0

Living with…

It feels completely bizarre for me to fill in the above blank with “chronic illness” or “mental illness” when I think about myself. We have these images in our heads of what it means to be chronically ill, to struggle with mental illness, to have a disability. For a long time, I told myself, “it’s not that bad. I can still (work/parent/whatever).”

Until I realized that those were all myths and stereotypes and stigma. And by not taking these labels onto myself, I was perpetuating these myths. It’s a realization that I have had to make again and again. I’m not stupid. It’s not that I don’t get it. I have intellectually understood for ages. But sometimes it takes a doctor’s appointment on a Saturday night to remind you that this is real life. This is what you’re living with. And those layers of cultural conditioning can be strong and deep. We have to peel them back, piece by piece, until we find who we are underneath it all.

This is me.

I struggle with anxiety. I have OCD. I wake up in the middle of the night and wonder about whether my house is falling down. I re-play conversations, over and over and over. I can’t get to sleep. I fix and re-fix and fix the rearview mirror again and again, because bad things will happen. I get rid of everything in my house that I possibly can because I will internally combust if not. I will not pick up the phone, even if I see the caller ID. I just can’t. Phone calls take like 8 spoons for me.

I lived through trauma, domestic violence and abuse. I intimately understand the way that abusive relationships can be insidious and difficult to leave. I know that a mom can love her kids to death, can be amazing at mom-jobs, and still have a hard time walking out of that situation. I understand loving your father to pieces, yet also being afraid. I know what it means for the bottom to drop out.

I can be weird about sensory things. Showers are painful. I can’t wear shirts that touch my neck. I hate shoes. I never wear socks. I sit cross-legged in the car so that there is pressure on all of my legs. I have become so overstimulated in a store that I have left my full cart in the middle of the aisle and walked right out.

I have autoimmune & allergy issues, with the biggest being my thyroid. And some sleep issues that we haven’t quite figured out. So sometimes I hit a wall. I struggle to stay awake for even six hours a day. I spend my school breaks sleeping as much as anything else, and I feel incompetent, weak, and lazy. We watch television more, we play iPads more, we do all the thing that the mommy wars will ridicule us for doing.

But I’m also a really great parent. I am responsive and respectful. I listen to my kids’ needs, whether spoken or not. I maintain high structure but I support and accommodate my kids so that they can be successful within that structure. I choose connection over compliance. We make time to watch movies, to play video games, to go to the park, to travel, to swim, to do what they need and love. I am giving them a gorgeous childhood, filled with laughter.

I’m a fantastic teacher. I bring work home. I show up early and stay late. I am completely present with my students and teaching in a way that brings out everything that is best in me. I collect data and use it to drive my instruction, while also staying playful and true to developmentally appropriate practice. I connect with families. Learning how to be the best teacher I can possibly be for them is the top of my list.

I do yoga when I can. I go to the pool when my energy allows. I read books, mountains and mountains of books. I read the news. I stay active on various Facebook communities, trying to give back what they have given to me. I blog. And I try very hard to be a good partner and a good friend, always learning.

All of this can be true. I can be a great parent, a great teacher, and have an anxiety disorder. I can need to rest more than the average person and still be raising amazing kids who grow each day. I can be someone that goes above and beyond, that always has another project to do, and be someone who is a little bit of a mess sometimes.

It’s true of all of us. We are all both/and. We are strong and limited. We are brilliant and afraid. The doses may vary in each person but none of us are all-anything-all-the-time. When we give ourselves permission to be ourselves, messiness and all, to stop hiding — we lead the way for our friends, our family, our children. They see that “both/and” applies to them too — that mental illness or disability are part of who we are, maybe big parts, maybe parts that drive the way we see everything else, but they are parts of the whole beautiful, messy, amazing person that defies any and all stereotypes.

Stand as yourself, and stand tall. Be a parent with mental illness. Be a doctor with anxiety. Be a teacher with chronic fatigue. Be a friend who can’t always get out of the house. Be a customer who taps their toes and flaps their hands and rocks in place. Be a salesperson who cannot shake hands. Be a wife who struggles with attention differences. Be a grandfather who has panic attacks. Be you. All of you.

0

How we talk about growth

I read lots of comments online about how children are doing making progress or doing better because they no longer need some form of assistive technology that they used to use — a wheelchair, a gait trainer, a speech-generating device, a picture schedule, and so on. And I wonder — isn’t there a different way to talk about this? Do we understand what our language is saying?

At first glance, it doesn’t seem harmful. It seems pretty factual: my child used to do this and now they do this. Listen again. It’s in the implications that we bring to our conversation. We celebrate every step closer to “normal”, that what “typical people do” becomes our yardstick for measurement. What are we saying about the children who still use AAC? Who still need picture schedules, lists, gait trainers, and AFOs? Is there some sliding scale where the less technology needed is better?

I’ve been thinking a lot about the many ways that we reinforce the culture of ABILITY! We prize neurotypical friends over friends with disabilities. We value pretending to play house over parking our cars in (beautiful) patterns and lines. We value breadth of knowledge over depth, and block our kids from special interests and passions. We demand that they conform to the way we teach, the way we live, the way we interact. We mourn their inability to engage on the playground in the ways that we did when we were growing up. We use the word progress, which almost always infers that what we left behind is less-than. Technology progress. Human rights progress. Always moving forward, always looking down on what we left. Do we want to look down on our children? Who they were, who they are, and their unique journey?

I don’t want to measure my daughter against the mainstream. Can’t we value friendship and joy and presence, all on their own, regardless of external measurements? Can’t we ask this child — or use their behaviors to understand — about their happiness, their dreams, their vision? Could they be alone on the playground and happy? Don’t some of us recharge best when we have time by ourselves? Could they learn creativity and problem-solving and engagement in those striking grids of trains and animals? Does it have to be the way we’ve always done things? And aren’t there many ways to achieve those outcomes, some involving technology and some not?

We are playing with different ways of talking. We haven’t perfected it. I am constantly becoming more aware of the ways my language insidiously supports everything I stand against. So I wonder — who is that needs to make progress? Is it our kids? Do they need to leave themselves behind? Or is it us?

1

Developmentally what?!

I’m sort of surrounded by standardized and norm-referenced testing, between being a teacher and being Diva & LM’s mom. Those are the tests that come with scores and age references. Your child has the social-emotional skills of a 6 month old. Your child’s standard score is 45 in the motor skills domain. These tests are bad enough, but they only show up every couple of years — usually when someone, somewhere, is trying to decide whether your child can qualify for services. For me, we are the problem, even more than the tests. We let the scores linger. We bring them up when we decide whether a child can access literacy instruction or the general education environment. We bring them up to explain someone’s behavior — “Oh, he’s being two.” We use the scores to dictate our expectations and limitations. We let the scores (real ones or the imaginary ones we hold in our heads) decide what toys and shows and music our children can access. We talk about how “he’s like an infant” or “she’s mastering the 3 year old milestones” or so on…

And there are so, so, sooooo many problems with this… Most obviously, test scores tend to be notoriously unreliable for our kids. The environment is different. The context is missing. The social environment is all wrong. This is true of both standardized tests and “test questions” — all those times we try to test whether our children REALLY KNOW that thing, or if it was just “an accident”. Example: insisting a child wave to us on demand, sitting at a table, so that we can see if they really know how to wave (versus observing them waving good-bye to their friends as they get on the bus). I always ask myself — if Stephen Hawking was without his assistive technology, what would happen? And how can we say for sure that this is not our kids, who are going through the world without access to robust communication?

I used to just say that it was disrespectful. And it is. Do we label ourselves this way? Our typically developing children? Sometimes, I’m three years old, such as when I find myself wrapped in a power struggle with my son, all logic out the window. At other times, I’m totally thirteen. I stomp down the hall and slam my feet. What does this mean for me? When I’m acting three, will I get time out? Will I lose a toy? Will I be told that I cannot yet work on writing or reading, because I’m busy being three? When I’m acting thirteen, will I have my television time or cell phone taken from me? Be kept from getting my driver’s license? Going to college or work? What about the fact that I still idolize Disney films and saw Frozen 3-4 times in theaters? Does that mean that I’m developmentally six or seven?

But, more than that — it just doesn’t make sense. It doesn’t make sense to say that Diva is three. It doesn’t capture anything about her. It misses out on her love for pop music, for pink clothes, for fashionable sneakers and socks. It doesn’t capture the reasons that she loves bright-colored and young shows, such as Diego — which accommodate her vision and auditory processing far more than any of the “age appropriate shows”. It doesn’t tell us that she thinks it’s hilarious to listen to “One Bourbon, One Scotch, and One Beer” or that she has perfect pitch. I don’t know how she communicates or for what purposes. I don’t know how she interacts with songs, with books, with writing, with letters. I don’t know who her friends are or how her family supports her. Saying that Diva is developmentally three has done virtually nothing except establish a (fairly demeaning) box for her to fit in.

Besides, there’s another component that these tests and labels don’t measure — us. What are we doing to support Diva’s communicative competence? Are we responding to her communicative attempts? How long did it take before we gave her access to a robust communication system? Are we noticing the ways she shows us what she knows? What opportunities have we created for her to be an active, engaged learner in her world? Is it fair to assess her comprehension of books when our instruction in reading has been sorely lacking? How can we assess her against the general education standards when she has never had access to the general education curriculum?

There are other ways to talk about our kids. Diva is an emergent learner. She is learning both how to learn and why learning can be magical. She is communicating, reading, and writing at the emergent level. For her, this means that she is beginning to communicate for different reasons — requesting things, requesting attention, and sharing opinions. She needs us to model the ways that she can use her words instead of her screams. She needs us to respect her words when she uses them. She is very resistant to anything that seems like “work”. For her, “work” has been repetitive and boring. It has been the work of three year olds, because people believe that she is three. “Work” has been meaningless, or even painful. She is well-known in her school community. People say hello to her everywhere that she goes, and she seems to enjoy reading most when peers are reading with her.

See — there’s no test for this information. There’s no phrase that can quickly capture her. That’s how it should be. She’s Diva, just Diva.

0

Oh, the things that they will say.

My whole month of AAC posts got sidetracked by what ended up being a month’s worth of meetings, phone calls, emails, and letters regarding Diva’s education, a month that has been so overwhelming and frustrating, a month for which I have no words. I’ve wanted to write and process the whole experience, but I still cannot quite find the words — not in any sort of coherent manner. Soon, soon, soon.

In the meantime, I’ll leave you with ten of my “favorite” (sarcasm) things that I’ve heard around Diva or Little Man over the past two years. All are approximations, because I can never bring myself to actually re-listen to the recordings of meetings.

  1. Response to a request for modified homework: “Well, he needs to learn how to do what everyone else is doing.” Or, any other rendition of “Well, he needs to…”
  2. “So, if everyone else is doing a research project together in a group, what will she do?”
  3. “We know these children…” and “Children like these…” and “a child like that”…
  4. Me: “She has never tipped a chair over before. Ever.” Them: “I hope for your sake it stays that way.”
  5. “She can’t go to music class. They are studying scales and composers.”
  6. “Well, I can’t make her see any better.”
  7. Me: “The goal would be to learn what works for her from this thirty minutes and then expand.” Them: “Wait, what exactly is your long-term goal for her? To be included all day?!?”
  8. “We let her talk all day. We don’t know what she is saying, but we let her talk.”
  9. “Yeah, exactly, she will only work on things that are meaningful to her.”
  10. “I can’t explain my goals because my allergies are acting up.”

And for bonus points, number 11 – answering a phone call mid-meeting.

And one that didn’t quite make the list: “How can he be exempt from a class-wide behavior system?” It didn’t make the cut because another team member stepped up and hit it out of the ballpark with awesome — “If it’s in the IEP, then you make it happen.” And that’s why that is one of my favorite schools.

0

I have something to say!

Here’s the foundation upon which everything else is built — our children have something to say.

And you know what?

They have more to say than “want cookie.”

That’s what AAC (augmentative & alternative communication) is built around. Everyone has something to say, and everyone has the right to say it.

It seems so simple, but when you are a person with a disability or a parent to someone with a disability, you will quickly learn how earth-shattering this presumption is almost everywhere you go — even among the therapists and teachers you expect most to support this. You watch your child get wrapped up in prerequisites, spending days or years on color and picture matching, without any way to tell you that something’s wrong or that something’s awesome. If you’re lucky, your child works on requesting. They bring home their picture book and you’re dismayed to discover that you have nothing to talk about. The pictures of the juice and swing can only go so far, especially when your child is only learning to ask for them.

Communication is so much more. We communicate so much to each other every day — we say hello, we comment on things, we share ideas and likes and dislikes. We use our eyes and hands and bodies to tell the world about our energy and openness to talking. We work together when that word is “stuck on the tip of our tongue” or we get tongue-tied. It’s a two-way street. It’s creative. It’s full of meaning.

Using AAC, for me, is believing that our kids deserve the supports to communicate with the world — to express themselves. It is about how if a child is NOT communicating, then we have not done our job to look for their communication, to respond to it, to notice it, to give it the proper importance that it deserves. We haven’t done our job to try out supports and systems. And we have to. Every child and adult has the right to be heard. Every one.

And that’s what AAC awareness month is about for me. It’s about technologies and systems and learning what’s available, but it’s also about teaching the world that our kids and adults are ALREADY speaking to us if we open our ears to hear them and open our minds to give them a chance.

0

Presume competence.

I have a lot of things that I want to say about communication & communication systems, because we have been through quite the communication journey this summer. We asked a lot of questions, read a lot of books, watched a ton of videos, and I think we’re becoming quite competent in speaking and thinking about AAC (augmentative and alternative communication). And I still have lots of things to say, but I realized there’s something else that has to come first.

We have got to presume competence.

What does this mean? It means believing that our kids can. They can learn, change, grow, mature, and adapt. It means believing that our kids do. They do have opinions and thoughts and experiences that they are communicating or wishing to communicate. What presuming competence is not — it’s not focusing on cures or fixes or healing. It’s not thinking there is a “typical” child “trapped” inside their disability. It is believing that our children, as they are, as their whole being, disability included, are capable. At its very basic layer, presume competence is about doing no harm. It means that we would always, always rather assume that our children can and are learning from their experiences (even if we are wrong) — because the alternative — believing that our kids are NOT learning and limiting them when they ARE learning — is so much worse.

Yet it’s more than that, too. I think it has to be, once you start diving into the concept — and once you start interacting with people with disabilities from that foundational attitude. It’s respect. It’s acceptance in an unconditional format. It’s inclusion. It’s believing in my daughter’s right to take up space, to get an education, to be an integrated member of her community. It’s asking her what she wants from her life. It’s letting her make real decisions. It’s the big things and the little things and all the stuff in between that makes up our day-to-day life.

It’s not taking away her music because someone thinks that will lead to better control, when she’s nine years old and has the right to listen to music after school — like every other tween does. It’s not using devices that put words in her mouth. It’s not spending years on “prerequisite skills” like matching and sorting and picture identification while she has real things she wants to talk about. It’s talking to her about shopping and clothes and musicians and shows. It’s talking with her, not about her. It is saying that that she has worth — even if she never communicates with her device, even if she never learns to read, even if she never does this or that or some other — she has worth.

Yet, at the same time, it’s also saying that if she does not do those things — it’s not on her. It’s on us. When our kids don’t learn, it’s not because they are disabled or faulty. It’s because we’re not teaching them in a way that meets their needs. When our kids aren’t participating, it’s not because they can’t. It’s because we haven’t set up environments that actively bring them into the the social community.

It’s everything. It’s everything.

Without it, how can someone education my daughter? Without it, how can someone support her to communicate? Without it, how can they be her friend or support system? They can’t. They won’t. They will infantilize her. They will limit her. They will disrespect her, devalue her, and hurt her. They will leave her behind, and they will think that’s okay.

I’m not okay with that.

I’m tired of harping on this again and again, yet I will never stop, because it must be done. We — as the parents, teachers, friends of people with disabilities — have got to stop using actions and language that imply “less than” and limitations. We have to start focusing on accommodations and possibility. We have got to stop focusing on our unmet expectations, our “failed dreams” (ugh), and our lack of support. We have got to start focusing on what this child/person wants for their life — and the lack of support that we give them.

We’ve got to start making changes. We’ve got to say that it’s not okay for my 9 year old to be studying colors and shapes, while her peers are studying poetry and the water cycle and simple machines. We have to choose communication and collaborative problem-solving over compliance. We have to see all the ways we shut out kids down and shut them out. We have to see the leaders and the gifts and the talents that each of our children bring to the world, already, as they are. We have to listen to the voices of adults who experience dehabilitating ableism over and over and over again. We have to see ourselves as the problem, and we have to ask THEM – how can we help? What can we do? Because it’s not about us.

It’s about that child. That student. That friend. It’s making space for them, because we want to. It’s making space for them, because we believe they have value. It’s about believing in them, no matter what. It’s the foundation. Without it, nothing else we do matters.

0

On being real.

I follow a variety of blogs on Facebook, and my favorite – hands down – is Diary of a Mom. I don’t know a lot of family blogs that have that same combination of love, respect, and word-magic. Hers and Emma’s Hope Book are pretty much all I’ve got on my list right now. They keep me tuned into my center, my foundation for writing, which is always about respect.

Today, someone asked why she doesn’t post pictures or more detailed descriptions of Brooke’s hard times. They said that the world needs to know. There were lots of beautiful responses, including her own. They were all variations of how we can raise compassion and advocacy by showing humanity, but without disrespecting our kids so. Who among us would choose to have a picture of our worst day shining from a Facebook page? Who among us would choose to write about the times we screamed, the times we broke something, the times we just totally, completely blew it? We could. We don’t. We don’t share those moments on our Facebook statuses or even in most of our conversations with friends. We don’t even share our own, so why should we share these moments on behalf of our kids — often without their consent?

Obviously, I agree. I use pseudonyms and don’t post pictures of faces on the rare occasion that I even post one. While many close friends & family know this blog is “me”, I don’t want the wider world to know who or what we are talking about. If I wrote a book, I wouldn’t use my name there, either, for the same reason.

Yet, on the other hand, I struggle with how real my writings should be. I don’t know that it’s real to talk about all the celebratory moments only. I mean, I focus most of my attention and heart on all those moments of love & connection, so they do make up a huge amount of my Facebook posts. They are the moments that I want to capture, a love letter to my kids for them to later read and see the ways they shine. But they aren’t everything. So then what?

I don’t want to post videos of my darling Little Man mid-hallucination or while destroying property. First of all, who the frick has time to do that? The few times that I have had to for medical reasons, it only added to stress and mayhem of the moment. I have taken photos of the damage afterwards to show my mom, my best friend, or my support group, because I need to say, “Am I alone? Has this happened to you? What do you think? What do I do?” They don’t make it to my Facebook wall, my picture album, or the blog. It feels skeevy on every level, like taking a picture of my daughter on the toilet and posting it for wide consumption.

My writing, though — that’s where I struggle. It’s a struggle that I’ve had since I started this blog. How do I share the hard stuff without disrespecting LM or violating his privacy? How much do I share? The point of this blog, after all, is to humanize all of mental illness & disability, not just be another part of the inspiration-porn that often surrounds our kids. Reading real stories, stories from Far From the Tree, from January First, from other memoirs & families — they gave me hope in a way that no textbook or doctor had. They made me feel that I was not alone. They showed me that LM is not alone. They showed me that we can do this together, including keeping him at home. He will make friends, like him and not like him, just like we all do. He will have a life that is all his own, with his own unique celebrations and stumbling blocks. We will keep putting one foot in front of the other. I write because I didn’t want other families or people to feel so alone through the journey. I didn’t want to hide my child’s difficulties or have shame surround his hard times. It is what it is.

Still, I respect that this is his story (and her story!), not only mine or ours. I am a partner in this journey. I am an advocate. I am not him, though. I am not him. So I don’t know that I have an answer to this question. I think it’s a struggle that I face each and every time I write. I know I will make mistakes. I am sure there will be times when I haven’t shared enough, and there will be times when I share too much. I will change my thoughts on this, depending on what we are going through and where LM is in his life. I know I will anger people, both families and self-advocates. I will probably anger different people within the same blog post. More than anything, I seek to write in a way that is filled with love. If he can feel that love, then that’s what matters more than anything.