Sophomore Mona Goggins has always known that her brother, freshman Joshua “Josh” Goggins, was different from others. According to Mona, he showed symptoms of autism at an early age—aggression, lack of speech and sensitivity to sound.
“He didn’t walk until he was two and a half,” Mona said. “He still (hadn’t) spoken, so we knew there was a problem.”
Josh has nonverbal autism, and according to the Center for Disease Control and Prevention (CDC), about 25 percent of individuals with autism are nonverbal. For the majority of the population, autism and other disabilities like it may seem difficult to understand, let alone handle. However, with March being Developmental Disabilities Awareness month, more and more people are becoming educated about developmental disorders.
“I think (awareness) has gotten so much better, just from when I was in fifth grade to now,” Sheila Schuh, Best Buddies officer and junior, said. “It’s like a whole new world.”
Developmental disabilities, according to the CDC, are a group of chronic conditions due to an impairment in physical, learning, language or behavior areas. Developmental disabilities can be detected by failures or delays in meeting “milestones” such as walking, waving and smiling for the first time. They include conditions like cerebral palsy, attention deficit hyperactivity disorder (ADHD) and hearing or vision impairment. These developmental disabilities impact 15 percent of children aged 3 to 17, according to the CDC, and can significantly impact their day-to-day lives, by making it difficult for students with disabilities to “fit in” with other students or complete certain tasks.
Schuh said she has seen these challenges on a regular basis.
“Working in the Life Skills room, there’s such a large range of different struggles that people have,” Schuh said. “One of the hardest things to see is when somebody wants to do something, and they try really hard to overcome it, but it’s just something that they can’t do (because of their condition).”
Mona said she has experienced this personally with her brother. According to Mona, when Josh struggles with showing his feelings or doing a task, he may throw violent fits in public, and it becomes a group effort from her and her family to calm Josh down.
“You just always have to be on it, because if he does throw a fit, you have to take action immediately,” Mona said. “He doesn’t mean to be violent, but (he) just (is) because he is nonverbal. He’s violent to show, ‘Hey, this is what I’m feeling.’”
Treatments for developmental conditions can add another layer of difficulty, as some can be expensive. According to the Fiscal Times, total spending on ADHD alone in 2013 ranged from $143 billion to $266 billion. This may include drugs such as Adderall to treat the condition itself and an accompanying nightly sleep medication to counteract the side effects of the Adderall. Additionally, according to the CDC, children with ADHD are more likely to be seriously injured than children without the condition, adding on the cost of hospital visits for serious injuries.
Other developmental disabilities, such as vision impairment, have their own prices as well. According to Research!America, a group that works on improving health in the United States, the cost of treating vision impairment is an estimated $7,000 per person every year. The individual and his or her family pay 52 percent of the cost themselves, which may cover things such as a diagnosis or vision aids.
Mona said she acknowledges the financial difficulty of living with and caring for a sibling with a developmental condition like autism. According to Autism Speaks, an organization that works to increase awareness about autism, the average yearly cost for treating autism ranges from $18,000 to $30,000 amounting to a lifetime cost of $1.4 million to $2.4 million. These costs may cover therapy, education, behavioral intervention or even residential care should it be necessary.
“Especially now that (Josh) is getting older and my mom’s getting older, we’re starting to look at options for group homes,” Mona said. “It’s kind of hard because he’s my little brother and he’s younger than me, so I kind of want him to stay.”
Another challenge that students with disabilities may face is bullying. Bullying can manifest in a multitude of ways, such as name calling or physical aggression, and according to Pacer’s National Bullying Prevention Center, children with disabilities are two to three times more likely to be bullied than their nondisabled peers. Mona said even in the relatively safe environment of CHS, she has experienced people bullying Josh in her daily life.
“I’ve experienced people picking on my brother in public,” said Mona. “You just have to show people, ‘Hey, Josh is a normal person.’”
According to Frances “Francie” Elzinga, Champions Together member and sophomore, much of the bullying stems from persistent stereotypes that students with disabilities cannot succeed academically or physically. These stereotypes can range from a student being treated like a child to statements describing students with disabilities as “broken.” Whether the teasing stems from how an individual walks, speaks or looks, Elzinga said it’s not acceptable and should be stopped immediately.
“Sometimes, at an academic standpoint, (someone with a developmental disorder) may be lower than you, but it’s congruent with their disability and where they’re at in their education,” Elzinga said. “But you shouldn’t be rude to anyone, no matter if they have a disability or not.”
Several clubs at CHS have begun to take action against bullying and help students with disabilities by forming friendships. Groups such as United Sound focus on helping students with disabilities play music, which can improve motor skills for some individuals. Other clubs, like Unified Track and Champions Together, focus on athletics and participation in athletic events with students with disabilities. Additionally, Young Life Capernaum is a youth group for people with special needs and helps them form religious relations.
Best Buddies, a group that primarily specializes on forming friendships between students with disabilities and those without, plans to spend this month working to raise awareness through hanging posters and creating keychains. Additionally, according to Schuh, the group will also create a video and have a bubble party with the middle school Best Buddies groups.
“The underlying factor of all of this is that support we’re able to provide to our friends with special needs to grow and learn and become adults,” Schuh said.
According to Elzinga, education about these conditions is a priority for groups who work with students with disabilities. Being aware of developmental disorders is something that can easily spread among individuals, and even though funding is helpful, Elzinga said, awareness tends to make a bigger impact than money alone.
“In Champions Together we had a discussion about whether or not our goal should be educating people about disabilities or fundraising,” Elzinga said. “A mass majority wanted to educate people because to us it’s more important that everyone understands what a disability is.”
According to special services teacher Dana Lawrence, groups like Best Buddies and classes like Peer Facilitation have increased awareness of developmental disorders significantly. Additionally, Lawrence also said books such as All My Stripes: A Story for Children with Autism by Shaina Rudolph and Danielle Royer have allowed even younger students understand conditions like autism.
“When I was in school, nobody ever talked about (developmental disorders),” Lawrence said. “Now I feel like a lot of people know about it.”
Despite the challenges still left to overcome, according to Mona, change is happening. Conditions like autism aren’t always as bad as they may seem, she said. In fact, according to Mona, Josh is aware of his condition but isn’t upset by it. He tends to use it as a lighthearted advantage over his siblings, she said, and often times, Josh will cause mischief around the house, just like any other kid.
“(Mentally, Josh) will be like, ‘Oh well, I have autism so I’m going to do this and I’ll get away with it,’” Mona said. “He’s really smart about it.”
Elzinga said she agrees that developmental disorders aren’t always negative. According to Elzinga, students with disabilities are often the happiest people she knows, and their positive attitude has left an impression on her own.
“They’re just happy and smiling, and they always give you the most amount of compliments,” Elzinga said. “It just teaches me to have that same attitude, because they might not be as able-bodied as me, but they’re a lot of times…just a lot happier and just amazing people to be around.”
As awareness about the condition increases, Lawrence said it becomes important to know how to interact with students with developmental disorders. According to Lawrence, patience is one of the key components to keep in mind when interacting with a student with a disability.
“Be really flexible and patient. Give them time and ask them questions,” Lawrence said. “(People with disabilities are) all so different. It’s hard to say (what’s most important), but I’d have to say be patient. Treat them with respect.”
Though Mona said she is happy awareness is increasing, she also acknowledged that personal action must be taken in order to bring real change. Despite the groups that have already taken action, according to Mona, the biggest impact comes from daily action from individuals.
“I’ve learned that you have to be the change that you want to see,” Mona said. “You have to show that yourself, and then other people will pick up on it and start treating (people with developmental disorders) like normal people.”
Schuh said she agrees. According to her, the most important fact to keep in mind is that students with disabilities not only face the same challenges nondisabled students do, like doing classwork or waking up early, but also love the same things nondisabled students do, like going to prom or watching popular movies. Even though some students don’t work with students with disabilities and may feel awkward around students with disabilities, she said, even the littlest interactions can make a world of difference.
“You don’t have to strike up a whole conversation,” Schuh said. “You can smile, give somebody a high-five or compliment somebody on what they’re wearing. Our buddies like that. They like to feel beautiful or good-looking, so just be nice and sweet. That’s what I’d like for my friends.”