Local women team up to bring autism awareness to local schools

Jeanette Kendall/ TimesNewspapers
Sandy Valentine sits in her East Peoria home. Valentine has an autistic son named Jack. Valentine is going to speak to students at District 86 schools over the next few weeks because April is Autism Awareness month.

April is Autism Awareness Month and two East Peoria women are teaming up to spread that awareness in some of East Peoria’s schools.

Stephani Erp has a 9-year-old son with autism who attends Bolin School. Sandy Valentine has a 22-year-old son named Jack who has autism.

Valentine said it is not known what causes autism and there is no cure. It is also on the rise. Valentine said that in 1993, one in 10,000 was diagnosed with autism and now it’s one in 68. In 2012-13, there were about 20,000 children receiving special education under the category of autism, ages 3-21, according to the Illinois State Board of Education.

Valentine works for the Illinois Autism Training and Technical Assistance Project and has done speaking engagements in the past at schools. She and Erp decided to revive the awareness talks about autism in East Peoria’s schools.

“Things had kind of gone by the wayside, so I asked the school’s special education director if the school would do some different presentations,” Erp said. “We just wanted to give a shout out that April is Autism Awareness Month.”

During the presentation, Erp said they tell students that kids who have autism are different, but not bad.

“We let them know, even though they may have struggles in certain areas, they are good at other things,” Erp said. “We teach them how to respond to a child that has trouble responding to them.”

Erp said they keep the presentation in simple terms since they are speaking to students in grade school.

Valentine said she shows a book during her presentation that Kate McCormick, a friend 

of her son’s, wrote called “My Friend Jack.”

Erp said in addition to Valentine’s talk, they will ask the students to write a short story if they have or have had a friend with autism. They are also going to hand out pencils, stickers and tattoos.

Erp  said she and Valentine are thrilled that District 86 schools are allowing them to do a presentation.

“Jenna MacPherson, the school psychologist, she’s really kind of jumped on board and really helped Sandy and I with this,” Erp said.

“We put this together rather quickly. Hopefully, next year we are going to have more and have some stations set up,” Erp said.

So far, presentations are set for April 11 at Shute School, April 16 at Central Junior High School and April 22 at Wilson School. Parents of the students are invited to attend the presentations.

“One of the things in addition to the district’s recognition I wanted to mention is that we are encouraging East Peoria residents to “Light it Blue” for autism awareness/acceptance by putting in a blue light bulb in their porch/street lamps. We have about 70 on hand for sale for $2 and will have them at the schools when we do the presentations,” Erp said.

In addition to doing presentations at schools all over the state, Valentine advocates for the rights of families who have children with disabilities. She was in Springfield March 29.

“Illinois State Board of Ed has decided to cut programs, ours (IATTAP) and another few that deal specifically with families, communities and their schools. We were there presenting to the media and the governor that we need to keep this project going,” Valentine said.

“It’s ridiculous because the federal money is a million dollars and the state provides $100,000, so it’s more than 90 percent paid for by the feds. We can’t understand why this happened so abruptly. Our specific grant has been around for 16 years,” Valentine said.

For the past 14 years, Valentine has worked part-time as a community partner with IATTAP. In addition to traveling to schools to educate students and parents, she meets with families.

“I love going into schools. It’s amazing how receptive and open our children are,” Valentine said. “We talk to families and help them develop a team that are going to surround this kid — and these are children birth through 21. We work with the schools, the community and the families for about a year-and-a-half. Our success rate has been amazing.”

Valentine knows firsthand how important it is to have a team of support. She said she first began to notice something was different with her son when he stopped smiling as a baby. Initially, she thought he had hearing loss. A doctor who provided the autism diagnosis gave Valentine the best advice ever, she said.

“The doctor said, ‘You bombard this kid with people, places and things,’” Valentine said.

Both Erp and Valentine said their biggest challenges are not in raising a child with autism, rather it is in educating the public and changing people’s perceptions. Valentine said she wanted her son, who does not speak, to have friends and not to be bullied. 

“When I was in school, the kids with disabilities went into the elevator and you never saw them again,” Valentine said.

When Jack was in third grade, Valentine began going into the schools to speak to students.

“I think the more the kids are aware of it and can understand it, the better,” Erp said. “It’s not raising him or teaching him things, it’s teaching the world. They just struggle with communication and how to respond. They struggle with eye contact and how to respond.”

While Jack was in high school, Valentine said she asked educators if there were any students who would want to do a project and work with her son. She said 48 students volunteered the first year. 

“We continued this until he was 18. We went through 184 students at East Peoria High,” Valentine said.

One of the students brought her boyfriend Jason Gambill with her while she visited Jack. Gambill is now the District 86 Superintendent of Special Education.

“It made a huge difference in Jack’s life. He’s made a pretty big impact on people,” Valentine said.

Jack graduated in 2009 and now works part-time at EPIC, formerly PARC.

“He has chores and things he has to do, but he still needs help,” Valentine said.

Valentine said those with autism have a lot of anxiety and about 50 percent cannot speak. 

“Autism is a socially debilitating disorder where they do not know what to say, or they can’t say it,” Valentine said. “Imagine you don’t know what’s going to happen in an hour to you. He lives this 24/7.”

Valentine said her son is sensitive to sounds and smells. Erp said some autistic children have diet and emotional issues, but she said she does not have these struggles with her own son.

“From my personal experience, he is not my struggle. It’s educating the public about him. He’s super sweet and a great joy. I get a little emotional about it,” Erp said.

As most parents want for their children, Valentine said, “We want them to be happy and independent.”