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3 Ways Back to School Season is Different for an Autism Family

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Sometimes it seems like back-to-school season is an extended and complicated version of New Year’s Eve. All that changes on New Year’s Eve is the date, but back to school season means new clothes, new shoes, lots of notebooks and pencils, and about 85 glue sticks to donate to the classroom supply. It’s not quite the same in my family, though. As a mom of two teens with autism, I have to think differently, shop differently, and set goals differently. And that’s just the beginning. While my teens deal with many of the same issues that other teens do, there are a good number of common teen concerns that don’t come up in our house, and a whole host of others that are pretty unique.

Our family’s back-to-school experience is different in several of ways. Here are three examples.

1. “Back to School Fashion” isn’t a thing.

As a neurotypical teen in the 1990s I anticipated my annual back to school clothes shopping trip like a second Christmas. I couldn’t wait to go to the mall with my grandmother to update my wardrobe with the newest styles. (Jnco jeans, anyone?) But as a mom of teens with autism, buying new clothes is different. My son and daughter aren’t interested in trendy clothes because for the most part, they aren’t concerned with trends. In some ways this makes things easier for me as a parent because I can shop for my kids’ clothing based on need instead of want. While I may take advantage of clothing sales this season to stock up on jeans in the next size up, my kids don’t care what time of year they get them, nor do they want to go along to the store. In our house, back to school shopping is a one-woman job, and when I bring home the new jeans I toss them on their beds and remind them to put them away in their closets.

With my 14-year-old daughter clothes are more complicated. Since women are unfortunately held to a different standard of appearance, I have to balance cultural expectations for how a teen girl should look with her own sensory needs, her fine motor skills, and the kinds of things she likes. I have to remember, for example, that she likes cotton pants but not leggings.

2. We don’t always know what school they’re going back to. 

Between my teens’ disabilities and my husband’s Navy career, my kids change schools a lot. My daughter, who starts high school this year, has attended nine different public schools already, but only two of those changes were due to a physical move for our family. While all kids have their own unique educational needs, the needs of children with autism can be harder for schools to accommodate. The Individuals with Disabilities Education Act (IDEA), which was signed into law in 1990, was designed to ensure that students with disabilities can still receive a free and appropriate public education (FAPE). But since a diagnosis of autism can cover a wide range of needs and abilities, parents of students with autism and school staff need to work together to evaluate each student’s needs and design an Individualized Education Plan (IEP) with detailed educational goals and methods used to achieve them. Of course a student’s IEP needs to be adjusted regularly as she or he achieves some goals and needs change, and this is where things get complicated.

When a school doesn’t have the right materials or staff to address a student’s changing needs, or when parents and school staff disagree about what those needs are, something needs to change. While parents do have the option to legally contest a school’s decision regarding a child’s needs, these appeals can mean a lengthy and potentially costly battle with an uncertain outcome. As a family, we’ve decided to move our children to a more accommodating school. For the last two school years, we chose to have our autistic teens enrolled in an online school, where they were able to follow a public school curriculum and meet with teachers and classmates online from inside our home. While my son has thrived in this environment, we found that for my daughter this specialized school setting widened an already existing gap between her academic, social and emotional abilities. Her ways of interacting with other teens and adults became problematic for her. So this year, at least to start, she may choose to attend our local public high school, where the special education services she receives can happen in person. So, yes, that will bring the count up to 10 different schools for her in 11 years.

3. We pay more attention to our kids’ social lives at school than their academic lives.  

With little exception, my teens with autism have generally been able to get good grades and understand the material their teachers present at school. While this isn’t true for all autistic teens, my kids tend to have more difficulty interacting with other students than they do with teachers and textbooks. As a result, I pay more attention to when, where, and how my teens interact with peers than I do their grades. Because, unfortunately, my teens have a lot of peers, but few friends. Bullying has been an on-and-off problem throughout their school careers, but a lack of supportive friendships has been a consistent theme, especially once they started middle school. It’s not that I want them to be social butterflies, but I can’t be their main source of support forever. I want to know that they can find and maintain good relationships and know whether or not a new friend is a safe, reliable person to spend time with. Right now they’re with me and each other more than anyone else, and I have no need to kick them out of our house when they turn 18. But someday, I’ll be gone.

In all respects, parenting these two amazingly unique people has been a joyful and humbling challenge. There was a time when we thought all we had to do was find the right combination of school services, doctors, therapists and parenting methods and then we could simply maintain the course while they figured the rest out on their own. In reality, their needs are moving targets, and while consistency is important in parenting, it’s just as important for us to know when we need to make a change. So every year when back to school season arrives, we take the time to mindfully observe how our autistic teens are really doing. While academics and social skills are things we look at with their input, whether or not they’re happy and comfortable is usually the barometer that tells us when change is in the air. So this year as they try on new jeans, new schools, and new friends, my job is to help them find the right fit.

Getty image by seb_ra

Originally published: August 1, 2018
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