Waiting lists, IEPs, ESAs, fear: Here's what it's like to find a local school if your child has autism

Arizona Daily Star - 8/9/2017

Aug. 09--Holding a round disc, Greyson Batz pretends to drive a bus. The passengers are his teacher and another student.

He turns the wheel and even bounces in his seat.

"Where are we going?" Maria Serrano-Lopez asks her students at Intermountain Academy, a private school for children with a diagnosis on the autism spectrum.

"Toys-R-Us," replies Greyson, who is 8.

"Are you happy?" Serrano-Lopez asks.

"Yes!" Greyson says as he waves both hands in the air, beaming.

When the imaginary bus stops, Serrano-Lopez tells the kids they need money to purchase a toy.

"How much do you want, Greyson?" she asks.

"Five," Greyson replies.

"Count with me, 1, 2, 3, 4, 5," Serrano-Lopez says as she places coins in Greyson's hand.

Greyson counts along, as he unknowingly receives a math lesson.

Imaginative play was a milestone Greyson never reached as a younger child.

"When I got him, he wouldn't play," Serrano-Lopez said. "He wouldn't touch a toy, now he does. He was really in his own world, but we guided him to do this."

Through games and repetition, Serrano-Lopez taught Greyson to imitate without forcing him.

"I led him to see how I was interacting, then one day he started playing with dinosaurs," Serrano-Lopez recalled. "For him to pretend play, that's amazing."

Autism in Arizona

There are no specific numbers for Tucson, but to illustrate how many families with children on the spectrum are searching for schools -- Intermountain Academy has a waiting list of 200 children.

Though the school plans to add two classes per year until it reaches its full capacity of 120, it still won't be able to accommodate that entire waiting list.

To help fill the need, Intermountain Academy hopes to expand to another campus in the future, said Paul O'Rourke, the school's director of communications.

Tucson Unified School District, Tucson's largest public school district, has 490 children with autism enrolled this year.

For a bigger picture, in 1975, 1 in 5,000 children were identified as having autism spectrum disorder or ASD. Now, that number is 1 in 66 or 1.5 percent of 8-year-olds in Arizona. According to the Center for Disease Control, that percentage is about the same as the national average.

Of those children, boys are four times more likely to be identified as autistic than girls, with white and black children more likely to have autism than Hispanic children.

"There are definitely more students identified as being with autism," said Maura Clark-Ingle, director of exceptional education for TUSD. "Students are identified at a younger age...we're really excited about that because we now know students that are struggling and do have autism or are on the spectrum can get services earlier instead of waiting until they're older and have had trouble in school."

Public school

Autism is often first spotted in school when a child is struggling with language, social engagement and play.

"Oftentimes students with autism have something they're very interested in -- trains or cars -- so they can talk a lot about an object, but to have social conversations can be very difficult," Clark-Ingle said. "We have a lot of parents who say 'I just want them to say 'I love you Mom.'"

Once a student is screened and identified as having autism, an IEP (individualized education program) meeting is planned with a team that typically includes teachers, exceptional education teachers, a psychologist, the principal and parents to discuss the child's needs.

"The programs that are developed at the IEP meeting are so individual because each student needs something different," Clark-Ingle said. "That's the beauty of having the team process. It's not a cookie cutter process."

Services discussed at the meeting include speech and language therapy and behavioral and social support. The IEP meeting lays out what a whole day would look like for the student.

"What does this student need to be successful and to really flourish," Clark-Ingle said. "Not to just be OK. We really want them to flourish and learn skills they need in school and we look at the child as an adult and what kind of social skills, self-help skills will they need to be successful and independent when they grow into being an adult. That's what public schools do well."

The first goal of TUSD's exceptional education program is to give students access to their typical peers in the general education population. Self-contained classes are available for children with more significant needs.

"We don't want them to feel like that self-contained class is their forever home," Clark-Ingle said. "Our goal is to have them in general-ed as much as possible because we know that's where great learning takes place."

Angela Nelson's 11-year-old son, Drake, has been in public school since kindergarten and he had a mostly good experience, often excelling in math and science.

"School itself was good," Nelson said. "Kellond had some very caring, dedicated teachers and staff to guide him. And the general-ed kids really took the 'be kind' motto to heart and accepted Drake even though he's different."

That being said, the therapy he received was limited. In his IEP he was scheduled to have 90 minutes per week for speech, but often he only went for 60 minutes, Nelson said.

"It simply wasn't enough time to modify any speech or behaviors, so Drake did speech and behavior therapy outside of school," Nelson said. "OT (occupational therapy) wasn't offered to Drake since his gross motor skills weren't an issue anymore after years of therapy. He still needed OT for his fine motor skills but again we did that outside of school."

Education-wise, Drake excelled and was asked to help other kids on projects. He was also one of the first kids to be included in the fourth-grade GATE program for gifted children. His mom said he did well in all of the subjects and projects he was included in.

All TUSD schools are equipped to assist students with autism. However, Clark-Ingle said Sewell and Wright Elementary Schools, as well as Tucson High have particularly good exceptional education programs.

When choosing a school for a child on the autism spectrum, parents should make sure the school can address the needs of their particular child. For example, parents of a child who has meltdowns might ask if there is a safe place for their child to go if they're losing control; how the school will respond when a child loses control; and how the school is going to help their child go to college, said Mary Kirpes, a mother of two grown sons with autism, author and former TUSD exceptional education teacher.

"They need to be able to say 'I'm losing it.' I have to go. And they need a place to feel safe," Kirpes said. "If they talk about punishment, punishment isn't always the answer. They need to be made aware they did something wrong, but it's out of their control...The right thing is, 'We will work at calming him in a calm voice, helping them understand themselves."

Parents should ask about the service delivery model -- what the child's day will look like, so they know what kind of classroom their child will be in, Clark-Ingle said.

Also, they should ask the teacher what his or her philosophy on working with students with autism is, Clark-Ingle said.

"I also think for a student with autism, it's really important to get gen-ed, so 'What kinds of accommodations will you provide to my child's academic day so they can be successful in third-grade math or third-grade reading?' Clark-Ingle said.

Teachers should figure out what inspires each child with autism in order to teach them, Kirpes said. That's true even for kids who are severely challenged by autism.

"If someone is really into astronomy, pull them in with astronomy. No matter what the course is, you can do it." Kirpes said.

Even with all of the support, parents of children with autism sometimes worry what it will be like for their kids after elementary school.

Up until second grade, Greyson attended a public TUSD school, but his mom started to get nervous thinking of the higher grades.

"It's not like he was receiving a horrible education in TUSD," Amanda Hinton said. "I was nervous about what was coming the year after... He's not someone that inclusion worked for. He has some behaviors that hurt himself or others, so because of that I was very anxious about making sure he received the appropriate therapy for what he was dealing with."

There's a saying in the autism world: "If you've met one person with autism, you've met one person with autism." Meaning, the autism spectrum is very wide and no two kids are the same.

Southern Arizona parents looking for programs that work best for their individual child have more options now than they ever have -- public, private, online and home school.

Private schools

Intermountain Academy, on Tucson's west side, was started four years ago for children in grades K-12 who have an autism diagnosis, as part of its parent organization, Intermountain Centers.

Class sizes are kept small, with only about 10 students per class and a teacher-to-student ratio of 1-to-3, said O'Rourke, the school's communications director.

Intermountain Academy prides itself on being the only school in Tucson specifically for students with autism, although at least one other serves kids with autism.

The school is also accredited, which means it meets or exceeds certain standards of educational quality and it assists other schools in determining acceptability of transfer credits. Intermountain Academy is accredited through AdvancED Accreditation Commission.

When Hinton heard of Intermountain Academy, which focused on Applied Behavior Analysis or ABA therapy, she thought it would be a good fit for her son.

ABA is the "best practice intervention for autism," said Kyle Lininger, director of the school.

Though some critics say that ABA therapists are too focused on getting rid of behaviors that might bring the children emotional comfort.

"The difference between ABA and other disciplines is that it focuses on behavior (what people do and can be observed by others) instead of their inner mental world," Lininger said. "It uses scientific laws of behavior that have been experimentally confirmed, and it uses very clear instructions that can be replicated by most anyone to specify how to change behavior."

Children who attend Intermountain Academy also have access to behavioral therapy in school as well as in their homes, Lininger said.

"A big piece is outpatient services, so we're serving people in the community in the cultural and environmental context in which they live...We get to serve people in their homes, so unlike traditional schools -- these kids are getting the same services they have at school translated into home," Lininger said. "We give support with the hope they can transition into less restrictive settings or a general education setting."

Since attending school at Intermountain Academy, now-9-year-old Greyson's behavior has improved dramatically. And his mother, Amanda Hinton, has peace of mind knowing she doesn't have to worry about him at school.

"I know here the teachers are supported because the staff is supported, therefore everybody has our children's best interests at heart. I feel safe here," Hinton said. "I feel like he's not gonna be lost. It's not 'Oh well, Grayson doesn't like to do math and he hits, so I'm just gonna put him over here.' They're gonna challenge him and work through these challenges even though they might get hit or scratched on a daily basis."

The small class sizes and individual attention contributes to that.

"There's a statewide push to get kids more included," Lininger said. "But, what happens when you include someone who needs one-on-one support with a class of 40 kids...They're not gonna be successful...We build their skills and never exclude them from any activity... Even if you're with typical kids, you're going be excluded at different times of the day."

Each school day includes musical therapy, physical education for an hour, math, reading, language arts as well as specific programs catered to social skills. The clinical focus is brought to the table as needed, Lininger said.

The school's before- and after-school program was also something Hinton needed since she works full time. She said Greyson tried an after-school program with "typicals" but it ended badly with someone sitting on Greyson to restrain him.

"He's a very sensitive kid. He doesn't like hurting people, so when it happens he's a little destroyed and as a parent, it kills ya," Hinton said. "You just want what's best for them. He was going into third grade and I was worried because I knew it wasn't structured, which is the kiss of death for Greyson."

According to Lininger, about 85 percent of people on the autism spectrum are unemployed. To combat that, Intermountain's high school program is also targeting work skills.

On the east side, a group of parents took action when the private school their children with autism were attending closed in December 2013.

"I couldn't bear the thought of sending her back to public school," said Jennifer Moore of her daughter -- who is now 15 and had been in public school through third grade. "It was fine until it wasn't. Then it was a nightmare. Her special-ed teacher went on maternity leave and in her place they put an aide and she wasn't really qualified and didn't have the tools necessary to work with my daughter. She had this personality that was like, 'don't cross this line' and my daughter is like, 'I'm gonna put my toe over the line.' It went from nice behavior to being out of class in three weeks."

Thanks to Arizona's Empowerment Scholarship Account funds, Moore was able to put her daughter in what was then called the Abbie Loveland Tuller School and hire an aide to be with her.

Families can apply for state money also known as ESAs to help pay for private schools. For children with special needs, the money can be used to help pay for vocational or life-skills education, psychological or education evaluations, assistive technology rentals, braille translation services and more.

Awards for special-needs children range from $3,000 to $33,500 with an average award of $18,971.

"By sixth grade she had a best friend and was having sleepovers, and as a parent with a child with autism, those are things you think your child will never have," Moore said.

When Moore found out the school she loved so much was going to close, she and a few parents got together to take action.

One of the parents held a 5013c called Arizona Center for Autism, a non-profit organization which focused on helping children with autism through therapeutic educational services. Now it is called the Arizona Center for Autism doing business as the Abbie School.

In January 2014, the new school opened its doors.

"I think it's really important for public school to be strong, but I think there need to be other options," Moore said. "Kids with special needs need choice...I'm not saying we have it all figured out for every child, but she (Moore's daughter) needed small. She needed flexible. She needed peaceful. And she knows she's different, so being with all the other kids was really stressful for her. She didn't want the support they were gonna provide because that meant looking different. Here everybody is different. They have their own idiosyncrasies."

There are 34 students enrolled at the Abbie School in grades two through 10 with a student teacher ratio of 8 to 1. There's room for six more students this year.

The school anticipates having its first graduating class in 2020.

As of right now, Abbie School is not accredited, but it is something the administration is working toward.

Students take regular academic classes as well as electives such as photography, drama, orchestra, student council and home economics.

"A lot of kids come here and are then able to transition back to public school," said Liz Gallagher, the head of the school. "They just need confidence. They find their passions. It's nice because when they go back to public school they try different clubs."

While the Abbie School takes kids with an assortment of special needs, two-thirds of them are on the autism spectrum.

Now that Drake, 11, is advancing to middle school, his mother, Angela Nelson, decided to send him to the Abbie School rather than continuing through the public school system because she worried about bullies and things like transitioning from class to class.

"All through elementary school Drake has only needed to transition from one classroom to another," Nelson said. "It takes him at least 10 minutes to center himself. In middle school, he'd have to do that six times a day, adding up to a lot of time and potentially missed classwork. Abbie School transitions, but they have accommodations if he gets out of sorts."

The school invited Drake to attend a half day to see if he liked it and if the school was a good fit for him. And they helped his mother apply for ESA money to pay tuition. Drake was awarded enough money to cover the $22,000 tuition.

Most students at The Abbie School and Intermountain Academy qualify for ESA money and other funding.

"We try to work with them to get funding," Moore said. "We have a lot of low-income families. Families are trying to juggle kids with special needs and sometimes there's medical situations involved. There's a lot of stress in the home life so we try to help as best we can with all of that...Most everybody has funding and through tax credits we've been able to meet the deficit."

Home school and online school are also options

Ciara Martinez's daughter, Isis, was two when she stopped talking.

Martinez took her to several doctors before receiving an autism diagnosis. Further genetic testing found she has Rett Syndrome, a rare genetic mutation affecting brain development.

Isis is 7 now and nonverbal.

The family lives in Marana and there are no private schools for kids with special needs nearby. Martinez said public school was not an option for them.

"They'd want her in a self-contained class which is K-6 and we wanted her included," Martinez said. "We wanted her included in regular-ed classrooms and they wouldn't work with us on that and I knew it would be a fight...I'm not willing to go down that road. It'll be a heartbreak for me."

So Martinez applied for ESA money to purchase adaptive equipment and hire a para professional, or teacher's aide, so she could homeschool her daughter.

Home school is going well for Isis.

She's starting second grade this school year and is about one grade level behind, her mother said.

Isis is able to communicate through a TOBY communication device -- a computer-based tool that uses lasers to connect with her eyes. So if she gazes at a certain picture for a few seconds, the computer says the word out loud.

She uses the device to do math, reading, learn colors and communicate.

"She's doing really well with it, actually," Martinez said.

When Isis gains more independence, her mother says she may consider public school in the future.

"When she's at a level I know she doesn't need as much help from the school district, then maybe I'd be willing to have her go to public school," Martinez said.

At 9 years old, Brandon Sosa felt like he didn't belong in this world anymore.

His autism made it difficult for him to communicate and an overcrowded classroom in public school made it impossible for him to learn.

His mother gave him an online test and found that he had regressed in his math and reading skills. He was coming home with bruises from biting himself because of the stress.

"He would come home with a notebook full of drawings, no homework and nothing learned," said his mother, Victoria de Sosa. "Brandon is extremely smart, but it's also difficult as parents because we didn't know how to support him. We went to every therapy and repeated it every day at home and even though they didn't give him homework, I gave him homework."

At the end of the first semester of third grade everything came to a head for the Sosa family.

"In third grade I had trouble communicating and I didn't understand why others were mocking me, just that they were and it came to a climax," Brandon said. "I came home one night with words that some kids had said to me. Repeating them I had said that I don't belong in this world...I may not have been able to communicate well, but I was able to understand for the most part. That was put very blatantly for me and that was hard."

That's when Victoria had to take action. She spoke with one of his special education teachers and he confirmed that Brandon was in fact being bullied by students and sometimes mistreated by other teachers. He told her about Arizona Virtual Academy, an online public school system.

"I asked Brandon if he wanted to go back to school and he said no," Victoria recalled. "And I said, 'You don't have to. We will find a school and this will be a world where you belong. So no worries. We will work it out.'"

The Sosa family enrolled Brandon in the online school and never looked back.

"Our first goal as parents was to raise his self-esteem," Victoria said. "To believe in himself and realize his own worth because everything stems from that...and when I spoke to teachers and counselors at Arizona Virtual Academy I said he may not get the best grades, but that's not our goal. They were very open. They said he would be able to move at his own pace and that's what we did and as he had successes he believed in himself and realized his own worth. He's brilliant and has a lot to offer."

Arizona Virtual Academy provided a loaner computer, books, supplies to do chemistry labs and artwork for school at no cost. Lessons were done in real time with a teacher on the computer and work was done at Brandon's own pace. If he needed extra help he was able to ask the teacher directly.

Brandon is 18 now and graduated high school in May. When he took his SAT he scored 1440. And he earned a 32 on the ACT.

He is attending the University of Arizona this fall to major in physiology, hoping to help other kids with autism and to help those without autism understand the disorder better.

Over the summer, he attended the New Start summer program at the UA to learn about college life. As part of the program, he took two classes -- leadership and anthropology. He got an A in both.

"They were not easy at all," Brandon said. "But, I really enjoyed them a lot...

Over the past few years I started sympathizing with others who have gone through similar experiences I have because of my autism. I wanted to help them and I decided to look at my strengths and determine the best way to help them and I look at different qualities. I am patient. I am analytical. I want to help a person directly instead of just research. I decided to go into medicine and I believe I'd like to work in the field of neurology. The study of the brain. I feel that would be the best way to help others like me and help others understand people like me."

After years of struggling and being told Brandon would not excel, his parents are excited for what his future has to offer.

"Looking at him when he was in Pre-K to second grade and knowing now he's in the UA with the highest Wildcat Excellence award... He has earned scholarships. It is really a remarkable thing for us to see and I think having that online school was the foundation."

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Angela Pittenger -- This Is Tucson

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