Sotos
Syndrome Conference
|
Initial
Fear.
Before
going to the Sotos Syndrome Conference in San Antonio, Texas, we had a
bit of
an underlying fear that we would somehow be frightened further once we
got
there if we learned that perhaps some of the older children and adults
with
Sotos in attendance were worse off than we anticipated. We had this
secret hope
of meeting even just one successful adult that could help us maintain
that ray
of positive projection for what our daughter's future will hold.
We
Belonged Here.
What
we found was that there was a really big range of difference amongst
the kids
but many similarities as well. It was a bit surreal at first seeing all
these
people who looked like our daughter: the facial gestalt, the height,
and even a
certain look in their eyes. I found myself relishing the initial
moments just
in the hotel lobby, seeing family after family arriving with a child
that
looked just like our Etelyn. It confirmed to us that we belonged here,
and also
what we saw helped us to realize how well Etelyn is doing and how far
she has
already come!
Etta
Brings Hope.
There
were a few children her age there and none of them had many words yet,
so that
really helped us to see how incredible Etelyn is doing within the scope
of her
diagnosis, and raised our confidence that she will in fact stay on a
positive
curve developmentally. Etelyn carried on conversations with many of the
parents
and sang her favorite nursery tunes while running about and had people
mesmerized. It was an unexpected and very cool thing to see that our
child was,
in fact, one of the ones to bring hope to others. We
had spent so much energy worrying about the outcomes, that we
had failed to take into consideration all that our daughter and family
would
also contribute to the conference experience.
It
was such a wonderful opportunity to meet parents and talk to the
professionals
about the things that affect a lot of these kids: temperature control
irregularities, extreme thirst, sleep difficulties, growth patterns,
seizures,
eye problems, teeth problems, social and behavioral difficulties,
autistic
tendencies, family planning, and so on.
Our
Hope is Realized.
The
first night we were there we were introduced to Colleen, a 16-year-old
daughter
of the Conference organizer and she was just gorgeous. She was tall and
you
could see by her face that she had Sotos, though the dismorphic
appearance
wasn't so strong that you would stop and stare if you didn't know about
Sotos
yourself. She had a little bit of an uneven gait and though taller than
her
parents, not by much, and she held herself very confidently. She was
calm, well
spoken and considerate of others, a very bright young lady who seemed
wise
beyond her years, which I am certain comes from growing up with a
disability.
After five minutes with this young lady, my husband turned to me and
said, “this one girl is enough reason to have traveled here!” and I
totally
agreed. I
actually found myself choked up when we turned and walked away because
Colleen
confirmed my instinct that at many levels our Etelyn will be OK at
worst, and
at best, exceed our expectations.
We
Can Handle It.
There
is a lot of fear underlying a genetic diagnosis such as Sotos Syndrome
for a
parent. Seeing some of the heavily affected teenagers was hard. But at
the same
time, seeing the way their parents and the teens themselves coped and
dealt
with life, made us realize that even if Etta were to regress
substantially and
become more mentally challenged and have more attentional issues and behavioral
deficits... we can STILL handle it!
Thank you so much for your kind and generous support.
We made friendships that will last a lifetime and gained so much
invaluable insight and information. We couldn't have gone without your
help!
Tamica Estelle Leonard
©
Parent to Parent has conference funding
available. Call our Family Support Coordinators at 1-800-800-4005;
applications can be taken over the phone. In addition to
diagnosis-specific conferences, see our Conference
Calendar page.
Spring 2006 - In this Issue:
Vermont Teen on National Board
From
Our Director
Don't Sell My Boy
Short!
Sotos Syndrome
Conference
Updates (plus
2 articles on Autism)
Ethan's
Fairies
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Heartfelt Thanks
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