Worry. Sadness. Fear. Guilt.
Helplessness. Anger. Confusion. Disappointment.
More worry.
Parenting has always encompassed difficult periods—times when parents
feel concerned and confused—sleepless nights when they worry about how
well they are fulfilling their responsibilities to their children. Raising
a disabled child "ups the ante." Meeting the complex needs of
the child with a disability can be extraordinarily difficult, frustrating,
emotionally draining—and expensive!
Parents of disabled children understand one crucial fact—that only by
obtaining an appropriate education will my child have a real opportunity
to lead a fulfilling, productive life.
Unfortunately, statistics about the outcomes of special education
programs will not alleviate your concerns.
Researchers have found that most special education programs fail to
confer adequate educational benefit to many of the youngsters they are
designed to serve. The statistics are sobering:
74% of children who are unsuccessful readers in the third grade are
still unsuccessful readers in the ninth grade. (Journal
of Child Neurology, January, 1995)
Only 52% of students identified with learning disabilities will
actually graduate with a high school diploma. Learning disabled students
drop out of high school at more than twice the rate of their
non-disabled peers. (Congressional Quarterly Researcher,
December, 1993)
At least 50% of juvenile delinquents have undiagnosed, untreated
learning disabilities. (National Center for State Courts
and the Educational Testing Service, 1977)
31% of adolescents with learning disabilities will be arrested within
five years of leaving high school. (National Transition
Longitudinal Study, 1991)
Up to 60% of adolescents who receive treatment for substance abuse
disorders have learning disabilities (Hazelden
Foundation, Minnesota, 1992)
62% of learning disabled students were unemployed one year after
graduation. (National Longitudinal Transition Study,
1991)
A meaningful education will help turn these figures around.
Emotions: Energy Source or Achilles Heel?
"The pure rage that stems from an unredressed injury can be more
fearsome than that produced by the original wrong." (Gerry Spence,
respected attorney-litigator and commentator on civil rights in America)
John sat on the couch in my office. His face reddened and his fists
clenched as he talked about his son Chris and his contacts with the
teachers and administrators at Chris’s school:
"My son is 13 years old and he still can’t add simple numbers.
He can’t add 15 and 9. He can’t read either, and he’s been in
special ed since he was six years old.
This year they put him in regular classes with some sort of
collaborative teacher-they say that’s how they teach LD kids at his
school, and that’s all they can do. And now he’s failing everything—everything!
Last grading period—four F’s and one D. The only thing he’s
passing is Science."
As I sifted through several inches of disorganized documents that John
brought to the meeting, John continued:
"And when I complained that he isn’t learning, they told me it’s
my fault because I’m not making him do homework! Do you know what a
nightmare homework is? He’s exhausted when he comes home from school—where
he hasn’t learned anything—then he has to spend two or three hours
doing papers. It’s a nightmare. A real nightmare . . ."
I continued to skim through the documents—old standardized tests,
letters from Chris’ teachers, school papers, report cards, IEPs from the
first grade to the present—all mixed up. No current psychological or
educational testing. John’s voice raised in anger:
"Pam, you don’t understand. They lie. They blame kids for not
learning when they are not teaching . . . And they are stupid. They can’t
teach, they can’t do anything. They are morons! And I told the
principal that when I met with him last week . . ."
Tragically, John’s case is not an isolated situation. This father’s
frustrations and fears had driven him to explode and demean school
personnel. His reaction—an angry outburst—gave him short-term relief
from his intense feelings of frustration. Did his explosion and insults
lead to the development of a more appropriate educational program for his
son? Of course not. Will it be more difficult for John to work effectively
with school personnel in the future? Definitely. Will Chris be the
ultimate loser? You bet!
The intense emotions experienced by parents often become their
"Achilles heel" as they attempt to obtain an appropriate
education for their child. When the local school system fails to provide
the child with that critical "special" educational experience or
offers "too little, too late," many parents are shocked and
angry.
These parents feel betrayed by the one system which they had trusted to
help with the difficult task of educating their handicapped child. Once
lost, trust is hard to regain. As Gordon, the father of a fourteen year
old learning disabled boy erroneously diagnosed by the school district as
"seriously emotionally disturbed," explained:
"One of the great tragedies of parental disillusionment is that
even if we finally find a good educational program, we know that our
child has been damaged by people within the school system. We don’t
know how severe or enduring the damage will be. The feelings of betrayal
are often so strong and bitter that there will never be any trust by the
parents."
Grieving: The Loss of the "Perfect Child"
Children enter our lives with excitement, anticipation and joy. We have
high hopes and great expectations for this new life. How do we process the
new reality-that this much-loved child has a serious "life
disability?" Or that this disability may negatively affect our child’s
ability to live a productive, satisfying, independent life? Parents must
mourn the loss of the "perfect child" before they can become
effective advocates.
Amy is a seven-year-old child who was diagnosed with autism.
Her mother Karen recalled:
"As parents, we are at an enormous disadvantage. When we
discover that our child is disabled, we are in shock and grieving. We
don’t know the laws or even that there are laws. We don’t know about
the IDEA. We don’t know that we have any rights. We just trust for the
first couple of years. Then something happens which causes us to become
a little suspicious and we begin to look into things . . . and the worms
come pouring out of the woodwork."
Mourning is the natural, necessary and healthy process that begins when
you learn that your child has a disability. If not handled appropriately,
the mourning process can continue for years. You need to come to terms
with your loss and mourn the hopes and dreams that may never be realized.
In common with other major losses, mourning encompasses predictable
emotional stages. Typically, parents move back and forth between these
stages, especially in the early months and years following their child’s
diagnosis.
Shock and Denial
"I don’t believe it. He is just a late bloomer. All the boys in
our family had to repeat grades. And look at us-we did okay!"
Millions of adults have undiagnosed, untreated learning disabilities
and attention deficit problems. If they are fortunate, they find a
"good fit" in their choice of work and are successful, despite
their disabilities. Yet, most learning disabled adults lead lives that are
deeply affected by sadness, disappointment and frustration.
Undetected, unremediated learning disabilities are causally connected
to many other serious life problems—from juvenile delinquency and
substance abuse to severe marital problems, domestic violence, and chronic
unemployment. Typically, learning disabled adults develop negative views
of themselves as lazy or stupid—or worse.
Most of these adults—numbering in the millions—have developed a
strong, pervasive sense of having failed. From their perspective, they
failed to live up to their own expectations and the expectations of
others. Their negative view of the self and their identity as a failure
permeate all areas of life, leading to interpersonal, socio-emotional,
marital, vocational, and legal problems.
If parents continue to deny the seriousness of their child’s
problems, these problems will not be appropriately treated, the child will
not receive appropriate educational remediation—and the child is very
much at risk for becoming another tragic statistic.
Unfortunately, parents who are in denial may find willing
co-conspirators within the educational system. In some school districts,
teachers are under a gag order by school administrators, forbidden to
share their concerns about your child or to provide you with the
information that you need about the child’s lack of progress. In other
districts, school administrators who have the lowest referral rates for
special education services receive special commendation.
Anger
"I just wonder how the psychologists and special education
directors who so systematically work to deny educational services to our
kids can face themselves in the mirror every morning . . ."
Intense feelings must find an outlet, and parents of disabled children
have lots of intense feelings—including anger. Typically, these parents
also feel frightened, helpless and out-of-control. To assert some sense of
control, they may attempt to assign blame for their child’s problems—onto
school personnel, the child, their partner, themselves, God, bad luck, or
fate.
To avoid feelings of guilt and sadness, some parents externalize their
emotions, blaming or faulting someone or something for the problems their
child is experiencing. Sometimes this blame is warranted. As we will see
in Mariah’s case, when parents believe they have been betrayed by the
educators in whom they placed their trust, their anger and sense of
personal outrage can be intense.
Mariah is a nine year old child with at least average intellectual
ability. When she was two years old, a brain tumor was detected. Over a
period of years, Mariah endured painful surgeries, chemotherapy and
radiation therapy. These treatments saved her life, but left her with
multiple handicapping conditions, including learning disabilities,
orthopedic and speech problems, and an attention deficit disorder.
Mariah’s school district offered to provide a minimal level of
special education services to this child. First, by using a
"discrepancy formula," they refused to provide any special
education services aimed at remediating her learning disabilities,
claiming that she had not fallen far enough behind to qualify for
services.
Later, using a novel argument, they argued that Mariah was not eligible
for services under a "Traumatic Brain Injury" classification
because her brain injury was caused by a tumor, not "acquired"
from an external injury. Not surprisingly, Mariah’s parents were shocked
and angry.
Mariah’s mother, Elizabeth, spoke of her two year battle to secure
appropriate special education services for her daughter:
"I wake up in the morning and begin making phone calls. The
laundry sits along with other relics of normal life. The school district
is so good at what they do-setting up roadblocks and denying educational
services-that it is consuming my life just to get an IEP for my
daughter.
I didn’t know how the system worked for the first couple of years.
I just kept going from place to place, getting evaluations which I gave
to the school. I thought that once they understood what Mariah needed,
that would be it. Was I ever wrong! All those evaluations were just
"filed." Period!"
Elizabeth’s soft voice held a strong undercurrent of contempt:
"When I sit and think about the undeniable fact that my child
was not provided with an appropriate education for years, not as a
result of "blundering" or "poor judgment," but
intentionally, and that we were manipulated by intentional double-talk,
my blood just boils.
Why is this type of thing different from any other scam? If school
district personnel deprive children of their legal rights through the
use of double-talk, flimflam, fraud, deception . . . this should be a
crime under the law, and they should be held personally responsible for
their actions!"
Some parents are angry about the hard choices—and the sacrifices—that
must be made. That these choices and sacrifices are often difficult, is
attested to by comments made by the father of two disabled youngsters:
"Both parents being able to work in their fields, or one having
to stay home because the children’s needs are so great.
Having to choose between one kid getting mental health care, or the
other kid getting speech therapy.
Being in crippling debt, or merely being in tremendous debt.
Losing a retirement fund that was built up over 24 years or losing a
college fund that was built up over 17 years.
Having to choose between a psychiatrist or a psychologist solely on
the basis of cost.
Having to choose between marital therapy for the parents or
bankruptcy.
Tough choices."
Sadness and Guilt
Other guilt-ridden parents internalize their feelings, turning their
anger inward and blaming themselves for the child’s problems. Anger
turned inward leads to depression. And depression, with attendant feelings
of inadequacy, helplessness and hopelessness, leads to emotional
withdrawal.
A tearful young mother sat across from me in the office. Kim’s nine
year old son Justin had been diagnosed with a learning disability in
reading and language (i.e. dyslexia) and attention deficit hyperactivity
disorder (ADHD) nearly three years ago. Now in the fourth grade, Justin
continues to have great difficulty reading, despite having received three
years of special education services.
Justin’s temper outbursts at home had intensified—the family
dreaded the frequent rages during which he turned his anger on himself and
family members. His mother was overcome with feelings of guilt, inadequacy
and depression. She saw a psychiatrist who had placed her on
antidepressant medication.
Kim had experienced similar problems in school. She reversed letters
and syllables and "read from right to left" for many years. As
an adult, her dyslexia was diagnosed. Kim’s school failures had induced
in her a pervasive sense of shame. Unlike her son, she became overtly
withdrawn and depressed.
Kim’s own complex blend of personal history and emotions had created
a compulsive need to apologize-for taking up my time, for not
understanding what various educational tests measured, for being
depressed, for being a "bad Mom."
Based on the results of Justin’s earlier evaluations, which clearly
identified his dyslexia, coupled with his ongoing inability to decode
words, I urged Kim to contact her son’s school. Justin was in need of a
more intensive program of remediation.
Kim requested the meeting, which was also attended by the principal.
That afternoon, my answering machine contained a lengthy message from
Kim:
"Pam, I had the meeting. They were really mad at me. Justin’s
LD teacher kept telling me that she gave Justin extra time and that she
worked really hard with him. She even permits him to sit in the front of
the room. I felt bad. I told her that I really did appreciate what she
was doing for Justin. I told her over and over that I knew she was doing
everything she could for him. I think I need to meet with her again . .
.
When I told them that you thought Justin needed more testing about
his dyslexia, they got upset. They asked me why I was talking with you.
It’s like they felt that I didn’t trust them or something.
When I tried to talk about Justin’s dyslexia, the principal sat
back in his chair and rolled his eyes. The principal and the LD teacher
started talking and laughed. I know they were angry. I wanted them to
know that I really appreciated everything they were doing for Justin, it
wasn’t that I was ungrateful but . . ."
Remember John and his son Chris, earlier in this article? John’s
inability to control his anger and frustration caused him to react in a
way that would have negative consequences for his son Chris. Like John,
Kim approached the school to request additional services for her child.
What are your thoughts about Kim’s approach?
Like John, Kim’s emotions are her Achilles heel. Unlike John, Kim is
a conflict-avoider—polite, unassertive, afraid of authority figures, and
terrified that she will anger or offend others. By being conciliatory, is
Kim functioning as an effective advocate for her son? Are the school
personnel at Justin’s school likely to accede to her request for
additional testing? Has Kim persuaded the school officials to develop a
more intensive program to effectively remediate Justin’s dyslexia?
Sadness is a normal part of the mourning process. Guilt, sadness and
regret often merge into a painful tangle of emotions. In Justin’s case,
his mother’s feelings of shame about her own learning disabilities and
her lack of self confidence, combined with her pattern of conflict
avoidance, made her an ineffective advocate for her child.
Acceptance and Emotional Resolution
Many parents try to avoid experiencing feelings of sadness and regret,
preferring to remain angry. Given the pain inherent in sadness and regret,
this is an understandable impulse. Yet, it is essential to mourn the loss
of the "perfect child." Mourning the loss is not the same as
repudiating your child or finding him less worthy of your love. Instead,
it is part of the process of acceptance and resolution which will free you
to move on.
The Intimidation Factor and Transference
At a parent support group meeting, I listened to the following exchange
between two fathers. Both men had children with learning and attentional
problems.
The first father, a businessman who specialized in marketing and sales
confessed:
"I always feel anxious and intimidated when I go to school for a
meeting about my daughter. I start to feel anxious before I even get
there. By the time I get to the parking lot, my stomach is in knots. I
feel completely intimidated. When they ask me what I think, I don’t
know what to say. Being speechless is usually not a problem for me!
I know my daughter is not learning. I know she is falling further and
further behind. I know that I’m very worried about her, but I don’t
know exactly what they need to do differently. I’m not a teacher. I
don’t know what to say—aren’t they supposed to be the
experts?"
The other father, a respected physician and father of two handicapped
kids, responded:
"Boy! Do I know that feeling well! There is something about the
process-this team business where you sit around a table and it’s just
you, the parent, on one side, and six or seven school people on the
other. I always feel intimidated when I go to a meeting at the school.
I feel like I did when I was about eight years old and had to go to
the principal’s office. I was in big trouble then and I feel like I am
in big trouble now!"
People are intimidated in different situations and contexts. Many of
the decisions made for handicapped children are made by "teams"
or committees. It is not unusual for IEP meetings to include five or six—or
more—school district representatives—and one parent. In addition,
these meetings are held at the school—unfamiliar ground for most
parents. Given these dynamics, it is not surprising that most parents feel
intimidated.
And how do people respond when they feel intimidated? Some respond with
anger and defensiveness. Others wilt under the pressure.
If the parent also had difficulties in school, old negative memories
and emotional reactions will often color his or her present feelings about
schools, teachers, authority figures, and school meetings. The
transference of emotions from past situations to present circumstances
occurs in all areas of our lives. This transference can be positive or
negative.
Remember Kim? Because her dyslexia was undiagnosed and unremediated,
her personal experiences in school were predominantly negative. These past
experiences led to negative expectations-which contributed to her fearful,
conciliatory responses toward the educational "experts" at her
son’s school.
However, if the parent experienced school as a helpful, supportive
place, then positive feelings and expectations will tend to transfer to
the current situation. These parents expect that the school will be a
helpful environment for their handicapped children.
Getting "Stuck"
Because the mourning process involves intensely painful emotions, many
parents try to avoid it by minimizing or denying their feelings. Others
get "stuck" in one phase—and fail to complete the process.
Like people who see themselves as "victims" of divorce, these
parents remain angry, bitter, guilty, or depressed for years—or for
life. Mired in negative emotions, they accomplish little of value for
their child. You must not let this happen to you.
Failure to deal with reality causes other problems. As we have seen,
when parents remain in denial and refuse to acknowledge that the child’s
problems are serious, their child will not receive necessary educational
services. Parents who obsess about the transgressions perpetrated by the
school system often "burn out" without achieving anything that
is of true value to the child.
However, there is another serious danger that many parents of disabled
children face. Little has been written about this danger in the parenting
and advocacy literature but it is of great concern.
Overprotectiveness
Attempting to suppress feelings of personal guilt and external blame,
many parents become overprotective of their child. Unable to protect the
child from the disabling condition, they attempt to protect him from other
difficult or challenging areas of life.
The development of overprotectiveness, fueled by pity and guilt, may be
the biggest mistake that any parent can make in raising a child with a
disability. Overprotective parents unwittingly create chronic dependency
and "learned helplessness" in their children—a mindset that
will often persist throughout that individual’s life.
These children grow up to be adults who believe that they "can’t"
do things. Let’s look at the case of Paul. Paul is a young man who was
diagnosed with learning disabilities while a young teen. He received
special education assistance and finally graduated from high school.
After being fired from dozens of jobs over a period of years, Paul
enrolled in a community college where he took a night course. To his
surprise, he was successful.
Encouraged by his unexpected success, Paul returned to college and,
after several years of part-time study, graduated from a four year
university with a degree in special education. Paul had decided to become
a special education teacher.
Paul’s teaching career had its ups and downs. He spent several fairly
successful years in a small rural school system. Open about his learning
disabilities, he asked for and received help from other teachers.
Eventually, Paul obtained a job in the large urban school district where
he had received his own education. He would be teaching elementary school
children who had learning disabilities. He had achieved his dream.
But Paul had other problems which caused his dream to self-destruct.
Pampered by over-protective parents, Paul had developed a personality
style that was characterized by helplessness and a stubborn insistence on
getting his way, coupled with a lack of empathy and an inability to see
the perspectives of others. Paul firmly believed that his learning
disability meant that he could not do certain things.
In his new teaching position, Paul was expected to teach children all
academic skills - from reading and spelling to math. Paul’s learning
disability was in the area of math. Despite his disability, the principal
expected him to teach math. Paul refused. He also refused to accept help
from an experienced LD teacher who offered to help him learn the necessary
math skills. Paul’s response was, "You don’t understand. I’m
learning disabled. I can’t do math."
Eventually, Paul was terminated from his position. He moved back home
with his elderly parents. His dream was dead.
Becoming an Advocate: Becoming an Expert
There is an antidote to feelings of helplessness, hopelessness and
despair.
As you come full circle, having experienced the denial, anger, guilt,
and sadness that are the inevitable reactions of the loving parent, you
will find that your emotions can be freed to use in a positive search for
information and for solutions to the problems you face. You must transform
your emotions into energy - the battle to obtain a good education for your
child will be long and arduous. You need to conserve your strength and
focus on what is important - obtaining an appropriate education for your
child.
Becoming an advocate means becoming an expert. In the course of your
journey, you need to learn all that you can about your child’s
particular disabling condition and how this condition can be remediated.
You must learn about evaluations — psychological, educational,
neuropsychological, psychiatric neurological — and what these
evaluations measure. Depending upon your child’s unique problems, you
may also need to learn about speech-language, physical therapy, and
occupational therapy evaluations too.
In your advocacy journey, you will need two things-accurate information
and support. This journey is more difficult if undertaken alone.
It is essential that you join the major disabilities groups, including
the Learning Disabilities Association of America (LDAA), The International
(Orton) Dyslexia Society (IDS), and Children and Adults with Attention
Deficit Disorder (ChADD). If your child’s disabling condition is in
another area (i.e. autism, mental retardation), then you also need to join
the advocacy organization that represents this group. Parent memberships
in the three organizations listed above will cost about $100.00 annually.
Many parents ask why we require them to take this action (and incur this
expense). The answer is a simple one.
Each of these three groups represents a rich source of information and
support that is invaluable to parents, regardless of the child’s
handicapping condition. Although your child may not have been diagnosed
with dyslexia, the International Orton Dyslexia Society is a pioneer in
areas related to neurological research and educational methodology. At
least seventy-five percent of its members are professionals involved in
the field of remediating language/ learning disorders. The information
that you will obtain from IDS will be enormously helpful if your child has
any type of learning or attention deficit problem.
The Learning Disabilities Association of America is a national
organization devoted to defining and finding solutions for the broad
spectrum of learning problems.
And ChADD, a relative newcomer in the field, is the leading
organization serving people with ADD/ADHD. Each of these groups publishes
newsletters with information that will put you on the "cutting
edge" of what is known in the field.
Hours before an Eligibility meeting, a young mother wrote us the
following note which we received by e-mail:
"I am not nervous anymore. I am going into this hearing with a
two-foot tall stack of reports and notes we have kept over the years.
I have copies of the law and regulations that are highlighted and
dog-eared. We have your articles-and a very firm resolve that we will
leave no stone unturned in seeing that Joy gets the free and appropriate
education necessary for her to become a happy, competent adult.
We are not going to bang on the table. We are not going to threaten
or yell. We are going to calmly listen to what they have to offer Joy,
and tell them that we will do whatever it takes to see that this child
receives the education that she is entitled to.
I dare them to deny her. If they do, we will need your help and I
pray if you can’t help us, you can steer us to someone who can. But, I
am not nervous any longer.
I am determined."
These stories can have happy endings. Matt is a sixteen year old who
has dyslexia. This is how his parents described their son’s progress
over the past two years:
"Matt is now well on his way to having a successful educational
experience. His "Learning Difference" is no longer disabling -
he has acquired the skills to read and write. He is, at long last,
beginning to hone and develop these very necessary skills.
We are so proud of his success and efforts. It is hard to believe
that this 16 year old young man was reading at the 3.8 grade level just
two years ago. Testing completed a few months ago found that at the
beginning of the tenth grade, Matt was reading at the 12.4 grade level!
And, as of his last report card, he was on the Dean’s list. He is a
competent, confident, literate, academically successful young man."
We asked Matt’s parents how they would describe their own advocacy
journey to other parents:
"BELIEVING that our son COULD overcome the obstacles to learning
to read, write, manipulate numbers, "organize" his thoughts
and actions.
SEARCHING for and FINDING the correct educational approach that could
remediate and help him to overcome his dyslexia (NOT merely teach him to
"COPE") and a lot of HARD WORK on Matt’s part.
Parents must be patient and determined. There is no "quick
fix" or "silver bullet." "
Remember—your emotions will be your worst enemy or your greatest
ally. If you are thinking of counseling, obtain it for yourself. Learn to
use your emotions as a powerful driving force.
Understand that pity is a negative emotion—it is always destructive.
Our children can accept some blows from the system and survive.
Ultimately, children grow and flourish by facing adversity—if they know
that we understand them, support them, and believe in them!
