While
my first TS convention exposure was phenomenal in every facet, there
was one particular aspect which repeatedly overwhelmed me almost to
the point of tears. You, the parents. Parents, taking the time and money
out of their schedules to not only attend the annual conference, but
to regularly attend meetings throughout the remainder of the year. Parents,
taking leaves from their legal practices to better understand and work
with their Tourettic children. Parents, participating in the TSFC at
both the national and chapter levels, writing articles, and raising
money for, and awareness of, the TSFC. Remarkable. Positively extraordinary.
Reader, if you are a parent, take a moment to put down this article
and applaud yourself. Allow yourself to be enveloped in a warm glow
of positive accomplishment because you ARE making an incalculable difference.
Simply by being a part of the TSFC and educating yourself about TS is
having an ENORMOUS impact in the life of your child. I want to suggest
to you hat the greates gift that you have bestowed upon your TS child
is providing him/her with an environment rich in information about TS.
I have no doubt that it may be difficult for some of you to see that:
after all, your child(ren) may at this very moment be systematically
dismantling his/her room. But consider this: because TS is a
known quantity within your household, you don't know what life would
be like (for either your child or you) if it wasn't. This article
is intended to show you how much you, and your education in TS, has
helped your child(ren).
Parental acceptance and understanding cannot be overemphasized or over-appreciated:
they are crucial in the development of your TS child(ren)'s self-worth
and esteem both as direct influences, and as mediators. First, directly:
Charles Cooley spoke of the "looking-glass self", which consisted
of a.) the imagination of our appearance to the other person, b.) the
imagination of his judgment, and c.) some sort of self-feeling. In essence,
how we feel about ourselves is largely determined by our perceptions
of others' reactions to us. As the earliest and most prominent figures
in a child's life, parents are integral to an individual's earliest
foundations of self-concept. Many researchers since have maintained
that one's relationship with one's parents is the single most
important aspect in the development of self-worth. Simply by anticipating,
recognizing, and accepting the Tourette's in your child(ren) you
are implicitly communicating to him/her that they are a person worthy
of positive regard and respect, regrdless of their disorder. This message
will become an ingrained part of their persona as they mature, thanks
to you.
Parents have many indirect effects on their child(ren)'s self-worth
as well; the educated parent makes those indirect influences worthy
ones. Self-acceptance, good social conduct, and good self-control over
negative affect have all been found to be fundamental to high esteem.
All three of these life facets can be severely compromised by TS; self-acceptance
is low because (s)he is different and may not fully understand those
differences, and social conduct and self-control is abysmal due to impulse-control
and disinhibition problems.
Parents with an education in what TS is possess a special tolerance
for the condition. They may help to offset all of these accrued negatives:
by displaying their love and understanding for their child, self-acceptance
is improved. Knowing that the TS may be hindering social interactions
(both because TS'ers have difficulties picking up nonverbal subtleties,
and because the child is keeping social contact to a minimum) the learned
parent is there to help explicitly teach proper modes of interchange.
Finally, by providing the compassion and respect which is absent from
many other environments in their child(ren)'s life, these parents
can reduce the child(ren)'s anxiety levels, which then starves the
TS for "fuel" and ironically minimizes the disinhibition and
impulse problems which they are displaying understanding for in the
first place.
Negative self-worth, which the educated parent has played a vital role
in thwarting, can lead to a whole host of problems which could compound
and exacerbate the existing TS in your child: research says that children
with negative self-worth take on more responsibility for failures in
their lives (for example, "I can't stop making these noises
because I'm a bad person"), they are unable to discount the
importance of success where they are not performing well (for example
the child might persist in a futile attempt at making a certain group
of peers his/her friends rather than gravitating towards a group of
peers who DO like him/her), and they overexaggerate their incompetencies
(for example, one poor test mark becomes, "I'm so stupid!!
I can't do ANYTHING right!). The picture gets even more grim: poor
self-worth then leads to negative affect (anger, resentment, frustration,
depression), and low motivation ("Well, since I'm just so stupid
there's no point in me even TRYING at school"). No doubt you've
seen soe of your child in what I've just described. This is no surprise
-- TS is brutally obvious to others, frustratingly omnipresent, and
difficult to reconcile. Imagine how much worse off (s)he would have
been without you.
When I was growing up, my own parents were not familiar with TS. I tried
very hard to suppress and/or mask my tics around them, but was still
on occasion grilled concerning my "attention-seeking" behaviours,
which led me to try that much harder to hide my "secret".
I do not harbour any grudges against my parents - I recognize that they
did not know better. However, I can assure you all that this obvious
parental disapproval was crippling to my self-image: what seemed to
them a minor, annoying game to be challenged was in actuality a definitive
aspect of who I was, which was being rejected. It led to near-permanent
rifts in our relationship which will take many years and many baby-steps
to mend fully.
So parental education bolsters parental tolerance of their TS children,
which in turn can help maximize the TS child(ren)'s esteem. Parental
education in TS can also help one to know how to most efficiently and
effectively deal with one's child(ren). You learn that more structure
and predictability results in smoother transitions between activities.
You begin to realize that Tourettic rages have no intended malice, and
that you only increase your own aggravation and your child's mortification
by taking them personally. Ways of minimizing stimulation for your TS
child (for example, lots of sleep, avoiding "power struggles"
when the child is already overloaded, allowing him/her to have a personal,
quiet haven) begin to occur to you. You start to discriminate between
the concepts of understanding, and permissiveness - while special accommodations
for the disorder should be made, responsibilities (and consequences
for not fulfilling them once those special accommodations have been
made) must still exist for the sake of your child's feelings of
happiness, worth, and efficacy. You understand that Tourette's only
makes a person MORE disinhibited - it doesn't make him/her completely
incapable of any and all restraint, just less than average. So rather
than treating your child(ren) as an invalid, you treat him/her as near
to normal as possible; this grants him/her a dignity and communicates
a respect which can eliminate a lot of frustration and feelings of helplessness
in that child's life.
Thus
far I have commented solely on the influence of education in TS when
parents are well-versed. Education is twofold however - the TS child
him/herself must be involved in the process as well, and the educated
parent is integral in this as well. From my experience, it is easy for
parents and teachers, once they understand the TS, to forget that the
children themselves also desperately need that information. It is true
that some children deny their TS: these are the kids of highest need,
because in their ignorance they see the diagnosis as an additional burden,
when in fact it is the cart with which to carry existing burdens. Some
parents may believe that by not talking to the child about the TS, or
by denying the impact or severity of the TS, this somehow reduces the
blow for the child. I submit that the exact opposite occurs - I believe
that children have enough self-awareness to know when something is very
wrong or different about the way they act or think. When everyone around
that child avoids addressng these concerns, (s)he is robbed of any way
of compartmentalizing the bad things that they do, feel, or have happen
to them, and they begin to see themselves as simply, and globally, bad.
When you educate your child about his/her TS, they are given a way of
organizing or "slotting" all of the Tourettic events in their
lives. "I'm not running around the classroom because I'm
rude, it's because I have problems with distraction". "It
is not that I'm an ungrateful brat, I trashed my room because I
have a harder time holding onto my temper than other kids". Recognize
that I am not advocating using the disorder as a crutch or an excuse
here: all I am saying is that to fight one's enemy, one needs to
see it's face….
For me, education was the vital key to where I am today. It gave me
a much needed and sorely missed sense of control in my life - maybe
I couldn't stop the Tourette's, but I could learn to predict
it, and even minimize it through various strategies and coping mechanisms.
I was no longer a helpless victim on a runaway train; sure I was still
STUCK on the train, but I could use that train to take me places once
I knew how it ran. Everyone reacts badly when they are robbed of control:
think of the man who loses his temper because he is stuck in an unexpected
traffic jam, versus the man who takes an alternative route because he
listened to the radio and heard about the delay. Or the anxiety levels
of an employee who never knows when he will be called into work, versus
the employee on very regular, predictable hours. Or the depression levels
of a woman permanently stuck in a bad relationship due to financial
need versus a woman who is independently wealthy enough to leave? The
only differences between the anger, nxiety, and depression produced
in TS, and in these scenarios is in mere degree. Educating the TS children
themselves is what GIVES them the information abot the traffic jam,
or the work schedule, or money to be independent. Some parents with
whom I've met make the comment that my TS is not "as bad"
as that of their child. Realize that this is only because I, through
education, now know myself and my TS well enough to develop and implement
strategies for avoiding many difficulties, and have found ways of empowering
myself despite the TS.
Let me end by again congratulating all of you for what you are doing
for your children. It takes ubiquitous strength, and courage to deal
with TS, both as a parent and (don't forget!) as the child. Remember
that for each problem you are dealing with now with your child, by becoming
educated in TS, and by sharing that knowledge with your child(ren),
you have circumnavigated many, many others.
