Phoenix
airport - 9/6/96, 5:15 p.m.
As I sit on the
runway, awaiting delayed departure on this the last
leg of my journey home from the conference on the
secondary disabilities of Fetal Alcohol Syndrome, I
finish the final pages of a best-seller that I brought
for my quiet time on the trip. The book was a welcome
respite at the end of each day of the conference, when
I returned to my room from another session, my head
filled with thoughts of primary and secondary
disabilities, diagnoses, treatment plans, behavior
scales, and the many stories told of beloved children
who suffer from prenatal exposure to alcohol. After so
many hours of inundation with data and statistics,
bringing new hope and new fears, I welcome the respite
of fiction that takes me far away from the dilemmas of
FAS. Soon I will be home again, ready to face the
challenges of FAS head-on when greeted by my son,
John.
I think about
him and life with him these past 19 years. He was only
two and a half pounds when he was born, and just four
pounds when I brought him home from the hospital. I
think about the sleepless nights that long first year.
I remember the cuteness attributed to his silly
antics, and how the cuteness wore off as he got older
and the same silly behavior became labeled as
"inappropriate social interactions." I think about how
hard I have worked to make life a little easier for
John as he struggles to control his impulses, as he
searches for the right social response, as he
apologizes, again, for some mistake he has made, some
rule he has forgotten. I think how fortunate he is to
have escaped from the effects of the secondary
disabilities, such as expulsion from school, alcohol
or drug abuse, or trouble with the law.
Oh, but my mind
is tired of all this. And I return to the novel, and
soon come to the end of the book. Then I remember the
book in my bag, the one I bought as a gift for a
friend back home. It's not a novel, but a best-seller
nonetheless, one I had not yet read. So I take it out,
open it to the first chapter, and escape once again
into a book.
In the first few
pages, I read an account of a father's concern for a
son who struggles with difficulties in school, unable
to follow directions, socially immature, who displays
embarrassing behavior, who is small, skinny and
uncoordinated. No, this boy does not have FAS, but the
author has caught my attention with a discription that
sounds so familiar, and I continue reading. The author
states that no matter what the parents did, or how
hard they tried, nothing changed with their boy. They
had inadvertently given their son the message that he
could not succeed. They realized that if they wanted
to change their child's situation, they would need to
change themselves first.
The author
stated that in order to change ourselves effectively,
we first have to change our perceptions. Now I've
heard this before many times, and I heard it again at
the conference. I didn't pay much attention, because I
believed I already have a healthy attitude in that
respect. As I read on,and turn the page, I am struck
by these words in bold print as they jump out at me:
"Primary and Secondary Greatness." Of course ! In my
concern about my son's disabilities, I had forgotten
about his greatness.
Then I remember
the words of conference speaker Carolyn Hartness, a
wonderful Washington woman whose message serves to
remind us to be aware of not only the physical and
emotional aspects of our children and their
disabilities, but also the spirit of each as well,
which is primarily whole and healthy. She reminds us
that our children are sent to us as teachers, filled
with wisdom beyond their years, beyond their IQ's. She
reminds us of the many gifts of the spirit that they
share with us: humor, generosity, kindness, musical
ability. These I see are the gifts of "Primary
Greatness." Someone else at the conference had shared
that children with FAS are very sensitive emotionally.
What some may see as a detriment, I see as a gift,
this ability to sense and feel at a deep, intuitive
level, a gift possessed by each child with
FAS.
My thoughts fly
around in a flurry of emotions, as I rummage through
my purse for a pen to write all this down. and my hand
touches a picture of John I carry with me. Oh that
smile, always ready to brighten the spirit of anyone
in the same room. Those arms, so willing to give a
hug, not always inappropriately, often just when I
need one. The hands that grasp drum sticks to beat out
a rhythm on his drums, with real talent, hands always
ready to share with others, to help someone in need.
Those dark sparkling eyes with such readiness to love
and willingness to understand my feelings. I've only
been gone for three days, and I miss him
so.
Carolyn Hartness
warns us that great damage can be done when a child is
beaten down by peers and teachers, even those who mean
well. We need be careful how we touch the child's
spirit, she states, for this has a great impact on the
child. I may not be able to undo the damage to my
child of the primary disabilities of FAS, but I can
nurture the primary greatness of my child's spirit, so
he can bloom and thrive in the secondary greatness of
self-confidence, pride, respect, talent,
self-expression and self-actualization. Carolyn
reminds us that our children are not "FAS kids" - they
are "children and adults with Fetal Alcohol Syndrome."
I agree when she said that words carry great
power.
And so, here I
sit on the runway, still waiting to take off, anxious
now to get home to my Great Son and give him a warm
hug and say "I love you and I appreciate you and all
you are, and I am so grateful that you are in my
life." And I'm thankful for this gift of extra time,
to write down these powerful words of others, so that
I can read them again, to remind myself, when I become
discouraged dealing daily with the primary and
secondary disabilities of FAS, that there is greatness
there also. I share these words with you, to remind
you, next time you see a child that has been labeled
as "disabled," to look for and see, and cherish and
nurture, the greatness of that child's
spirit.
