Dear teachers, from your special education students’ family.

I am in my fifteenth year of working in special education, including one brief year as a coordinator. (I missed daily direct work with students far too much to stay.) But there is little that changed the trajectory of my career as much as becoming a mom to my two children did. Both of my children receive special education services — and at many different places on the “continuum of services” over the years. Sitting in their IEP meetings, building relationships with their schools, seeing the way my children were included (or not)… We teachers think we know. I thought I knew. But school and home are not the same. Parenting and teaching are not the same. There’s just so much that I want to say.

We are fighting because we have to. If we seem fierce, if we seem frustrated, if we seem like we’re always anxious about something… It’s because there’s always something to be anxious about. Other kids show up on the first day of school. They just show up. And now they have access to reading, writing, math, and friendship. They hear stories, read to their teachers, read with friends, and learn to spell words. They are taught number sense, reasoning, measurement, and so much more than counting and computation. They experiment! They go to lunch, recess, and resources with their peers. They are assumed to be capable of learning these things. My daughter didn’t get this until she was in sixth grade. My son once didn’t have some of his accommodations implemented for 4 months, despite repeated emails and meetings. On another occasion, the school implemented multiple behavior plan systems with him that were known to trigger fight/flight — despite multiple reminders that his very IEP stating “no behavior plans without team consent”. When we have a great teacher, we know. We know and we are so 100% on your side. We just want the best for our kids. I promise.

Open communication isn’t about helicopter parenting. The statistics are not great for our children and adults with disabilities. Seclusion, restraint, bullying, and flat out physical or verbal abuse are rampant. I understand that there is no way for a parent to know everything that happens every day with any child. I understand that many general education students come home and share minimally. It’s different. It’s so, so different. Our kids are hurt in places where they should be safe — often. We see these stories in the news. We may have lived these stories with our kids. And even when they are physically safe, our kids are left behind in other ways. They are taught separate curriculum, given meaningless grades, or meaningless tasks. My daughter spent several months clipping clothespins to the side of a box or sorting highlighters and pens in her fourth grade year. Their voice may go unheard, as a teacher says “you didn’t mean to say that”. (We have a video of our daughter once saying, “NO” when asked if she liked something. The teacher then hand over hand prompted her to say yes instead.) I understand this whole paragraph is very negative. I understand that if you’re a great teacher, you’re thinking — but not me! Not all of us! That’s wonderful. I’m glad. Show us. Show us that it’s not you. Show us every day, every week. Tell us what you’re teaching. Tell us about your daily schedule. Tell us when our child has a great day or a hard day. Show us some of the things our child is learning so that we can see their progress. Show us so that we can practice at home. Show us so that we can advocate for them in the future because we now know — they can.

Believe in our kids. Give me all the strength-based everything. Strength-based IEPs. Strength-based report cards. Strength-based notes home. Guys, we know our kids are behind. The doctors, therapists, education professionals, and even strangers of the world never fail to remind us. I get if you need to share what the math benchmark score is and where it should have been. But can you also tell me about the time my child was really kind to a kindergartener who was lost in the hallway? Can you tell me how they read a book independently for the first time? The time they made a new attempt at a word, stood for 20 seconds longer than usual? Or all the unconventional ways our children are leaders, go-getters, and bring value to their communities? Maybe they have skill with learning the routine, with trying to solve problems independently, with finding creative ways to self-soothe and self-regulate in a busy classroom. Every child has so many strengths. Let this part of your IEP be big and detailed and long. Let my child shine in your eyes. They will feel the way you see them. We will, too.

Be kind & listen. This probably seems like it doesn’t need to be said. But you cannot imagine the things our children have experienced, or the things that teachers and administrators have said to us. We’ve had administrators tell us that the community would be banging down the door to complain if our child was included for 30 minutes of instructional time a day in elementary school. This is a literal quote, recorded in a meeting. We’ve had home-school communication concerns dismissed as “but she didn’t hit herself that hard, so that’s why no one told you”. Listen when we have concerns. Empathize. Speak kindly about our kids and our family when you have concerns. I want to hear your concerns — just think about how you’re saying them. It’s so different to say: “He can’t be in that class! He’ll disrupt everyone!” and “I’m worried that his anxiety will really spike in this specific setting. He is making a lot of progress with XYZ supports. I really want him to feel calm, regulated, and ready to learn.” Or this: “She doesn’t know any of her alphabet,” versus “She loves to explore alphabet letters by picking them up and looking at them. She will occasionally say one of the letters, but it’s hard for her to consistently name them yet.” THEY. ARE. SO. DIFFERENT.

We are doing the best we can. This applies to the clothes our students wear, the lunches our students pack, the homework folder that doesn’t get checked, whatever it might be. I get that we sometimes might do things that are very frustrating. I am open and honest about how I AM TERRIBLE AT CHECKING THE HOMEWORK FOLDER. I suck at sending in lunch money and permission slips. I get this is a lot of work for you to remind me. I wish it wasn’t this way. Remember, we also are always juggling medical appointments, therapy visits, multiple special education teams, home physical therapy programs, etc — an enormous mental checklist — on top of all the regular ways that we just want to be a family. We just want to watch movies together, build Lego designs, and go to the park. We want to hang out with our kids and appreciate our time together. Sometimes that means that we suck at things. Thank you for being so kind and compassionate and understanding when that happens. Thanks for finding ways to work with us. (My daughter’s teacher now emails when she has a form to sign, or sticks a note in her lunchbox when she needs clothes. I SEE YOU AND I THANK YOU.)

We want our kids to have a sense of community & belonging. My kids have been almost everywhere on the continuum. They’ve been in general education with minimal supports. They’ve been in private day or hospital settings. They’ve been everywhere in between. I understand why the continuum exists. But we can still ensure our kids have a sense of belonging and community, wherever they are in the continuum. A sense of belonging comes from all the little things — having a place to hang your coat, a desk with your name, a chance to be the star of the week, even if you’re only in the classroom for short periods. It comes from teachers and administrators wanting our kids in their schools and shining a light on our kids’ talents, so that all children can appreciate the value that our kids bring to the table. It comes when other kids know your name, wave hello to you in the hall, and ask how you are doing. It’s being on the stage with your peers, not on the floor next to the stage. It’s being at the table with your friends for lunch, not separate and far away. It comes from being invited to participate in school-wide events, whether it’s PTA spirit nights, talent shows, grade level school performances, or field day. It’s about being more than an after thought.

We are a resource and can do great things together. As we grow as parents, we gain so much knowledge. We know what worked for our kids in previous classrooms. We know what helps them communicate. We know what this adapted sign, that vocal approximation, or this sign of frustration means. We have learned from all the teachers that we had before. We can help you problem solve. We can brainstorm. We can (*gasp*) help write IEPs as we share our children’s strengths, the needs we’ve seen over the years, the skills they’ve carried over or haven’t. We have so much value to add as an equal part of the team — if you’ll have us.

We Quit ABA: What We Do Instead

ball pit filled with white balls with 2 black and pink sneakers poking out

This specific post is about what we do as a family at home with my children. I am writing because I have seen an increasing pressure on families. I have even seen posts advising ABA therapists to use guilt on selling their services: “what will you regret on your death bed?”

We’ve been through some rocky time periods where we had to confront the fact that tomorrow is not guaranteed. Never once did we worry about whether we had done more ABA. We focused on the laughter, the hugs, the moments of laying in bed and singing “Mr Worldwide” or “I was following, I was following…”

Some of the things will apply universally, across environments, and some may not. Home is different from school. We’re all better off when we acknowledge that. I had to really work to let go of the idea that I needed to be “working on something” all the time. This idea is actually built on cultural ableism: if we do enough, if we continue therapy 24/7, if we work hard enough, our child will get closer to the non-disabled. She doesn’t need me to be her therapist. She doesn’t need me to structure every moment of her day. She doesn’t need to be anyone except herself. She needs her mom. She needs a childhood.

With that framework in mind, here are some of the ways that we have selected to support our children better at home — without ABA.

We start with acceptance. We accept, fully. We accept non-speaking. We accept stimming. We accept passions and routines and repetition. We accept sensory needs and movement needs and an eternal love for Pitbull. This has to come first. Read #actuallyautistic writings. Watch videos unpacking ableism. See a therapist. Phone a friend. Spend time swinging on the playground, enjoying your child as they spin and twirl and chase bubbles. Do what you need to get to acceptance — and don’t write about it on Facebook. Imagine your best friend, your mom, your partner writing about you the way that the world so often writes about autistic children — and without your consent. You wouldn’t like it. It’s dehumanizing and hurtful. Don’t do it to them.

Don’t freak about your child’s timing. Not now does not mean not ever. Allow your child to find their own way. There’s this incredible push to “get kids ready” for adulthood, and it’s striking earlier and earlier. Succumbing to that pressure is a surefire way to spike everyone’s anxiety. It’s why families resort to sticker charts for sleeping on your own, or intensive potty training programs. Doing something at 7, 12, or even 16, doesn’t mean they will be doing it when they are 26 or 36 or 70. Not now does not mean never (and, perhaps a blog for another time, never isn’t the end of the world).

We problem solve with our children regarding “challenging behavior”. A child who is not doing well is a child for whom something has gone wrong. They may be experiencing a health issue that they’re having difficulty sharing. They may be struggling due to inappropriate expectations, a lack of accommodations, or a need for scaffolding. They may simply need some extra connection and time with people who care about them and accept them. We work with our children to uncover the need and develop a solution that meets their needs and ours. For example, we stay with our son until he falls asleep each night. If he wakes up in the middle of the night, we do it again. It meets his need for accompaniment and our need to have our own bedroom space.

We create environments for success. If my child struggles with unstructured vacation time, we bring picture cards and create a schedule for the day. If my child is struggling with long trips to the grocery store, we don’t do long trips to the grocery store. If my child wants to go to the zoo but is struggling with impulsive running away, then we find ways to support their safety (e.g., strollers, kinderpack, wagons, etc). If my child is having difficulty with being safe in their room, then everything in their room is soft and safe and comforting. Our goal is not to do things my way, the “typical” way, the way everyone else does it… Our goal is for our child to be successful. So we change and adapt and accommodate to create that success.

We use restorative practices instead of punishment. We all make mistakes. We act impulsively. We hurt people we love. Teaching relationship repair is one of the most important things I’ve taught my children. When something goes wrong, we brainstorm how to make it right. For example, my son once helped a neighbor mulch their yard in the Spring after breaking something in their yard earlier. It wasn’t a punishment. My son loves gardening and mulching; he loves spending time in the yard with his dad. But it was about making things right with someone we hurt. We could likely all be a little better about that.

We immerse ourselves in augmentative & alternative communication (AAC). We talk AAC. We use AAC to talk with our daughter. We use AAC to talk about what we are doing. We use AAC all day every day. And we see AAC (and all forms of communication) as invaluable. It is as worthy and awesome and beautiful and everything as any spoken word. This can be a huge cultural shift in a world that prizes talking — talking fast, talking loud, talking often. But the thing is — it’s never really about speech. It’s about our feelings, our thoughts, our needs… About connection. And there are many, many, many ways to communicate — with even more ways to connect. Cherish them all.

We love routine and familiarity and comfort. We’re kind of homebodies. We love movie nights and binge-watching Duck Tales. We go to the same stores. We eat the same dinners. We go on the same vacations. We don’t stress about screen time. You may be wondering why this matters, as far as “what we do instead of ABA”. It’s all about removing stress and upping acceptance. There is an unbelievabe amount of stress placed on our autistic children. They are expected to get by in a world that does very, very little to accommodate. All too often, this extends to our family life. We used to be a hiking family, so we bring our kids who are overwhelmed by mountain climbing. Our family expects us at a reunion, so we go, knowing it’s too loud too busy too much. But I refuse to allow my family life to be a source of stress. We adapt. It’s not loss. It’s opportunity. We find new ways to explore our passions, new interests to explore together, new ways to connect that allow us all to be ourselves, fully.

We seek out physicians & therapists who presume competence. When we’ve decided to seek support from professionals, we seek professionals who believe our children are capable. Not capable “within a certain limit”, but capable. Period. We set goals that work on things our children value. We seek doctors who believe my daughter’s “yes” when she says something is painful. We look for therapists who avoid hand-over-hand manipulation and always ask consent. We leave therapists who limit her words or talk negatively about him in front of him. Don’t be afraid to walk away when a therapy doesn’t align with your family values.

We teach. We preview skills before they will be needed. What will be expected and when? For example, we look at maps together before they are studied in social studies. We talk about how long we will have to wait to get through security before we leave home. We model and demonstrate ways to do things. We might show our son how to belly breathe, model new words that have been added to my daughter’s communication system, or bring our children into the process of making to do lists or figuring out what we need at the grocery store. We model these skills again and again, without frustration. We encourage exploration and experimentation, with all the mistakes and problem-solving that comes with. This means that my son can hammer big sticks or plant an avocado seed to see what happens. My daughter can bang on the screen of her iPad as she figures out where and how to get to her favorite apps. We scaffold and accommodate all along the way — what supports can we put in place to allow our children to be more successful? Notice that I don’t say “more independent”. We overly prize independence, when autonomous is more valuable.

We do hard things — together. Sometimes, we have to do hard things. We have to go to the doctor and get a shot. We have to clean our rooms. We have to figure out whether we have enough money when math is hard. We have to deal with the frustrations of life — the ride that was shut down, the brother that makes bothersome noises, the memorization of some key science terms… So we do it together. Even if it seems small to us, it is big to their bodies. We empathize. We co-regulate. And we do the hard things — together.

And, oh, most of all, more than anything, we celebrate. There’s so much joy. There are so many amazing moments that we can have with our children. Different is not less. It is never less. We splash in the pool, while singing “Go, Diego, Go” on repeat for 30 minutes. We watch the same Curious George movie, because the light in my son’s eyes when George dresses up as No Noggin is everything. We joke around with my daughter, whose current favorite AAC phrase is “Got ya!” Oh, we have so, SO much fun. So much freedom. So much flexibility. And I’m so grateful for it all.