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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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Why do you post conversations?

I don’t prioritize full length blogs the way that I would love to, but I do post snippets and conversations of our life over at Facebook at all the time.

Why?

Because the internet is still filled with stories about how disability = unable, how “non-verbal” = nothing to say… One such story posted on HONY today, a story I tried to give the benefit of the doubt when a friend messaged me about it. Except that she was right, and I was wrong. We cannot give those stories the benefit of the doubt. We don’t have the privilege, not when the mainstream story is still that reading books and learning is a pipe dream for the majority of our kids.

I share these conversations because I want to show the world — and many parents — how much their child can do, right now, as their child is. We didn’t “uncover” Diva. She wasn’t “hidden inside”. She is just herself. She has multiple disabilities. She learns differently. She is impacted both by her disability and by the way society treats her. One of those things can be changed.

Diva has conversations with us using single words and telegraphic speech. She uses signs, body language, AAC, and vocalizations. Sometimes she goes all day only talking about Diego & The Wolf Pup Rescue. Sometimes we go a long time with her ignoring us and hanging out in her room. All of those conversations can — and should — be respected and valued just as much as any conversation with past tense and contractions. Her conversations are shared because you need to know that your child can do this too.

Little Man sees the world through a completely different lens than the neurotypical child. He struggles with the gray areas of thinking and problem-solving, but he also is creative. He struggles with abstraction and social norms, but he also has a big heart for friendship and kindness. He struggles to understand jokes, but he also loves to be silly as he recently told his aunt. None of these things are not mutually exclusive. His conversations are shared because you need to know your child can do this too.

I don’t want their lives to be inspiration porn. I don’t want people to read a conversation and think that Diva has “overcome”. Overcoming is crap. The only thing she has to overcome is this world’ stupid projections on her, and I don’t think that’s fair. I’d rather tear those projections down than force her to fight against them. My biggest hope for each of my children’s lives is simply that they will be seen and loved without feeling a need for pretense or hiding. Isn’t that what we want for every child?

The true story is that there is value in their way of thinking, being, and interacting in the world, without a need to become more neurotypical. In fact, I don’t want them to be more neurotypical. Their value is being who they are as they are, just as my value or yours is made. And so I write. I share the everyday moments of our lives. And I hope that every child with a disability will know the same things — that their voice is heard and that they are seen.

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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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Appy Monday: Clicker Communicator Review

App: Clicker Communicator

What it’s for: Communicator is an AAC app with three built-in levels of vocabulary. It’s a core word language app with lots of available language on vocabulary level 2 or 3. Clicker comes with Acapela voices and the Symbolstix image library. You can also create stand-alone vocabulary sets that could be used to supplement children’s systems. For example, if you were reading about climate change and wanted children to access words not in their systems, you could create a board for that. There’s also dozens of pre-made materials for various songs and activities.

What we love:

Home page of Clicker for Diva. Black background, gray message bar, red delete button, with nine Super Key clusters with different word types. Pronouns and prepositions to the left, verbs in the middle, descriptive words on the right.

Screenshot of Diva’s Clicker screen.

Screenshot of a super key. Gray message bar window, black background. Six keys in different colors with the messages: chat, actions, describe, don't, not, and wait.

Screenshot of a Super Key after it is selected.

Super Keys!!! The Super Key option is hands-down the reason why we switched Diva from Proloquo2Go to Clicker Communicator. Super Keys makes this one of the very best apps out there for children with more significant visual and/or motor challenges, in my opinion. What’s a Super Key? You can see in the images below that the main home screen of Diva’s page has been split into nine clusters of keys. When she hits that cluster, the six icons on that Super Key then enlarge. With Super Keys, Diva now has 45 buttons on a screen. The most she has ever had before was 25, and she really did better with 18 or less. It adds one extra hit, so to speak, but it opens up the whole world as her maximum vocabulary size tripled. And we are fairly confident that we will be able to expand this grid with time and add 3 more rows, one row per Super Key — another one thousand words. That will make her layout competitive with the number of words in LAMP, Proloquo2Go, and other robust language apps. Super Keys also has increased her independence and accuracy more than anything else we have tried — more than keyguards, more than spacing, more than color-coding.

The main edit screen for communicator. The topics (or pages/folders) are listed to the left, with the current page being edited in the middle. Color choices are at the bottom.

The main edit screen for Communicator.

Editing screen of Clicker Communicator, with an animals pop-up. 12 animals are displayed that you can touch to add to the page.

Displaying a pop-up where you can select images for a page.

Editing – Communicator has some of the easiest editing features that I have played with. You can literally type a list of words in, hit enter, and it will send the words to buttons — and add pictures for you. You can also pull-up the pictures from your symbol library and select the ones you want to add. It will be inserted in the order that you click. If you’ve pre-colored buttons, they will keep their color as the words are added. Swapping button position is as easy as drag-and-drop. It’s pretty easy to pull up a button and make changes — will this button speak? Open another topic? Insert words? It didn’t take long to figure out, but there are also some really good support systems in place if you struggle with technology, including a built-in help guide. I’m now so in love with their way of adding words and pictures that I feel frustrated when I open other apps and have to add words button-by-button.

Gray message screen with

Picture supported word prediction keyboard. Alphabetical and QWERTY layouts are available. You can also edit the number of words predicted.

Keyboard – The Communicator keyboard also uses Super Keys if enabled. The extra bonus comes with the picture-supported keyboard. While we rarely use picture supported writing during journals, I love the picture supports for communication. It will assist my daughter to find words independently, while also giving her a way to access UNLIMITED vocabulary.

Alarm – I have to make sure I mention Diva’s favorite feature, which is that you can set a button to sound an alarm, rather than speak text. This is when it became clear to me that Clicker knows its audience and has worked with children with multiple disabilities for a long time. This alarm is essential for her — it gives her a loud and quick way to call for us across the house. She also tends to use it these days to say something like, “I mean it!”:)

What’s okay: The vocabulary templates are pretty solid. They include core, fringe, and keyboard access. There are spaces marked to help you remember to put things in (like “my name is…”). My only complaint is that the layout was not necessarily designed with Super Keys users in mind. This makes some of the positioning a little awkward. There might be 3 different colors of word types on a single Super Key. It’s still usable, but we did end up designing our own vocabulary layout.

Support: The support team for Communicator has been hands-down amazing. We participated in one webinar that was offered to the public, but were then able to set-up a second webinar for ourselves, Diva’s team, and a friend to ask specific questions about Super Keys and scanning. The Faceook group is small but the support staff have been really on top of it. They have answered questions, taken ideas/suggestions, and helped troubleshoot the things that come with any brand new app roll-out. I’m a HUGE fan.

Caveats: We have not yet tried any switch control with Clicker Communicator, since Diva uses direct access. I could see the set-up’s working really well with switch scanning, automatic or two-step, but I can’t speak for it personally.

Price: $150, with in-app purchases of PCS or Widgit symbols for $50 each

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Friday Five: Shaking It Up 

Sometimes I find our language modeling is getting stale. The first sign is usually that we begin noticing repetitive conversations and phrases. We aren’t branching out, and so Diva is not branching out. We might use the device a little less, and rely more on guesswork and gestures. Here are five things we do to help keep the routine from getting stale — and to keep expanding Diva’s language. 

  1. Add more words. And make them interesting ones! Add more basic core words, certainly, but also add fun words like delicious and aggravated and mime. Part of learning to talk is falling in love with the language. Give your child things that s/he can fall in love with. And if your system has no room for playful words, it might be time to explore new systems. 
  2. Add special interests. A lot of moms I know talk about how they add new TV characters when their child starts losing interest in their talker. This makes so much sense to me because our kids need to be able to talk about the things THEY love. If they can’t, they won’t use it. Add TV characters and train line stops and the titles to favorite songs. Give them a way to tell you about what they love. We just added the characters from Yo Gabba Gabba, and you can bet that was the first thing Diva wanted to talk about in the morning. 
  3. Double-check: are you ensuring access to the system all the time? Systems are so easy to get left behind. This is why we use a Gab & Go Harness. When we start seeing a drop in language use, we often find that we weren’t doing our best to re-attach her harness after a bath, or first thing in the morning. The talker HAS to be there to take advantage of opportunities as they arise. If your child cannot have constant access or easily initiate their full system, maybe consider teaching use of an “I have something to say!” wrist band (raise arm in air), Big Mack, or other way to provide a link between child and system. And make that always available. 
  4. Try a new activity. Be creative and try a new play activity that might spark ideas for words. New activities inspire us to try new words, but they also offer us a chance to let go of the “I know her like a mom does” thing. We make a lot of assumptions about what our kids think and feel. New activities force us to drop that and see what they actually SAY about this. And there are so many different things we can explore. In a FB community, a mom mentioned having her child direct her to make different things with Play-Doh. Dana wrote a blog about TV character puppets. We have used new music videos to spark conversation, since Diva is hugely into music. I think it’s really, really important for the activity to be chosen because it’s FUN, not because of its therapeutic value. FUN is what gets kids talking. 
  5. Create a new family ritual. Find a way to add a 2-3 minute family ritual to your day that relies on communication. Don’t make it hard or a burden. And don’t pick a time of day that’s already hectic. Morning rituals would be a disaster for us. Evenings work better. Dinner. Before bed. After bath. Rituals can be prayers, questions about days, telling stories, sharing a cuddle on the couch, working together on a puzzle . It’s what works for YOUR family and what causes you to model. One of our favorites is to have everyone share a highlight or funny part of their day at the beginning of dinner. It doesn’t happen every single night, but it happens often. We model things that we say, and then we give Diva her own turn. Seeing her participate on her own has been awesome. No more guessing or relying on teacher’s notes. She says herself – “markers markers markers” and “favorite show want get”. That’s worth all the time and effort in the world. 
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Late. Again. And again. 

I used to be really, really good at being on time. I also used to never miss an appointment. I never cancelled things last minute. I always showed up when I said I would. 

And then I became a mom. 

I learned that life runs on no schedule. The hours can pass in all kinds of ways. I will cancel things. I will almost certainly let people down. I will be perennially 10-20 minutes late. I am sure there are moms who still run on schedule and still always show up where and when their calendar says. I am not that mom. 

It’s been really hard for me to adjust. I’ve snapped and yelled and blamed people — usually Husband. I’ve set alarms and timers and used Google calendars and ToDo and iCal. This is just how life is now. It is messy. It is so very exceptionally messy. 

I’ve (mostly) learned to be okay with this, and all due to the people who surround me these days. We have therapists who roll with it. We have friends who know that cancellations aren’t about a lack of love — just the way our lives might be flowing right now. Their willingness to be with us when we show up has helped me start realizing showing up isn’t about the time. Not really. It’s the effort (we do still try, I swear, even though I sound like a flake). It’s the presence. It’s the connection. Rushing never connected me to my kids. It didn’t even connect me to myself. It was about being “the girl who is always on time”. Now I’m the “mom who is a mess”. I’m a mess! But I am me.

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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?