Running Head: RELATIONSHIPS WHEN CHILD HAS TOURETTEÕS
SYNDROME
Do
Maternal/Paternal Child Relationships Have a Similar Pattern
When the Child has
TouretteÕs Syndrome? A Case Study.
Dr. Judy Olson
Bemidji State
University
Bemidji, MN
Presented Oxford
Roundtable
Pembroke College
March, 2003
Although I did not realize it at the time, my first experiences in parenting evolved around a child who was diagnosed with onset pervasive developmental disorder by age five. Due to his hyperactivity, he was prescribed Ritalin. Within two weeks after being given this medication, he developed motor and vocal tics and was diagnosed with TouretteÕs syndrome (TS) by the time he reached nine years of age. Subsequently, I began a teaching career in special education. During this time, I had guidance by a psychologist and two physicians who taught me a great deal about TouretteÕs syndrome (TS). In the years that followed, I continued to research TS and met individuals through my job, at meetings, and at conferences. I discovered that there were different characteristics among individuals who have a child diagnosed with TS. Through review of recent research I discovered there remains controversy in the symptoms and characteristics of an individual with TS and related disorders. I remain interested in this field and continue to be captivated by the evolving history and research in the area of TouretteÕs syndrome.
The
purpose of this study is Òto compare the perceptions of those involved in
maternal/paternal child relationships of children with TouretteÕs syndrome (TS)
to their perceptions of siblings without TS.Ó A review of the literature revealed there is no anecdotal
evidence that TS is an issue in families.
Further, there is no study that systematically examines family
relationships. This led me to ask
the question: ÒAre there differences and similarities in sibling relationships
with their mother/father? If so,
are these differences or similarities influenced by the child who has
TouretteÕs syndrome? How?Ó
The
participants in this study included one family in Minnesota who has a child
with TS. This family has three
boys who are ages 16, 13, and 10.
His mother as being very ÒgiftedÓ describes the eldest boy. The middle son has been diagnosed with
Attention Deficit Disorder (ADD).
He also has difficulty learning, but is not in a special education
program. The youngest child has
been diagnosed with TouretteÕs syndrome and has been diagnosed with an anxiety
disorder. Both of these diagnoses
were made within the last year.
However, the mother indicated that the symptoms of her youngest son have
progressed since age six. Both
father and mother work outside the home and have been married for 20 years.
I
met and interviewed this family and corresponded with them through e-mail and
through phone conversations. This
study continued over a two-month period using qualitative research methods to
study the perceptions of the relationships between family members affected with
TS and family members who were not diagnosed with TS. Methods included visits and interviews, follow-up
interviews, and the reading of published material.
The
raw data obtained from interviews and observations were then translated into
codes, which Maxwell (1996) describes as the main categorizing strategy in
qualitative research. This process
helped me to break apart data and rearrange it into theme categories. This would facilitate the comparison of
data between categories, creating possible concepts. Although I was not aware of what the theme categories were
until I had analyzed all the data, there were coding patterns that were
emerging throughout the study.
Themes and assertions developed throughout the study are:
1. Families who have members who have
been diagnosed with TS want to be considered no different than other families.
2. The relationships between
mother/father and children with and without TS may have differences and
similarities.
3. Through experience, the families
who live with TS on a daily basis deal with ÒticÓ symptoms differently during
intervals throughout the life of the child.
CHARACTERISTICS OF TouretteÕs syndrome
Many
controversies remain concerning TS and its range of clinical expression. Bruun, Cohen, and Leckman (1990) stated
a principal area of controversy concerns ÒassociatedÓ features of TS, which
have been recognized since TouretteÕs first report (obsessive compulsions,
attention difficulties, impulsivity, and personality problems).
Associated Features
Questions
are present concerning whether or not ÒassociatedÓ features are secondary to an
individualÕs tic problems, or if they reflect the same underlying
patho-biological process or are independent. The Diagnostic Statistical Manual (DSM-IV) (American Psychiatric
Association, 1994) places emphasis on defining motor and phonic tics and
identifies the following five criteria:
1. Both multiple motor and one or more
vocal tics have been present at some time during the illness, although not
necessarily concurrently. (A tic
is a sudden non-rhythmic, stereotyped motor movement or vocalization.)
2. The tics occur many times a day
(usually in bouts), nearly every day, or intermittently throughout a period of
more than a year, and during this period there was never a tic-free period of
more than three consecutive months.
3. The disturbance causes marked
distress or significant impairment in social, occupational, or other important
areas of functioning.
4. Onset is before age 18.
5. The disturbance is not due to the direct
physiological effects of substance (e.g., stimulants) or a general medical
condition.
Summary of Characteristics
Researchers
report clinical observations of TouretteÕs syndrome (TS) characteristics as far
back as the late 19th century.
The DSM-IV (American Psychiatric Association, 1994) clarifies the
syndrome with diagnostic criteria.
Research shows that in TS something is wrong with the way in which the
brain produces or uses important substances called neurotransmitters, which
control how signals are sent along the nerve cells. The neurotransmitters dopamine and serotonin have been
implicated in TS; noradremaline is thought to be the most important stimulant
(Cramer, 1999).
TouretteÕs
syndrome (TS) was diagnosed as an affliction over a hundred years ago. The syndrome was first seen as a
possession of the devil (Garelik, 1989).
Subsequent to GarelikÕs theory, it was described as a psychiatric
disease and later as a disease with organic cause. From the early 1920s through the 1960s, TS was described as
a disease with psychiatric symptoms.
From the 1970s until the 1990s it was described as a disease with a
chemical cause.
In
much of todayÕs literature TS is described as an inherited tic disorder (Merck,
2001; Murray, 1997; National Institute of Neurological Disorders and Stroke
[NINDS], 2000; Willis, 1993).
However, other recent literature indicates that only 50% to 70% of the
diagnosed cases are hereditary (Meyers, 1984). Research suggests the remainder of the cases (acquired
TouretteÕs syndrome, or Tourettism) might be related to other causes including
the environment, infectious, and psychosocial factors (Zinner, 2000). Stell, Thickbroom, and Masteglia (1995,
p. 729) related Tourettism to Òinflammatory, toxic metabolic and structural
lesions of the central gray matter of the brainstem.Ó Meyers (1984) reports Òa growing number of children have
been identified with stimulant induced TS. That is, stimulant medications commonly prescribed to
hyperactive children (e.g. Ritalin, Cylert, Dexedrin, etc.) can precipitate TS
in predisposed children, according to the Food and Drug Administration. This condition is neither degenerative
nor terminalÓ (p. 4).
Gilles
de la Tourette, a French neurologist, identified TouretteÕs syndrome (TS) in
1885. De la Tourette described the
condition as characterized by multiple muscle tics, vocal noises, and
compulsive swearing (McGruther, 1996; Goetz, Tanner, & Wilson, 1987). He clinically documented nine patients
with similar symptoms. He also
reviewed a case where Dr. Itard, in 1825, described a French noble woman who
displayed, since age seven, involuntary muscle tics that were later accompanied
by coprolalia, which is an involuntary utterance of swear words. His research and documentation gave the
disorder his name (Price, Kidd, Cohen, Pausl, & Leckman, 1985).
Gilles
de la Tourette described a tendency in patients to imitate the speech of
others, labeled echolalia. A
second tendency was called palilalia, the repeating of oneÕs own words. Thirdly, echopraxia was observed, the
mimicking of other peopleÕs actions.
The final description recognized coprolalia, which is the involuntary
utterance of swear words. This was
not recognized in every patient, but usually appeared at the beginning of the
illness and could not be regulated with disciplinary interventions (Comings,
1990).
TouretteÕs
syndrome (TS) has a variety of behavioral symptoms, particularly those
associated with attention deficit hyperactivity disorder (ADHD) and
obsessive-compulsive disorder (OCD).
It is believed these disorders can co-exist and can interfere more than
tics do with overall functioning and performance. In addition this co-existence of symptoms can lead to social
and emotional maladjustment.
Although only three to six percent of school age children have ADHD
(Abwender et al., 1998), a majority of patients with TS have symptoms of ADHD,
OCD, or both at some time during the course of their illness (Tulen, Azzilina,
Groeneveld, Passchier, & Van De Watering, 1999). For individuals with TS, the inability to pay attention is
the result not only of coexisting ADHD, but also of uncontrollable intrusions
of thoughts, or obsessive fixation of attention on irrelevant objects, or
topics of the mental concentration that are excited in an effort to suppress
tics and premonitory urges.
Scientific Attention
TouretteÕs
Syndrome (TS) had little scientific attention until the 1960s (Mehren,
1980). By 1971, the TouretteÕs
Syndrome Association was founded when a New York family had spent over $50,000
in a fruitless search for the cause of their sonÕs problem and then wrote a
letter to a local newspaper: ÒWe have exhausted out the resources in this
lonely battle,Ó they said. ÒWould
the parents of patients with this syndrome please contact us?Ó (Belson, 1977). After reading this newspaper article,
Shapiro began to study the syndrome.
His extensive research on TouretteÕs syndrome led to the book, Gilles
de la Tourette syndrome (Shapiro,
Shapiro, Bruun, & Sweet, 1978).
The book stimulated interest in the syndrome by other researchers.
Great
strides were made in the late 1970s and early 1980s in understanding the
syndrome (Bruun, 1984). More cases
were diagnosed and more effective methods of diagnosing were developed. The cumbersome name of Gilles de la
TouretteÕs syndrome gradually changed to TouretteÕs syndrome or simply the
initials TS.
The
broad clinical picture of TouretteÕs syndrome has changed little since its
first description a century ago.
Many controversies remain concerning the disorder as noted by Bruun
(1984). A principal controversy
concerns the ÒassociatedÓ features of TS, which have been recognized since the
first report of TS (obsessions, compulsions, attention difficulties,
impulsivities, and personality problems).
Questions have developed concerning whether or not the ÒassociatedÓ
features are secondary to the patientÕs tic problems, if they reflect the same
underlying patho-biological process, or if the two are independent.
Jankovic
(2001) describes the diagnosis of TS being based on a history of observation of
tics which were often supported by the presence of existing behavioral
disorders, particularly attention deficit hyperactivity disorder (ADHD) and
obsessive compulsive disorder (OCD), and a family history of similar
symptoms. Tics, the clinical
hallmark of TS, are sudden, brief, intermittent, involuntary, or semi voluntary
movements (motor tics) or sounds (phonic or vocal tics).
Genetic Investigators
Cohen
(1984) suggested that ADHD, involving a short attention span, daydreaming, poor
concentration, hyperactivity, or obsessive compulsions, might be associated
with TS. These associated features
have similar underlying genetic factors.
Eight years later, Kurlan (1992) suggested that in recent genetic
research, obsessions (recurrent persistent ideas, thoughts, images, impulses)
and compulsions (repetitive behaviors performing as rituals or in stereotyped
fashion) might be clinical manifestations of TS. Golden (1990) stated that these conditions might be two
manifestations of the same gene.
Alsobrook (2002) described evidence for a TS spectrum of symptoms that
included chronic tics and obsessive-compulsive disorder. Systematic genome linkage studies of TS
are progressing. To date, however,
no significant linkages exist, although the search has included many relevant
studies that suggest that patterns of TS and chronic tics are consistent among
families.
Genetic
studies of TS and other tic disorders have revealed how genes have been
transmitted over several generations.
Cohen, Leckman, and Tow pin (1989) reported that TS is clearly a genetic
disorder, meaning that individuals are vulnerable to the tic disorder due to
genetics. The precise type of
disorder or severity may be different from one generation to another. This vulnerability is transmitted by
either mothers or fathers and can be passed on to either sons or
daughters. If one of the parents
is a carrier or has TS, it appears that there is about a fifty-fifty chance
that an individual will receive the genetic vulnerability from that parent.
The
unusual genetic characteristic is that not everyone who inherits the genetic
vulnerability will express any of the symptoms of TS. Males will have a 99% chance of showing some clinical
expression of the gene. This
degree of expression is described as penetrance. Females will have a 70% chance of expressing any of the
symptoms of TS. Males are more
likely to have some form of expression of the genetic vulnerability due to the
higher penetrance (Bruun, 1989).
The severity of TS is also highly variable. Most individuals will not need to seek medical attention due
to the TS genetic vulnerability and wide range of forms of TS, which include
full-blown TS, chronic multiple tics, ADHD, and COD (Comings, 1990).
Due
to the variety of symptoms that may be associated with the syndrome, several
views are presented that have evolved over an extensive period. A large number of the studies
associated with TS deal with tic disorders, attention deficit disorder, and
obsessive-compulsive disorders with specific information undefined due to the
known similarities and inability to separate completed symptoms. Genetic interrelationships between
psychiatric disorders will be determined by precise genetic markers (Alsobrook,
2002).
One
primary goal of physicians is effective treatment of TouretteÕs syndrome
(TS). It is important to start
patients on a small dose of medication for monitoring side effects and to
diminish symptoms. Also, the
duration of the medication trial is important for effective symptom control,
with importance given to the medication side effects and possible withdrawal
symptoms if discontinued.
Effective Medication
Three
medications have been effective in controlling tics: Haloperidol, Clonidine,
and Pimozide. Kugler (2000) states
these medications may have serious side effects; researchers are now looking at
caciofen and botutilinum toxin used together, as well as ondansetron,
paroxetine, antibiotics, and marijuana.
Halperidol (Haldol) has been the mainstay treatment of TS. High doses
were given initially, but more effective treatment was determined by a smaller
dose. Initially the high doses benefited 80% of the patients dramatically.
However, long-term follow-up studies suggest 20% to 30% of the individuals
continue on halperidol for an extended period and suffer side effects from the
medication. Emergence of side
effects include fatigue, weight gain, dysphoria, parkinsonian symptoms, intellectual
dulling, memory problems, personality changes, feeling like a Òzombie,Ó
akathesia, school or social problems, loss of libido, and sexual
dysfunctions. Chronic uses over a
long time may also produce tardive dyskinesia, which are involuntary movements
of the mouth, lips, tongue, trunk, or limbs. The usual starting dose is .05 to
0.25mg at bedtime. Doses may
increase up to 0.25 mg per day every five to seven days if needed, to a maximum
dose of 10 mg per day.
Woods
(2000) refers to Clonidine (catapress) as another of the major drugs of choice
to treat TS. It does not however;
appear to be as effective as halperidol.
Patients show improvement in attention problems and obsessive-compulsive
behaviors. Clonidine is rapidly
eliminated from the body, making three to four doses per day necessary. Beneficial effects of the drug occur
slowly and three to four months are often necessary to evaluate its full
effectiveness. The most common
side effect is sedated feelings.
The sedated feelings, however, decrease over time. Medication is started at a low dose of
0.5 mg a day and slowly increased over several weeks up to 0.15-0.30 mg per
day. Perhaps the greatest benefit
of clonidine is that it does not have the potential of causing tardive
dyskinesia. In most successful
cases, attention, behavioral, and complex phenomena seem more responsive than
simpler tics to medical treatment.
When there is a positive response to the medication, improvement may
progressively appear over many months and up to a year or more later.
Pemozide
(orap) is a newer drug that is proving to be effective in reducing tics. It can be given once daily due to its
half-life, but in a significant number of patients it may cause
electrocardiogram change including T-wave aversion that results in calcium
blocking effects. Therefore doses
over 20 mg need to be monitored closely due to the calcium blocking effects
that cause heart attacks (Bruun & Rody, 1989; Cohen, 1984; Comings &
Comings, 1984; Comings, 1990).
Pimozide should be used only if other drugs are not effective. Doses are initiated at 1.0 mg a day and
dosage is gradually increased on clinical need to a maximum of 6.0-10.0 mg a
day for children and 20.0 mg a day for adults. Doses greater than 0.2 mg/kg or 10 mg/day are not recommended.
Pharmacological Management
The
goal for treatment is symptom reduction and not elimination of tic
symptoms. A reduction of 60% to
80% of tics may be achievable through pharmacological management. Kerbashian, Burd, Fisher, Martsolf, and
Wilkenheiser (1985) state pharmacological management is helpful in 70% to 80%
of the patients with TS. However,
tic symptoms of TS fluctuate, making treatment difficult. Symptoms of TS also decrease in late
adolescence and adulthood. This
causes a tendency for symptoms to improve. Hearle (1992) states no matter how severe tics were in
childhood, there is usually some improvement in adulthood.
Researchers
currently believe tics associated with TS are due to the over sensitivity to
the brain chemical called Dopamine.
Dopamine is a chemical that ordinarily helps transmit signal-involving
control of motor movement from one nerve cell in the brain to the next. Therefore, the treatment of tics relies
on neuroleptics with dopamine receptor blocking activity (Golden, 1990). In rare instances, it may be necessary
to combine a psycho stimulant and a neuroleptic for attention deficit
hyperactivity disorder (ADHD) and/or compulsive symptoms with TS. Clearly tics are involuntary and need
continued monitoring by physicians to prevent additional problems.
The
majority of individuals with TS who are old enough to describe their own
emotional climate will speak of Òinner tensionÓ (Bruun, 1989). Many people do not feel they have been
successfully treated until the Òinner tensionÓ has been alleviated by
medication. Emotion is not
attached to the performance of tic acts with the exception of frustration from
the inconvenience they cause.
Bruun (1989) stated 5% of his study group has had remission of TS for
one year or more. However,
individuals with TS are known to have periods of violent and angry
behavior. The symptoms are
controllable and uncontrollable for short periods. This makes treatment and potential improvement difficult. Due to this, medications and clinical
responses have created phenomena in need of further understanding by physicians
and patients. Each case should be
given a clinical trial to reduce the side effects (Alsobrook, 2002).
EDUCATIONAL
IMPLICATIONS
The
educational implications of students with TouretteÕs syndrome (TS) may involve
special education, tutoring, a self-contained classroom, a special school,
residential placement, or no special services at all. The need depends on the severity of behavioral problems
associated with TS (Bruun et al., 1990; Burd, 1992). BurdÕs research stated about 40% of children with TS have
learning disabilities (LD) while Bruun and researchers (1999) found 60% show
some sign of LD. In addition, they
also may have motor and vocal tics.
For about 60% of children with TS, educational difficulties peak between
11 and 13 years of age and then gradually decrease.
Many
students have academic difficulty, not because they cannot work, but because
they cannot complete the work (Hearle, 1992). This is often due to increased stress, which causes behavior
problems and therefore affects their performance. These behaviors may be directly related to TS. Behaviors included are: sustaining
attention, restlessness, impulsivity, hyperactivity, obsessive thinking, and
compulsive behavior leading to rituals such as tapping and touching.
Educational Needs
Perhaps
the primary task in education is to educate teachers about TS. Teachers observe students daily and may
assist with the diagnosis, treatment, and service needs of the individual. Colligan (1989) addresses motor,
phonic, and the complex symptoms of TS and has developed a teacherÕs checklist
used as a screening tool for students with TS. Once possible identification is made, a referral may be made
but does not constitute a diagnosis.
Screening is, however, a very important part of the diagnosis and
treatment. A broad view of the
disorder may help parents and physicians provide appropriate treatment which
otherwise would not be available.
The
most useful approach a teacher can use for a child with a special problem like
TS is to assist students in fostering feelings of self-worth and self-esteem
(Colligan, 1989; Wertheim, 2003).
In addition, communication is useful in building self-esteem. Listening to individual hurts and
talking with children about their embarrassments associated with this disorder
is another positive approach that can be taken to support these children. Words reflect what we think, judge,
feel, value, honor, love, hate, fear, desire, hope for, believe in, and commit
to. Therefore, the classroom setting
is established by the teacher and should encourage feelings of human kindness,
tolerance, and compassion. An
older student with TS stated at the national TS conference (1991), ÒAll I ever
wanted was for my teacher to understand and accept me. Underneath my tics and noises, IÕm a
person just like anyone else.Ó
Summary of Educational Needs
Strokes,
Brawden, Camfield, Backman, and Dooley (1988) state individuals with TouretteÕs
syndrome (TS) may be handicapped by their inability to mobilize their social
coping skills effectively. The
reason for this could be due to lack of social skills or as a direct result of
the disorder. Students with TS may
achieve success depending upon their interest, level of difficulty or
challenge, purpose, opportunity for practice of mastery, and reading level of
textbooks. Providing structure,
consistency, and routine are important when combined with school and medical
programs. Anxiety increases when
daily life is unstructured, causing increased symptoms (Hearle, 1992). Therefore, providing a multimodal
approach including home, school, and medical assistance is necessary. Providing this assistance to all
caregivers and agencies involved with the individualÕs programming is important
for success.
FAMILIES
TouretteÕs
syndrome (TS) causes a strain on families and each individual with TS (Bruun,
1984; Fulton, 1988). This strain requires support for families dealing with
this disorder. Behind the usual
movements of the individual with TS is someone who desperately wants to be
normal and who needs to be understood as a person.
Coping Strategies
Hughes
(1990), in the book, ÒRyan,Ó addressed the criticism and harsh judgments often placed on the
parent(s) of the individual with TS.
This is particularly due to the behaviors encountered by a public that
does not understand the neurological basis for the misconduct. People are quick to judge, criticize,
and blame parents who cope daily with the impact of the disability on their
family life. Parents and other
family members need to educate themselves on TouretteÕs syndrome to assist the
individual with TS in managing the disorder. It is often difficult for family members to understand
behaviors, which are beyond the control of the individual with TS and in their
view, should be controlled (Bruun, 1984).
However, most people accept this disorder when they begin to understand
it.
Tics
may be suppressed for a short time.
Doing this causes additional strain on families because individuals
suppressing their tics until returning home allow their full expression in the
home environment. In these cases,
it is helpful for some individuals with TS to be allowed a release (space) to
discharge their tics in privacy.
This may be done at work, home, and school. This will helps to prevent severe family problems with the
individual.
Another
difficulty families living with TS exhibit is being less flexible. TS changes the structure within the
family and an individual with TS often requires more direct time by family
members. Much energy and time are
required to provide for the individual with TS needs. For other children in the same family, the attention given
the child with TS may leave the others feeling unloved.
RESULTS OF THE STUDY
Erickson
(1998) identifies the review of literature as a generation of key linkages
among various items of data. The
key to a linkage is to connect many items of raw data to analogous instances of
the same phenomenon. In this case,
the difference between a family with one child and a family with more than one
child may have a distinct effect on how children and parents deal with
TouretteÕs syndrome (TS). Examples
from interviews and observations conducted during this study showed a link in
the relationship between interactions of child and parent.
General patterns for key linkages were completed at the end of my study. Since this research took place within the dynamics of one family in Minnesota, I have made an internal generalization, which has produced valid conclusions. ÒThe descriptive interpretive and theoretical validity of the conclusion all depended on the internal generalization to the case research as a whole.Ó Although I interviewed and observed each family member individually, I wanted to include a description of the entire family and not selectively focus on only one member. This allowed me not to jeopardize my research.
Themes or Patterns
Theme
number one. The family sentiments provided a family
environment of support and compassion.
This has enabled the 10-year-old child with TS to be surrounded by a
home environment that is accepting of him. Each family member expressed verbal acceptance of his or her
10-year-old son/brother with T).
> His
14-year-old brother stated, ÒI feel bad for my brother who has to deal with it
every day.Ó And ÒI wrote a book and dedicated it to my brother because he has
to live with TS.Ó
> His
16-year-old brother stated, ÒI donÕt really notice it, but on occassion you can
hear it, you get use to it.Ó and ÒIf you ignore it, it goes away.Ó
> His
father stated, ÒTS has not been a problem.Ó ÒHe does not really have needs and
is quiet compared to his 14-year-old brother.Ó Lastly he stated, ÒTS is not a
disability. I think I did things like him when I was younger.Ó
> His
mother stated, ÒWe have no concerns with his learning.Ó ÒTS is not a disability
for him.Ó ÒIf he cannot sleep, I give him things to play with (like a baseball
computer game in bed) to help him relax.Ó
> The
10-year-old with TS said, ÒMy mother is easy to talk to.Ó and ÒMy dad does not
treat me any different. ItÕs my brother (14-year-old) who is always in trouble
for something. It does not affect me.Ó and finally, ÒI would not like to ÔbeÕ
any of my brothers.Ó
It
is apparent that the family was able to provide a setting for the children
which supported all of them despite any specific needs. The family did not
recognize TS as a disability or as a ÒdifferenceÓ that has caused undue
hardships to the family interactions. This family does not see themselves any
differently than other families. The family members all had a sense of humor
and appeared to enjoy my visits. I felt their acceptance of me was an asset to
this research.
Theme number
two. There is a pattern suggesting there are
similarities and differences between the relationship of the 10-year-old child
with TS to his father and to his mother.
While interviewing, it was apparent the parentsÕ perceptions of the
child were very different. This
was shown through their interactions with the TS child. However, the interactions between the
other children without TS and their parents were similar.
Similarities:
> His
father stated during an interview, ÒTS has not been a problemÓ and ÒHe does
pretty well in school and he loves sports, especially baseball.Ó and lastly,
ÒMy middle son is our challenge.Ó
> His
mother stated during an interview, ÒWe do not see his diagnosis with TS as a
disability, and he does very well in school.Ó and ÒWe have not had problems
with him. It is our middle son with attention deficit disorder, which has
caused me problems; it seems like he is always in trouble.Ó
> The
oldest son stated during an interview, ÒWe all talk to each other, but I
problably talk to my parents more because I am the oldest.Ó
> The
middle son stated during an interview, ÒPeople with TS make faces and noises.
They canÕt help it. They are nice people.Ó and ÒI play baseball with my brother
a lot. He is good at it.Ó
> The
10-year-old with TS said, ÒMy mother is easy to talk toÓ and ÒMy dad does not
treat me any different.Ó
Differences:
> The
mother stated during an interview that ÒHis (10-year-old) father and I do not
always agree on discipline for him.Ó and ÒI think his father is too hard on him
when he canÕt stop. When he cannot sleep, he raises his voice and tells him it
will go away. I help him when he hears voices and is frightened by giving him a
game to play in bed under the covers.Ó
> His
mother also stated, ÒI have seen a progression in my youngest sonÕs needs since
he was six years old. He and I wanted to find out why he was doing some of the things he was. He would grasp his
crutch and not quit. I feel like crying when he does that, and I canÕt get him
to stop.Ó
> His
father stated during an interview, ÒMy youngest son does not have any problems.
He blinks his eyes once in a while and plays with his belt or elastic when
playing basketball; otherwise his only problem is his allergies, but he takes
medicine for them.Ó
> The
middle son stated during an interview, ÒI fight with him sometimes. When I ask
him to stop it, he gets worse and that bothers me.Ó He also stated, ÒTouretteÕs
is a disability because it can make me embarrassed.Ó
There
are interactions that present differences and similarities within the
family. The research reveals no
distinguishing differences that indicate a difference between children and
parents due to the TouretteÕs syndrome.
There appears to be a difference of opinion on what is a concern and
what is not a concern regarding the child with TS. While the mother is aware of specific needs the child with
TS has, the father does not ÒfeelÓ any needs are apparent. Therefore, it would seem possible for
the interaction between the child with TS and the mother and father to be quite
different.
In
contrast, the child with attention deficit disorder appears to cause concern for
the parents. They both agree that
he has caused problems within the family due to his behaviors. The parents agree he is the one that is
always in trouble, but from the kind of ÒtroubleÓ the child has experienced, it
is apparent the problems have been mutually understood.
Theme number three.
The family reported the
ÒticsÓ displayed by their son and brother is not a current problem. They have reported no differences in
the way they perceive him before or after he was diagnosed with TouretteÕs
syndrome. Since his diagnosis was
made, there have been no differences in how they interact with him. The family appears to support
differences and puts their interests into sports activities.
> The
father stated, ÒAll the boys play ball and they are pretty good at it. The
oldest plays football, the middle son plays baseball and basketball, and the
youngest plays soccer, basketball, and baseball.Ó
> The
mother stated, ÒWe keep very busy with sports. We all play some sort of
ball. I often drive the bus to
sporting events. This is an
opportunity for me to see the boys play.Ó
> The
oldest boy stated, ÒI would change the stereotype society has of TS. My brother
is good at sports and he only wanted to know what was wrong with himself.Ó
> The
middle son stated, ÒI didnÕt know anything about TS until my brother had it. He
is good at all the sports. I play
only baseball and basketball. I
want to tell everyone that he is a nice person even if he blinks his eyes a
lot.Ó
> The
10-year-old with TS stated, ÒI love baseball and I am good at it, too.
TouretteÕs syndrome does not affect me.Ó
The
pattern displayed by the family is that of acceptance and love. The family is very busy between school,
work, and sports. These activities
assist the family in accepting each member for who they are. The apparent ÒticsÓ do not affect the
familyÕs interaction with the 10-year-old, nor do they affect how he is
perceived as part of their family while involved in sports activities. Although his mother describes bedtime
as a problem for him, it has not changed how the family unit interacts with
him.
The conclusions from this study are
defined in the relationships of the themes presented in the research. Because this research lasted only over
a period of two months, it is possible this study has inadequate information to
support further study. However, it
has created the opportunity for understanding the interactions among family
members when a child has been diagnosed with TouretteÕs syndrome (TS). From this experience parents can begin
to understand how and why interactions between family members can deviate from
usual patterns due to behaviors that are not easily understood.
Three themes were
produced in this study. They are
as follows:
1. The family sentiments provided a
family environment of support and compassion.
2. There is a pattern suggesting there
are similarities and differences between the relationship of the 10-year-old
child with TS to his father and to his mother.
3. The family reported the ÒticsÓ
displayed by their son and brothers are not a current problem. They have reported no differences in
the way they perceived him before or in the way they have perceived him since
he was diagnosed with TS.
By
providing a family environment of support and compassion, one might make the
inference those parents and family members can impact the success of an
individual who has TS. Although
the family members reported feelings of compassion towards the member of the
family who has TS, their actions did not portray sympathetic actions, but
rather those of understanding and acceptance. When the family participated in sports events, he was an
essential part of the activity. As
a family unit, they expressed hope that he could stop what he was doing when he
did something repeatedly, but they still did not accept his behavior as ÒbadÓ
or troublesome.
Although
his parents shared mutual respect for their child, there were some apparent
similarities and differences in their relationship to their child with TS. Both parents agreed he had less
behavioral concerns than his older 14-year-old brother did.
The
main difference in the parentsÕ relationship to the child dealt with the method
of disciplining him. When the
child would go to bed and could not sleep, the father was said to be Òtoo hardÓ
on him. When the child could not
stop doing what he was doing, the father also raised his voice at him. The father also stated during an
interview that he (the 10-year-old) did not have any problems with TS. The only problems his son had were with
allergies, and he took medication for them.
The
mother felt more empathy when the child could not sleep because of nightmares;
she would provide an activity for him to keep occupied with in an effort to
help him fall asleep. His mother also stated he would grasp his
crutch and not quit. She felt like crying when he did that and she could not
get him to stop.
Although
these different behavior management styles have not apparently mired the
10-year-oldÕs interactions with his parents, he does display a higher comfort
with his mother when he describes her willingness to talk to him. Even though
she also expressed frustration with his inability to stop a behavior he had
started, the familyÕs ability to talk about the situation will provide ongoing
support during family interactions. The evidence is not suggesting one parent
has stronger interactions with the child, but rather the interaction of
listening may be more helpful when meeting the childÕs needs while displaying
symptoms of TS.
It
is apparent that this study cannot be generalized to other families with
children who have TS. Rather, it brings to our attention the need for continued
interaction between parents and family members regarding the management of
behaviors related to TS. The consistency of interaction between child and
parent and the modeling of appropriate behavior is essential to the success of
the individual with TS. This modeling of acceptable behavior and consistency
during intervention will allow the child and family to grow and support one
another through their experiences with TouretteÕs syndrome.
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