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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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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: 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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Hard days.

Sometimes, we have hard days. We hear about hard days at school, or have hard days at home. Maybe something gets thrown, or someone screams. Maybe everything’s a mess and now there’s a hole in the wall. Hard shows up in lots of ways. When hard shows up, the first instinct is to MAKE THINGS CHANGE. We are taught by society, by our own upbringing, to threaten, to punish, to consequence. “Go to your room!” “If you don’t stop that, we are not having pancakes!” “That’s enough!” “Get back here this instant!” (And, yes, most of those lines do show up in the book No David. They are said way too much.)

We often feel afraid — what if I don’t get control over this? What if this happens everyday? What am I teaching? Am I a good parent? Am I doing this right? What if every day becomes hard? What do the teachers think of us? What will the world think of us? Why is this happening? Indeed, our minds are really quite good at playing games and spinning us in fear circles of “what if”.

But what happens when you have a hard day? What do you want from your best friend? From your partner?

I know that I’ve come home, slammed doors, stomped my feet, and been in a bad mood. I’ve been tired. I’ve been cranky. I’ve raised my voice when I didn’t mean to. I know that Husband does not send me to my room. I’m pretty sure doing that would make me slam another door. He doesn’t tell me that he won’t cook my favorite dinner unless I get it together, or that my actions will mean that we can’t go to the movies this weekend. Think of saying those things to your peers. Would that relationship last?

Instead, I might get a hug, or a hot chocolate. I get time to watch a show or take a nap, on a lucky day. I always get understanding. I get nurturing. I get questions of — “what can I do to help?” Why do we choose differently for our kids?

Today was a hard day for some of the members of our family. So we came home and didn’t bring it up. We followed our normal routine. We watched The Avengers and Diego and used the swing, doing all the after school things that help everyone wind their bodies down. We played video games and ate baked ziti (a favorite meal). We talked a little, asked a few questions, probed for feelings and underlying things. We briefly talked about how “stick together” means stick together on field trips AND at school AND at home (a point of confusion). Then we moved on to bath, with lots and lots of toys, and George. We compromised. Over the evening, the tension began to dissipate. The goofy antics of anxiety around “What’s going to happen? I had a hard day! Oh no! I’m in trouble!” relaxed. We snuggled and hung out. We acted out of love, instead of fear.

Tomorrow might still be hard. I don’t act out of love to manipulate tomorrow into being easy. I choose connection because of respect. I choose connection because that’s what we value, now and long-term. People will tell me that I didn’t do enough. People will say that I am not teaching about the real world. Here’s the thing — I think the real world has enough natural consequences of its own, and I don’t see my job as making up fake ones.  I see my job as being a soft place to land when things are hard. I see my job as working together to form proactive solutions for tomorrow. I see my job as meeting needs. I trust that kids do well if they can. I’ve lived the experience of kids doing well if they can. I know that everyone in our family CAN.

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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?