First, notice that I did not say “on home school”.
Quarantine school is not home school. It is not school at home. It is an entirely different experience. We are all under stress. Our fight-flight-freeze systems are bouncing all over the place. It can be difficult to get materials. There was no ability to plan ahead, to map out a year, to explore different resources… There are no field trips. No homeschool meet-ups. It is just you, at home, living through this new experience, this hard experience, with your children.
Give yourself some grace. Whether that’s in comparison to your typical standards for yourself, to the schoolwork that is popping up in your email, or to some other standard you see online… Grace. So, so much grace. With that in mind, quarantine school — thankfully — is going fairly well for us. This is what works for us; I’d love to hear what works for your family.
This is a marathon. Social distancing, stay-at-home orders, school closures… Whatever you’re operating under, it’s not going to change anytime soon. We can’t burn ourselves out in the first two weeks. If making Pinterest-awesome activities every day brings you hope and inspiration, go for it! If it leaves you exhausted by Friday, don’t. Consider what’s going to work for your family over the next eight weeks, or the rest of the school year. How can you stay emotionally regulated across that time? How can you make sure you’re getting enough of that in your schedule? And same for your children — what do they need to stay regulated? How can you encourage or support those needs, whether’s aligning cars, hand-flapping, listening to so much Pitbull, or digging a hole in the yard?
Find the right balance between flexible and structure. My kids love routine. I love routine. My routines are what keep me strong and stable, especially when depression and anxiety are trying hard to flare. Do you have routines that you can use to glue your day together? Lunch, snack, or dinner routines? Going for a walk in the afternoon routine? We balance those routines with flexibility. Sometimes it’s too hot to go for a walk. Sometimes we are all exhausted from stress and need a mid-afternoon nap. This balance is going to be very different for each family. Some will need a lot more structure. When we first became parents, we had a schedule that was planned every 15-20 minutes. That’s what we needed right then. Now, it’s different.
Determine what’s most important. There’s a lot of things to weigh here. For some students or families, school — as a whole, all of it, the end — is not important right now. They are just trying to keep their heads above water. That’s okay. I promise. In other cases, school is important — but only part. For example, my son gets multiple hours of activities and lessons posted to his online account every week. We browsed it, felt that it was going to be stressful for him to complete and for us to accommodate / adapt, and decided not to do it. I realize not every family has this opportunity. Some schools are grading and marking attendance for distance learning. We’ve had the chance to say, right now, this isn’t going to work for him. We are doing other things that I feel are much more important (and accessible). It might be that you do some classes, but not others. It might be that you ask for a teacher to work with you on when things are due. With our family, we have prioritized reading & listening to stories, communicating with others, number sense activities, and movement. The movement, especially, has been important for mental health, as well as skill maintenance. Endorphins, baby!
It doesn’t have to be all day. It doesn’t have to be all at once. Home school, quarantine school, school at home… It doesn’t need to be 7:30 to 2, or whatever your typical school day schedule is. The 1:1 and small group environment within home allow for focused instruction in shorter bursts. If you are doing structured activities, you may only need to do 30-60 minutes total, especially for elementary school students. This can be done at once or split across the day, depending on the age and needs of your child. Our middle school daughter does better with shorter sessions split across the day. Our son prefers to just knock it all out in the early afternoon. I would only expect a toddler or preschooler to sit and attend for 5-10 minutes at a time, with up to 15 minutes for a kindergarten student.
Take advantage of the opportunities that exist at home — and have fun. This is such a stressful time. If there’s something that you’ve always wanted to do with your kids and you have time for it, DO it. Bake a cake. Have a car wash in the backyard. Go check out that isolated nature trail. Take a tour of an aquarium. Watch Mo Willems’ draw Elephant and Piggie. Follow one of your children’s passions until you’re way into the weeds, whether it’s about the aye aye or Pitbull. (Are you sensing a theme with the Pitbull around here?) If you’re working from home all day, back to back meetings, then maybe plan for 5 minutes after dinner to just connect with each of your kids. Find fun, whether it’s for one minute or hours. We need fun. We need it so, so badly. There’s so much learning that doesn’t happen in a book, on a worksheet, or even in one of the assigned projects. If doing these things puts school on the back burner, it’s okay. We don’t get to a ton of things I planned each week, because something pops up here or there. A Lego castle must be built. A beautiful day calls for a longer walk. Our kids are going to remember this time in their lives forever. And they aren’t going to remember if they made it to the next level of reading, or if they finally mastered multiplication. They are going to remember if they felt safe. They are going to remember if they felt connected. Do the things that bring that to you.
Remember – our kids are competent learners. The world tells us that this is not true. We are made to believe that every minute without structured intervention is a lost minute. We have doctors and therapists that recommend over 40 hours of instruction for 2 year olds. This fear is strong. But it’s going to be okay. Our kids do learn. They may learn different things. They may learn in different ways. They may learn at their own pace, in their own timing. But they will learn. They will learn from your baking, from your getting dressed routines, from your leisurely explorations of grass and butterflies and bumblebees on a sunny day. They can learn from your modeling on their communication device, from the choices you offer, from the problems you present for them to solve. They will learn from chances to play independently and from cleaning up afterwards. This time away from school? It’s going to be okay.
Later this week, I’ll share exactly what quarantine school looks like for my daughter with complex communication needs. It can be overwhelming for parents to figure out how to approach homeschool, quarantine school, or even just homework with our complex students. There just aren’t enough examples out there. My hope is that our schedule sparks some inspiration as we head into the coming weeks.
Note: We are doing the best we can to flip things to virtual learning that often just do not flip very well. An active, movement-based circle with changing activities to meet the changing attention spans of a 3 year old doesn’t translate well to Zoom. We can’t arrange our instructional assistants and their schedules to provide the just-right amount of prompting and proximity. This goes back to grace. We will have to collaborate a lot over the coming weeks as we try our best to find some sort of equity and accessibility in this new virtual world of learning. We know this is not ideal. We know this is not perfect. We want to be in school too.
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.
I’m in a virtual book study exploring Koppenhaver & Erickson’s latest work, Comprehensive Literacy for All. I can’t wait to share the things I learn from the text and the discussion. One of the early elements that always leads to a lot of conversation is around the time piece. Erickson & Koppenhaver recommend a minimum of two hours of literacy instruction per day. This can be incredibly overwhelming when teachers are new to literacy instruction in the special education classroom, but we need to remember that it’s not necessarily one solid two hour block. And, even more importantly, it’s definitely NOT two hours of the drill or discrete trial instruction that many of our students have previously experienced with literacy. It is immersion in real reading, and real writing. It is authentic. It matters.
Our preschool literacy instruction looks different than an elementary school literacy block, because we’re preschool. The primary occupation of preschoolers is to play, not to sit at a table or to complete numerous teacher-directed activities. That being said, it’s still very common in early childhood special education classrooms for literacy instruction to be reliant on rote memorization or occur significantly less than in a general education classroom — especially in special education classrooms that serve students with complex bodies or communication needs.
I get it… We aren’t really taught about emergent literacy, supporting literacy in students with complex needs, or meaningful literacy instructions in our special education programs. I’ve been in special education programs across 3 different universities in 2 different states, including programs that led to both general education and special education licensure. I’ve still self-taught most of what I understand about literacy. Our kids have the right to the same high quality tools, the same comprehensive approach that their peers access each day. As such, I thought it would be helpful to showcase the ways that we target literacy skills across the day.
Of note, I teach in the most restrictive preschool public school placement in my county. All of my students use AAC systems and assistive technology tools to participate in various parts of their day. I mention this because no student is too anything for literacy instruction. Ever.
Personal Belongings: Students practice name recognition by locating their cubby to place their items.
Sign In / Out: We also have had students “sign in” by moving their name, writing their name, or otherwise indicating that they are here. We do a similar activity at the end of the day. Signing one’s name is NOT a hand-over-hand act. It’s not about perfect letter formation. It’s about creating meaningful connections about print — what letters mean, why we write them, what our names are… It’s really important that it’s not just a disconnected routine, but that there is a purpose. I’ve used sign in to help students locate their cubbies, to sign up for an activity, or to help me do attendance. Students typically sign independently first (which could be one dot on a page). We then model how we would write their name. This is a great opportunity for use of alternative pencils.
Schedules: We make our individual schedules with the students each morning. It not only gives us a chance to talk about each day, but to also showcase another purpose behind text and how it can convey meaning. Although our schedules do use pictures (as the goal is to be able to use them independently), we draw attention to the print and the letters. We also can showcase how we read from top to bottom.
Quick activities: We have recently incorporated activity cards into that transition “down time” where students are waiting. We started after seeing a similar activity in an Erikson math video. The use of a visual to reference, combined with communication devices, makes this a more accessible “transition filler” for students. We might look at letter cards and name them, find letter sounds on the keyboard, or think about words that start with certain sounds and letters. If students do not know, then we model and talk about it together. It is not repeated drill of a letter. It is not hand-over-hand “this is the right answer” errorless learning. It is a quick check in, a moment of connection, a chance to chat about letters, numbers, and provide a little structure to time that can be hard for our students to manage independently.
Clean-up Chart: During clean up time, students have assigned jobs. These jobs rotate every week. They can find their job by looking at our clean-up chart that is posted on our projection screen. We use names of students (not their photos) so that they are learning another way print can be meaningful and provide needed information.
Circle Time Activities
Calendar / Message: We start with a 5 day, Monday through Friday calendar in our circle. As the year goes on, we are moving into the full month. But it was really important to me that calendar be something that didn’t just act as a vehicle for literacy and math, but made sense to their lives. I wanted it to feel important and manageable. Our calendar has a picture of what they will be doing in art, any special activities, etc… As a shared writing activity, we use that calendar to create a message about the day.
Words of the Week: We have 2-3 core words every week that we highlight at every circle time. We look at the picture and the text at circle, while I model the words for each child. Some students like to model them for their peers. These words are typically connected to the songs that we are singing.
Question of the Day: We read a question together, and then students respond by moving their names. The question is typically connected to daily routines, special activities, or our thematic content. We mostly ask preference / opinion questions as our students are very emergent communicators, but mix in some fact-based questions at times (e.g., “Which one of these is a dinosaur?”) The question is another opportunity to use their name for meaning, but we also connect the different answer choices to letters and print. For example, one question was, “What do you like to do outside?” We had run, walk, and climb. We talked about each option, modeled it on the talker, and modeled the sounds we hear at the beginning of each word.
Voting: We love to vote! We vote on which songs we will sing, on which activities we should do for sensory, on what we should cook, and so much more. Voting, like question of the day, is a chance for students to make meaningful, real choices using their names and other print concepts.
Songs: We always connect songs with their titles — and sometimes their written lyrics. I’ll also search for our songs on YouTube, while modeling sounding out the word, finding the right letter to enter, and using that search engine. Once again — it’s meaningful, it matters, it’s important to the students, but it also is a fantastic vehicle for building a lifelong literacy foundation.
Literacy Concepts: I didn’t highlight the specific literacy skills for each activity, because they really have an endless number of possibilities. On some days, we focus on letter recognition and letter sounds. We might find the letters in our message, in the calendar, or in our schedule. At other times, we focus on tracking text left to right. Students take turns to track it with pen, pointer, etc. We’ve also clapped the syllables for different words, counted the number of words in out sentence, and practiced touching one word at a time.
Directions: We use visual supports for our art activities, which typically includes a model. I always write short directions to go along with the visual. The staff member leading that activity draws attention not just to the picture, but to the printed directions. Although preschoolers cannot independently read directions, that’s not the point. The point is to model all the different ways that print adds meaning to our lives. The point is that students need to see us reading, writing, and participating in literacy experiences for a wide variety of purposes.
Tell me about it… During and after art, we always encourage students to tell us about their artwork with their talkers. We try really hard to keep this open-ended, and so we might say, “I notice lots of…” and then describe colors, shapes, sizes, etc… We don’t want to tell them what their art is, but we do want to model the language used. We write down ANYTHING they dictate to us. ANYTHING. If that means I write, “one one one one one one one one one”, then that’s what I write. I ask questions. I wonder out loud. I show them how much it means to me that they are sharing their words with me.
Signing: We always encourage students to sign their work! Similar to above, it’s not about hand over hand writing a name. It’s about saying, “This is mine! I did this!” Through repeated opportunity and modeling, we scaffold towards writing their name in more standard form over time — a process that all kids go through.
Activities in the iPad center are super individualized to each student. We have apps that cover a wide variety of rich experiences. Students scribble, draw, and make stories in alphabet and story apps. They match and sort (which is a huge favorite in our room) in ways that include letters and words. The Endless Reader apps are also a fan favorite, especially when each letter makes its own sound. We do also have some interactive books on iPad, which can be a great gateway for students who are still discovering an interest in reading and listening to stories.
Reading – We engage in shared reading activities in groups of 1-3 students. Students also have the ability to self-select books at any time during the day. We are pretty open to self-selection of books happening anytime, anywhere. Shared reading is a different type of experience than just reading the text to students, and I’ll elaborate more on that in another post.
Writing – We engage in shared writing and independent writing several times a week. We use visual structures, assistive technology, and pictures to support students to write. Sometimes we create a story or write sentences together, such as when we each talked about where our monster liked to jump after singing “Five Little Monsters Jumping on the Bed”. At other times, students select images from their week or preferred things and write on their own. This is another process that I’m hoping to expand on in a blog post soon. Because this tends to be a little more teacher-directed, this doesn’t happen every day. With older students, we would likely rotate through this center daily — but we are still preschoolers. We are made to play!
Play – The most important! We have letter toys, letter magnets, giant letters, letter blocks…. We have alphabet dinosaurs, acorns, and lollipops. We have so many alphabet puzzles, from inset piece to 48 piece floor puzzles. We play with song and sound and silly noises. We explore and experiment with letters. We have dry erase markers for coloring on the board. We pull out crayons and shaving cream and play-doh for making scribbles and letters. This is so much more important than any structured writing activity could be at this age!
Pretend Play / Blocks
This is probably where our incorporation of print activities is weakest. I have so many ideas on how to incorporate literacy, but it can be really difficult to implement them. For many of my students, pretend play and blocks tends to be more challenging for them (in comparison to visual activities, puzzles, gross motor, etc). When we add the literacy element, such as making a sign for a building, taking a lunch order, or looking in a cookbook, it can become too much or too teacher-directed. It turns from play to work. We are working to choose one embedded activity that we might include per unit. For example, we are adding cookbooks and menus to our kitchen center for the next few weeks. When we talked about sharks and fish, we had hanging charts that students could reference about sharks and fish. The use of these items is often primarily adult modeled at this time.
However, we focus HEAVILY on providing aided language stimulation (adult modeling of student devices). This is an important part of literacy for our students, as the speaking and listening components are essential to being able to convey meaningful ideas through both spoken and written language. Each and every student in our classroom has access to a robust vocabulary AAC system, which means LOTS of words. We model request, comments, questions, protests, social engagement… Our goal is to model language on a device every single time we are talking and interacting with a student.
Disclaimer: Please remember that the work of early childhood is play. All of what I’m about to say is important, for sure, especially for older kids… But also — we need to stop being so focused on work in early childhood. We have pushed down the work expectations more and more each year, but 3, 4, and 5 year olds — even six year olds — should be playing for the bulk of their day. They should be experimenting, exploring, being curious, and living the idea that learning is a fun, full-bodied experience. That learning is something they initiate, they do, they are. Most of our best learning happens way outside of structured work. That is how we create life-long learners.
There have been a lot of questions over the last few weeks about how we engage in students in teacher-supported and teacher-directed learning activities. I think it says a lot about the culture of coercion that can seep into our classrooms, especially in special education, that this question is so pervasive. Before you get defensive, I have been there. I am writing about my past self as much as anything else. It can be hard for me to sit and reflect on the mistakes I’ve made, even when the mistakes are a decade ago. But I’m grateful for the readings, the mentors, and the students who have taught me along the way. And I will forever be committed to doing better in their names.
Things that I don’t do: withhold all the things a student loves, sanitize the environment, require sitting for instruction, “escape extinction”, physically prompt (force) through all of the actions… And, yes, my students to engage in teacher-directed (I choose the activity) and teacher-supported (we choose the activity together) activities throughout the day. Yes, they work many times throughout the day. Yes, they have expectations and rules. Yes, they learn lots of pre-academic and academic concepts. Yes, you can hold high expectations and meet student needs. Yes, you can accommodate and respect students’ bodies while teaching new concepts. Yes, you can pursue student interests and celebrate who they are.
We focus on relationships and felt safety. Students need to feel safe. Students need to know that they can trust you. Students need to know that you will not harm them, that you will help them self-regulate, that you appreciate and honor their needs. This comes first. No other learning can happen when our stress systems are activated. There’s a reason “connect” is the first step for responding when reading any discipline book that wasn’t written by behaviorists. (I recommend basically everything by Daniel Siegel, by the way.) If we spend the first days, weeks, and months of the school year working on establishing these relationships and building self-regulation skills, that is not lost time.
We use visual supports. We have picture schedules, work time schedules, bathroom sequences, visuals for where things belong… We have pictures of what work looks like, what specific expectations look like, what self-regulation can look like… I do not make visuals just for the sake of making visuals. I assess the needs in the classroom and make visuals that will support students to meet expectations. A great example of this are visual cues for directions. In the past, I’ve printed visual cues from TPT — and promptly found that none of my staff were using them. It was overwhelming; it wasn’t targeted to our specific needs. This year, keychain lanyards are specific to our class rules & lining up. These are the times we’ve most found that we need a visual cue. And now they are both used by staff and understood well by students. This means I can’t usually print a bunch of stuff off the internet. I have to custom-make our visuals, and I have to do so many times throughout the year. But they actually work for the needs that come up, and that’s what matters.
We adapt the work to meet the need. I have students who complete 5 work tasks in a row, who work for over 15 minutes, who have to be told, “Please leave work time, because your friend needs to take a turn now.” I also have students who have been working on completing 1-2 actions with an object. Or students who need to take three 15-30 second breaks of running across the room before finishing their work. This is the power of rotating schedules — flexibility to meet student needs. If a student can only work for one minute, then we start with working for one minute. If a student can only do 3-5 pieces of a task, then we might start at 2-4 pieces. We build stamina and engagement over time, rather than forcing a pre-determined time and wondering why students are melting down. Some students prefer to do the hard work first, followed by the easier thing. Others prefer to build momentum by doing easier tasks prior to hard ones. The work itself is also adapted to the student need. For example, if we are sorting letters and numbers at circle time, a student who has trouble scanning an array of 8-10 items may go last — when there are less items to scan. If we are doing finger-painting art projects, but a student detests the feel, we may let them do it with the paint inside a Ziploc. Or just give them a paintbrush, it’s not that big of a deal.
We pursue student interests. Notice that it doesn’t say use student interests. I don’t artificially stack on interests in an attempt to get students to do what I want. I don’t just stick a picture of Mickey on a folder and call it a day. But we do pursue their strengths and interests. If a student loves to count, then I’m all about building on their math skills and expanding the depth of their counting. If a student loves everything alphabet, then let’s practice problem solving and spatial awareness with alphabet puzzles. Let’s look for letter sounds with magnet letters hidden in our kinetic sand. We can read No David for the four hundredth time. We can match letters and sounds within a book we made about your favorite song. If a student loves the magic of dropping something inside a bin, why not do sorting with these bins instead of plates? My daughter’s OT used to practice categorizing with her favorite television shows, so they could talk about her favorite characters, their catch phrases, how they are alike and different. One of my students loves to make pretend soup. I’m going to the library this week to get cookbooks and picture books that will enrich his already awesome play. These are all authentic tasks, expansions on interests.
We are flexible about seating. Students don’t have to sit. They can stand. They can sit in a chair. They can sit on a stool. They can sit on the floor. Yes, I have students that get their work tasks, bring them to a preferred part of the floor, and complete all of their work there. It’s fine. People worry about — “but what about when they are 19 and they have to XYZ?” They aren’t 19 now. We have to stop the pushing down of developmental expectations. We don’t get ready to sit at 19 by forcing extended siting at age 4. We get ready by teaching self-regulation, self-advocacy, motor skills, engagement, etc…
We are thoughtful about scheduling. Most people think of scheduling simply as “if you do the work, then you get this awesome thing”. But that’s not exactly what I mean. When I schedule rotations, I’m very mindful of how, when, and where each student gets placed. Some students need to move their bodies very hard and active before they are able to engage in teacher-directed work, so they may have lots of gross motor play before their work time. Some students need a big chunk of free play time, while others prefer more structured tasks. Some want to complete all of their work at once, while others prefer it split into many sessions. I also work really hard to make sure that no one has to leave a most favorite thing in the world to go to their least favorite thing. Because who would ever want to do that? Mindful scheduling also applies to large groups. I schedule circle at times that will be successful for the biggest chunk of students. Before our morning circle, students may be engaged in gross motor play, sensory manipulatives, or morning snack. Those activities are available to help student self-regulate and adjust to being in the classroom in a way that meets their needs. They are then much more ready to learn and engage in a big group activity. Morning circle tends to be our most successful of all activities because of this.
We talk to our students; we empathize. Hard work is hard! We use “we can do hard things” from Glennon Doyle as a catch phrase all the time. It started in my own family, became a class mantra, and now is even in our student talkers. We all need pep talks and encouragement in our lives. Our students need it too. We talk to them and visualize why something is important. We talk about how work time is like exercise for our brains, making our brain grow in the way that running makes our legs stronger. We talk about how letter sounds help us read words. We empathize with challenges, offer help, and problem solve together. Our students also do not have to be able to talk back yet for us to have this conversation. It is basic respect.
We are mindful of anxiety, apraxia, and pathological demand avoidance. I’m not going to go into detail about each of these things, because they are all their own long blog. But I think it’s important for special education teachers and support personnel to become more educated about each of these — what they can look like, what they feel like, and how they can be accommodated. Work with occupational therapists, speech therapists, and other knowledgable professionals. Read the words of autistic and disabled adults who write about their experiences. For some students, it can be as simple as asking a question and providing plenty of wait time, rather than giving a demand and expecting it to be completed. Others may need a lot more accommodations. That’s okay. That’s what we’re here for.
What Work Time Looks Like
Work time can look very different depending on the students’ needs.
Student A. We approach SA with their schedule. “Let’s check our schedule, it’s time for reading.” Student A takes the picture from the schedule and matches it to the books center. We point to the visual “choose a book”. SA looks at the books but does not make a choice. We wait. After 15-20 seconds, SA picks up one book. We bring their book to the table, pull out a seat, and ask SA to sit with us. They walk to the table and open their book, which happens to be a favorite. We browse the pages together, using core words to describe what we see, pointing out letters, and asking students where various things are. When SA touches the words on a page, we write an observation note. After we have flipped through their favorite alphabet book several times, SA looks to us, looks to their talker, and says “go”. We say, “Yes, of course, go. Can you put your book away?” We hand the book to SA. They put their book on the shelf and run to gross motor center.
Student B. We approach SB with their schedule. “It’s time for work!” Student B is playing with an alphabet puzzle and just put the letter J in the puzzle. “Oh, I see you are finishing an alphabet puzzle. Let’s finish the puzzle, and then it’s work time.” Staff allow Student B to finish placing all of the letters in the puzzle without interruption. Once SB is at a stopping point, staff show the schedule to SB again and offer their hand. SB takes the adult’s hand and walks to work time. When they get there, a shape and color sorting activity is on the table. SB stands at the table and begins to look at each shape. They pick it up, twirl it, and examine it from multiple angles. Staff allow this exploration of materials, because, really, why not? After several minutes, SB attempts to put the square in the circle hole spot. They try this multiple times and then put the piece back down. Staff state, “Hmm… let’s try a different way.” Staff pick up the square and place it on the square spot. They repeat this action several times so that the student can see what they are doing. They hand the square back to the student, who then places it on the square. The student and staff member celebrate this together. Later, the student has trouble with matching the triangle and needs to twist it. After showing, the student is still not able to do so. The staff person asks the student: “Can we do this together?” and holds out her hand. The student puts their hand on the adult’s, and together they twist the triangle to put it in. They do this together for three triangles. The student takes the fourth triangle and puts it in independently and grins. Staff give the student a big high five!
Student C. Student C is listening to a “Baby Shark” book when we approach to show them their schedule. Baby Shark is their all time favorite. We remind them, “Yes, you can bring Baby Shark, but it’s work time” and hand the work time picture to them. They begin walking to the right area, but then walk to the side and hang the picture in a different place. Staff grabs the picture and says, “Work time is this way. Let me show you where I hang this.” Staff get low next to student and point to the work time area, showing the picture again. Staff offer the picture to the student, but the student does not take it. Staff carries it to the work time area and calls the student. The student walks towards the staff and approaches the table. The student places their “Baby shark” book next to their work time area. They look at their work time schedule, pulling the “triangle” off and matching it to triangle on the shelf. They take the “triangle” bin to the table and complete the puzzle inside. They put the bin in finished. They look at their schedule and see “square”. The student does not take the square picture, but turns to the shelf of work time activities. They pull off the circle bin and bring it to the table. Staff say, “Yes, you love the counting cows! Let’s count!” and joins them in counting the cows and putting them in a line. After several minutes of playing with the counting cows, staff point to the student’s schedule and show the square again. The student puts the counting cows in the finished bin, takes the square and matches it. The student then completes their second work activity.
Student D. One staff approaches Student D with the art time picture. SD takes the art time picture to art and hangs it. They look at the art project for today, which is creating a tractor from construction paper cut-outs, and then run away. Staff wait for one minute for the student to re-regulate and then approach again with the art picture. The student says, “No no no no no” and then hides their face. Staff say, “We will try again in a few minutes.” After several minutes have passed, staff re-approach student for art project. The student continues to refuse. Staff go to the art center, collect the student materials and bring it to the student on the tray, moving to where the student is. Instead of forcing the student to participate through physical prompting, staff opens the glue and begins to put the glue on the tractor piece. After glue is on the piece, staff offer it to the student, “Where should this go?” The student turns their head. Staff place the tractor piece on the construction paper. Staff put glue on the wheel and then offer it to the student. The student turns towards staff this time, and watches as staff puts it on the tractor. The student maintains gaze on the art project, so staff offer the glue stick. SD takes the glue and puts a speck of glue on another wheel. Staff exclaim, “I love it when we work together!” and finish putting the glue. They hand the wheel to the student and they place it on the paper. Staff and student continue to work together, taking turns and doing different pieces of the art project until it is complete.
Student E. Student E uses a first/then visualization to help them throughout the day. This student also uses iPad activities for learning. We do schedule the harder, more hands-on activities prior to the iPad sometimes. Hard work is hard. Many of us need time to self-regulate after completing something challenging, and this student self-regulates though iPad play. The sounds, the visuals, the structure all seem to help them stay feeling good in their brain and body over the day. It has really helped this student to 1) know when iPad is on their schedule, 2) know what comes after hard work (it’s not always iPad), and 3) know exactly how much work they have to do. One way that we prevent this from becoming coercive is by having iPad scheduled multiple times through the day. We have times where all students get access to iPad, and that includes this student. We do not hold their work from 10am over them at 11:30am. At other times, the schedule might read “first circle time, then Starfall”, “first reading, then work time”, and “first lunch, then play centers”. I share this to emphasize that the first/then board is not a token economy, but is specifically about making the schedule and expectations visually clear.
There are some really meaningful conversations around abuse prevention happening over in one of my favorite AAC groups today (AAC Though Motivate, Model & Move Out of the Way, managed by Kate Ahern). The statistic on abuse in the disability population are appalling: 1 in 3. I’ve written about the ways that physical prompting can — even if unintentionally — teach our kids that other people are allowed to manipulate their bodies.
This is only one piece of the puzzle, however. It’s one piece of teaching consent, one piece of creating a classroom culture that is centered around respect. We are not only working to prevent abuse now, but we are teaching children and their families advocacy skills and environmental expectations that can help prevent abuse in the future. Below are some of the many other pieces that our essential to our classroom.
Our classroom has an open door policy. Parents are always welcome in our classroom, and for as long as they would like to be there. We literally keep the shade on our big window on our door open at all times. We keep the window shades open on at least half of our windows. When toileting, the bathroom door is cracked open at all times (balance between privacy and safety). I would be 100% okay with the push for videos in special educatio nclassrooms.
We fill our classroom with general education students. I do teach in a self-contained setting. It is something I wrestle with often, as I advocate inside and outside of schools for inclusion for many reasons. And it’s a whole other post conversation to be had in the future. In the meantime, we have general education students in our classroom for 40-50% of our school day. We’ve had years where we’ve been able to have general education students in our classroom for even more. I trust myself and both my staff, but having general education students who are more easily able to report on what happens in our classroom only increases student safety.
We document, document, document. If something happens to a student, if they fall, if they bump their head, if they skin their knee… We write down exactly what happened and what it is. This establishes the expectation that we should know what is happening to students — and that it should be shared. I would add that we share tons of information about what students are doing each day. Abuse prevention is one piece, but there’s also educational neglect. My daughter has sat in rooms where she did nothing all day. It’s not okay. We share all the cool things that we do during our super busy day so that we can celebrate kids, share their wisdom, and establish the expectation that school is for learning.
We are all about cooperation & shared control, not compliance or power over. First: I do not “sanitize the environment”. I do not make students “use their words” or tell them that the only way to good things is through me. That is not the classroom that I run. Students have access to things that they cherish all throughout the day, freely. Students also have unlimited number of breaks. Yes, unlimited. Does that mean there are times when a student takes so many breaks that we don’t get all of their work done in one day? Yep! Is that okay? Yep. We are also flexible. Sometimes we work at the table. Sometimes we bring the work to you. Our focus is on meeting student needs as much as any need for instruction. Sometimes, our entire focus is on social-emotional regulation, sensory regulation, and communication. Those are really important skills. (And if a student is having to take that many breaks regularly, then we need to go back to the drawing board re: the tasks, accommodations, and assistive technology.)
We center our classroom around communication. Respecting students’ communication to us — in all forms — comes first. Modeling language on AAC, whether that’s high-tech, gestures, ro some other form, comes second. Between the two, we are teaching students that their voice matters, that their voice should be respected, and that there are multiple ways to express what’s important to them. We also need to make sure that words important to students and important for abuse prevention are available. They need to be able to say: no, stop, don’t, don’t want to, don’t like this, etc… They need words that can express something is wrong, whether that’s illness, injury, or being hurt. They need to have body parts (all of them) so that they can accurately report if something happens to them. It doesn’t matter if it takes their entire school career for a student to accurately report an injury, it is always, always worth it. Do not give up. Do not fall back onto “requesting only”. Do not fall back on to nouns.
We center respect in every student interaction. We need to think about what we are doing with and to students. We need to think about where we are placing our hands and why. The vast majority of the time, we don’t need to physically prompt students. The limited amount of times that we do, we can ask for student consent and be mindful of how we do it. For example, when walking down the hallway together, we hold hands. We don’t hold wrists. We don’t hold forearms or upper arms. We listen to students’ bodies: pulling away, tightening, facial grimacing… These are all ways that our students say no to us.
If a student drops to the floor while holding our hand, then we sink with them and get low, releasing the hand as soon as we can. We don’t hold a student’s hand up in the air as they lay on the ground. If a student is upset, we wait. If a student won’t do something, we re-evaluate how we are doing it. We don’t pull or push or maneuver our students’ bodies. When I want to have a face-to-face conversation, I get low and kneel next to a student to talk (without ever forcing eye contact). I might offer my hands for them to hold or squeeze. I don’t hold them in place. If they are about to engage in dangerous behavior, such as throwing a large object, I move the object, not the student. If a student is grabbing something, then I move the object, not the student. I don’t block students in an area with furniture. I don’t use seat belts or tray chairs. And — once again — when the culture is built upon respect, when communication is foundational, when the focus is on regulation and accommodation, we don’t have to worry about these things that much.
We talk to students about what is happening. There are times we have to be in a student’s space. This might be when we are supporting them to stretch their muscles, to change positions in a chair, or simply wiping their face after a sneeze. We can still tell students what is happening, why we are doing it, and respond to their needs. We can talk to them directly: “Your nose is very messy. I know you don’t like for me to clean it, but I really need to.” You can offer choices: “Would you like to wipe your nose, or would you like me to do it?” or “Would you like for me to use a wipe or a tissue?”
We listen to our students, even when they are refusing something that feels really important to us and for them. If my daughter’s hip stretch is too much, she will push back. Her physical therapist doesn’t push into it. She waits. She waits to see if the discomfort will pass. She might try the other leg and come back. She might ask my daughter to move a certain way. But she respects what my daughter’s body is saying. She talks to her about what is happening: “This muscle is really tight, and we really need to stretch it. It might be a little uncomfortable but it shouldn’t hurt. Let me know if it starts to hurt.” Shockingly (sarcasm intended), this is what doctors and therapists and people due with neurotypical and nondisabled patients all the time. It’s the same.
We consider abuse prevention in instructional planning. Even when a class or school culture understands this with behavior, there is a continued use of hand-over-hand prompting in instruction and communication. There were so many times that my daughter came home over the years with work that was so clearly not hers. But the use of hand-over-hand prompting within instructional settings is still teaching students to be passive. It is still teaching students that adults are in charge of their bodies. So when we plan our instruction, we need to plan how we can support student learning without that reliance. What accommodations and assistive technology support can we include in this lesson? What ways can a student participate without needing their body to be moved? What other prompts might be effective?
It also means teaching the skills that, over time, build up to being able to self-report. We teach names. We teach pronouns. We teach body parts. We teach words for hurt, burn, sick, hit, bad, dislike… We teach sharing of messages, such as sharing with an instructional assistant an activity that a student completed with me. These aren’t words that always can be made concrete. They can take a lot of modeling, a lot of immersion. All the more reason to start in preschool, not after some arbitrary prerequisite has been met re: “traveling” with a picture symbol.
When we do use physical prompting, we ask. Yes, I’ve probably said this a dozen times before but I’m saying it again. We ask. I have “ASK CONSENT” in big, bright red letters on our prompt hierarchy (as well as a note about how this is the least preferred prompt). Sometimes, I have students for whom pointing to an image, modeling an image, using a pointer, etc, are not effective for that very first time of finding a word on a talker. I ask: “Can I help you?” and hold out my hand. They are free to say yes or no. We occasionally teach skills that benefit from a few times of doing something together (pedaling, the scissor action). I ask. And I remember that consent can be revoked at any time. I remind students that they can revoke their consent at any time. And I 100% listen when they do.
We reflect on our practices, always willing to change. Earlier this month, one student was trying to take another student’s talker. They all have talkers, so this student did have an identical one they could use. I blocked the taking of the other talker, and the student became quite distressed. I then made the mistake of touching the student’s wrist — not grabbing, not holding, but a light touch that was meant to be calming. Except it wasn’t, and I get that. Light touch + me = I cringe (understatement). I was trying to be helpful, but I wasn’t. I was in their space and I was providing light touch that likely pained their sensory system. I was the exact opposite of helpful. The student escalated.
But — I didn’t blame the student. I acknowledged my mistake. I apologized to the student when we were able to talk. I apologized and reminded him that I will not make his body do things that he does not want to do. I talked through the moment with my staff, discussing again the importance of giving this student space to work through his feelings without us being all in it.
This is part of the process of growing as a teacher and of unlearning the ableist and oppressive culture norms that we’ve been raised in. It means sitting with our mistakes, being open to feedback. It means reading blogs, and thinking: oh, maybe I need to think about doing something differently here. It means being open to change. We can keep doing better.
Assessment is important. It’s kind of weird to hear me say that, right? I often write about how assessment underestimates our kids, feeding into harmful cultural norms around disability supports and education. All of that is still very true.
Yet I use ongoing assessment to drive my instruction. I sit down every week to review our data before designing my instructional plans or activities. I use it to know if my teaching is working; I use it to adapt and course-correct when my teaching is ineffective.
How? How do I make assessment work for my students?
The answer lies in both how we assess and what we assess. It lies in what we “count” as learning, what we “count” as demonstrating knowledge. It also lies in how we use those assessment tools.
What are we assessing?
What we choose to assess is as important as why and how. Too many times, my daughter’s assessments have basically been about assessing her competence. They are normative tools that showcase all the ways she is not reaching neurotypical milestones. We already know she’s neurodiverse. We already know that she has her own route and map to her best life.
There are better ways. We can assess what skills are emerging, and develop plans for strengthening them. We can assess a student’s environment to see what is or is not working for them. We can work with our students to determine what goals they want to achieve, and assess how we are doing to reach those goals. We can focus on grade-level curriculum and standards. There’s so much more to teaching and assessing than a list of neurotypical skills in development.
Why are we assessing?
Assessment, for me, is almost entirely about what I can do to better support my students. It’s not about demonstrating what my students cannotdo, which is often the purpose of testing in special education. It is certainly not about setting up a prerequisite where students cannot access XYZ pieces of education until they prove themselves. If I have not yet determined which letters a student knows or does not know, that doesn’t mean that we won’t talk about letter sounds, engage in writing, or enjoy books together. Think about general education students. They don’t always master all of the material in one unit, but they aren’t held to learning that same unit over and over again all year. If you get a C on a geography test, they don’t make you keep practicing the same map as your sole activity each day before you can study early indigenous cultures. Instead, we spiral back through the material throughout the year, scaffolding and supporting students as we go.
And that is what I use assessment for — what do I need to scaffold? Where might I need to more accommodations? Is there something that I should draw attention to more explicitly, even as we move forward with our curriculum? Did I create meaningful experiences that allowed students to make deeper connections? Were students engaged? Did students have the opportunity to show their knowledge through a wide variety of means? Where might we need to include more assistive technology? This reflective process — a process where I adapt to meet the need of my students better — is what makes me who I am as a teacher.
How are we assessing it?
This is the entire crux of when assessment works, and when it doesn’t. Our students have a million barriers that make it difficult for them to show their knowledge, talents, and skills in a typical setting — anxiety, apraxia, communication difficulties, sensory processing needs, on and on. I am not giving tests. This doesn’t just mean pen and paper tests, but also “testing” of knowledge. I am not sitting at a table with an array of picture cards, asking students to touch or point to something. I am not withholding items or “sanitizing the environment” to force a specific type of communication. And this is true of everything I assess: literacy, math, conceptual knowledge… It’s not about showing something when I want how I want. I don’t think that helps anyone.
And I know there are those out there who will say, “but you need to be able to show a skill on XYZ.” I was in a webinar this summer where they said “well, even if it’s not a knowledge problem, it’s a performance problem.” I don’t think it is. I think it’s a “our culture is super ableist and expects things to look a specific way” problem. The answer to that problem isn’t to force our students to show up more neurotypical, or to withhold education until they can show skills the way we want them to.
The answer is to be flexible.
The answer is to observe.
The answer is to listen.
Assessment is about “capturing a moment”. It’s noticing the things that our students do during the day, the subtle and the dramatic. We take observation notes, photographs, and videos to create student portfolios that stand out stronger than any of our numerical data or graphs. We add student work: their writing, their buildings, their collaborative group creations. It’s messy. It happens during meaningful experiences, sensory-rich and hands-on. It happens when they are exploring alphabet letters, reading books with an adult, or running around on the playground after peers. The thing is: when we want to see learning, when we want to see our students’ competence… it’s everywhere.
It’s the student whose eyes track the words as you read the title, even when they cannot get their hands to touch the words along with you. It’s in the student who looks at your feet every time you sing “if you’re happy and you know it, stomp your feet.” It’s the student playing with alphabet magnets and periodically naming them to themselves. It’s the moment that you’re passing out Play-Doh tools, saying “take one”, and a student grabs just the red roller. It’s when a student chooses the snack bag that is more filled. Or a student who plays with blocks by separating out all the little ones so that they can keep the bigger Legos only. How much can you learn about a student when, on a Friday, you say, “Today is…” but their favorite activity happens on Tuesday, so they yell out, “It’s not Friday!” All of these are moments where we learned something about what our student knows. They would be ignored, unseen, or discredited by some. And our students would slowly start to shut down, stuck in a world where they have to constantly prove something.
It’s also about listening and observing the environment to notice what “gets in the way”. For example, a student may be able to locate their shoes in their cubby when the environment is quiet, but not during the “goodbye” song. This doesn’t meant that they cannot follow one step directions, or that they don’t know what ‘shoes’ means. It means that we need to consider accommodations to support the student to be successful. It means not asking students to shift attention rapidly (or when a favorite song is on). It means giving transition time. It means noting that this student uses context clues and routines to increase their independence, which we can use to support them across other activities as well. That’s what I mean when I say that assessment is about capturing knowledge and changing my teaching. It’s not about proof.
Because that’s the thing — I don’t need proof. I know my students learn. I know my students are creative thinkers, problem solvers, competent and capable. I never presume anything less.
(P.S. – I recommend sharing and celebrating all those moments that you capture with students and their families. They will spend most of their educational career being told what they cannot do, unfortunately. Be different. Show them there’s a different lens.)
I’ve mulled over writing this post for a while. There are so many voices out there who have better spoken about the challenges of ABA therapy. The voices that should be the loudest are #actuallyautistic individuals who have lived through ABA therapy and are begging us to listen.
They aren’t being heard enough. So I write, in hopes of bolstering and supporting their words. I write at the unique position of being a professional who has been pressured to pursue my BCBA, and as a mom to a child who has been pressured to enroll her in ABA.
(And go read from this list. Seriously. So much important stuff.)
I’ll start with my daughter’s story. She has unfortunately experienced ABA therapy twice in her life, and it is a deep regret. They are my mistakes, ones I own and can never fully make up for, though I try. Her first experience was in a private school placement. We had found out that she had not been safe in school. We advocated fiercely for a transfer within the public school system, but were rapidly running out of time and options. We chose the private school that, at the time, was least committed to doing things the “ABA way” with her. Or so it seemed. We ended up fighting to bring her back to public school. (Happy ending, at least: she is now with a teacher that is about as far from ABA as you can get… and having the best education she’s ever received.)
Her second experience was when she was 12 — and in pain. She was in so much pain and expressed her distress through her actions. I am not going to get into all of that, because it’s her story to tell. My story is about how we went to multiple doctors at multiple places. The recommendation, again and again, was ABA. I knew in my heart that ABA was not right for us. We had lived this before. We saw that it was not a match. We knew knew ABA would not solve this problem. I knew that she was in pain and that we needed to find the answer. After over a year of searching, it felt like doctors would not even look until we enrolled her in ABA therapy. We reluctantly enrolled her after asking for numerous recommendations for an agency that would focus on her communication device, participating in her daily life routines, and respond to our boundaries and feedback. We honestly hoped that we were going to get one of those places that doesn’t really do ABA but bills as ABA**. Except we didn’t. (Another happy ending: we found an amazing medical team, got appropriate treatment, and know they will always listen to her pain.)
We lasted not even 2 months before quitting.
We rarely saw the BCBA. When you go to therapy for anxiety, you see the licensed counselor. They provide direct services. When you’re in a special education classroom, the special education teacher is in that room supervising every single day. They know your child. But within ABA, the person that designs the instruction, makes the rules, determines what and how to teach? They may see your child less than 5% of their service hours. When she received in-home therapy, the BCBA met her one time. Once! In six weeks! That is a travesty and it happens way more frequently than most agencies are willing to admit. Instead, the person serving her may have little to no experience in education, psychology, learning, disability studies, or anything related. They may receive minimal training and support. And yet, here they are, getting all the funding and all the attention.
ABA is built on the prerequisite model. ABA therapy is built around breaking big tasks into smaller pieces. This alone would not be problematic. Breaking things down can be helpful. The problem lies in what we break down, how we teach it, and how we move on from it. For too many of the children in my life, “how we move on” has meant never. Arbitrary and meaningless “mastery criterion” kept my daughter listed as a “pre-learner”. The insistence on keeping a list of words that can be performed on command for 80% of opportunities across 3 people and 3 settings prevents students with apraxia, anxiety, or just a desire for communicative autonomy from having their voices heard. The inability to break down some concepts into easily measured discrete pieces prevents some children from ever accessing them (e.g., non-speaking students and true literacy instruction). ABA therapy was unwilling to address any of the goals that we had for our daughter, because they felt they had too many prerequisites to teach first. Prerequisites that we told them she already had. Prerequisites that were sometimes completely disconnected.
New ABA is old ABA. Knowing what we know, we set a lot of rules around in-home ABA therapy and supervised every session. We emphasized in every phone call that our focus as on meaningul activities connected to every day life and expanding my daughter’s use of her talker through modeling. The moment I broke was when I sat and watched an ABA therapist say to my daughter, “Hi Jane, what’s your name?” and then prompt her to say “Jane” on her talker. She had literally just said her name. They proceeded to repeat this several times in a row. I interrupted it before it could go on any longer. This moment just epitomizes everything for me. It showcases exactly what the therapists, BCBA, and system think of my daughter. To say her name to her face and then ask her what her name is… To ask that question in repetition… I offered advice, such as talking to my daughter about why being able to answer her name is important, talking to her about practicing & role play, and so on… Rather than take any of that advice, they just stopped working on anything with her device (see below, re: ABA is the only way.)
ABA still wants to control what my daughter loves. The moment that my husband broke was when they asked us if we could take my daughter’s iPad and iPod away for a hour before they came, so that these tools would be more powerful for them. We refused. They pushed. We refused. For starters, no, I am not going to take things my daughter loves away from her so that you can use them to manipulate her. Second, my daughter has physical disabilities in addition to being autistic. Taking away her iPad and iPod mean taking away her leisure activities, ones that she adores partially because it’s one of the few things she can do all by herslef. Finally, if we have to remove everything a kid loves in order to get them to love us, what does it say about us? What does it say about our actions? And what kind of professional are we if we ignore this information? Her current team certainly doesn’t. She listens to music all day, with her only restraint being volume and school-friendly lyrics — and still does all of her work.
The ABA way is “the only way”. Trying to get any BCBA or ABA therapist in this child’s life to ever listen to us about AAC, vision, or motor needs has been nearly impossible. Bringing in other professionals has rarely made a difference. We’ve met ONE BCBA who truly works as part of a team. Why is this so hard for them? How has ABA taken control over every other field, from feeding to speech to anxiety to riding a bicycle? At the time, I had over a decade of experience in supporting children like my daughter. I had all the experience of being her mom and knowing her deeply that they did not have. Yet I never felt so belittled and unimportant as when they pressed the need for “parent training” — while never actually defining what this meant.
They are always there. This was my husband’s ultimate complaint. When was my daughter supposed to be able to have a life? We asked for 2-3 days of 2 hours, at most. They wanted to provide over 20 hours. They wanted her to be pulled from school to provide that 20 hours. They wanted to somehow go to her school and do more hours there, interrupting her education. They always seem to want more. Their answer to “this is not working” re: a plan or strategy — let’s do it MORE. My daughter was a 12 year old girl. She deserved more in her life than ABA therapy. She deserved swimming in the pool and chilling in her room watching YouTube and spending time with her family. She deserved a summer.
Work as an act of love, or work as an act of work. We never really connected to our ABA therapists. I know that some families really connect to the people in their home, but ours always felt like they were coming to work. I can’t understand it. I go to school every day as a teacher with fire and passion in my heart for the little ones I serve. I delight in them. I adore all their habits and quirks and big personalities. I am the first one to celebrate every success, your child’s biggest non-family cheerleader. Maybe that’s unfair, but if you’re spending 20+ hours with my daughter — it needs to be more than work.
Turnover, cancellations, and the like. Turnover in the field is high. We stayed with in home ABA therapy for six weeks. We had 2 therapists and 2 BCBAs in that time period. We were in private school for 2 years. We had 5 BCBAs, a huge chunk of time with no BCBA, and who knows how many number of instructional assistants… And cancellations by therapists for in-home therapy were high.
And they still didn’t help with “behavior”. After all of that, they didn’t even do what they came for. Her private school didn’t help problem solve her distress behaviors. They didn’t disappear until she was back in public school. Her in-home therapy team was worthless at helping to collect data to analyze for patterns in what could be triggering the distress, the data that would have helped us advocate for her with her medical team. They took frequency. They wrote down what happened directly before or after. But that’s not enough. We needed to look at sleep, eating / what she ate, weather, seizure activity, symptoms, and missing supports. We needed to model pain-related vocabulary, protesting, and complaining. 7 BCBAs in her life and not a single one did these things. Not a single one.
It would be easier not to write about this, if only over the shame I feel when I think of those choices. But it needs to be shared. I’ve been stuck in a system that feels as if there is nowhere to turn. My daughter and I have both yelled and screamed and begged to be heard, while being completely shut down. We have been bullied. (Teachers, please don’t do this to your families. Respect the decisions they make for their child’s life outside of school.) If we were able to do it again, we would home school. We would travel as far as needed to find the doctor that listens. But not everyone has that luxury. A single parent working multiple jobs doesn’t. A parent without health insurance doesn’t.
That’s why we have to continue to share. The current system has to change. The way that insurance and professionals gatekeep and dictate what is right for their clients, instead of their clients deciding what is right? That has to change. There are pitiful supports for both disabled individuals and their families, across the board. There are few doctors who listen, few school systems that include, and way too few funding for communication systems, adaptive equipment, retrofitting spaces for physical or sensory needs, personal care attendants, classroom staff supports, and so on… There is so much support and money for ABA therapy, while everything else is left behind.
This won’t change just by switching to “nice ABA”. It is only going to change when we overthrow the ableist foundation on which it’s all built — that people become more worthy as they become less visibly disabled.
People are worthy of the supports they choose now. People are worthy of accessible communities now. People are worthy of quality & affordable healthcare now. People are worthy of being seen — not just as people to support, but as people with thoughts, feelings, talents, and skills that are important to and for the world. Now. My daughter deserves real therapy when she needs it, real education always, and real support from people who love and appreciate her. Now.
And that is why we quit ABA. Forever.
Part 2 documenting my own story will be posted later this week. I’ll also share what we do at home instead. What I write about every day is what I do at school instead 🙂
** I know realize the problems inherent to people practicing something not ABA but billing as ABA. While it’s great that a child can access supports that are helping them, it makes it more difficult for others to differentiate between harmful and not harmful. The non-ABA lends credence to the ABA, as people hope that they can enroll and get basically a play therapist (as we did). It also makes it more difficult to advocate for insurance and other support networks to better fund non-ABA supports.