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The extra layer of back-to-school anxiety when your child has special needs

The author’s 6-year-old son swims in Lake Michigan this summer. “I want him to remember facing that open water and diving fearlessly under the current when he gets overwhelmed at school or when someone suggests he isn’t good enough,” she writes. (Jackie Spinner)

When my son’s new Black Panther backpack came in the mail a week or so ago, I didn’t make a big deal about it. I simply hung it up near the smaller one he took to kindergarten last year. At some point in the coming days before school starts, I’ll move the old one to a closet and casually point out the new one.

Like a lot of children with autism, my son does not like change, and the transition to a new grade is a big one. Whenever I bring up the name of his new first-grade teacher, he asks about his former teachers. Each time we drive by the school so I can point out he will enter through a new door this year, he asks why he can’t go in the same door he’s entered the past two years. “Because you’re a big boy now,” I remind him. “I don’t want to be a big boy,” he tells me.

I am not the mom in the social media video doing a dance because it is time to send my children back to school, although I will be grateful I no longer have to find extra child care or figure out how I will get my work done with my two young sons at home. On the first day of school, I will not be in a swimming pool with a drink in my hand. I will have my mobile phone next to me while I return to my own classroom to teach and will hope and pray I don’t get a call telling me my first-grader bolted because it was too noisy or crowded, or he refused to go to a new bathroom or lashed out at someone who startled him — or worse — made fun of him.

One of the joys of summer, for both me and my son, is the five weeks he spends at an autism day camp in Philadelphia. He has attended Camp Kinney at St. Joseph’s University since he was 3. Every year when the last day comes, and it is time for the camp talent show, I find myself in tears. Even though I know my son should be mainstreamed for school, which he is, I relish these weeks when I can surround him with people who understand and celebrate him for the amazing child he is. I don’t brace myself emotionally to read the notes about his day at camp as I do when he is in school. I know even when his camp days are not perfect, he will not be judged — or disciplined — because he is autistic.

In the summer, my son does not have to fit a mold, and as a result, he flourishes. A few weeks ago he swam in Lake Michigan for the first time, and I saw my little boy so strong and independent. I want him to remember facing that open water and diving fearlessly under the current to swim when he gets overwhelmed at school.

I am not alone in my anxiety over back-to-school. This is an especially hard time of year for all parents of children with special needs. We are cutting tags out of clothes, filling out forms, buying special shoes, negotiating bus routes and trying to determine the gaps in services for our children. That is not to diminish the anxiety of parents of typical children. Many parents worry about the first days of a new school year, about cyber bullying and peer pressure, about racial inequality and adequate resources in public schools, about whether their child will fit in. It is fun to laugh about our freedom as parents on the first day of school, and it may be a well-earned laugh after a summer of squabbling and cries of boredom, but it is often a privileged laugh.

How can we prepare our kids with special needs for a school crisis?

Under the U.S. Individuals with Disabilities Education Act, students with disabilities are provided with a free public education that is tailored to their individual needs. The specific accommodations are spelled out in a legal document called the Individualized Education Program. It is a right but not a given. It can be a battle to get our children the support they need and deserve, and many parents of kids with special needs approach the school year knowing this.

Zoubida Pasha, a bilingual parent advocate for the Family Resource Center on Disabilities in Chicago, said parents should reread their child’s IEP before the start of the school year to become familiar with it again.

The IEP must be in place on the first day of instruction, she said. That means teachers cannot legally tell parents they need a grace period to observe the child or make their own assessment before providing the accommodations stipulated, Pasha said.

She also advised parents to help teachers learn about their children outside of the IEP, which typically includes a description of the child by former teachers, therapists and evaluators. Pasha does this for her daughter, who is in high school. “Feed them what was done during the summer, what skills that they have learned or upgraded or dropped,” she said. “Make it big accomplishments, an achievement, I don’t care what it is. Make sure there is that solid communication.”

Melissa Wilson already has been writing frequent handwritten notes to her autistic son’s first-grade teacher in Louisiana, trying to educate her about autism and her son’s particular habits. The teacher has no experience with autistic children, Wilson said. Her son barely eats lunch at school because the cafeteria is so loud, she said, but the school does not allow him to wear headphones or a chew necklace or have any other calming items that he needs.

“I’m not one of those moms who went and laid out on the patio to sunbathe when school started,” said Wilson, who has two other children also in school. “I’m the mom who takes a nap at 9:30 in the morning because I’m so worn out with stress and worry.”

Amy Erica Smith, a professor in Iowa with two children with special needs, said she worries most about her kids’ social and emotional health at the start of the school year. “Will they make friends? Will they be happy? Will they be able to hold everything together socially, without alienating their peers?”

Like me, Smith has particular concerns about her first-grader. “I worry about whether he’ll be able to follow along and keep up,” she said. “He did surprisingly well in kindergarten, but he had lots of support. In first grade, he’ll have somewhat fewer supports and somewhat more demands this year. . . . Will he be able to keep up?”

I am fortunate my son’s first-grade teacher reached out already to connect. My son will visit his new classroom today to meet her, to find out where the bathroom is, learn how to use his locker and go over the new routine. The autism support coordinator for our school district recommended his teacher have a visual schedule in place for the start of school year and a social story for him to read about what his day would be like. I have written the teacher a note about my son’s summer and have pledged, as I do every year, to support the teachers in his classroom. I am preparing a sensory kit for school that includes items that help him stay calm or focused. I will pack his headphones with his lunch.

When the first day comes, I will swallow my anxiety and do my best to seem excited about the school year. When we hug goodbye, I will whisper in my son’s ear the words I also need to hear: “It’s going to be okay.” And I hope it will be.

Jackie Spinner was a staff writer for The Washington Post for 14 years. She is now an associate professor of journalism at Columbia College Chicago and executive producer of “Don’t Forget Me,” a documentary on autism in Morocco. The film is scheduled for release this fall.

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