My
18-year-old son John plays the drums. He has his own
set of drums in his room and he plays every day - for
hours. Now, if you are imagining me with my hands over
my ears and my face wrinkled up in a migraine frown,
think again. John is pretty good on the drums, and I
actually enjoy listening to him as he plays along to
the radio or a favorite tape. Part of my pleasure can
be attributed to his taste in music, which pretty much
matches mine. He likes the Eagles and Yanni, and even
plays a tape of Scotish pipers occasionally when he
needs to soothe himself with something
relaxing.
John enjoys
playing the drums - with a passion. In fact, it is one
of the few pleasures he enjoys in life. John doesn't
have a car, in fact he doesn't even drive. He doesn't
have an easy time in school. He doesn't have any close
friends, except for his doggy. You see, John has Fetal
Alcohol Syndrome (FAS), a disorder caused by prenatal
exposure to alcohol that has sentenced John to a
life-long hangover. His birth mother's drinking during
pregnancy caused John's mild retardation, small
stature, unusual facial features, and damage to his
central nervous system. Because of FAS, John is not as
bright, not as tall, not as good-looking as other
teens his age. He has a hard time learning the rules
of life, and when he learns them, he has a hard time
remembering them. His behavior and mannerisms seem
inappropriate to most people, and while he desires to
be close to people and has a friendly and out-going
personality, others are put off and maybe even
repulsed, and they shy away from him. John needs
reminders about how to behave normally around people.
I give him verbal cues for everything from getting
ready for school in the morning, to taking care of his
dog, to how to behave in public, to how to interact
with company,and so on and so on, day after day. His
brain just doesn't function like yours and mine. He
seems smarter than he is, he can "talk the talk" but
he can't "walk the walk." He has a hard time carrying
through from knowing what to do to actually doing it.
So John needs to be reminded, consistently and
continuously, in order to get through each day. One
rule that John has finally learned is to ASK first
before playing his drums. So every day, when John
comes home from school, he ASKS me, "Mom, can I play
my drums?" And most of the time, I say, "Sure,I'd LOVE
to hear you play!" And I do love to hear him play.
Because I know his drums give him one of the only
pleasures he has in life.
My 15-year-old
son, who is "normal," plays the guitar, and although
his taste in music runs more toward the hard rock and
alternative rock that many kids his age like, I still
think he's pretty good. Recently his friend, who plays
the bass guitar, came over to practice their music,
and the two younger-but-bigger boys asked John if he
would like to play along with them. John was thrilled.
They set up their instruments, and tried a few songs
that all three knew. It didn't go as well as they had
expected. John is such a good drummer, so they didn't
understand why he had such a hard time accompanying
them. He would lose the beat in the middle of the
song, and by the time he got back on the beat, the
song had fallen apart and they would have to start all
over. I realized that John could keep the beat only
while playing along with a tape or the radio. He
couldn't keep a beat on his own.
I guess that's
how life is for John. He will always need someone else
there to "play along" with him and keep the beat for
him. On his own, he will surely fall out of step from
the rest of the world. It is so easy for him to become
lost in the music of life. I'm happy to be here for
John, to help him catch the beat again when he loses
it, to accompany him through a life that can bring him
joy and success that he might not realize by playing
solo.
But what about
the other 5,000 children born each year with FAS? What
about the 50,000 others born each year with alcohol
related birth defects? They are the ones who may
appear to be normal physically and intellectually, but
who nevertheless have suffered from prenatal exposure
to alcohol with similar dysfunction of the central
nervous system. These are the kids who are
hyperactive, have attention deficit disorder, don't
learn from the consequences of their actions, who are
too impulsive to think before they act, who are just
as frustrated with their inability to control their
behavior as everyone else around them. Who is going to
help them find the beat? Who is going to provide them
with the accompaniment they need to get through
life?
It feels good to
help guide John through the challenges he faces in
life. But somehow, that's not enough. After all, FAS
is preventable - 100% preventable. And it's the
leading cause of mental retardation in our country.
Something is wrong here. Research has shown that there
is no safe level of alcohol consumption during
pregnancy. The only sure way to prevent damage is to
abstain from alcohol during pregnancy. In the spirit
of solidarity, I have chosen not to drink, to support
others who have chosen not to drink, to make it easier
for others,maybe a pregnant woman, to choose not to
drink. In the spirit of education, I have chosen to
speak out about FAS and alcohol related birth defects,
in the hope that an increase in awareness today might
promote an increase in the wellness of our community
tomorrow. After all, I believe that all children
deserve to have a chance at a happy and healthy
life.