Advice of mother with autistic son, ‘trust your instincts’
Like many boys, Joshua Sangster, 7, a first grader at John Brown Francis, enjoys riding his bike and spending time with family. He also likes anything having to do with numbers and counting.
This weekend, Joshua and his loved ones will be doing something else he likes: Taking part in the 11th annual Imagine Walk and Family Fun Day for Autism, to be held Sunday at Goddard Memorial State Park beginning at 9 a.m. The walk, scheduled during Autism Awareness Month, is followed by free activities designed for children and teens with autism, such as a reptile show, karaoke, obstacle course, bounce house, face painting, arts and crafts, and more.
According to WebMD.com, autism is a pervasive developmental disorder that often interferes with a person’s ability to communicate with and relate to others. A survey released last month by the U.S. Center for Disease Control revealed that it is on the rise in America, as one in 50 children is autistic. This number is up from the 1.16 percent prevalence reported in 2007, which is about one in 86. The survey also indicated that boys are nearly four times more likely to have autism than girls.
Joshua was diagnosed with autism a few months ago, but his mother, Keri Sangster, said she knew all along. As the mother of two other children, and as someone who used to work at a day care, she noticed he showed many symptoms.
“All he did was stare straight ahead,” Sangster said. “I would take keys and shake them in front of his face and he just looked right through me. He just lay there or sat there. He didn’t walk or crawl. The doctors, and everyone else, told me, ‘Just leave him alone. He’s fine. Give him time.’”
But Sangster didn’t listen. It wasn’t until he was 6 months old during a routine checkup that a nurse agreed with her. At that point, she began bringing Joshua to specialists, including occupational and speech therapists, as well as nutritionists.
“We did everything,” she said. “And when he looked at me for the first time at 7 months old, all of the comments throughout the house were, ‘the baby’s finally here.’”
Joshua slowly began making progress, but he had a long way to go. As he got older, he had little to no trouble talking to adults, but he still had issues interacting with other children. He also had difficulty gaining weight.
“Up until he was 4, he wouldn’t even look at another child,” she said. “The minute you put him in a setting with his peers, he shuts down. He’ll walk away and tell you his heart beats fast. He just really started coming out of that this year. He’ll walk up to kids and say, ‘Hi’, and voice an opinion about something. Before that, we literally had to feed him Reese’s Peanut Butter Cups.”
While she knows it sounds a bit strange, Sangster said feeding Joshua his favorite candy encouraged him to improve, as well as gain some much-needed weight, as he was at only 5 percent on the charts for weight.
In determining the weight of a child, percentiles rank the position of an individual by indicating what percent of the reference population he/she would equal or exceed. In one year, Joshua went from 5 to 90 percent.
“What if I had listened to all those doctors and people who told me to stop stressing myself out and just let him be a kid?” said Sangster. “If I had, he may not be where he’s at today.”
Sangster said she’s thrilled that Joshua reached a personal milestone at the beginning of the school year: He rode to school in a big yellow bus with the rest of the neighborhood children for the first time.
“I felt excited,” he said, with Sangster adding, “We don’t do the little bus anymore.”
Prior to this year, Sangster said Joshua had to ride the “little bus” to nearby schools that had proper classes for him. To her relief, John Brown Francis initiated a primary self-contained classroom at the school this year.
For half of each school day, Joshua is in the self-contained classroom with a special education teacher and seven other special need students. The rest of each day, he’s with the rest of his classmates for subjects including gym, library time and music.
Since April is Autism Awareness Month, coupled with the fact that autism is on the rise, Sangster and Joshua said they want to educate more people about autism. For the second year in a row, they hosted a lemonade stand to raise funds for the walk.
While he raised $320 last year and donated the funds to help programs and activities at the Groden Center Day and Residential Programs, a Providence-based location that provides a broad range of individualized services for people with a variety of disorders, he raised more than $400 this year. Proceeds will be donated to The Autism Project, a local collaboration of parents and professionals dedicated to developing a comprehensive system of care and resources that meet the needs of children and adults with autism and their families.
“It’s all about awareness,” Sangster said.
Joshua’s father, Paul, said taking part in the walk and lemonade stand benefits Joshua, too. It exposes him to more children who have autism and shows him people care.
“It helps Josh become aware of the support that’s out there and lets him contribute directly to the cause,” Paul said. “And he has such a good time.”
For Sangster, the walks give her the opportunity to meet other parents raising a child with autism. She also shared some advice for parents who have children that are developmentally delayed.
“You need to be proactive and listen to your gut feeling,” Sangster said. “Never let anybody make you feel that you are wrong for what you feel. It’s your child and you have to advocate for them. I’m very lucky because Josh has been amazing.”