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Spectrum: Autism Research News

Parents battle for children’s mental health services at school

by ,  /  21 September 2016
Selena and her daughter Laney, 8, sit on the porch of their home in Spartanburg, S.C.

Jenny Gold / KHN
THIS ARTICLE IS MORE THAN FIVE YEARS OLD

This article is more than five years old. Autism research — and science in general — is constantly evolving, so older articles may contain information or theories that have been reevaluated since their original publication date.

On a hot summer day in August, Sydney, 15, and Laney, 8, are enjoying their last two weeks of freedom before school starts. The sisters try to do flips over a high bar at a local playground.

“You’ve got to pull your hips into the bar, like you’ve got to kick up like that,” explains their mother, Selena. khn-logo1-100

“I tried to kick! I did this — you told me not to stick out,” Laney says indignantly.

Both girls have been diagnosed with psychiatric conditions — Sydney with bipolar disorder and Laney with a similar condition called disruptive mood dysregulation disorder. (The family asked that their last name not be used, to protect the girls’ privacy.)

School has been a real challenge for them. That’s not unusual for the one in five children in the United States who have a psychiatric condition. They often experience anxiety, difficulty focusing and social challenges. Half of them drop out of high school, in part because many schools don’t manage to meet their needs.

Selena has spent the past eight years trying to get the girls the resources to help them succeed. Like a lot of parents of kids with mental health issues, she’s had to be her children’s biggest advocate.

“It’s definitely a journey. It wasn’t easy,” she says, even though she’s a school guidance counselor herself.

Sydney describes class as “boring, distracting. It’s hard to pay attention. It’s overwhelming.” She struggles to focus or process information, which makes her so anxious and depressed that she often has to leave school in the middle of the day.

She wants to be a rock star like Courtney Love. Every so often, she pretends to take drag from a bubble gum cigarette. But she’s an extremely sensitive child, and school has been a painful experience.

“I used to cry the night before, because I didn’t want to go to school,” she says.

Laney, on the other hand, is a ball of chaotic energy. At school, she often gets frustrated and acts out. Sometimes, she is sent home.

Schools do not all screen students for mental health issues, and the practice varies widely across states. Even if students are successfully identified, many areas lack the community-based mental health treatment options that would be needed to help them. Just 38 percent of youth with a mood disorder such as depression or bipolar disorder receive treatment services. In 2014, the federal government announced $48 million in new grants to support teachers, schools and communities in recognizing and responding to mental health issues. Still, many students’ mental health problems continue to go unidentified and untreated.

When Selena first noticed the girls were having problems, she took them to the doctor. Sydney started taking medication at the age of 7 and Laney at just 4, but it wasn’t a quick fix.

“The brain is complex,” says Selena. “It’s not like you just take a medicine and it fixes it.” It took years to get the girls’ diagnoses and prescriptions right.

Selena says she needed to educate teachers about her daughters’ illnesses. “I really tried to do my homework. I did a lot of research. Obviously I talked to parents online in a support group,” she says.

Schools are starting to better recognize that mental health is key to academic and social success, says Darcy Gruttadaro, director of advocacy at the National Alliance on Mental Illness, a grassroots organization headquartered outside Washington, D.C.

“Kids spend six hours a day in school, and mental health is essential to learning. So schools that are very data-driven understand that in order for some kids to succeed, their mental health needs must be met,” she says.

Nonetheless, schools vary greatly in the degree to which they are willing and able to accommodate mental health issues. “Some are doing a lot and training teachers on how to recognize warning signs and talk to families. And others are doing very little to understand the needs of students and how to work with families,” Gruttadaro says.

Sydney’s and Laney’s public schools were willing to make accommodations — but the girls’ struggles continued. So, Selena transferred both to a smaller charter school called High Point Academy.

Principal John Hurley says he’s seen a growing number of students coming in with mental health diagnoses. The school wants to help — but teachers are not well prepared to handle these issues.

“My training in mental health was one chapter in a book that we covered in one day,” recalls Hurley. Many teachers have experience with attention deficit hyperactivity disorder, he says, but they don’t have the tools to draw on when dealing with mood disorders.

“Because we’re left in the dark, we have to fumble around to figure out what works best,” explains Hurley. “Sometimes you can be wildly successful, and sometimes you can fail miserably and you could have done the exact same thing for two different students.”

That’s a pretty good description of what happened with Laney and Sydney.

Laney started High Point in second grade and, by October, had already begun acting out.

“A lot of the times she didn’t like to write, so … she’d get frustrated and she might tear up her paper, just depending on how she was feeling,” says her second grade teacher, Erica Smith. Occasionally, Laney would also tear up other students’ assignments.

Selena was thrilled when Smith reached out and asked for advice. They started communicating almost daily, sharing tips about how best to reach Laney. They developed an individualized education plan, and Smith had a “safe spot” in the classroom where Laney could go to cool down until she could rejoin the class.

At the same time, Laney’s doctor adjusted her medications to help balance her mood. The solutions worked — pretty soon, Laney was thriving. But Selena knew from experience that what works with one child doesn’t always work with the other.

Selena helped get Sydney an individualized education plan that gave her extra time on tests, fewer assignments and two periods a day with special education teacher Pam Smith, who has a background in mental health.

“I really feel we had everything we could have had that was available to us to meet her needs,” says Pam Smith. “I really feel that we went over and above sometimes.”

But nothing seemed to work. Sydney had trouble making friends and often shut down in class. She kept falling further behind.

“I started realizing it just wasn’t working. I can’t send my child somewhere every day and ignore the fact that it’s having a negative impact on her mental health,” says Selena.

So in March, she pulled Sydney out of High Point and home-schooled her for the rest of the year.

She looked for a therapeutic school for Sydney to attend this year, but she couldn’t find one in her area. So this year, Sydney is attending an online school from home, while Selena works and Laney goes to third grade at High Point. It’s not an ideal solution. Selena wanted Sydney to be in a brick-and-mortar school with other students, but she says she’s had to learn to be flexible.

“You think as a parent you’re supposed to just say, ‘Get up and go back to school’ the next day. And so you really have to sometimes stop and take stock of what’s going on and maybe change the path,” she says.

As for Sydney, she says she is looking forward to studying from home. For the first time in years, she says, she hasn’t been crying ahead of the first day of school.

This story originally appeared on Kaiser Health News. It has been slightly modified to reflect Spectrum’s style.