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family oriented and allows her to adjust her
schedule as needed for Gus. Brian is a selfemployed contractor. The family also used a
wonderful childcare center that Gus attended
from just six weeks of age, until he turned
thirteen. Brenda shares that “We were really
lucky, because a lot of parents have trouble
finding people who will do child care for kids
with any type of handicap.” Now that Gus is
older, his sister, Josee, stays with him during the
summer while their parents are at work. She
takes him out swimming, golfing, and doing
other activities. The siblings are very close. Last
summer Gus was able to go to his first special
needs summer camp for six days without his
parents. It was a huge success, and he’s already
been asking to go again this year.
Gus currently attends the local public
middle school, and is in the special education
room for his core classes: math and reading.
He is mainstreamed into other classes such as
physical education, (which is his favorite) art,
and science with his peers. Brenda enthuses that
“This is a big thing because, Gus just loves being
included with all his typical peers.” Like other
kids his age, Gus loves technology. He enjoys
Netflix, playing video games, and using his IPad.
He’s hoping to get his own cell phone soon.
It can be extremely difficult to understand
Gus if you aren’t with him regularly. He
has a limited vocabulary of a couple of
hundred words that he can physically say, but
understands many more than he can actually
express. He will pantomime with body language
and gestures like the game charades, to get
his messages across. The Slamas tried using a
talking technology machine, where Gus could
type in symbols for what he wants to say, but he
got frustrated when the machine was limited
and didn’t work the way he wanted it to. He
knows that his peers don’t use machines like
this, so he didn’t want to use it either. Brenda
chuckles when she says that “Gus is very smart
and knows that saying please, thank you, and
sorry can get him just about anything he wants.
He listens to everyone’s conversations and
understands exactly what people are saying.
At this point, Gus has fewer medical
appointments. While still a little shorter in
stature and slimmer compared to most of his
peers, he’s grown out of his ear infections and
Brenda feels that for the last four years he’s
been very healthy. His doctor has predicted
that eventually he might reach 5’8” when full
grown. Gus goes to a Fragile X clinic in Iowa
City twice a year to see his developmental
pediatrician, a pediatric neurologist once a year,
and his developmental nutrition pediatrician
once every three to six months, depending on
how he’s doing. Gus is also participating in a
clinical study in Chicago, IL. Brenda said there
are at least twenty specialty clinics that care for
kids with Fragile X and other rare conditions
throughout the United States.
Due to his early intervention and help with
physical therapy, Gus can skip, jump, run
and ride a bike as well as his peers. His large
motor skills are exactly where his peers are.
He might be a little less coordinated, but he’s
still acquiring new skills all the time. Brenda
says that, “Fragile X kids don’t stop learning,
they just learn at a slower pace.” Gus still can’t
button a button, or tie his shoes, but the Slamas
have no doubt that these skills will come in
time, because Gus is still doing something new
almost every day. In the past two months Gus
has learned how to snap his fingers, something
some people without any disabilities can’t do.
Brenda says, “It’s the small things that we really
appreciate and celebrate. We want Gus to live
as independently as possible, so we’re always
working on things and encouraging him.”
The Slamas were very proactive from the
very beginning and quickly learned what
they needed to know in order to be excellent
advocates for Gus. Brenda advises “A lot of
decisions are based on money, so unless you
are there fighting for your child you’re not
always going to get the best outcome. If you go
into meetings educated about resources and
accommodations that should be made available
for your child, you are more likely to receive
them.
In 2012, the Slamas started a Fragile X
support group with two other families. They
have also become very involved with The
National Fragile X Foundation. There is a
partner chapter for Iowa and South Dakota.
Brenda has been a co-leader for that since 2012.
The chapter has quarterly meetings, but there
are other activities throughout the year. Every
summer Brenda and Brian put on a Fragile X
Golf tournament in Pocahontas, IA. A coleader in Ankeny, IA. leads a special bicycle
ride fundraiser they call, “Bike to X out Fragile
X”. They also do conferences every other year
at different locations in Iowa, and have family
gatherings as an outlet for friendships to be
formed.
Gus has done really well due to all the
resources and therapy his parents have
obtained for him. Brian and Brenda have asked
themselves the personal question: if there was
suddenly a cure found for Fragile X, would they
want Gus to have it now? Brenda’s answer is
emphatic, “Absolutely not! I don’t want him to
change. I love him exactly the way he is.” The
Slamas mission is to raise awareness about
Fragile X and to offer support for families with
children with special needs. They have come full
circle and Gus is still doing better and better! n
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