Review: Red

white cover with a crayon coloring blue all over it, but the crayon is labeled as red.Genre: Picture Books

Release date: February 3, 2015

Synopsis: The blue crayon is mistakenly labeled as red, and suffers an identity crisis from trying — harder and harder — to be what he is “supposed to be”. Eventually, Red discovers the best way to be true to themselves is to let go of the rules… and be blue!

Disabilities represented: This book has been used to celebrate neurodiversity, gender non-conformity, and pride. It could be used to talk about disability and difference in other ways too, always coming back to the essential message: be you.

Review: This is a favorite in our household. My 12 year old still picks this up to read, as evidenced by our missing book jacket and torn corners. The beautiful and bold illustrations bring the “be you” message to life, as children literally see in front of them that there is no other way to be. But this story doesn’t just benefit children. It reminds all of the adults in our lives that happiness & joy come from allowing the people in our loves to just be. We don’t have to force neurotypical movements onto their bodies. We don’t have to force gender-normed clothing or activities. We don’t have to assume “can’t” and defiance and incapable.

There’s this scene where the teacher crayon tells the student crayon to draw strawberries. All of crayon’s strawberries are blue, because, he’s… blue. I think about all the times that children are asked to do something, especially our neurodiversity children. To identify a letter. To find a group of numbers. To draw a specific picture. I think about the assumptions professionals in their lives make: they can’t, they don’t know, they’re not listening, “they’re not ready”, “they need prerequisite skills”.

Or… maybe… just maybe… they’re blue.

Truly: a classic that I wish every child had in their class, school, and home libraries. Highly recommend.

Review: OCDaniel

teal book cover with crossed out numbers all over it... the title is written in a black marker font (OCDaniel) over a q-tip character with yellow hair.Genre: middle grades contemporary

Release date: April 12, 2016; this book is probably at your local library!

Synopsis: Daniel is a young teen who is struggling to find his place in the world — to find his friendships, to find his place in class and on his football team, to navigate early romance… Add to all the typical teen self-discovery, he also struggles with high levels of anxiety and needing to complete intricate routines to stave off those fears. And then Daniel meets Sara, who needs his help to solve the mystery of where her father is. Sara, who is honest about her own journey with mental illness.

Disabilities represented: primarily focused on obsessive-compulsive disorder, but also discusses depression, schizophrenia, and other mental illnesses

Note: The author has obsessive-compulsive disorder and writes about the autobiographical components of this story in his author’s note at the end of the novel. I’ve included a major spoiler at the end of this review, with a warning if you would like to avoid it.

Overall: 5/5 stars.

Review:

“Then there is only dread—the kind that sits on your back and claws at your head and doesn’t let you see happiness or hope or anything.”

I loved this book. Loved. King captures the internal feelings that come with compulsions so well that you may feel them in your own stomach. He captures the desperation, the feeling different, the confusion when they first begin. The way they cannot, cannot be ignored. He captures it all — but he does so without adding to the shame and stigma that our world so often perpetuates. If anything, over the course of the novel, he slowly peels back that shame that readers may feel as he peels it back from Daniel.

My favorite, though, is Sara… Sara lists her labels with nonchalance, as if they are just part of who she is. Sara, who talks about medication and therapy and how helpful it can be to know who you are. Sara, who shows that you can have mental illness and be brilliant and loving and brilliant. Sara, who shows that true friendship is. Sara takes the novel from a 4 star to a 5 star for me.

The one element that didn’t really hit home for me was Daniel’s short story excerpts. Periodically throughout the novel, we read Daniel’s own writing about a boy who feels alone. I understand the intention behind these pieces, but they really interrupted my reading flow. Others may find that they add to the emotional nuance.

Be sure to read the author’s note at the end. I appreciated King contrasting true OCD with the colloquial “I’m so OCD” that everyone throws around. It’s not the same.

MAJOR spoiler ahead:

One warning — Sara’s dad disappeared because he committed suicide due to depression. It is not idealized or made pretty in the way that a book like Thirteen Reasons Why does. And I don’t think the book should be avoided. I do think parents may want to use that as a conversation starter with their children. While this is especially true if you, like me, parent a child with mental illness, it is something that we can all discuss more with our children. They need to know the early signs of depression, where to go for help, and what to do if they feel like that. Teenage suicide is on the increase, at the highest number it has been in 20 years. We need to be proactive in giving our children the skills and supports that will help decrease their risk.

The right to NOT talk.

image of an iPad screen with a grid of icons for voice output. the message bar reads: "I don't want to! Grumpy"We all have times where talking is not happening. We ignore questions. We don’t answer the phone. We flat out tell others that we don’t want to talk. Some of us have times where we simply cannot talk; I’ve had many conversations with my husband via text message. At other times, we may want to talk — just not about the subject at hand. Our partner may ask if we want hamburgers or grilled cheese for dinner, but we answer with complaints about something that happened earlier during work.

Yet, this is forgotten or completely thrown out the window when it comes to the students that we serve (and children, generally, in our compliance-driven society).

We ask students what they want (often within limits). If they begin talking about something else, then we take it as proof that they weren’t listening, that they don’t understand, or that they don’t have the ability to answer. They talk about Diego, because it’s their all-time favorite, and we say they “perseverate” or “only know one word”. They don’t use their talker on demand, and it’s written off as “inappropriate” or “not being used” or “they don’t know how to do it” or “too much”.

We need to ask ourselves: what is our goal? Is our goal for students to say what we want when they want? Or is our goal for student’s to have a voice? Because a voice means they get to say what they want when they want.

A voice means being able to talk about your passions, whether they are Diego or the alphabet or worms. A voice means being able to change the topic, interrupt, or ask for something that wasn’t on the menu.

A voice also means being able to NOT talk.

It means that I don’t have to answer your questions  — not when you want me to, and maybe not at all.

It means that I can go hours without talking, or days, or whatever, because it’s my voice and I can use it when and how I want it. I can be silent, and I won’t have people then try to take my voice away.

Autonomy isn’t autonomy if it’s only allowed at the convenience of adults and professionals in students’ lives. A voice isn’t a voice unless we grant the full range of freedom — freedom to use, but freedom to not use as well.

Silence is okay.

Silence doesn’t mean “doesn’t know”.

Silence doesn’t mean “doesn’t need”.

Silence certainly doesn’t mean “take my voice from me”.

Silence is just that — silence. And everyone has the right to it.

Dear teachers, we can do better.

I have had some heart-breaking meetings and phone calls with families. They almost always involve sharing experiences that they find normal, but completely wrench me open.

Example: Families surprised by compliments and celebrations of their child.

Oh, teachers and staff members, think about what you say before you say it. Think about what message you are giving to the children you serve when criticism is followed by criticism by another criticism. Please, please, please start sharing more of the good with families. Even more important: start sharing it with your students. No one should ever be surprised that there is good news. It can be small, it can be big, it can be anything, but it’s there. Tell them about the gifts and talents you see, about their hard work, about the gains they make each week. And I promise: every single child has them. Every single one.

Example: Families surprised by staff who speak directly to their child.

When you meet a child for the first time, say hello to them. When you ask “how are you?” and “what do you like?”, say it too them. Do they use an alternative communication system? You can still speak to them. Do they not have a communication system yet? You can still speak to them. How hard is it to say, “Good morning! I hope that you had a wonderful weekend!” directly to a child? It’s not. How hard is it to say, “You seem so sad. I’m sorry you’re having a hard time” directly to a child? It’s not. Do it.

Example: Families excited by discovering that all kids participate in class photographs, graduation, school plays, field days, music concerts, or electives. 

This is their school too. Special education students are not guests. They are community members. It shouldn’t be a fight to gain access to these things. They should be so automatic that no one would ever think of it being any other way. I get that there is a spectrum of options, that least restrictive environment means a lot of things. I have a son that has advocated for himself to have more or less time in a self-contained environment over the years. But his school has always, always ensured that he was in every PTA concert, that he was in every field day, that his picture was always with his general education classmates in the yearbook, that he was seen as a member of that community. When life was hard, that sense of belonging meant everything to him (and to us). It matters. Oh, how it matters.

Folx — these things should be foundational to our practice. These shouldn’t be things that families move across districts and states to find. These aren’t things that are hard to do, but they mean everything. They mean everything to the students we teach, who deserve respect and access to a robust education. They mean everything to their families, who need to see all that is possible. And they can mean everything for us, as we see our practice, our schools, and our communities transform to become places where all children are seen, welcomed, and celebrated.

We can do better.

Behavior as a Stress Reaction

image of a child completely tucked into an orange body sock, no head or arm or leg visible.
student response to looking at their daily schedule

Summer is coming to an end, which means that all of my preschool babies are getting tired. It’s a long school year when you’re 3 or 4 years old. They are so absolutely ready to swim and splash and have their days in the sun. Add transitions and life events and medical issues, and there’s been some visible signs of stress showing up in our day-to-day routines. Work avoidance. Difficulty sharing. Words that won’t come out right. And a million other little ways that they say: “I am done. D. O. N. E. Done.”

I myself have been under a larger amount of stress than is typical this year. I’ve been sick. I’ve had surgery. I’ve had a larger caseload than typical. Graduate school. Financial stress due to those medical bills and graduate school. One child leaving elementary school, one child in her last year of middle school.

My family sees the impacts.

Conversations of more than 3-4 exchanges — not happening. It’s not just that I cannot participate, but I don’t even want to be around them. It’s too much at once. I have reverted to having the vast majority of my longer conversations with my husband via text message, even when we are in the same room. Sensory input that I could typically ignore, like someone patting their legs or singing under their breath sounds like it’s on volume 200. I’ve eaten the same food for dinner for 4-5 nights in a row. My screen time? Way up!

There’s a couple of take-aways… It would be really easy to see me walking away from a conversation or asking people to stop talking as being mean or rude. At best, someone might think I’m lacking some skill or another. Maybe they would see my screen time use and think that I’m a disengaged parent. Basically: there’s a lot of judgements that people could make, and none of them would be right.

Because — none of the above. It’s a stress response. My tank is full. My tank is over-filling. All the neurons and skills that I had for coping with life’s bumps (such as too much sensory input) in more “acceptable” ways are gone. And so I revert to this. Younger children or people under more stress may revert to other things: hitting, screaming, scratching, falling on the floor, and so on.

The other piece: this happens at home. It doesn’t happen during my school day. It doesn’t happen when I’m in a super important meeting with a parent. It happens at home. That doesn’t mean that I’m “doing it on purpose” or that I could just pull it together. And how many times have we thought or said something like that? But the space we have for coping skills is always in flux, sometimes more, sometimes less. And sometimes we choose to use up more of our skills in one place, knowing our safe place will be there for us when our tank is empty.

I get that this is easy to forget. It’s not exactly something our culture prioritizes. But doesn’t it make all the difference?

I think of a student who may disembark the bus screaming. If we focus on “quiet mouth” (ugh!), what do we miss? What if they’re simply hungry and have no way to tell us? What about the student who falls on the floor every time someone comes near them? Do we just enter their space anyways? What if their sensory system is so on fire that the possibility of any sort of imminent touch is sending signals of pain through their body? We are so much better able to support these students if we look to minimize their stressors and support their over-flowing systems.

It comes down to this — can we just remember that our kids are doing the best that they can? Because I think that would change everything else we do, from the tones that we use to the plans that we make.

My own safe space is home. I see in my family the kind of classroom that I want to have. I see in my husband the kind of teacher that I want to be.

Flexible.

Kind.

Accommodating.

And always, always recognizing that I am doing my best.

Can’t we give our kids that same benefit of the doubt?

Things We Can Retire: “Developmental age”

First and foremost, let’s remember that words matter. It’s not semantics. Words set the foundation for how people view our children. They create a framework of expectations and support services. They need to be carefully chosen, words selected to affirm and uplift individual’s humanity and right to respect. It’s why we don’t use the r-word and why the autistic community chooses identity-first language. Words matter.

One of the phrases that has been popping up in my life a lot recently has been “developmental age” — as in “my child is developmentally X months / years old”. It’s usually an age significantly below their chronological one. Other versions are “caring for my child is like caring for an infant” or “my child is really a toddler”.

Oh, parents and teachers, can we please agree to stop this? It’s not helpful, at best, and limiting at its worst. And inaccurate — so, so inaccurate.

It’s not helpful. After all, what does “developmentally two” even tell us? I see this pop up in lots of groups when asking for advice — “My student is developmentally two, what do I do about (AAC / work activity / behavior)?” Except that hasn’t really told us anything… What does the student like? Dislike? What assistive technology are they already accessing? What are their visual and sensory support needs? What comes easily for them? What is more challenging? Our evaluations, our present levels of performance, our conversations about our kids all need to get a lot more specific (at least in private… I understand keeping things pretty generic in public forums).

It’s inaccurate AND limiting. Here’s the bottom line: we don’t know what these students know. The students who have these phrases thrown around about them are the students who are the most challenging to accurately assess. They may have complex communication needs, significant apraxia, difficulties with sensory regulation, all of the above, or something else entirely. At best, our assessments may tell us the minimum that they know. For example, if a student shows that they can identify 5 letters, we now know they can identify at least 5 letters. We don’t know that they don’t have the knowledge of the other 21 letters. There are dozens of reasons why they may not have been able to demonstrate their knowledge. This is especially important for professionals, who need to be clear about the limitations of these assessments instead of presenting them as the end-all, be-all. When we use these tools to set up boxes like “developmentally two”, then we create preconceptions and limit access. We limit access to real literacy instruction, because “two year olds can’t learn to read yet”! They’re “not ready”! We limit access to general education classes and peers. We have medical professionals that won’t hear a child’s complaints about pain, because it’s written off due to their “developmental age”. We limit their exploration of new activities and adventures, whether it’s a 10th grade science experiment or going to a Nicki Minaj concert. We cannot keep doing this to our students. They deserve access to the entire world, to all the things that every other child and adult access.

It’s not respectful. Oh, friends, think about this deeply… Would you want someone to refer to you as an infant, toddler, child, a pre-teen, long after you left those years? I personally love to watch Hannah Montana and Lizzie McGuire. I saw Moana and Frozen in theaters multiple times. There have been plenty of times that I needed help with a zipper or a fastener or a total meltdown. I need reminders that it’s time to take a shower. One of my favorite ways to calm my body is to swing on the playground. It is an almost irresistible temptation to be next to the swings every day on the playground, actually. But, because I can speak, because I can demonstrate academic knowledge in a way the world has deemed acceptable, no one would think to call me a child. Our kids deserve the same respect. They can like what they like. They can need what they need. That doesn’t change the need for respect; our language needs to reflect that respect. Our kids’ age is simply their age. A teen is a teen is a teen.

We’ve lived this in our family. We’ve lived our 3rd grade daughter being taught Pete The Cat for the fifth or sixth year in a row, because her school team limited her. Or when she changed schools and they decided that clipping clothespins onto a box was even better, because she was a “pre-learner” (another version of developmental age, except somehow even worse). We’ve lived people thinking she shouldn’t say she hates school or us, because OMG, she’s such a precious sweet angel, a toddler in a taller body. We’ve also lived her pain and frustration  (and boredom!) over it. Indeed –it’s amazing how much more engaged and chatty — how much happier — she became with professionals that saw her, just her, no limits, no ages, no prerequisites required. Her current teacher talks about ecosystems and the solar system and the American revolution. Her occupational therapist celebrates her interests while challenging her and targeting written expression and continually raising the bar. Her vision therapist tried hard to convince her school team to work on literacy and number skills. These are the people who get to see all of her, who fall in love with her, who get her. I want more of those people.

So, yes, let’s retire this phrase. Let’s do better by the children and adults that we so deeply love and care for. Teachers and other professionals need to especially listen up, because we set the tone for speaking about disability at every eligibility or well-child check-up. We are why parents use these words. They hear them over and over over, from doctors and psychologists and school evaluation teams. They are cemented. We are the ones who are creating these artificial limits, making parents think that literacy and number sense and autonomous communication are pipe dreams. Except they are only pipe dreams when we don’t provide the services (due to the false limits we’ve set). See the feedback loop we’ve created?

We can break the loop. We can lead the change. It starts with our language, and continues with our practice. Let’s not limit kids with our words, and let’s not limit them with their access. We can do better. Let’s do it.

 

We don’t need to get physical.

white background with black text reading "no means no"... the o is a red "not" sign.
Bear with me, because what I am about to say cause you to feel defensive or want to click away. Please keep reading.

We overuse physical prompts and support in special education, and we are setting up our students to be hurt in their lives.

Whatttttt? Hurt?

Yes. Hurt.

One in three children who receive special education services are victims of neglect, physical abuse, or sexual abuse — compared to one in 10 non-disabled peers. They are 3.44 times more likely to be the victim of abuse compared to children without disabilities (Sullivan & Knutson, 2000). 3.44 times! And it is likely that these are underestimates, as children with disabilities may have difficulty reporting (or having their reports believed).

How does physical prompting play into this?

We are teaching our students that it is okay for someone to manipulate their body. We often teach something even more significant — that they cannot say no. When they fall on the floor and we force them up, we are teaching them that they cannot say no. When we force their hands under the running water in the sink, we are teaching them that they cannot say no. When they say “cookie” but we make them say “eat”, we are teaching them that they cannot say no and that their voice doesn’t matter.

I know it’s not the intention. But it is the impact.

I get it. I’ve made this mistake in the past. I’ve had moments that make me cringe as I’ve grown and matured in my understanding of teaching and supporting the kids I so adore. We think that we’re helping. We’re taught this in graduate school. We’re taught this by our children’s therapists. We didn’t know.

Now we do — and now we can do better.

It is possible, I promise. I teach ten preschoolers with disabilities every day with minimal physical prompting. I parent two children with disabilities every day with minimal physical prompting. It’s a journey, but it’s a journey that is absolutely worth it as you teach some of the most important life lessons: autonomy and consent.

How do we start?

Start by noticing. Notice the little ways that you use touch throughout the day. Notice when your child or student might be pulling away. Notice when you accidentally speak over instead of working with. It’s not about shame. It’s about mindfulness. It’s about noticing the ways that we, too, have been indoctrinated by a culture that expects compliance from children (and especially from children with disabilities). Notice when your hands begin to move before your brain even notices.

And then start to do things differently. Below are some steps to moving away from physical prompts and towards a different way of interacting. Your children and students will appreciate the respect for their individuality. They will thrive on having their voice heard and recognized. And you will uncover so much more learning, so much more personality, so much more of THEM when you take the chance to step back. I think you’ll like the change.

Ask yourself: what is this child communicating to me?

  • This is too easy / hard / boring.
  • I am not ready / I need more time / I need a break from this.
  • I don’t understand the expectation.
  • I don’t feel well.

When we find the same scenario popping up multiple times a day or week, we need to do some problem solving with the child or student. We can often minimize the need for prompting when we determine what the child is communicating through their actions, whether it’s disengaging from an activity or refusing a transition. There’s always a reason. When we address the reason, we often find that our students no longer need to complain or protest with their bodies.

Ask yourself: is this necessary?

It’s amazing how many times we think we need to do more — but we don’t. I think here about the student who has exercised their right to protest by laying on the floor instead of transitioning. The instinct by most is to pick this student up and force them to walk to the next location. But why? Are they being hurt? Are they hurting someone else? Is there absolutely no way to create safety by relocating peers / furniture / adults? That is the only time where I find it absolutely necessary to intervene in some sort of physical way (such as blocking a student from hitting themselves in the head). There’s a dozen other ways to respond — first and foremost, wait.

Yep, wait. We can wait for our students to re-regulate, offering supports or strategies for regulation when appropriate. We can make sure we stay regulated! And then address the situation together. Maybe we use one of the strategies below. Maybe we all just needed to offer more time to regulate. Maybe we can talk through it together when we are both calm and regulated, such as reminding a student that we take the bus to see mama.

Offer choices.

We all want choices in our lives. We all want to feel in control. There’s a difference between a lunch someone orders for you, and a lunch that you choose for yourself. Going to a party because you want to, or because someone else dragged you. Think of all the choices that you make on a daily basis. Think about the number of real, meaningful choices that your students or child gets to make on a daily basis. It’s often pretty insignificant. We need to offer more choices all day long. But we especially need to offer more choices before activities that have frequently served as triggers in the past.

An example: I once had a student who disliked the transition to the bus. It’s a hard transition. There’s a lot happening, and the bus ride can feel very long when all you want is your mama. We’ve struggled with making it out the door in the past. We didn’t really know what to do. We didn’t want to force him through the door, even if it was just through an adult holding each hand. It’s a bit much. But we also know that he needed to be on the bus and that, for once, there was a time limit. We can’t wait for the bus for 45 minutes. You’d be amazed at the simple solution that made all the difference: asking this student if he would like to wear his backpack, carry his backpack, or have help with his backpack. This small choice gave him a sense of control. It also meant that he could tell us what his sensory system could handle each day. Some days the feel of the heavy backpack helped him feel grounded. Other days, it was just too much. That tiny change has meant no tears and eagerly hurrying to get to the bus (and eventually mama).

Moral of the story: notice where you can offer choices, instead of telling what to do, how to do, when to do. Don’t be afraid about sharing control with your students. It’s often one of those antithetical ideas: the more you give away, the more you have.

Use other prompts.

There is a whole TON of other prompts available for teaching. We can use facial expressions, such as the “expectant waiting” face. We can talk to students. We can ask questions. We can give directions. We can show pictures. We can use video. We can point to different elements. We can use pointers and lasers and visual cover-ups. We can do it ourselves while they watch. We can start the process and then hand it over to them. Basically: don’t forget about all the other prompts that are available to you. Physical prompting is fast and it is easy, but that doesn’t mean it’s best. It’s rarely best.

Use assistive technology.

We are so lucky to live and teach in the 21st century. There are so many ways to accommodate our students. The one that most often comes to mind is the use of visual supports. We can use visuals to show each step of the process to complete an activity. We can use visuals to tell students what is happening, when it is happening, and where it is happening. We can use video to capture students doing the task, or showing their peers doing the task.

We can also use accommodations to create alternatives to the task, or modifying the task in some way. If a student regularly needs physical prompting to pull up their pants, maybe a different style of pants is going to allow them to be independent. If a student has difficulty locating a button on their talker, maybe a keyguard or even just a little sticker on the screen protector will guide them. If a student cannot touch one item at a time to count with cars and blocks, maybe they practice their counting with touch screens or focus on subitizing. This is an opportunity for endless creativity — and teamwork. Call on your instructional assistants, assistive tech teams, and related service providers! It’s amazing what we can come up with when we work together.

Emphasize consent. 

Always, always remember that a student has a right to say no.

There are still times when we use physical prompting in our class, primarily when teaching a new motor skill. Please remember that many — most — students do not need that physical support even with these skills. But some students struggle significantly with apraxia or other motor difficulties that benefit from some support. I think about my daughter, who benefits from physical support to find words on her talker the first few times she tries them. She cannot see the words very clearly, nor can she see our modeling. She needs us to show her.

But we do so cautiously. We ask — “Can I help you?” Yes, I literally ask my daughter this. I ask my students this. I give them the chance to give consent, or to say no. Even if they cannot verbalize consent, I hold my hand out without grabbing them. Do they put their hand on mine? Do they pull away? And they always should be allowed to pull away.

If they agree to have support, then I offer that support by hand-under-hand. It’s less intrusive, because they can more easily pull away at any moment. Because that’s the thing about consent — it’s an ongoing process. It’s not one and done. By placing my hand under theirs, it is easy for them to pull up and away. It is easy for them to decide to hit a different button on their talker. And they always should be allowed to.

(I know I sound like a skipping CD, stuck on repeat. But it’s a lesson that simply isn’t emphasized enough for our kids, and one that needs to be drilled into our heads. They are allowed to say no. They are allowed to refuse. They are allowed to pull away, walk away, however they convey the idea of NO. They are allowed to say no.)

I think of it as if I was taking lessons to swing a golf club. The trainer may assist me by providing physical support to feel what a swing should be. But notice: the trainer is going to ask me if they can support me. And if I decide, mid-swing, this isn’t working for me and walk away — they are going to let me. The trainer is not going to chase me around the golf course, trying to grab my hands and arms. It sounds ridiculous, yet so often we do exactly that.

Really, though, that’s what it comes down to… How would we want to be taught? What would we want for our own children, or for ourselves? We are caretakers of our children and our student’s trust. We must continuously live up to that. This is one of the most important ways.

 

 

Sullivan, P. & Knutson, J. (2000). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse & Neglect, 24 (10), 1257-1273.