What to do when school doesn’t work for your kid

Two years ago I wrote a round-up of 14 things to try if school doesn’t work for your child. This is the time of year when I find myself sending that link to the various parents who reach out because their kids are having a hard time settling into school. So I figured it’s time for an update: both to my tips, and to our own 2E (twice exceptional) school story.

Let’s start with the update, because it will provide some context on those tips. Peanut is now 11 years old, with an autism diagnosis. He is a nominally full-time student at a private school that specializes in working with gifted kids.

The school has a wonderful resource teacher who is with Peanut most of the day, and we are working with an amazing autism consultant who has helped us (and the school) figure out our game plan. Peanut is at school all day, but he attends very few classes; he spends most of his day in the school’s resource room, where he reads, plays games with the resource teacher and sometimes does some school work. Even with this erratic work pattern, he has ended up more than a year ahead in math; the rest of his coursework is a write-off.

Peanut’s meltdowns are now very rare (less than one a month, compared to the five a week that we were experiencing three years ago) but when he really loses it he will say he wants to die, and may even make a half-hearted attempt at self-harm. Particularly at this time of year, he often refuses to go to school in the morning (though we can usually coax him out the door) and once he’s at school, may try to leave; he has done the 3-hour walk home twice already. (Don’t worry: I followed!)

In case of meltdown or escape attempt, I stay very close by during the school day. Right now, I spend most of the day in the resource room with Peanut and his teacher, working on low-concentration tasks to the extent that I can; I save more challenging work tasks for the end of day. Hopefully we’ll soon get back to the point where I can relocate to another room or a nearby coffee shop, because it’s hard to start my workday at 4 p.m., especially if the day has involved a lot of conflict and negotiation with Peanut.

It’s far from an ideal picture, but it’s much better than public school (where Peanut was constantly being sent home for disruption), homeschooling (which saw Peanut become suicidal due to isolation) or part-time private school (which was both expensive and paperwork-intensive, and kept Peanut from being integrated into the school community). In fact, we love this school so much that Peanut’s elder sibling is now there too, which makes our lives logistically easier, and gives Peanut a chance to see his favorite person in the world at various points in the school day.

Holding his sibling’s hand eases Peanut’s way into school.

There are dozens of levels of privilege that have made this situation possible. We have enough money to pay for Peanut’s tuition, and my mom has helped out by paying for our older kid’s. I do work that is flexible enough to allow me to be at school, without giving up my income (though it’s dramatically reduced). We live in a city that’s big enough to offer a range of school options, even if there are fewer than we might like. Also, Peanut’s extraordinary IQ meant that a gifted school made room for him, even though his challenges might otherwise have discouraged them.

All this — and much more — means that some of the advice and experience I can share is not going to be accessible for everyone. But I will also add that I would have rejected many of these tips myself, just a few years ago: desperation has a way of realigning your sense of what’s possible, what you can afford, and what you can put up with.

Framing your school struggles

Whether you’re thinking about how to make your kid’s school work better, or considering a switch, there are a few big-picture shifts that can help with your decision-making. Here’s how my own perspective has changed.

Don’t expect your kid’s school experience to look like anyone else’s. The biggest and most challenging mental shift has been letting go of the idea that Peanut can and should be participating at school the way other kids do. As we’ve learned more about autism, and also about the various physiological and sensory issues that may be part of Peanut’s autism or possibly a separate set of challenges, we’ve come to recognize that even though Peanut may look like a “high functioning” autistic kid, or even a normal kid, he is anything but. His anxiety and sensory barriers are incredibly intense, to the point that it’s very difficult and rare for him to participate in articulating, let alone navigating, the barriers to classroom participation. Whenever I get caught up in the dream of Peanut “living up” to his intellectual potential by going to class with all the other kids, I start digging myself into conflicts that escalate his anxiety. When I make room for the possibility that Peanut may always need relative isolation in order to work, and may need long stretches of unstructured time in order to de-stress, it’s easier for me to come up with strategies that help him have a successful day or week.

Look at academic work as a means, not an end. I come from a very academic family, and I always prided myself on being a good student, so it’s been hard for me to let go of my focus on schoolwork and academic performance. I still hope that at some point, Peanut will be able to complete schoolwork in a consistent way, earn course credits, and eventually, graduate from high school. But at this point, his ability to complete schoolwork matters way less to his short- and long-term well-being than his ability to manage his anxiety and sensory overload, interact successfully with peers, and maintain a healthy level of self-esteem. Because Peanut is so bright, I feel like we have the luxury of time: if and when he’s ready, Peanut will be able to catch up on any subject knowledge or academic skills he has missed.

For now, the value of schoolwork and class participation lies in building his emotional self-regulation, his sense of belonging, and his self-esteem: on days when Peanut has participated in more classes and classwork, he is much happier and much calmer. That means I’m continually tempted to focus on getting him to class, or getting him to do his work — which is why I have to keep reminding myself that we are at school to help him emotionally, and not vice versa. Some days, the best thing we can do for Peanut’s growth is to get him to do his math work, or go to class. But some days, that’s not in the cards, and focusing on schoolwork just intensifies his anxiety and overload. Learning how to tell which kind of day it is….well, that’s a work in progress.

Learn about self-regulation. Our approach to Peanut’s needs and schooling has been profoundly reshaped in the past 18 months thanks to the book Self-Reg, by Stuart Shanker. (Full disclosure: Because Canada only has seven people, Stuart’s mother-in-law is a longtime family friend who designed our wedding rings, but I swear, I haven’t seen him since he became Dr. Self-Reg.) It’s an incredibly helpful way of understanding what makes school (and life!) hard for many kids, and for thinking about what your kid might need to be calmer and more resilient. For help turning the book’s framework into a plan of action, I rely on Vicki Parnell, who runs the Self-Reg Parenting group on Facebook. Read the book. Join the group. Trust me.

Put safety first. All our education and work/life decisions are ultimately focused on one paramount goal: keeping Peanut safe. Our homeschooling experiment taught us that Peanut can become suicidal if he feels like he just doesn’t belong, or feels like he is too weird to have a normal life. Our years of public school taught us that he is at risk of running away or self-harm if he is too stressed at school. So we have picked a school that maximizes his sense of belonging, while minimizing his stress levels, and I’ve organized my life and work around being at school as backup. It all looks kind of nuts ($20k/year to just sit at school and barely go to class? With both a full-time support worker and an on-site parent to make it possible?) but if it keeps Peanut safe and happy it is totally worth it.

Finding the right school

If you’re having doubts about your kid’s school, looking at alternatives is crucial — if only to help you think through what you want to ask for (and expect from) their current school. For just this reason, I recently found myself looking at school options for a friend whose child is a younger (and easier!) version of Peanut. That got me thinking about how I’d go about screening schools, now that I know what I know.

Don’t just look for a school, look for a principal. If your school struggles have led you to look at other school options, don’t just think in terms of looking for the right school: look for the right principal. Particularly at a new and/or small school (our kids’ school is both), the principal really is the school: if the principal wants to support you and your kid, it will happen.

I would lay down in front of an oncoming train for Peanut’s principal: honestly, I feel like this man saved both of our lives. When he invited me to bring Peanut in for an interview and visit, three years ago, I felt like I was seeing my kid for the first time: the principal’s skill in speaking with and teaching Peanut (they did some math problems together) brought out a kind of articulate engagement I didn’t know my son was capable of. In the years since, we’ve developed a close working partnership in which our principal’s forty years of teaching experience have helped us guide Peanut’s growth, and our knowledge of Peanut has shaped the many accommodations and adaptations the school has made.

Look for kids who feel like yours. Part of what makes Peanut’s school a good fit is that it’s full of quirky kids. He’s still the extreme case, but his peculiarities, absences and occasional meltdowns don’t stand out as much in a school full of smart kids who have all kinds of 2E challenges. When he is able to engage with the other kids, his socializing is more rewarding, because the other kids are much more likely to share his passionate interests and to be able to engage with his intensity and adult vocabulary. When he’s having trouble, his classmates are more likely to be kind and encouraging than judgmental or dismissive. My general advice to other parents is to look for a school where your kid is not the weirdest or most challenging — or if your kid is going to be the weirdest or most challenging (as ours is), then find a school where weird is normal.

Look for classroom accommodations. There are a bunch of accommodations that are very common for autistic kids, or for kids with other kinds of special needs: Seating arrangements like exercise balls or bouncy chair bands. Accommodations for written output, like being able to use a keyboard or have someone scribe for you. Sound-baffling headphones, fidget toys, chewing gum or chewable necklaces. The ability to take frequent breaks, and a safe, sensory-friendly place to take them. All of these are great, and may well have a place in your kid’s school experience — and I’ll go so far as to say that any school that resists these totally typical accommodations is the wrong school for a challenging kid. If you don’t see kids using any of these very typical tools, the school you’re visiting probably doesn’t serve kids like yours — or doesn’t serve them effectively.

Peanut takes a break from class with a book.

Expect differentiated learning. “Differentiated learning” means that the school recognizes that different kids need different approaches and accommodations. A school that genuinely takes a differentiated learning approach will be able to give your kid different kinds of work or assignments, based on their interests and abilities; they’ll be able to accommodate your kid’s special requirements, even if they differ from what’s appropriate for other kids. If a school says that they can’t let your kid read in class/sit on an exercise ball/work on a computer/insert your accommodation here because “that wouldn’t be fair to the other kids” or “then we’d have to do that for all the kids”, run. Challenging kids need to be at a school where the staff and teachers are prepared to work differently with them — even if they can’t or won’t do the same for other kids. Peanut’s current school is a great fit specifically because everyone in the school — teachers, administrators and kids — understands that a one-size-fits-all approach isn’t good for anyone.

Transitioning to a new school

Switching to a new school may or may not be a magic bullet. Depending on your kid’s specific challenges and experiences, it’s worth giving serious consideration to the possibility that you’ll have a struggle adjusting to a new school, too. Thinking carefully about how to make that transition will make it more likely that your new school experience will be better.

Make time for trauma recovery. If your kid has had a lousy school experience, you may need to allow some recovery time for all of you. For some families, that means a year of homeschooling or “unschooling” or “deschooling”. For us, part-time school worked better. In Peanut’s case, his kindergarten trauma took place in a French immersion school, and he still can’t stand to even hear French spoken, so I have given up trying to get him to French class, and Rob and I no longer use French as our Secret Parent Language. (Quelle dommage!) Think about what your kid needs to recover from their past schooling experiences, and factor that into your plan for a new school.

Consider a gradual transition. By the time we pulled the plug on public school, the private school Peanut now attends had taken on its share of challenging kids for the following fall. That meant we had to spend a semester home-schooling before they made room for him — and when they did, it was in just two classes. Since two classes a day turned out to be a big challenge for Peanut, we stuck with a part-time schedule the following year, too. Spending half-days at school gave Peanut a chance to get used to his new school before we ramped back up to full-time.

Be organized — and vigilant — about sharing paperwork. Challenging kids are a paperwork magnet. At a certain point I got tired of digging through my files every time a new school or a new teacher or a new therapist needed to have Peanut’s backstory. Now I have a binder that has all the reports in one place, and a folder on my computer that has all the digital versions. That makes it easy to give the full set to anyone who needs this information, although I am still cautious about who gets which reports. When the homeschooling folks needed Peanut’s full file, for example, I insisted on redacting some portions of his psychiatric file before I shared them. Your kid’s school file may follow them forever, so be sure you know what’s in it (yes, you can ask!) and re-read anything in your kid’s assessments and reports before handing it over to the school so you can consider what feels safe to share.

Working with your kid’s school

Finding the right school is just the beginning. When you’ve got a neurotypical kid, you can afford to think of their school as a service provider: you drop them off at school each day, and by the end of the day (and year, and school career) you have an educated child. When you’ve got an atypical child, your school is your partner in what may be the biggest and most difficult project you’ll ever face, so you need to learn how to work together in order to help your kid. Here’s what’s worked for me.

Write a guide to your kid. If you’ve got a challenging kid, you’ve probably become an expert in how to support your child’s particular needs and how to avoid stressing or triggering them. Write up your wisdom (tables and bullet points make it easy to scan) and give it to your kid’s teachers as a manual on how to work with your child. You’ll probably need to update it every year, but once you create it the first time, that gets easier. I could write a whole blog post on how to put that guide together (and maybe I will!) but meanwhile, here’s the table of contents (yes, it was long enough to have a table of contents). Your guide should include a one-pager of essential information; if you’re not up for writing a detailed guide, consider writing just that one page. In our case that covered 1) The key goal for the year (spending full days at school) and accommodations needed to support that goal (like taking as many breaks as needed); 2) What leads to meltdowns, what they look like, and how to de-escalate if you see one brewing, and 3) Emergency steps and contact numbers in case of meltdown or running away.

Table of contents for Peanut: The Missing Manual.

Get your hands dirty. If you’ve got a challenging kid, you are going to be asking your kid’s school to go the extra mile for you, again and again…so if you are in a position to go the extra mile for the school, do it. Here are some of the things I have done in the past year, just because I’m at school all the time: Set up online registration for a school open house. Brought coffee to a teacher. Written job ads for teacher hires. Helped kids with their class work. Kept an eye on a sick student until her mom arrived. Helping out in these ways not only earns me some credit with the teachers and staff, but it also helps me get insight into how the school works…and helps strengthen the school itself.

Shape your kid’s support team. We’ve been extraordinarily lucky to play a role in hiring the support workers who’ve worked with Peanut at school for the past two years, but perhaps our good luck can become someone else’s template. When Peanut started at his current school, he was still enrolled as a full-time homeschooling student; the homeschooling outfit provided some funds (because of Peanut’s special needs designation) that allowed us to pay for part-time school (the homeschooling folks treated that like tutoring). Once Peanut reached the point where it looked like yes, he could go to school full-time, we had a financial obstacle: we couldn’t pay for his homeschooling tutor/support worker (who’d been coming to school with him) and pay for full-time private school tuition.

But enrolling Peanut in private school full-time meant the private school now got access to the special ed funds that had previously gone to the homeschooling outfit; the principal agreed that those funds could be used to pay for Peanut’s support worker. Since Peanut already had a good relationship with the person we’d hired, the school did a background check and hired her directly. When she left, and the school needed to make a new hire, it was at a busy time of year, so I offered to take on the work of posting a job ad, reviewing applicants and doing initial interviews alongside the school counsellor. That allowed me to find and recommend a terrific candidate to the principal, who he hired. I’m sure the school could have found someone without my help, but because I was directly involved, the hire happened faster and the teacher they hired is a really great fit for both Peanut and the school.

Build your own school support team. Your kid isn’t the only person who needs support: being the hands-on parent of a challenging kid is often painful and exhausting. Particularly last year, when we went through two months of frequent meltdowns that required me to drag Peanut down the hall and into an empty classroom until he calmed down, I was often self-conscious about our disruptive impact. After being dressed down by various teachers and principals during Peanut’s early school years, I kept waiting for the principal to tell me that they couldn’t keep Peanut at school anymore. After one particularly bad day, when Peanut had raged for well over an hour, the principal stopped me in the hall, and I thought: this is it — we’re getting the boot. Instead, the principal just wanted to tell me that he thought I’d done an amazing job of handling that meltdown, and asked if I needed a hug. (I did.) It’s taken a while to get used to, but this is my new normal: when Peanut has a rough day, I can pretty much count on a teacher or staff person checking in to make sure that I am ok. I am so incredibly grateful to get that kind of support from our school — and it’s what every special needs parent deserves.

Peanut’s SoundPeats headphones.

Get creative about classroom accommodations. The standard bucket of accommodations may not be all your kid needs in order to be safe, calm and happy. Don’t be shy about asking your school to support additional accommodations, even if they’re quirky. When Peanut and I started planning for this school year, he told me that he thought this school year would go better because he could use his new iPod to listen to audiobooks all day; at first, that seemed like an unimaginable accommodation. But I went looking for options, and found that there are now plenty of affordable Bluetooth headphones that let you pair just one ear at a time; I also found a parental restrictions tool that let me turn off every app on his phone except Kindle and Audible during the school day. Now, when he’s in class, I give him a single earphone; he can listen to his teacher with one ear and his book with the other. (Yes, he really does listen to both.)

Reorganizing your life

If Peanut’s school situation is much better now than it was three or four years ago, that’s not just about the school. We have dramatically reorganized our lives around Peanut’s needs, and around his school in particular. Here’s what has helped:

Maximize your own flexibility. I’ve always been a career-first kind of person, but the past few years have required me to prioritize flexibility over income and accomplishment. If you’ve got a complicated kid, being self-employed may be way easier than holding down a job; that’s especially true if you have the kind of work (or brain) that allows you to work effectively in 15- or 30-minute increments. When Peanut is in class or playing a game with his support teacher, I might take half an hour to research or revise an article, send a couple of emails or pitch a new editor; if he is out of sorts and needs me in the room, I will tackle something easy and interruptible, like doing my invoicing or formatting a blog post. It’s been even easier for me to maintain this crazy juggling act since Rob returned to self-employment; yes, I miss our extended health benefits and predictable pay cheques, but now that Rob is more flexible I can book an out-of-town speech or a day of client meetings, because he can cover for me by spending the day at school with Peanut and his support worker.

Pick a primary wrangler/caregiver. Rob’s return to self-employment raised the possibility that we could split Peanut’s schedule and trade off spending days at school. We tried that in the spring, but have found that at least for our kid and family, it works a lot better to have Rob as the primary breadwinner and me as the primary wrangler on the Peanut front. (My inner feminist just died a little when I wrote that. She’s urging me to note that I’m still working a lot. Really!) So much of special needs parenting is actually about project management: Figuring out the next thing you’re going to work on. Booking the therapy appointments. Negotiating over accommodations. We have found that it’s easier to have one person managing that case file — easier for us, easier for Peanut and easier for the school. Since Rob’s work requires more uninterrupted time, while I’m pretty good at juggling, it’s made more sense for me to be the one on deck with Peanut.

Rethink your finances. For many people, a key part of creating the flexibility to handle special needs parenting is about rethinking your financial picture. Our household income declined pretty sharply — by more than a third— when I first left my job so that I’d be more available to Peanut. We were able to make that work by implementing a few key changes: We gave up travel, recreational shopping (i.e. no new clothes or gadgets) and saving for our retirement. (Feel free to freak out here.) While our financial picture has now improved a bit, there’s no question that we will be living more modestly until we reach the stage when Peanut needs less support. My gamble is that by making time to support Peanut now, so that he can be at school, I’m increasing the odds that he’ll eventually be able to support himself. That’s not only a better outcome for Peanut, but it’s a better financial outcome for our whole family.

Remake your wardrobe. OK, this is a strange one, but it’s worth mentioning: I have completely changed the way I dress ever since I started spending my school days with Peanut. In part, it’s because the sixth graders really don’t seem to be impressed by my work clothes, so why should I bother wearing stuff that needs to be dry cleaned? But the main reason is practical: I always wear comfortable running shoes and a good sports bra, because I never know when I’ll have to chase after Peanut if he takes off. I mostly wear leggings and short-sleeved tunics, with lots of additional layers, because they make it easy and comfortable to sit on the floor, or to adjust my temperature if a classroom is hot (or cold), or to layer up if we’re going out for an extended recess in the rain. (In the rainy season, I wear gore-tex running shoes for that exact reason.) One more tip, this one informed by regret: even if you switch to a 6-day-a-week sweatsuit wardrobe, make sure you put on jeans or non-stretch pants at least once a week, so you notice if your new all-Lycra lifestyle has led to weight gain.

Final thoughts

I often wonder if Peanut’s school experience would have been different if I’d made all these life changes when he first started: if I’d been the on-call, on-site supermom when he was in public school. At other times I wonder if I could have kept on being a full-time working mom if we’d just started at the right school in the first place; if we’d put him in his current amazing school instead of subjecting him to three years of trauma in schools that weren’t equipped to support him.

But in all honesty, I don’t think that either scenario would have been enough: we’ve got a highly complicated and sensitive child, whose particular combination of giftedness, anxiety and sensory issues would have made school a challenge no matter what. We had to go through all the ordeals we went through — the school meltdowns, the calls from the principal, the assessments, the homeschooling misery — to get where we are today. I’m surprisingly happy living my weird life of working out of an elementary school, watching my kid kinda sorta go to school, but I wouldn’t be happy with it if I didn’t absolutely know that it was our only option.

When I hear from other parents who are where we were two years ago, or four years ago, or six years ago, I want to save them from all the pain it took to get from there to here. Maybe some of the advice here will help.

If you’re one of those parents, however, there is only one thing you really need to know: You will survive this. You and your child will survive by finding your own path through the school years — a path that none of us who are further along the journey can walk for you, or save you from.

But we are with you on this path. We’re willing to share what we’ve learned. And we know that soon, you’re going to have your own wisdom to share with the next group of parents who are looking for their own way forward.