managed to get local
news organizations to publicize the story and soon after that the
made accessible. And while this is a
success story for these parents, the fact remains that it shouldn’t
much trouble to make someone uphold the law.
Many parents say that finding support
groups of other
parents in similar
situations is the most helpful thing for them.
other parents to talk with and trade ideas and
problems with keeps them sane.
Questions for Consideration
Think about your own feelings about
the following situations.
1. How you think you would react
you discovered that your child was “less than perfect?”
2. What obstacles confront parents
raising special children?
3. What sort of satisfactions might
there be for parents of children with special needs?
4. How might raising a child with
special needs affect a parent’s development and lifestyle?
5. In two parent families, how might
the presence of a child with disabilities or a child who is chronically
child test the parental relationship?
6. How might siblings be affected
by the presence of a sister or brother who is disabled?
7 How might siblings of special
children benefit from the sibling relationship?
8. What resources would you recommend to a
friend who has a
to the Course Syllabus