From Eden's Dirt

Hope through despair. Faith through fear.

3 Ways that Back to School season is Different in 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 a lot of ways. Here are three examples.

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

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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 looks very different. My son and daughter aren’t interested in trendy clothes because for the most part they aren’t concerned with trends. In many 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.

In other ways, though, buying clothes for my teens is a challenge. When I buy new jeans for my thirteen year old son I also need to be sure to remove the old jeans and pants from his room because often he doesn’t realize that they’re two sizes too small and barely long enough to cover his knees, let alone his ankles. Because he also has ADHD he may forget that he has new jeans if he still has a drawer full of the old ones. With my fourteen year old daughter clothes are more complicated. Since women are unfortunately held to a higher standard of appearance than men I have to balance cultural expectations for how a teen girl should look with her own sensory needs, her ability to dress herself, and the kinds of things she likes. Like her brother she isn’t always aware of it when her clothes are too small. Having kids with autism has shown me that much of the language we use as neurotypicals is very vague. Pants that one young woman might think are too small might be perfect to another woman, even if they both wear the same size and have similar body shapes. My daughter might notice that her underwear are uncomfortable, but she may not be able to recognize that it’s because they’ve grown too small. Or she may know they’re too small but not remember to tell me until I see her unabashedly fixing a wedgie in public. I have to remember that she likes cotton pants but not leggings and has trouble fastening back-closing bras. This gets more confusing around the holiday season when well-meaning relatives want to buy my kids clothes as gifts.

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

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Between my teens’ special needs 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 are often harder for schools to accommodate. The Individuals with Disabilities Education Act (IDEA), which was signed into law in 1990, was designed to ensure that American 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) to communicate educational goals and methods used to achieve them to all schools staff. 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 found it faster and simpler to move our special needs students 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 and social/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 “brick and mortar” public high school, where the special education services she receives can happen in person. So, yes, that will bring the count up to ten different schools for her in eleven years.

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

 

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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 popular 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 and they won’t.

In all respects parenting these two amazingly unique people has been a joyful and humbling challenge. There was a time when we thought that 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 perpetually 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.

Photos by Steve Harvey, Ben Weber, Austin Pache, and Melissa Askvew via Unsplash.

3 Comments

  1. Sarah Longstaff

    August 1, 2018 at 11:12 am

    I commented on your The Mighty post, too, but they took it off bc I included my personal email. I am in the midst of this exact story with my two teens, although the younger one hasn\’t been diagnosed yet. I\’m looking for \”experience, strength, and hope\” and mentors. I\’m married to a man who doesn\’t really understand the benefits or how-to of homeschooling. My kids\’ local pediatrician supports me 100% <3 but many of the specialists, and even a therapist I consulted for myself! have yelled at me, implied I'm a bad mother and too lenient, etc. and I should just "put her back in school!!!" I would like to put my 15 yo daughter in co-op classes for social interaction, but she is still attending a PHP program for autistic teens with anxiety disorders. I also need to get her a tutor who specializes in ESE and Gifted. My 7th grade son is following the same downward path that his sister and I did in middle school. He has many autistic traits, but it's so hard to get a diagnosis. He finally got a dx for learning disabilities (reading and writing), but until his grades suffer, the teachers can't do anything. (They give me sympathetic, sad looks when the administrators aren't looking.) Last year was such a struggle for my son, facing anxiety and depression, that I'd like to pull him out of school, too. Let him, too, take his time. Both my kids don't do well with Florida Virtual School, either. He needs curriculum geared to an auditory/oral learner. I am a secular homeschooler, but all the coops are at churches. And frankly, I feel such love from the Christian homeschool moms! <3 I need that. Do you think the moms groups would accept a non-religious person?

    • Hi Sarah! Thank you so much for this message. I just got back from a long vacation late last night, and I want to be sure to give your message the thought and response it deserves. Please give me a little bit of time to respond and I will get back to you.

      • Hi again Sarah. I think that it’s a good idea to have that type of community around you, no matter what you believe in. I don’t have a lot of experience with homeschool groups, but I know that they come in all shapes and sizes and belief systems. I live in San Diego and there is a large Christian homeschoolers network here, and I believe that as part of your paid membership you do need to agree to a short statement of faith. But there are many groups that don’t require that, and that I’m sure would welcome you. I don’t recall if you mentioned where you live, but of course the closer you are to a city or large suburban area, the more variety you’ll find in School choice and homeschooling communities. You could also look at the Home School Legal Defense Association website. They may have a directory or better suggestions than I do.

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