United Nations Secretary-General Ban Ki-moon once said, “To measure the success of our societies, we should examine how well those with different abilities are integrated as full and valued members.”
In a perfect world, there would be no developmental differences when it comes to young people. Children would all be given an equal path to success, free of obstacles and road blocks. In a perfect world, there would be no such thing as a neurological disorder, and therefore no need for words like “tolerance” and “assimilation.”
Of course, we don’t live in such a world. We live in a world that is unfair, unbalanced, and often unmerciful. We can rail against the injustices and shake our fists at life’s hardships, but that will only lead to resentment and anger. Instead, we all must simply do the best we can on the journey that’s been laid out for us.
Stephen and Sarah Beck understand the cruelty of life all too well. Their oldest son Joshua was diagnosed with autism when he was just a toddler. Although Joshua initially appeared to be a typical child, Sarah and Stephen quickly noticed signs and symptoms that triggered red flags.
“By 18 months toddlers start to put ‘two word sentences’ together (more snack, drink milk, eat apple, etc.). At 18 months, Joshua only had a handful of words. He would mostly cry or throw a tantrum and point to an object that he wanted instead of even trying to talk,” Sarah explained. Joshua was initially diagnosed with a speech delay, but additional symptoms quickly lead doctors to autism.
According to the National Autism Association, one in 68 children are born Autism or Autism Spectrum Disorder (which also includes Pervasive Developmental Disorder not otherwise specified and Asperger Syndrome). Boys are four times more likely to have Autism or ASD than are girls. Possibly the most alarming statistic is the Autism is the fasting growing developmental disorder in the United States. Unfortunately, it is also one of the most underfunded in terms of research.
For the Becks, dealing with Joshua’s condition has become a way of life. There are daily struggles and an equal number of triumphs. The struggles, unfortunately, often take center stage. For Sarah, the biggest issues have been in the areas of communication, anxiety, and social interactions. “Initially it was hard because he couldn’t communicate his needs very well, which would result in full blown meltdowns,” she said. “He was frustrated and we were frustrated.”
Now 12 years old and in the 6th grade, Joshua is steadily progressing in communication and social interaction skills. The anxiety is currently the biggest hurdle. “Anxiety can be triggered by sensory integration issues (lights flickering in the classroom, a fan clicking overhead, a printer suddenly turning on and printing a paper), things like that,” Sarah explained. “I think what most people don’t realize is that a lot of developmental and psychological disorders cross over, that’s why they refer to it as ‘spectrum’ disorders. ADHD, Anxiety, Autism, etc., they are all related and have crossover symptoms.”
Unlike Joshua, Reese Stotts suffered through medical issues from the beginning. The only son of Rick and Rachel Stotts started having seizures within a week of turning two months. He continued to have several grand mal seizures per week as an infant. Speech and developmental delays followed, but Reese wasn’t diagnosed with Autism until shortly before this fourth birthday.
Now almost 21, Reese and his family have learned how to deal with the symptoms, although that doesn’t mean there aren’t still hurdles to cross. “For Reese, I think some of the hardest things are related to the Autism like not being able to ‘turn his brain off.’ He is a really busy thinker and it interferes with activities of daily living,” explained Rachel. “Communication is another area that is a struggle.”
Although children living with Autism may have symptoms in common, every case is different. In Reese’s case, he was nonverbal until he was about eight years old. “At that point he started to imitate words. Even though they were not always intelligible to unfamiliar listeners, we were so excited he was finally talking,” Rachel explained. “He currently uses a variety of communication devices consisting of an iPad with a communication application called Proloque2Go, pictures, and some sign language.”
Most people are likely familiar with Autism or ASD. Whether or not their understanding is based on misconceptions and falsehoods, however, is another issue. A neurological disorder that is not quite as prevalent and therefore largely misunderstood is Tourette syndrome.
The disorder is characterized by repetitive, stereotypical, involuntary movements and vocalizations called “tics.” Onset usually occurs between the ages of three and nine. Although Tourette’s can interfere with daily activity, many children learn how to manage the symptoms and go on to lead productive, “normal” lives.
Jeremy and Dawnelle Larson were completely blindsided when their nine-year-old son, Blake, began displaying both physical and verbal tics just before Christmas of last year. One of the hardest things to deal with was the lack of support networks within the area. “The most frustrating part for us was feeling like we were all alone,” Dawnelle said. “Besides therapy, we were on our own as far as learning about the disease and trying to come to terms with how our lives were going to change.”
Blake has been learning habit reversal techniques in daily therapy sessions. The results have been promising. Some of the daily struggles for the third grader involve simple misconceptions about the disorder. He wants people to know that his tics are involuntary. Although they can be controlled, they will likely never completely go away. “I want people to know I can’t help it,” he said. “It’s in my brain.”
The biggest thing both Blake and Dawnelle want people to realize is that having Tourette’s doesn’t change the fact that Blake is still a regular kid. “I want people to treat me like a normal kid, not just a kid with Tourette’s.” Although their lives have been turned upside down, Dawnelle realizes that at the core, Blake is still the same child she has known all along. “He’s a very capable, smart boy beyond the Tourette’s,” she said.
One of the biggest goals of parents whose children suffer from neurological disorders is simply to raise awareness and fight societal fallacies. “I think one of the biggest misconceptions is that individuals with Autism don’t want to have relationships with others or aren’t capable of relationships, and that is not the case,” Rachel said. “More often, the individual truly desires a relationship but doesn’t know the way to achieve it.”
For Sarah, the hardest part is dealing with people who put a ceiling on the things Joshua can accomplish during his lifetime. “I think most people underestimate these kids,” she said. “Just because you’re not a great communicator doesn’t mean that you’re not smart or have strengths.”
All three women urge people to get to know the person behind the disorder. Yes, they are different in certain ways. Ultimately, however, they are human, which makes them the same as everyone else. A society that embraces differences and regularly practices love and tolerance is one in which all paths will lead to success, regardless of the obstacles encountered on the way.
One of the most important things for families with special needs children is finding a support system. Dawnelle is in the beginning stages of trying to start a Tourette’s support network in the Fargo/Moorhead area. She doesn’t want others to experience the loneliness and confusion her family endured. More information on specifics regarding the network will be forthcoming.
More information on Tourette’s syndrome can be obtained via the National Tourette Syndrome Association at www.tsa-usa.org. Resources pertaining to Autism and Autism Spectrum Disorder can be found at www.nationalautismassociation.org, the National Autism Association.
