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By Sally L. Smith
Abstract
Children with learning disabilities, attention deficit/hyperactivity
disorder (ADHD), and related disorders puzzle parents because of
their many abilities and disabilities. It can also be difficult
to understand how much of their behavior is the nature of the condition
and how much is oppositional. It is all too easy for parents to
catch a child's feelings of inadequacy and then feel bad as a parent.
Parenting approaches that include clear, concise instructions; structure
without rigidity; nurturing a child's gifts and interests; and constant
approval of positive behavior help parents feel better and help
children feel safe. It takes time for both children and parents
to embrace the concept that being different does not mean being
inferior and, in fact, can be a good thing. Parents need to be nurtured
and praised to help them nurture and praise their children. Most
parents use almost every resource they have to help their children
flourish, and still, they worry they are not doing a good enough
job. Usually they are!
Introduction
Few people realize how difficult it is to be a parent... until
they become a parent. Parents are totally responsible for the safety,
welfare, and education of a tiny infant who quickly becomes a growing,
everchanging, maturing child. Parents have to set their own rules,
develop their own routines, and form their own expectations. When
parents are married, differences of opinions have to be worked out
with the greater good of the child held aloft. If it is difficult
to be a parent, it is even more difficult to be a parent of a child
with special needs.
Discovering the Problem
Discovering a child's special needs is often a confusing and painful
process for parents. First of all, because learning difficulties
can be subtle, multiple, and difficult to pinpoint, it can be hard
for parents to know whether things are normal or not. Especially
with a first child, parents may not know when to expect vocalizing,
playing with sounds, and learning to speak. It is also difficult
to distinguish between a healthy, very active toddler and a hyperactive
toddler with ADHD. What is the difference between the child who
is a little clumsy (which will be outgrown) and a child having significant
motor skills problems? What are the indications of children being
off course in their ability to listen and follow directions? It
may take some time for parents to recognize and articulate concerns.
Even after a diagnosis, parents often face a whole gamut of emotions
before they can grapple effectively with the stark truth that their
child has learning disabilities. Parents may move through emotions
like Kubler-Ross' ( 1980) stages of grief, initially denying there
is a problem and rationalizing why it's not a problem, then having
to deal with the fear, the anger, and the guilt of having a child
who experiences many difficulties. It is normal for parents to want
to blame somebody - anybody - and to bargain in the sense of thinking
that changing neighborhoods, schools, or doctors. might make the
problems go away. Grieving for what might have been follows, and
finally parents can come to accept the child's strengths and weaknesses
and try to figure out a helpful plan of action (Kubler-Ross, 1980;
Smith, 1995).
Neurologic Basis
Parents often feel guilty because they feel their child's learning
disabilities, ADHD, and related disorders are somehow their fault.
But, that is not true. Parents may tend to feel that if they had
been stricter, demanded more, forced more practice, it would have
changed the situation. That would not have changed the situation.
Children and adults with learning disabilities often have clusters
of difficulties that lead to academic failure or low achievement.
These disabilities emanate from a neurophysiological base. It is
as though the switchboard of the brain short circuits some of the
information coming in, scrambles it, and then loose wires interfere
with the ability to get that information out. This neurological
dysfunction contributes to disorder, disorganization, and problems
with communication. Parents can be reassured that these problems
are organic and are not caused by external factors (Smith, 1991;
1995).
For years there have been nay-sayers who claim that there is no
such thing as learning disabilities - that there are lazy children
and motivated students, that there are stupid children and bright
students. However, technological advances over the last 5-10 years
have laid those issues to rest. Brain researchers using magnetic
resonance imaging (MRI) have shown differences between the brains
of individuals with learning disabilities and those without (Dr.
Martha Denckla, personal communication). Researchers have also found
images of ADHD in the central nervous system (Dr. Xavier Castellanos,
personal communication). The architecture of the brain of the child
with learning disabilities is different.
Brain researchers also point out that neuronal links in the brain
typically travel in particular patterns, but in individuals with
learning disabilities, they are scattershot all over the brain,
resulting in unusual linkages (Dr. Gordon Sherman, quoted in The
Doctor is In, 1988). Consequently, exceptional disabilities
are often linked with exceptional abilities. As an example, for
over 35 years, graduates of the Lab School of Washington have become
very successful in the arts as graphic artists, film makers, fashion
designers, jewelry makers, actors, architects, photographers, musicians,
dancers, and computer graphic specialists. A number of the graduates
have also become highly successful entrepreneurs and business executives.
Parents can take reassurance in the fact that many abilities
usually accompany the constellation of problems or cluster of difficulties
that constitute learning disabilities.
Understanding Behaviors
It is often confusing to parent children with learning disabilities,
ADHD, and related disorders. One of the biggest confusions and challenges
parents face is the large hiatus between what the children can
do and what they cannot do. Often they are very smart,
know a great deal, and reason well, yet cannot read or write. School
teachers and family may be telling them to try harder, and they
are usually trying their hearts out. They tend to work 10 times
harder than everyone else does, but still they may be called lazy.
Another aspect of the confusion for parents lies in how hard it
can be to distinguish between a child who can't do something
and a child who won't do something. For parents, it can be
vexing not to be able to control a 5 or 6-year-old or to know whether
to push an adolescent or reduce expectations. In this confusion,
parents tend to ask, What is wrong with me? rather
than What challenges is my child having to face? Shifting
this focus can be therapeutic for parents and children.
Children may seem to be having behavior problems when, in fact,
they are confronting difficulties in accomplishing a task. Children
tend to withdraw or act out when a task is too demanding. It can
help parents to know that when children say they hate something,
that usually serves as a wonderful diagnostic tool, indicating what
is difficult or impossible for them. For example, when a child loves
dance, art, and music but hates drama, it could be that the child
has a speech/language problem. When a child hates math or reading,
these are likely areas of difficulty. Conversely, what children
like and want to do usually serve as indicators of their strengths.
While a diagnosis will help to some extent, the job of sorting
out these issues on a day-to-day basis is no small task. On a planning
level, confusion occurs because teachers, doctors, psychologists,
and social workers may disagree not only on diagnosis but on the
best treatments or programs for a child. This can be frustrating
and anxiety-provoking for parents who have to pull all the information
together and decide what to do, right or wrong. Additionally, at
home and elsewhere, parents must anticipate problems and sense when
their children are tired, or frustrated, or about to explode. Parents
must trust their guts as to how long the child can last at a party,
or sit in a restaurant, or be pleasant with visitors. While parents
have to do this with all children, it is much more challenging with
this population.
Parents of children with special needs are constantly trying to
puzzle out what's working, what's not working, what causes the child’s
frustration, and what brings the child pleasure. Parents have to
analyze everything, think carefully, reflect on activities of each
day, and problem solve to recognize the child's strengths, interests,
and areas of difficulty, and come up with plans for managing the
child's behavior and supporting the child's development.
The Family with the Child with Special Needs
Learning disabilities can be hard on a family. One parent, often
the mother, may recognize and face the problem sooner or more readily
than the other. Misunderstanding and conflict can result. Brothers
and sisters often resent the amount of attention given to a child
with special needs and may proclaim knowingly that the child is
a spoiled brat who is perfectly capable. Grandparents tend
to blame parents for not doing enough, not being disciplined enough,
organized enough, or not giving enough direct help to the child.
Neighbors can be intolerant if the child is very hyperactive or
has low frustration tolerance and tends to explode or cry at each
hurdle.
On a daily basis, children with special needs typically raise the
irritant factor in family life. They tend to leave everyone on edge
because their behavior is unpredictable, erratic, inconsistent.
and full of ups-and-downs. Children with learning disabilities and
ADHD are usually very disorganized. They have trouble dealing with
sequences and order, so they don't plan well. They are distracted
easily and often impulsive. Just getting washed and dressed in the
morning can be an arduous task. sometimes resulting in explosions
on the part of the children, their parents, or both. Clashes frequently
emanate from a child's misunderstanding of instructions or going
off on a tangent. To complicate the problem, when wrong or criticized,
children with learning disabilities tend to fall apart, withdraw
into day dreaming, or strike out in one form or another.
Emotionally this population is very immature and fragile. These
children tend to personalize things that have nothing to do with
them. For example, when family members are laughing at something,
children with special needs are often convinced that they are being
laughed at, and, as a result, they get very upset. Furthermore,
their moods swing widely, and a child may be laughing one moment,
crying the next (Smith, 1995). This emotional lability is hard to
live with. Children with learning disabilities and ADHD are prone
to depression (Smith, 1991 ). Their sense of defeat and failure
is contagious and, sometimes, the whole family feels their helplessness
and despair. Often adults, otherwise incredibly competent in their
daily lives, feel incredibly incompetent when with these children.
This can take a toll on parents, and support and education may be
necessary to bolster parents' sense of confidence and competence
in effectively parenting the child with learning disabilities.
Parenting Strategies
Addressing difficulties with time and space. Space and time
are organizing systems involved in every task, every performance,
every aspect of life. Yet, because of central nervous system dysfunction,
neural immaturity that tends to disorder, and poor organization,
many children with learning disabilities are very disorganized -
unable to keep their rooms anything but a complete mess, unable
to accomplish even the simplest task in a timely fashion, unable
to follow instructions, likely to lose belongings frequently, and
appearing lost in time and space. Problems with sequencing explain
why they have trouble remembering the days of the week, seasons,
the alphabet, counting, and the order of tasks and instructions.
These problems are why they have trouble beginning projects, sustaining
them, and finishing them. Poor organization not only affects home
life and relationships with friends, who will take only a certain
amount of forgetting and lateness, but also academic life. Poor
organization means forgetting to bring home the homework or not
having the time management skills to meet deadlines. It affects
being able to establish priorities -what is most important to study,
what is less so. Often this disorganized behavior looks oppositional
and hostile, when actually it stems from the very nature of the
learning disability.
Parents and teachers of children with learning disabilities can
help them by providing clear structuring of time and space. To help
children with structuring space, visual aids can be useful. For
example, shelves can be used instead of drawers so children can
see where things belong and how to put them back. The use of other
visual cues, such as lists or labels, can augment efforts to help
children organize tasks and belongings.
Developing understandable and reinforced routines can help with
structuring time. Breaking routines and other tasks into manageable
chunks and communicating what must be done first, next, and last
is important. A large number of children with learning disabilities
have language learning disabilities, which means they have trouble
deciphering language, listening, and following instructions. Because
of this, it is also helpful if parents and teachers limit the number
of words used in giving directions, using simple phrases such as.
Go upstairs. Close the window. Come down.
Parents can also assist their children by engaging them in planning
activities. Examples include planning celebrations, planning a garden,
organizing what needs to be done to collect food for the homeless,
or any other kind of planning that involves developing lists, going
shopping, checking off the lists, and then charting the tasks still
to be done (which can then in turn be checked off). All of these
projects are useful, engaging, and have the hidden agenda of working
on organization skills.
Addressing relationship difficulties. While children with
learning disabilities face challenges academically, a problem that
many parents find more troubling than difficulties with the 3 R's
(reading, writing, `rithmetic) is the 4th R: relationships. Many
children with learning disabilities cannot play successfully with
even one child and certainly not two. They don't read social signals:
facial expressions, gestures, or tones of voice any more than they
read letters or words. Additionally, many of these children are
literal and concrete, they can not deal with subtleties, nuances,
inferences, or multiple meanings. This affects family life and peer
relationships because they often can not understand jokes, subtle
teasing, or sarcasm. One of the consequences of this is that they
have to be taught explicitly how to relate to others. Parents have
to work with them on reading faces, reading gestures
and movements, and learning what is and is not appropriate to say.
Parents may have to coach them through common social situations
until they develop appropriate interpersonal behaviors.
Parents can provide their children with practice in anticipating
what might happen in various social situations. They can role-play
with their children about what to do or say when they want to join
a game that their cousins or friends are playing, or when grandparents
say, Read this to me. Some parents have found it useful to
show the wrong way of handling a situation and then to have their
children critique them. The process of acting situations out, problem
solving, and talking about the situations, helps many children with
learning disabilities and ADHD think through various options.
Promoting self-esteem. Early on, children with learning
disabilities begin to notice that others can do tasks easily that
are intensely difficult for them, and they begin to feel bad about
themselves. They may receive frequent criticism or, at best, global
praise such as You are doing better (better than what?),
You are doing fine (what is fine?), You are making progress
(what is progress?). Criticism damages self-esteem, and global praise
is often too abstract to be meaningful to concrete thinkers.
By training themselves to comment on the positive as much as possible,
by offering concrete comments on what their child is doing well,
and by using very specific praise, parents will cultivate desired
behaviors and boost their children's self-esteem (Smith, 2001).
Examples of specific praise include phrases such as: You finished
the assignment, You are listening carefully, You are sitting properly
and looking at me, You remembered to bring home the work you have
do, You cleaned the table after dinner, You picked up the bag the
lady dropped. Thank you. With specific praise, a child can be
very clear on what behaviors are liked and expected.
Visual, concrete proof of progress also helps children notice and
feel confident about their progress and accomplishments. Home made
certificates, gold stars, stickers, charts, and check lists with
lots of checks can be used when children work hard on tasks at home,
such as remembering to take out the garbage, shopping without forgetting,
setting the table correctly, making their beds, and putting the
toilet paper into the holder when the last piece has gone.
Parents and teachers also boost children's self-esteem by seeking
out what they can do well and fostering and supporting these areas
to the hilt. Whether it is an art form, science, nature, photography,
computer work, selling things, inventing, or telling stories, children
with learning disabilities need parental support to become the best
in this area at home and to bring their talent into school. It won't
help them feel better about their academic performance, but it will
help them feel better about themselves.
Teaching children that many people have overcome difficulties to
become successful is another valuable parenting strategy. One way
to do this is to read or play tapes of biographies in which children
or adults have had to struggle to achieve their goals -adventures
where the characters got lost or had to fight sharks or other beasts;
stories of achieving despite illness or disability; or stories of
fighting prejudice or unfairness. Children enjoy and benefit from
discussing these kinds of challenges. Additionally, when parents
can introduce their children to highly effective members of society
who struggle with disabilities, particularly disabilities similar
to those the child faces, children can hold their heads higher.
All members of society who are functioning well with learning disabilities
and ADHD - firemen, policemen, plumbers, day care center workers,
business executives, park rangers, recreation coaches, athletes,
and celebrities can serve as role models and inspiration for children
with learning disabilities.
When parents learn to cherish diversity, their children learn there
are many different ways to celebrate birthdays, get married, raise
children, and so forth (Smith, 1994). These children feel better
about themselves when they understand that doing things differently,
learning differently, being different is OK, and that differences
can enrich our lives. Artist Chuck Close said, I think accomplishment
is figuring out your own idiosyncratic solutions. Accomplishment
is being able to do what you want to do even if you don't do it
the way everybody else does it. (Smith, 1991, p. 703, and personal
communication).
Empowerment. Children with learning disabilities and ADHD
often feel powerless and inadequate. They tend to be passive learners
and need to be totally involved in activities to make them active
learners. Parents can encourage hands-on activities, such as cooking,
cleaning, shopping, and running errands to show children that they
can make things happen. These learning activities have the additional
benefit of resulting in tangible, visible products appreciated by
the whole family.
Parents must beware of doing too much for children with learning
disabilities because that does not empower them. The effects of
active engagement are in fact neurological. California neurobiologist
Marion Diamond's research (Diamond & Hopson, 1998) shows that
the sights and sounds of enriched environments cause dendrites to
form neural pathways that she calls magic trees of the mind.
Her data demonstrate that the curious mind, stimulated to further
inquiry, makes the central cortex thicker, activating the brain
to further enhance learning (Smith, 1995).
Parents can also empower their children to view obstacles as challenges
and to know that they have a lot going for them and a team behind
them. It helps children with learning disabilities when parents
can adopt a problem-solving mode rather than always providing the
answers. It helps to say. What can we do about this? What options
do we have? Let's figure out where we can find the information we
need instead of doling out the right answer much of the time.
Parenting children with learning disabilities and ADHD demands enormous
amount of problem solving, and on top of that, parents need to help
turn their children into outstanding problem solvers. Grappling
with adversity, figuring out strategies that work for them, and
learning when to ask for help and who to ask are crucial life skills
that these children must learn and will hold them in good stead.
Parents can foster curiosity in their children and lay the framework
for thinking and questioning. When children's minds are questioning
everything, their bodies are active, and their hands are into things,
children are helped to achieve the highest cognitive development
possible. Parents work with their children to develop critical thinking
skills when they have them look at photos or drawings and piece
together what could be going on; when the family watches a TV show
and the children are asked what the big message was; when a mystery
story has been read and the children guess who did it; or when a
family plays games like chess, checkers, Clue,® and Stratego™.
Children often can teach their parents how to work computers, and
programs like HyperStudio® allow children to draw, to photograph,
to speak, to scan objects from the Internet, and to make rewarding,
satisfying multimedia presentations that simultaneously use and
develop many skills.
Cultivating Parental Optimism
Because it can be frustrating to parent children with learning
disabilities and behavioral challenges, it is encouraging for parents
to know that some of the negative behaviors of their children
very often become positive attributes in adulthood. For example,
the most stubborn children often turn out to have fierce determination.
The most manipulative children often turn out to be fabulous entrepreneurs,
leaders, or politicians. The children who argue all the time like
jail house lawyers actually become lawyers, and those who doodle
and draw all through school may well become artists in adulthood.
In 35 years of experience at the Lab School in Washington, DC, this
pattern has been evidenced again and again. The boy who sold his
mother's jewelry for 25 cents apiece grew up to be a real estate
mogul. The boys who were tinkerers, taking everything apart,
became mechanical engineers. The girl who tried to help her classmates
avoid arguing, who was teased because she was always trying to make
peace and never projected any opinion of her own, became a mediator
- and a good one at that! Numbers of very hyperactive youngsters
have turned out to be very energetic, productive entrepreneurs.
The inflexible one way kids have often become scientists who study
one problem in depth for many years or airplane controllers who
focus intensely on the task at hand. Many bright children with ADHD,
who were impulsive, very distractible, and had poor attention spans,
have grown up to be outstanding emergency health care specialists,
paramedics, and firemen. In an emergency, their adrenaline is apparently
stimulated, so they become highly focused, able to put their excellent
analytic abilities to use while doing many tasks.
Self-care should be a priority for parents of children with learning
disabilities. Parents themselves need nurturing to help nurture
their child with special needs. They need to go out and have fun
regularly. They need more sleep than other parents, for these children
sap their energy, and their condition demands help from parents
constantly. Finding supportive friends or relatives, or locating
a support group or an online parent support community can provide
a place for parents to vent frustrations and obtain valuable suggestions,
strategies, and support. Laughter is also important for parents
and the whole family. Children with learning disabilities and ADHD
need to feel that it is not the end of the world that they have
these disabilities - nuisances - and they need to laugh at some
of the nonsense they go through. Parents, too, need lightness and
humor. When parents can have fun with their children - even being
silly and laughing - and can enjoy life as much as possible together,
everyone benefits.
It is hard to be a grownup, difficult to be a parent, even more
challenging to be a parent of a child with special needs when the
parent must become the analyst, the interpreter, the problem solver,
the cheerleader, the lawyer, the psychiatrist, the spiritual advisor,
the organizer, the notetaker, the friend, companion, advocate, and
disciplinarian. Most parents use every resource they have to help
their child flourish, and yet, they worry they are not doing enough
or a good enough job. Chances are parents are doing an incredibly
fine job under difficult circumstances. Professionals need to realize
and appreciate the heavy load carried by parents of children with
learning disabilities, ADHD, and other related disorders.
References
Diamond, M. & Hopson, J. (1998). Magic trees of the mind:
How to nurture your child's intelligence, creativity, and healthy
emotions. New York: Penguin Books.
Kubler-Ross, E. (1980). Death ...the final stage of growth.
New York: Simon and Schuster.
Smith, S.L. (1991) Succeeding against the odds. New York:
Jeremy P. Tarcher/Putnam.
Smith, S.L. (1994). Different is not bad, different is the world.
Longmont, CO: Sopris West.
Smith, S.L. (1995). No easy answers. New York: Bantam.
Smith, S.L. (2001). The power of the arts: Creative strategies
for exceptional learners. Baltimore: Paul H. Brookes.
The Doctor Is In. (1988). (Video). Lebanon, NJ: Dartmouth-Hitchcock
Medical Center.
About the author: Sally L. Smith, MA, BA, is Founder and
Director, The Lab School of Washington: Head, Graduate Program,
Special Education: Learning Disabilities. American University, Washington,
DC. This article first appeared in Pediatric Nursing, May/June 2002
Volume 28/Number 3 and is reprinted here with permission.
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