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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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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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Book-making elves

picture of adapted books on the Lion King, with single word phrases on each page.We’ve found that homemade books are one of the best ways to draw Diva into books these days. The books that are visually appropriate are often not textually engaging for her. Simple, bright pictures are best, due to her CVI, but the books with such things often say, “up and down” or “square, circle, triangle”. She’s nine years old. She needs books about things that relate to her life. We’ve made books about the ocean, recycling, ancient Rome, and The Lion King. Since we started using these styles of books with her, her story engagement has dramatically increased. She picks books up off the floor and signs “more” when I ask if she wants to hear them again. So I thought I’d share the three easiest ways that we’ve found to make books for her.

1. Repurpose board books.

We take old board books and re-do them into topics that are more fitting for a nine year old. We cover the pages in construction paper, add one high-contrast per page, and add one word or sentence to each page. We choose to use big letters in bright colors, often red, due to her CVI.

2. Make alphabet books.

We have an alphabet book template that we use on Keynote. Every time she has a new topic in social studies or science, we make an alphabet book. A is for aqueduct, B is for baths… This way we can use whatever she is doing at school to practice all the literacy and alphabet stuff that she enjoys. I don’t know that Diva will master all the concepts of the Ancient Rome unit in two weeks, especially when she’s only in science or social studies for half the period. I do know that she can grow as a reader and has an unknown potential to be a literate citizen of the world. I know that she can learn more about how we learn, how we get information, and how we share that information back out with the world. So we use these times to create materials that practice all those skills, and continuously keep plugging along.

3. Create simple picture books.

This is when I really follow her interests to create books that she can manipulate and read herself. This is supposed to be some of the yummy stuff for her, the things that will draw her in and entice her to dance a little further down the literacy track. I use pictures of things that are fascinating to her. Diego. Favorite food labels. The Lion King. We usually use single words or a predictable sentence frame (“I like…” or “I see…”). When we use single words, I try to use ones that are in her AAC device and can lead to conversation. “Eat” next to a picture of Simba eating a grub is a great conversation starter — “eat more”, “no eat”, “want eat”, “uh-oh”, “gross”, and “no way!” There is so much opportunity to model language. As she grows in her language, we can grow these books. Simple white sticker labels can replace the current words with longer phrases, longer text. It takes no time at all to make — save a few food labels, cut out some toys from a catalog, print 5-6 pictures from a favorite movie… Glue the pictures on bright paper, use a marker to write a line of text, and use packing tape to put the pages together. (Bonus of packing tape to put pages together = the pages tend to separate more and be easier for young kids and kids with fine motor delays to open and close their own books.)

Braille – For Diva, we add braille to all of her books using a Braille label maker. We place the Braille label over the text, unless it seems like it will interfere dramatically with the readability of the text. Diva is not likely to be a Braille reader — large print text and audiobooks are more likely. I don’t want to limit her, though, and I also want to give her a tactile experience of the printed word. She can then feel what it means to be a letter, to be a word, to be a sentence. She can feel that words are separate entities, that lines of text end, and that text runs from left to right. I never leave off Braille from her books now.

So, there you have it, three quick and easy ways to make your own books. We made 5 books today as part of preparing for Christmas, so I know it really can be fast. Now — to hope she enjoys the new books that focus on her favorite cinematic characters… The hyenas from The Lion King.

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5-4-3-2-1… Freeze!

We have been playing a lot of Freeze tag in our family. Every day, for 10-15 minutes, we play freeze tag. This is what Little Man chooses for his special time every day, and so we do it. We sprint and hide and chase and freeze and fall down. We laugh. It is exhausting, but it is worth it. For 10-15 minutes, we feel like a family. We hold hands. We hug. No one is yelling. No one is frustrated. No one is biting or kicking or hitting.

I create these moments where I can, and then I savor them. “Little Man time” is one of the only consistent pleasantries in my life. For 10-15 minutes every day, Little Man decides what we are doing and how we are doing it. It tends to get repetitive. We’ve played a whole-freaking-lot of “cat game” and “puppy game.” (His play repertoire is small.) The boredom meant that we stopped doing it, until Little Man started a holiday-fall-apart that quickly reminded us why our days have been so structured and routine.

The idea came from parent-child interaction therapy, where half of the program focuses on increasing the positive relationship between parents and extremely difficult children. “Extremely difficult” is an understatement for Little Man, so we gave it a try. We almost always end up playing something active: puppy games, cat games, monster games, hide-and-seek, tickling, now freeze tag. He loves it; I credit it for so much of our gains with attachment. Not only his attachment to us, but ours to him as well. How can I not attach to this curly haired boy who is nearly peeing himself with laughter?! And I don’t have to “do” anything! I don’t have to remember a special therapy game. I don’t have to remind him of special cues or make social stories. We just let him be in charge, completely.

When I talk to other parents about what has worked for us, I always recommend this strategy. It can be tricky in the beginning. You’re not supposed to give directions, ask questions, or quiz kids on things. You don’t get to be in charge of where the play goes. Sometimes, I’ve wanted to say — no more puppy game! Sometimes, the repetition is exhausting. Sometimes, though, it can be magical. You simply follow the child’s lead, and be excited about their interests. Comment on what they are doing. Spend 10-15 solid minutes showing (not telling) that you care deeply about everything this child does. Ten minutes. That’s all. And it does make a difference.