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As school starts, homework is key for parents of students with special needs

Jessica Levesque knows the excitement and emotional bumps and bruises that can come with the start of a new school year.

She struggled through kindergarten, got bused to other towns for BOCES classes through much of elementary school and asked to be held back a year in seventh grade.

“Middle school was a toughie. I’d been bullied before but you had kids yelling out and calling us the ‘R’ word,” she said about her and her special-needs classmates.

It wasn’t easy for Jessica, 22, who has high-functioning autism. Still, she graduated from Kenmore East High School three years ago with help from a determined mother and others – and continues to flourish, and dream, as a young woman.

“It’s not easy for a typical child, let alone somebody who has kids with a disability. It can be exhausting,” said Levesque’s mother, Aimee, a single mom who teaches English at SUNY Buffalo State and is working on her doctorate in the Sciences of Learning Program at the University at Buffalo.

Aimee Levesque leaned on family, friends and teachers, administrators, support groups and People Inc. in her quest to help Jessica make the most of her school years.

Parents tend to play the most important role for their special-needs child during those years, said Elizabeth Assad-Penner, an educational advocate for People Inc. who works with about 150 families of those with special needs at any given time, helping them maneuver school systems that can seem daunting.

She, the Levesques, and Kerrie Daniels, whose son Michael, 6, also has high-functioning autism, gave the following tips to parents of special-needs kids as their families step into the new school year.

1. Understand your child’s challenges – and abilities Each student with special needs in a public or specialized school is assigned a Committee on Special Education, which tends to be made up of a child’s parent or parents, the district special-education director or designee, a classroom teacher, classroom special-education teacher, principal or other administrator, and often specialists that can include a physical, speech or occupational therapist. This committee meets in the spring or early summer, before the start of a new school year, to develop an Individualized Education Plan, or IEP, which sets personal educational goals.

Assad-Penner urged parents to become very familiar with the IEP at the start of the new school year, treating it as an educational blueprint for their child.

“This will give you an idea what goals they’re working on,” she said. You can compare your child’s work with those goals. Parents generally have a very good grip on their child’s abilities by the time their kids are in middle school and high school, Assad-Penner said. “It can be difficult to find the balance. We don’t want to crash any dreams for their child” but there are limitations with every student.

Discoveries of what is unlikely – and, more importantly, what is possible – take place over time, Aimee Levesque said. “Just like every other student, your child will have goals and aspirations, so encourage them to set them,” she said. “If your child is unable to articulate goals to you, then creating these goals may become your responsibility, so do your homework.”

2. Communication is key This holds true for the special-needs child, his parents and those on his educational team.

“A parent knows their child better than anybody and all of a sudden you’re sending them away for the day,” Aimee Levesque said. “But I think you really do have to push for things. Teachers are busy. They have their students and they have to get things done, but they want you to be part of the process. The teachers I’ve dealt with in recent years want parental involvement, and they need it. I thought it was necessary for Jessica’s success. If I don’t know the teacher or we’re bashing heads, we’re not going to communicate. That line needs to be open.”

Assad-Penner encouraged parents to reach out to classroom teachers with an email early in the school year that outlines particular personality traits and needs for their child and gives a sense of how their child learns and behaves best. That should be followed up by a classroom visit. “The student is going to be in the district for a long time,” she said. “If there is concern, set up meetings with school staff.”

3. Expect challenges Hard questions kept Daniels, of Williamsville, up in the middle of the night after testing suggested her oldest son had fallen onto the autism spectrum: “Will he make friends? Will he get picked on? Will he have a spouse? Will he be happy in life? It feels like he has everything against him,” she said as tears fell, “but when he gets that look on his face – ‘I can do it!’ – you’re just proud, very proud.”

Michael was 3 when first tested. Now 6, he will start first grade Tuesday in a typical classroom at Country Parkway Elementary School after spending preschool in a specialized program.

“When he was younger, I wanted to put him in a bubble,” his mother said. “To me, that’s not being his parent. Being a parent is saying, ‘You can do it!’ Give him a kiss and push him forward. It’s hard to watch but to see him understand he’s being successful makes it all worth it.”

Parents should do what they can to smooth the waters for their children during the school year. If it gets choppy, “try to work it out,” Assad-Penner said. “You want to be able to keep a child in the least restrictive environment, so we’re going to do everything we can, give them the services or any type of combination of things they might need, for them to be successful.” If the first couple of weeks are particularly trying, it may be a good idea to reach out to an educational advocate like Assad-Penner or call on your child’s Committee on Special Education to meet. “We don’t want to remove the child from their current situation,” Assad-Penner said, “but if it’s really not working, we want to take the next step.”

Parents who feel overwhelmed should feel free to display emotions with advocates and other close supporters, Assad-Penner said, “but you should not be overreacting” with teaching staff or in front of your child. That’s the time to be calm and reassuring. After the school day, she recommended, ask your child who she met that day, what she liked most about the day, what her teacher was like.

“I was more nervous than she was at the start of school, but that’s normal,” Aimee Levesque said. “It can be even more challenging if you’re changing staff. It can also be a little dangerous if we expect the same things from teacher to teacher. We all approach things differently. A parent can be nervous, but we have to be open-minded to new teachers, new students and new experiences.”

4. Keep records Taunting and teasing are fairly common in a school setting – and should be nipped in the bud. “Always document if the child says there was an issue of bullying or harassment in school,” Assad-Penner said. “You need to follow up right away with the teacher, and the principal and document things in writing so you make sure there’s follow-up. You really need to start a paper trail.”

Daniels keeps with her a binder she started when Michael was first diagnosed. Paperwork from doctors, psychologists, social workers and teachers have been added in abundance to the file folders in it. “If they’re going to say, ‘I need paperwork from two years ago, bam, I’ve got it right here. It has taught me to be very organized, which I’ve never been. You have to be.”

5. Become aware of available support “There is a lot of stuff out there and life gets busy,” Aimee Levesque said. “We hope somebody’s going to give us the answers and the reality is that’s not going to happen. You have to be proactive.”

As Daniels and her husband, Patrick, began to understand the path their family would take after Michael’s diagnosis, the couple approached People Inc. for Assad-Penner’s services and also reached out to local support groups. They discovered a parent support group at Women & Children’s Hospital (call 878-7600 or email jmertz@kaleidahealth.org for more information) and learned that Explore & More Children’s Museum in East Aurora has an Au-Some Evening for children with autism once a month (the next one runs from 5:30 to 8 p.m. Friday).

“I needed to feel that somebody else was in our corner and standing up for my son,” Daniels said. “I’m his mother. That’s my job. But to have somebody else say, ‘Don’t worry, we’re going to get through this,’ you can kind of breathe.”

Those who stand ready to help parents navigate the sometimes complex school climate include People Inc. and other agencies, as well as school district special-education parent-teacher associations and other support groups. “When we reach out for these resources,” Aimee Levesque said, “wonderful things happen. I got involved with the special-ed PTA because I wanted teachers to know I wasn’t coming in with all these demands. I wanted to work with them. When parents are empowered, it makes administrators’ jobs easier.

“At school age,” she added, “building teams is key because later on, when your children are transitioning to adult support, they’re going to need to form a circle of support to be successful.”

Jessica’s circle included her extended family; her autism doctor; classroom autism specialist Mary Ruth Morris, who followed her throughout her elementary and secondary school years; and other educators. “You need to be proactive, know what’s available and sometimes, unfortunately, you have to fight for your child,” her mother said. “When the district sees that you’re more involved, they’re more responsive.”

6. Be a role model Aimee Levesque has tried to be a good listener, vigilant ambassador and strong advocate for those with special needs since her daughter’s journey began. She went back to school when Jessica started kindergarten. “I wanted her to see that she could also learn,” she said. “What I think makes everybody beautiful is that we all learn differently.”

She has been an independent disability consultant for 20 years. She headed the Ken-Ton Special Education PTA for part of the time Jessica was in the district. Now she’s on the New York State Developmental Disabilities Planning Council, helping to shape policy recommendations for those with special needs.

Jessica was named prom princess at her senior prom – “That was amazing, unbelievable,” she said – and spent part of high school interning in the attendance office because of her work ethic. She received a Student of the Year award when she graduated with an IEP degree. She also was a member of the Queen City Roller Derby squad for a while.

After graduation, she discovered People Inc.’s Art Experience program last year. “When she walked in, she said, ‘This place looks like my brain. This is where I should be,’” her mother said. Jessica also leads two regional advocacy groups for individuals with special needs.

She tends to spend her days drawing, painting and making jewelry. She has starred in her own YouTube videos and loves to act in Unique Productions, a theater company her mother started for those with special needs.

Life is good.

“Have fun. That’s what you’re supposed to do,” Aimee Levesque said. “When you open up possibilities, it’s going to open up brand new avenues.”

More back-to-school stories • Remember good sleep in the new schedule, Page 10 • Different kids have different reactions to the transition, Page 13 email: refresh@buffnews.com