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We see it ALL the time ~ take this pill or use this
machine and you will lose 30 pounds in one week, feel more energy
and be happy, or look and move like a well-conditioned elite athlete.
Sounds good...BUT...life doesn't work that way!
Even though we may know in our heads that those things
won't work overnight or over the long haul, we're hoping we're wrong
and that they WILL work and make our lives easier or more fulfilling.
Sometimes when things get difficult we grasp for just about anything
to ease our pain ~ whether it be physical, mental, emotional or
spiritual pain.
The same principle applies to our situations as FOD
Individuals/Families dealing with a chronic disorder. It would be
nice if once we knew which disorder we were dealing with that our
child(ren)/we could take a pill and everything would be cured and
episodes would never occur. Unfortunately, magical thinking only
complicates how we, and our children, might practically and emotionally
deal with the disorder.
As much as we wish it to be true, there is NO MAGIC
PILL or 'one size fits all' prescription when it has to do with
losing weight, gaining muscle or being happy ~ just as there is
no one symptom description or treatment protocol that covers ALL
FODs for ALL children/adults. There may be some common symptoms/treatment
suggestions, but you can't make a blanket statement that ALL present
the same way and should be treated the same way. And that goes not
only for the practical aspects of medically dealing with these disorders
but also for how our children/we emotionally cope with them on a
daily basis and through the years. There is not just one way that
works for everyone. There are too many factors and characteristics
that are unique to EACH individual and family to make the bold and
totally unrealistic assumption that what works for one will automatically
work for another and will continue to work over time.
So if we can't 'just do it' all the same way year
after year, then where does that leave us? What CAN we do, as
parents of an FOD child or as an adult FODer, in order to cope with
these disorders over time and how can we help our children with
constructive suggestions when they have uncomfortable or strong
feelings or behave in a difficult way and don't know where and how
to channel their energies?
First of all, when you/your family get an FOD diagnosis,
acknowledging and understanding that many of the assumptions
you might have had about how your life SHOULD BE and how every child
born to your family SHOULD BE that so-called 'perfect' baby are
shattered. And that shattering most definitely will touch every
aspect of your being ~ emotionally, physically, cognitively, behaviorally,
socially and spiritually.
Yet that shattering of assumptions does not
automatically mean that life is going to be miserable. Within the
context of the bigger picture, it presents us with the OPPORTUNITY
to make some changes ~ not only in our own lives but in our
family's lives. If any of us stayed in that shattered state, I wouldn't
be writing this right now and you wouldn't be reading it! So...we
ALL have a CHOICE. Unfortunately, for some, that choice includes
denial or running away from the situation, which doesn't help our
children/ourselves in the long run. For most, that choice will
hopefully entail putting those fractured pieces of our hearts back
together in a new and different way, yet also in a way
that helps us to positively and proactively move forward in life
and to help our children KNOW and BELIEVE that they are just
as SPECIAL as they are ~ with or without an FOD! And also for
us to KNOW and BELIEVE that we are good persons/parents and NOT
horrible people for being carriers of these rare disorders!
Going back to the weight loss scenario, cutting calories
and certain types of foods is not the only focus for making that
change ~ it also takes exercise, relaxation/meditation, motivation,
lots of water, and being around others that will support you and
not sabotage your program, as well as many other factors to really
help in the process if it's going to be a healthy process. If you
chose to cut out eating completely that would not only be self-destructive
and dangerous, but it would most likely cause you to gain even more
than what was lost when you begin eating again. So working with
all the factors as an important part of the whole picture will
ultimately make an impact on your goal of seeking a healthier lifestyle
and body weight/image. The same goes for dealing with FODs ~
seeing them in a multidimensional way and not just in one way
will benefit ALL in the family.
A challenge for all of us is learning how to work
WITH these disorders and not AGAINST them, and work with them as
an individual and as a family. A first step for many of you
(probably after being THRUST into chaos after the diagnosis!) was
becoming part of this Support Network where you KNOW that you are
NOT alone in your struggles and in taking on all these challenges!
It may not be your typical support group in that we don't meet face
to face, but it's the immediate connection that we make with
other FOD families experiencing similar concerns that makes this
Group 'work!'
In taking on the challenge we are acknowledging
that our child(ren)/we have a rare genetic disorder that has short-
and long-term ramifications in ALL dimensions (i.e. medical, emotional,
mental). Acknowledging that fact propels you to learn more about
FODs so all will understand (although my brain can only hold
a small amount of biochemistry!) what's happening metabolically.
Yet it may also give rise to many fears about the present, as well
as what the future may hold. Gaining medical and practical information
and utilizing it over time may alleviate some of those fears and
the stress that often accompanies those fearful thoughts. A key
to coping with these disorders is to be DETERMINED to NOT have
it break your spirit or your child's spirit.
One way of activating your spirit is to embrace
and constructively express ALL of your feelings such as fear,
guilt, anger, frustration, vulnerability, and grief. Feelings just
are ~ they are not good or bad ~ what CAN be bad is what happens
when feelings aren't expressed. Trying to suppress them will not
only give your children the wrong message about dealing with emotions,
but they will most likely come out in other not-so-positive ways
at some point in time (i.e. acting out, non-compliance, use of substances
to numb themselves). Help yourselves and your children by learning
to normalize and validate your feelings and thoughts in order
to be able to go with the ups and downs and the flow of life's difficult
challenges.
It's important to help our young children to label
their feelings. They may not be able to articulate exactly what
they are feeling inside (depending on their developmental and cognitive
levels). So having them draw a picture or play with puppets or toys
may help you and them get a feel for what they are experiencing.
Encouraging them to tell you about their picture or 'talking' through
a puppet will further uncover specific feelings.
For older children, it may be even more of a challenge
since some adolescents don't want to talk directly about what they
are feeling. Sometimes doing an activity with them such as taking
a walk, listening to music, watching a show/movie, playing catch
etc. can be a good way of connecting. Yet, telling them to just
'snap out of it' isn't going to help the situation. They are not
only medically dealing with their disorder, they ara dealing with
the normal concerns and learnings of adolescence and that can oftentimes
be a rocky ride.
LISTEN to what they have to say and WATCH their
behavior and try to reflect their feelings and thoughts back to
them without telling them that they shouldn't feel the way they
are feeling (i.e.angry, sad). Many times there are feelings underneath
that anger and sadness, possibly a fear or sorrow that they might
not be accepted by their peers because of their medical concerns
and restrictions in activities or foods...or that they might have
some embarrassing episode in front of others...or that they may
never have the opportunity to run or play a sport. These are all
REAL to them and they need to be normalized, validated and expressed
in constructive ways.
Being able to do these things gives us a sense of
control over what we might think is a totally uncontrollable and
stressful situation. Actually, it's the holding in and down of our
emotions that makes the situation even more chaotic/stressful. So
MODELING the "Naming, Claiming, Framing, and Taming (meaning
expressing constructively)" of our feelings and thoughts
(terms that I read years ago in a Family Networker journal)
is vital to actively coping with these disorders in a HEALTHY way.
In past articles I have mentioned a variety of ways
to express emotions and deal with stress such as journaling, write
stories or poetry, exercise, listen to music, hit a pillow, and
volunteer, just to name a few. Any of these can be done alone or
as a family. Expressing emotions symbolically can also be 'healing,'
such as lighting a candle on special memory days or holidays or
volunteering your time/money/toys at a children's hospital. The
important thing to remember is to find ways that work for you
and your family.
Another important aspect of healthy coping is being
ASSERTIVELY PERSISTENT when running into obstacles,
whether it be a lack of answers/diagnosis, insensitivity of patronizing
people that tell you to stop being overprotective and go home to
enjoy your child while you can (that HAS been said to several of
our families!), or difficulty in obtaining needed services at school/home/work
for your child/self. It's a FAMILY AFFAIR when receiving an FOD
diagnosis and many adjustments (i.e. meds, diet, specialist
appointments, decision whether to work or stay home, finances/insurance,
making sure non-affected sibs get their needs met too) need to be
made inside and outside the family ~ so NOT GIVING UP is
imperative to making those adjustments and making them manageable
for your family situation. Additionally, open communication
with other family members and professionals is vital. If you don't
feel you are getting what your child/you need, then seek out other
emotional support or medical help.
Just because we know there is 'NO MAGIC PILL'
or quick fix doesn't mean we give up hope ~ there IS HOPE
~ hope that as individuals and families we will find meaning in
our life challenges, hope that researchers will develop more sensitive/effective
diagnostic tests so EARLY DIAGNOSIS and TREATMENT can begin before
a severe episode unnecessarily takes another child's life, hope
that our children/we will INTEGRATE these disorders into
their lives as they get older, hope that they also learn that they
are NOT their disorder and that they grow to be who they are to
be, and hope that those families that may experience a death
in the future have the strength and support to work through their
difficult times ahead.
Even though many still have not heard of these rare
disorders, it is MY hope that through our efforts as individuals
and as families within our local communities and even around the
world, more professionals will become aware of and knowledgeable
about FODs so that each child/adult with an FOD will receive the
earliest diagnosis and most effective treatment so they can live
a full and meaningful life!
A goal for the new millennium may be to live EACH
day to the fullest because none of us knows for sure how long our
mission on earth will be. Strive to Love, Live, Work, and Play
with PASSION and PURPOSE! There is 'NO MAGIC PILL' to
make any of that happen easily ~ but you can bet when they are
done based in LOVE and COMPASSION, life will be so much RICHER!
Peace, Joy and Love in 2000 and beyond...
Deb Lee Gould, Director, FOD Family Support Group
January 2000
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