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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 HERVOICEvJANUARY/FEBRUARY 2020v19

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