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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.

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It’s me.

I write a lot — well, not a lot recently, but usually — about how amazing my kids are. It’s true. They’re awesome, and they are awesome because of who they are entirely. Every piece. Neurodiversity and mental illness and personality flaws and brilliant gifts all wrapped into two charming and hilarious packages. It’s important work. It’s a battle against the cultural norms of our day, where those with disabilities are unseen, at best, and abused, more often.

But I realized I don’t really write much about myself, my stories. The stories that I actually own the rights to, versus the way I borrow my children’s respectfully and hope that I do their sweet selves justice. I don’t claim my own quirks and mental illness in the way that I could — the way that I should, if I truly want to model acceptance and celebration for my children.

It’s hard. I was well into my twenties before I accepted that I lived through extensive childhood trauma, that I have obsessive compulsive disorder, that I can be crippled with anxiety… It was my normal. And admitting that it wasn’t anyone else’s normal? What would that mean for me? What would happen with my friends? My job?

We still live in a world filled with stigma. We don’t think people with mental illness  or disabilities can be good doctors and teachers and lawyers. (They can.) One in four people that you know experience a diagnosable mental illness in any given year. One in four. They are your neighbors. Your friends. Maybe your family. They may not even know yet what that means or who they are. They might be me when I was 16, laying on the floor, alone, unable to ask for help. They might be me when I was 20, not knowing how to name my challenges but thinking they somehow meant I deserved less of a life, less happiness, less joy, less love. They might be me, now, 30, claiming their brain and owning the accommodations they need to have the life they wish. They are anywhere and everywhere.

That is why I need to share more of my stories. Speaking it takes away the stigma, and reading other people’s has made me feel less alone. Because so many of us are weird and quirky and beautiful — and also something of a mess. Sometimes a non-functioning mess, sometimes semi-functioning, sometimes functioning so fucking well that you just can’t even believe it. All the time, though, all those times, the floor times, the locked in the bathroom times, the rock star winning! times… We’re okay and unique and worthy and deserving of it all — Respect. Love. Belonging.

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Friday Five: 5 Reasons to Find a New Psychiatrist

Note: These are all real things that have happened to us, and not all with the same doctor.

  1. The psychiatrist invites you into the office for an appointment and does not even close the door, because the appointment will be that short and there will be that little discussion. Perhaps excusable in a private office, last patient of the day. Not so much when the waiting room is filled with families who can now be witness to your entire appointment.
  2. The psychiatrist tells you that if you cannot get your child to calm down, then you will have to leave the office. Wait, what?! Aren’t you supposed to be the medical professional helping make that happen?
  3. The psychiatrist says that perhaps you need to be firmer in your “no” and take a stronger stance, despite knowing that your child has a history of trauma and is diagnosed with mental illness.
  4. When you approach your psychiatrist for assistance, because you feel that your child is on the verge of hospitalization, the psychiatrist takes a “wait and see” approach. For two months in a row.
  5. You leave the office crying. And not because someone gave you tough news, which happens, but because you feel that unheard. Don’t let that happen. You know yourself best. You know your child best.

I’m hoping this is the worst of what has happened, but I’m pretty sure I might just be blocking other things out of my memory. What are some of the reasons that you’ve sought out a new therapist or psychiatrist?

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Friday Five: Speaking up  

This Friday, I am sharing five tips for sharing that yourself, your child, or your other loved one is in the hospital for mental illness. For a long time, I wasn’t sure if I should share. There is so much stigma and I didn’t want that attached to LM. But I realized that the only way to break down that stigma is to normalize hospitalization for psychiatric stabilization in the ways that we understand and accept hospitalization for physical health stabilization. So we share now, and here’s how we walk the balance of breaking down barriers and protecting privacy. 

1. Stick to the basics. We share that LM is in the hospital, where he is, and news regarding discharge. We don’t share details about what was happening or how visits are going, except perhaps with a limited few family members or close friends. This is even true of sharing the story with his school, since they are not actively engaged in his daily care right now. That part of the story is LM’s, and I need to respect that. 

2. Be aware of your audience. We post those basics on Facebook — but I have 100 friends and the vast majority of them are family members. We post on the blog, but with all the usual precautions with names and pictures. 

3. Find good moments to share. People have lots of horrible images and stereotypes of people with mental illness and the hospitals that serve them. I’m not saying lie or cover up things or rose-colored glasses the stay. These things are hard. But if you have a complaint, it’s better directed towards a patient advocate or nursing supervisor who can actually do something anyways. We share stories of nurses who went the extra mile, or therapists who rocked our socks off, or policies that were especially family-friendly. I want to bring humanity back to something that is very dehumanized by our media, our cultural stories, our language, and more. I also hope that the collective stories of what works can lead to more or that good stuff. 

4. Reach out to friends. It’s a lot easier to maintain those private boundaries when you have those people that you can emotionally vomit up all your fears, worries, anxieties, all the spinning and twirling of your brain over each moment. Find someone who can listen without judgment, whose opinion of you or your loved one won’t change. Turn to that person when things get hard.

5. Do not ever speak about other patients. I mean never. I mean not to your trusted friend, not to your therapist, not to anyone, much less a big audience. The only time you may be excused for talking about another patient is if it directly relates to your child, and that should be confined to confidential patient-therapist type conversations. Hospitalization finds you at your most vulnerable, whether you are the patient or the visiting family. It comes down to the basic golden rule, and I know I don’t want anyone to be running around talking about us!
If anyone catches me violating my own guidelines, I hope they will call me on it. I think we need to talk about hospitalization. I think we need to make it okay. We need to show that awesome people need these supports, that it could be kids and adults and family that you know and adore. Sadly, I think mental health support services will only get better if people start seeing how it can touch the lives of people they know. So we share — with limits. I’d love to hear yours. 

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How We Do It: Bringing Comfort during Hospitalization 

I know — I owe you a follow-up to language modeling, and it’s coming. But we are in the midst of a hospitalization experience and this seemed more relevant. As helpful as hospitalization can be, as necessary for physical or mental health, it still sucks so much. This is especially true for children who may be confused and scared, who are almost certainly anxious about when they will be returning home. And few hospitals are truly designed for the needs of children. Here are some of the ways we bring comfort to both the child in the hospital and the child outside. 

  1. Favorite toys. Each night we visit, we bring LM one small matchbox car. When Diva was in the hospital, we had the iPad with YGG. Stuffed animals are another great one. Small things that remind them of home. Pro tip for extended stays — don’t bring the most favorite one ever, because the risk of loss is too great.
  2. Books. We have brought a couple of our favorite books about love and family to LM, including I Love You, Stinky Face. We try to read them together before we leave, but it doesn’t always happen. We do always make sure to write a note on the inside cover and have all three of us sign our names. We leave it for him to look at and think about whenever he wants. 
  3. Pictures. The therapist we are meeting with this week printed pictures of our cats for LM, and this is the single most comforting item he has. They are just black and white pictures from a printer, so it’s okay for them to be lost or ripped or well-loved. When we can, we look at pictures with him of things we have done together. We’ve also taken pictures of him and brought those pictures home to Diva, when that’s allowed in policy. We sent LM a lot of pictures of a Diva after surgery and when recovering last year — it was an essential part of him knowing she truly was okay.
  4. Routine. We try our very hardest to visit and call at the same time every day, so LM can expect us and know we will be there. We leave with the same routine every day, where LM walks us to the elevator and exchanges hugs. We stick to bath and bedtime routines with the child not in the hospital, even if they are staying with a family member. Their world is upside down, sideways, and pretty much chaotic in so many ways during a hospital stay. We do what we can to add elements of the regular. 
  5. Flexibility. What? Didn’t I just say routine? Yes. It is a hard balance, but sometimes you just have to break the routine or the rules. Easy example — going to a bonus visit that you get offered last minute, if you at all can. Or letting Diva listen to more music and more television, because they are some of the only familiar things while we are far from home. Last year, we temporarily let her have a TV in her room when her recovery was long and painful.  Other examples — not expecting “please” and “thank you” and prompting a child’s super best manners when they are under stress. Carving out time in the day for an extra snuggle. Being patient with impatience. Listening to your child when they are saying with words or body language that they need a short visit today. So many ways to be flexible that are about connecting deeper with a child who is hurt and scared. 

Those are some of the things that we do. They are simple and common sense, but can be forgotten in the hectic life that is hospitalization. I know we usually bring a picture, for example, but we didn’t have anything on hand this time. And remember — you can do these things for yourself, too, not just for the kids in your life. We all need a little comfort when life gets big and rough. 

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It’s her, but it’s also us.

I’m amazed by my girl Diva every day. I post a lot about her progress in various places around the web, and people inevitably write about how they don’t think that XYZ could do that. They talk about other kids and say, “like Diva before Diva had her talker”. They add a lot of “buts” or other conditions. “My kid is severe… My kid is developmentally… My kid is…”

Every time I’m reminded of what one of my role-models, Erin Sheldon, says about her daughter. Her daughter didn’t change. Everyone around her changed how they viewed her daughter.

Diva still has many disabilities. The list is long: microcephaly, occipital encephelocele, cortical vision impairment, nystagmus, strabismus, amblyopia, moderate intellectual disabilities, dysautonomia, cerebral palsy, hyperacusis, apraxia, post-traumatic stress disorder… Basically, learning can be complicated for her. For most of her life, these things were seen was barriers. She could not walk, or talk, or even see that well. She was stressed and crying much of the day. Her life was seen in this way: cannot, will not, too hard, too much, too… She was too “disabled” for a communication device, for a bike, for a gait trainer, for learning. She was trapped by the making of her own labels, with foster parents who scoffed at the concept of her listening to stories, with doctors who focused on how limited she would be and for how long (read: forever).

And then she came to us. I’ve been around too many people with disabilities, too many self-advocates, to fall for that list. I saw something different: a girl who was feisty, who was determined, who had this vastly unknown and untapped potential. We responded to her. We responded to her words, her actions, her body language. We created opportunities. We read books. We sang. We played iPad. We talked. We attributed meaning to everything. If Diva turned her head, we assumed that it was on purpose. If Diva said, “ba”, we assumed she was calling us. If Diva threw a ball, we assumed she wanted to play with us. We created a world that wanted her. We created a world that saw her. We created a world where she had hope, because her actions were changing things. We refused to be knowledge gatekeepers, to limit her skill or potential to what our imaginations held. We created opportunity.

Diva is blossoming. She uses a communication device that has well over a hundred words open. She is beginning to walk independently, a few steps here and there. She can manipulate the iPad to play her favorite games. She found words on her electronic word wall with only one or two models. She is beginning to pick up books and hand them to us. She dictates words to us for her journal and scrapbook. She tells us what is wrong. She can fill in the words to hundreds of songs, even when she hasn’t heard them in months.

But she still has lots of disabilities. She has all the same challenges. She’s the same child that couldn’t, wouldn’t, never… We just see her differently. We see her as capable, and we give her the chance. We didn’t wait for her vision to heal or for her to gain magical finger isolation skills. We knew that she had something to say, and so we created a communication device for her. We made sure it met her needs — her vision, her motor, her language needs. We modeled. We created opportunity. And she blossomed. It keeps happening, again and again. It doesn’t matter how many days it takes, how many years it takes before… Walking, talking, reading, writing, etc… It doesn’t matter. We won’t stop giving her chances. We won’t stop seeing her.

That’s what I wish for every child with significant disabilities. I wish for them opportunity. I wish for them hope. I wish that people would stop thinking that educating and trying is pointless, just because of a bunch of labels. I wish we would stop measuring them against the typical, the norm, the mainstream, and start just seeing them, as they are. There’s this whole population of children and adults whose talents and gifts are being wasted on the world. A whole population. And we need them. We really, really do.

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No meds?

For a long time, it’s been a little hard for me to fully grasp why people would go off medications or refuse them. I intellectually understood the argument, but medications have changed my life so much for the better. I am calmer. I sleep better. I am more pulled together. I am blessed, though, in that my medications have had minimal side effects on me, other than weight gain.

Until my prescription wasn’t called in for a week, and I ended up having to miss quite a few pills. Yes, I started looping things over and over again in my head, unable to stop thinking about the things that scare me. Yes, I got stuck fixing things a few times, moving things around and around and lining up the angles just so. Again and again.

But I also could figure out what needed to be done around my house, with my curriculum, with my files, with my calendar… I could hang things on the wall in a beautiful way, draw straight lines, move around furniture to create an accessible space for my daughter. I could remember what needed to get done. Emails that I had forgotten about for weeks popped it o my mind and I handled my business. These might seem very small deals to you, but they are ME. That is who I am, also. I am organized. I have a memory that catches the details. I read books and clean house and organize things compulsively, sometimes redoing the same lesson plan 5 or 10 or 15 times before being able to let it go. That is ME.

It feels less natural to be back on medicine than it felt to be off. I like me on medicine. It takes the edge off enough that I don’t feel angry inside or balled up into a mess. I can get out of bed and feel joy regularly. But there are pieces of me that fade and there are other pieces that disappear. Mostly, I’m still me. Mostly. I’m me enough that I stay on my meds, that the weight gain and the slight dulling are worth it. That’s probably not always true for everyone, though. I get it now. I get the weighing of the decision, of yearning to be yourself, completely. I get that everyone’s decision will be different. And not only that, but the same person may make different decisions at different times in their life. And that’s okay. It is totally okay.