Growing Up Autistic in South Brunswick

Joseph Ahern is just like any other typical 9-year-old kid in South Brunswick. He likes to play with toy cars, ride his bike, and he loves the New York Giants. But Joseph faces a daily struggle with tasks and the development of skills that so many take for granted. Joseph has autism spectrum disorder, which affects one in every 110 children in the U.S.

"Things that come so normally and naturally to mainstream children are so difficult for him to learn," said Joseph's mother Rachel Ahern. "Just learning how to play with other kids and how to communicate properly with people are difficult. He's so loving that sometimes he'll go up to a stranger and give them a hug. Other times he won't speak to anyone but his parents."

Autism spectrum disorder (ASD) and autism are both general terms for complex disorders that affect the development of the brain. The disorders typically manifest between the ages of 2-years-old and 3-years-old, according to Autism Speaks.org.

The disorders can be characterized, in varying degrees, by difficulty with social interaction, difficulty with both verbal and nonverbal communication, and repetitive behaviors. Those with autism may suffer from intellectual disability and difficulty with motor coordination, in addition to attention and physical health issues, according to Autism Speaks.

"It's so complicated the way the brain works with autism," Rachel said. "My son could tell you every New York Giant, what position they play and what their number is right off the top of his head. But you ask him what 100 minus 99 is and he'll forget the answer. Neurological issues are just so complicated and nobody knows what causes this."

Part of the difficulty for some parents can be the initial diagnosis, which is so vital because early intervention is crucial in the development of autistic children.

"I had my son later on in life, and when he was young he was very hyper. People in daycare would often ask how come he's not playing with blocks and why is he just sitting by himself," Rachel said. "We were all getting frustrated and I kept wondering why they were picking on my son."

After being directed by South Brunswick Township to the specialists at , Joseph was evaluated and declared eligible for disabled pre-K classes. Before the classes started, Rachel took Joseph to see a neurologist.

"We sat with him for hours and I told the doctor I think my son has ADHD (attention deficit hyperactivity disorder)," Rachel said. "The doctor looked at me and said no. Your son has autism. I thought it was the end of the world and everything came down on me and hit me like a ton of bricks.

"I said it's impossible, he's not showing signs an autistic child would show. But the doctor said Joseph is on the lower end of the spectrum, which is why he's having a difficult time learning, and why the teachers at his daycare were getting frustrated because they weren't able to get anything out of him. Instead of playing with toy cars, he wanted to line them up in a straight line, which autistic kids love doing."

After finally getting an answer to why Joseph wasn't progressing at the same rate as other kids, Rachel had to deal with some of the misconceptions and ignorance of people towards the affects of autism on children.

"It enrages me to hear people say things like your child is behaved so badly, he should see a psychiatrist," she said. "It's awful to hear. Kids on the autism spectrum do need behavioral therapy, but the insurance companies don't cover that expense. The teachers in South Brunswick do offer that kind of thing and luckily they have the knowledge themselves and work very well with these children."

Joseph started attending the pre-K disabled program and began working with district special education teacher Sandra Epstein.

"She is such a wonderful teacher who taught him so much. These kids are so diversified, and some can't talk at all," Rachel said. "My son can talk but he can't focus on the task at hand or sit still. Every child learns differently so they have to sit with each child and figure out how they learn and what works for them."

Joseph attends school in a self-contained classroom with other kids who have special needs so they get individual attention. While South Brunswick does offer an extended school year program during the summer, Rachel said it's often not enough to balance the loss of information that autistic kids can suffer without constant repitition.

"He starts school and it's almost back to the drawing board if he doesn't get enough school over the summer," she said. "All the teachers do so much repetition with him, some he remembers and some he forgets. During the summer he only gets a few hours a day in July. I wish they could do more but the district can't afford it."

Rachel said that developmental milestones like potty training can even be an arduous process.

"My poor son was potty trained in July of the year when he turned 5-years-old, and he started kindergarten in September that year, so he just made it," she said. "That was a task in and of itself that took five years. We finally got it, but it took one baby step at a time to stick with it. But you do it because you're a parent and it's your responsibility to be there for them."

Because repetition is so crucial to the development of an autistic child, Rachel said the South Brunswick School District's program is set up well to foster Joseph's development. He has the same teacher for two years, before moving on to a new teacher for the next two years, and so on throughout his schooling.

"I think South Brunswick's program has helped tremendously because these kids need continuity," Rachel said. "He has a case manager on his teacher to make sure they're doing everything they're supposed to be doing in his individual evaluation process, so the learning is tailored to Joseph's needs. If it's not they hear lots of hell from me, but I have to make sure he's getting what he needs to get.

"He has a lot of homework every night and he hates it, but we give him rewards to do it because that's what works for him. We're slowly taking those away and replacing it with something else, because we don't want him to think there's a reward for everything you do in life."

Joseph is currently two years behind his peers in reading, and Rachel said his comprehension remains poor. But for the parents of autistic children, there are numerous resources on the web and advocacy groups that provide some answers to questions that aren't readily available.

The group Parents of Autistic Children helped provide the Aherns with simple solutions to problems like teaching Joseph to ride a bike. A hook that Joseph's father found online to attach to the bike helped balance it and allowed Joseph to learn the process.

"It was such a heartache seeing him struggle with riding a bike when all the kids in the neighborhood had been riding for two or three years," Rachel said. "After my husband found that hook and held on to it, Joseph learned how to ride in two days. Now he doesn't need it at all. After all the tears and hearing him ask 'why can't I ride my bike like my friends?' It just kills you as a parent to hear him talk like that. He just couldn't get it. But when he learned, it was incredible."

Joseph has been with the same group of peers since kindergarten, which has helped develop a small close-knit community in South Brunswick among parents facing the same struggle.

Rachel said one area of South Brunswick where she'd like to see improvements are in the recreational opportunities for kids with special needs. She said recreational soccer league coaches don't really understand why children like Joseph aren't able to follow everything they're trying to teach, and it's hard to watch her son get yelled at.

Joseph now plays sports through a program in North Brunswick called "Buddy Ball," which provides sports and fitness opportunities to kids with special needs in a low pressure and fun environment.

"Some kids don't talk, others have difficulty walking, so I'm fortunate with my son," she said. "But in 'Buddy Ball,' it's so great to see him running around and hugging other kids, telling them 'I'll help you.' They just need somebody that wants them to have fun and not make a big deal out of the game. I wish South Brunswick had something like that."

April is Autism Awareness Month and will also bring the observance of World Autism Awareness Day on April 2. Residents throughout South Brunswick are encouraged to put a blue light on their porch, or wear blue, to show their support.

"We want people to get educated about autism because early intervention is the key to getting a child the services they need," Rachel said. "When a child gets older, you want them to have everything they need to live in society just like everyone else. If you don’t get early intervention, it will be difficult for them to live on their own."

Even though each day is filled with small battles both won and lost in Joseph's development, for Rachel the struggle is simply a matter of the love she has for her son and the life she hopes to provide for him.

"It's just what parents do. You have to be there for them in the middle of the night when they wake up screaming from a nightmare," she said. "You love them and you hug them. Hopefully you give them the tools they need to survive in this world. You do it because you're a parent and you love them."

For more information on autism and Autism Awareness Day, visit Autism Speaks.org.