For parents of children with autism it is a challenge to not only handle the daily tasks of everyday life, but to also find the right education for their kids. One family in the south Sound believes more needs to be done to give kids with autism the education they need.
On a sunny Spring day in Tacoma, we met with Catherine Young and her son Carter. She said the good days are something she does not take for granted.
“There’s lots of mornings where I’m dressing him and he’s hitting me, and then there’s other mornings where he’s waking me up at 4 a.m. and he’s completely dressed,” said Catherine.
Carter has a moderate form of autism along with unspecified overgrowth syndrome and ADHD, said Catherine. Carter was officially diagnosed with autism just months ago, she said. There were many developmental challenges for Carter.
But Catherine credits much of his developmental progress to the Bonney Lake Pediatric Occupational Therapy Services, and occupational therapist Amanda Saliba.
“We provide a lot of multi-sensory information which helps integrate what we’re doing in therapy,” Saliba said.
He’s made amazing progress. Just a few months ago, Carter could only sit down for three minutes.
“And this year he can sit and work at school for 10-15 minutes,” said Catherine.
Catherine said Carter’s experience in therapy has been very helpful for him. But when asked about Carter’s experience in school, she said it’s been challenging.
She showed us a large binder with many documents inside.
“This is my book of my child,” she said.
Pages and pages of report cards, and doctor’s reports.
“His documentation that says he has autism, is 23 pages long,” Catherine said.
That documentation though, entitles Carter to what’s called an Individual Educational Program or IEP. Both parents and educators meet to essentially form this document, which is essentially a specific blueprint for a child who has special needs.
“Not only do I have the normal two-page report card, I have six pages on his IEP goal,” said Catherine.
The Young’s used to live in Federal Way. And when Catherine worked with Carter’s school on his first IEP, she said she felt alone. But quickly realized she wasn’t. There were plenty of parents of children who have special needs who didn’t know what to do. So, in 2016, Catherine started the Special Education Parent Teacher Association in Federal Way. It was the first of its kind in the district.
“I’ve always felt that the schools need a social worker for families with kids who have special needs,” Catherine said.
Catherine said when Carter was in Federal Way, she was pleased to see an integrated school model.
“You have 8 kids who are special needs and 8 kids who are typically developing in a classroom together,” she said.
Even though the family has moved to Tacoma, it’s been a challenge. Federal Way parents still call her for advice on what to do. And now she’s become a mentor for families all over the south Sound. Before she meets with families though, Catherine asks them three questions:
- Do you have disability insurance?
- Is the IEP working out?
- What would make things better at home and at school?
“You`d be amazed. People have 7 or 8-year-olds who have autism, but their parents didn`t know that they could get respite care,” she said.
So now Catherine acts as a liaison between parents who have so many questions and the schools.
"Autism kids are never just autism. That`s the thing that nobody realizes,” said Catherine.
For Carter, just the simple motion of eating presents challenges. According to Catherine, he only eats four things for lunch and dinner, spaghetti, peanut butter and honey sandwiches, chicken nuggets and macaroni and cheese.
When Carter was a baby, he would get food and liquid into his bronchial tubes. They had to teach Carter how to chew and how move his tongue to get food in his mouth.
“It was like there was a Cheerio and then three hours later, it was still in his mouth,” said Catherine.
So being that Carter only eats certain foods, Catherine asked the Tacoma School District for a microwave so that Carter could warm up his food during lunchtime. According to Catherine, she even offered to buy it.
After not hearing from the district for weeks, Catherine said, Carter just stopped eating at lunch altogether because he got tired of just eating sandwiches.
“We just want to get what our kids need. And sometimes that takes us escalating the situation in unnecessary ways,” said Young.
Eventually, the district installed a microwave. Catherine had to get a doctor’s note to indicate to prove that this was a medical condition.
But she asks, why it even came down to that.
"You know it’s going to be harder for him, but you don`t think you`re going to need to fight with grown- ups to get what he needs,” she said. “This isn’t just a privileged Mom. This is an actual medical need that my child will not eat.”
From a school district standpoint, there are challenges too. Even categorizing autism has changed over the years.
“We used to feel like we have a better handle on the rate of intellectual disability with our students with autism, but I think that has been challenged a bit,” said Courtney O’ Catherine, Special Education Liaison for Tacoma Public Schools.
According to O’Catherine, just recently Asberger Syndrome was recategorized to be an autism spectrum disorder, rather than a disorder in and of itself. The district said it’s important for them to meet with parents of children with special needs consistently.
“They’re the stewards, the parents. So, I think partnership is the number one best way to ensure success for students,” said O’ Catherine.
And in some cases, according to Young, is that there are budget challenges when it comes to finding qualified and willing people to help special need students.
"The scariest thing right now is the emergency substitute teacher situation in the state. You have people who don`t have teaching degrees. And they`re able to teach special ed classes,” she said.
Despite the challenges, Catherine said Tacoma schools are doing a better job of including special needs kids in traditional classroom settings. Overall, Catherine knows there will be roadblocks ahead. Education plans change every year. But she wants other parents to know, they're not alone in this fight.
“I got a really good kid. I got a really really good kid who works so hard and wants to learn and wants to be normal,” Catherine said.
Catherine encourages other parents of special needs kids to be involved with the Special Needs PTA.
The Tacoma School District said they meet with them once a month.