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How We Do It: Her Words, Not Ours

Two weeks ago, we wrote about how we familiarize ourselves with Diva’s talker and get comfortable with the concept of modeling. This week, I’m focusing on how we started modeling language — what we modeled, when we modeled. A lot of families and classrooms start with a few focus core words, like the year of core words. They choose 9-12 words to model for a month, rotating throughout the year. This can also be done by choosing 2-4 words per week. More, eat, play, want, those all tend to be really good starting words. This approach works for a lot of families. I’ve even recommended this approach for families. It builds familiarity with the system. It offers lots of options. It prevents you from getting stuck on the same 5 words and never moving forward. It’s a good approach.

It doesn’t work for us.

I’ll never forget a Linda Burkhart workshop where I asked about this, and whether we should choose focus words. She responded by reminding me that part of communication autonomy means that Diva gets to decide her first words. She gets to decide which words are important to her. Toddlers aren’t limited to 12-15 words we think are most important. Some of them choose really strange words to fall into their first 10 words, based off how they sound and what reaction they create. Diva needs the same opportunity. She needs all the words, and she needs to decide what’s powerful.

Still, that can be overwhelming. All the words? But we’re brand new! We’ve never done this before! Where do I start? Start by knowing that you will make so many mistakes in this process. Communication is messy. You will miss opportunities. You will accidentally speak over your child and move their hand from the board. You will guess wrong. You will forget the talker on the table when you’re in the bedroom. You will forget to charge it. And none of that is going to wreck your child’s communication for life. Start by doing the best you can right now, and knowing that you will keep growing.

When did we model? We chose one or two routines to observe and focus on modeling language. We started with snacks and meals, because the positioning is really good, access is easy, and both parents are there. We made sure she had her device all day long, but we took extra time to think about and pull in communication to these meals. After a few days, we started doing more during play time with her. Then, we focused on modeling whenever we were transitioning to a new place. This isn’t perfect, but we found that as we gained fluency in these routines, we started modeling at other times of the day very naturally. Without planning, without thinking, we started modeling her system all day long. And we started modeling a lot more things than a word of the week. Our lives are busy with attention split in 20 different ways at any given time, and this is what worked for us.

What did we model? We watched HER. We wanted to guess what words would matter to HER. Not our words. Not what we think matters. But what might matter to her. What objects is she looking towards? Reaching for? What are the other people in her life touching, playing with, watching right now? Does she need a way to request or comment on those objects? What is Diva’s body telling us? Is she smiling? Frowning? Does she appear frustrated, mad, or sad? Is she spitting that food out or munching on it happily? Does she ask for this thing again and again, might it be a favorite? What choices can we offer her — not choices of requests, but choices of things she may want to say? Linda referred to this as linguistic mapping — mapping language on to what a child’s body language and expressions may be telling us. Linguistic mapping is hands-down the most powerful thing that we have done for Diva. And her first words with her talker weren’t nouns, nor were they more, want, eat, play. They were “next” like “What’s next?” and “next song”. They were “mad” and “frustrated” and words to express her disapproval of what was happening around her. They were “go away” (first two word phrase).

We do model what we are saying and doing. The slowing down of our phrases and highlighting key words has helped with understanding and providing a rich vocabulary. It also automatically gives us content to model, since we tend to speak too much anyways. But it’s never been our focus. Our focus is always about what she might want to say. If we are modeling “STOP”, 97% of the times it is modeled are because she may want the swing to stop, may want us to stop, may want to leave the activity. Her talker isn’t a way for us to dictate what she must say and do in her life. It is her voice.  Hers. It is her way to control her world, express her feelings, and be the independent and sassy tween that she is.

To close, I’ll leave you with some examples of things that we may model during a short snack, hoping to showcase the way that we make this about her words (not ours) —

  • Do you want COOKIES or PUDDING?
  • I wonder if COOKIES are your FAVORITE.
  • That looks DELICIOUS.
  • I think you might be HAPPY or EXCITED.
  • You want MORE.
  • Your brother is LOUD. You DON’T LIKE.
  • This is MESSY and STICKY.
  • Do you NEED a NAPKIN?
  • Maybe it tastes SWEET.
  • I wonder if you want to EAT or DRINK right now.
  • You are FINISHED.
  • You look like you WANT to GO.
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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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Five for Friday: 5 Favorite Blogs

1. Low Functioning? High Functioning? What Are We Really Saying?

“‘Low functioning”‘tells me nothing and gives me no clues EXCEPT to tell me about the adults who work with the child. When I read or am told that this child is “low functioning” it tells me right away that the adults in this child’s life have not done enough problem solving to discover what supports the child needs in order for him or her to be successful.”

2. A Thought Experiment

“Let’s do a thought experiment. You’ll come along for this journey with me won’t you?

Imagine that your classroom receives a new student. She’s 7 and has been home-schooled until now, no formal education at all.  Her parents report that she developed normally until around 20 months. At which time she became very ill and developed multiple disabilities. The audiologist reports that she has no hearing (based on an evoked auditory potential test done under sedation) and the neurologist has provided a report saying she will not recover vision and that she is untestable using standard measures. Additionally, she has significant behavioral challenges and she appears to have a cognitive or intellectual disability.”

3. Would You Accept this Behavior Towards a Non-Autistic Child?

Heidi, of Speak for Yourself, writes about the ways that teaching approaches are often dramatically different for children with autism or multiple disabilities than for children who use speech. She points out how these differences are not supporting our children to become autonomous communicators, and things we should think about when planning instruction, selecting therapies, and working with teams.

4. Welcome to the Club

This is one of the only posts to newly diagnosed families that I’ve ever seen which both acknowledges the journey ahead AND values the autistic child’s life & personality as completely worthy. It’s a really beautiful balance.

5. Do You Believe In Your Children?

“A child — any child, not just an Autistic one — is a work in progress. By this I don’t mean that they are a someday-person. Every child is real and authentic and fully human in this moment, perfect just as they are. But they are also a sort of seed of the adult they will hopefully grow to become.”

This is a great blog for reading about the experience of being autistic by autistic adults. I go here first whenever possible.

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How We Do It: Modeling Language, Part 1

Over the past year, I’ve become fluent in AAC-speak across several systems. I model language in all of my waking hours, between work and home and play. Anytime there is a device around, I am touching it (with consent) and showing where words can be found, what things we can say, how those pictures relate to what is happening all around us. It was not always this easy, and so I am sharing a few tips that got us here.

1. Carry it everywhere. I mean EVERYWHERE. Be sure that AAC is available in the bathroom and the car, at a restaurant, on a swing, at the park. Bring the device to small group art projects, trampoline play, pretend play center, the cafeteria, and whatever else pops up in your school day. Do your very best to find ways for your child’s voice to be available everywhere they go, all day long. This is even more important for children who are not able to fall back on gestures and vocalizations, or who cannot go get their device on their own. Use a harness. Try different straps. Find a mount for the wheelchair. Attach pages to walls and tables. You, the adult, wear it, if your child or student will not. Find one way or many ways that you can make sure the device, the book, the system is always, always at your finger tips. It is impossible for me to exaggerate the importance of this first step. If this is all you do for two weeks, three weeks, or even a month, then you are being successful. We need to get in the habits of always having our children’s words available to them, just as speech is always available to those without AAC. To leave a device unavailable is to tape our children’s mouth shut. Yes, I know that sounds extreme. It’s true, though. What way does your child have to share her thoughts or his opinions without it? Can they effectively protest, reject, gain attention, and comment when their system is on the other side of the house? We are so serious about this around here that when Husband forgets to attach Diva’s harness before she scoots into the living room, he immediately apologizes to her. When I get a picture from OT, I say — “Where is her talker?” When we visit her at school, we note whether her words are within finger tip’s reach from her. Yes, it is that important.

2. Play. Whenever we have made changes to Diva’s system, we’ve spent time each night, after she goes to sleep, just playing on her talker. It doesn’t have to be long. Five minutes is enough. We don’t have a mission of what we want to say. No agenda. We’re not practicing for something, rehearsing scripts and phrases. We are literally just playing. We hit buttons repeatedly to hear what the word sounds like. We string together nonsense sentences. We follow our whims as we open this folder, close that one. Play is so important. It takes off the pressure to “figure it out” and know what’s happening. It lets us experience the joy and playful associations that come with visual and auditory language, re-experiencing the way we played with sounds and words as  a toddler ourselves. I’ve seen myself that when staff members and general education peers feel comfortable approaching talkers just to play, their language modeling increases dramatically over the course of the day. They are so much more comfortable with the system and with their own understandings of it.

3. Practice. Now we start practicing, often when the child or AAC user is asleep, unless you have a second system. You can also practice on a printed version of the child’s high-tech AAC if you do not have access to their device (such as a teacher who cannot take a child’s device home). Brainstorm some things that you may want to say to your child, something that you wish you knew where it was today. Look for those words and phrases. Practice putting them together and then speaking the message, if you have a system with a message window. One of our favorite ways to practice is to watch videos on YouTube: a clip of your child’s favorite TV show, a cute video of a baby laughing, or a video of two kids playing — whatever seems relevant to your lives. The first time through, we brainstorm things we might say. The second time through, we practice using that phrase in the moment. This takes all of five minutes — two minutes to watch the clip, one minute to find words, and two minutes to practice using it in the moment. Five minutes a day and you will be prepared for all kinds of topics as they come up during the day.

4. Converse. When you are feeling really brave and ready, you can build on your practice by having conversation. Sit with your best friend, your husband, your mom, and chat using only AAC. One of the moms in a favorite blog of ours has spent days speaking only through AAC, which taught her so much about the experience of living our children’s lives — and made her very comfortable with AAC! We’ve done dinner time with one parent speaking through AAC only. It was eye-opening in learning which words were not available, but also in slowing down our speech and engaging conversation around the table. Our son thought it was so fun that he asked for us to put her app on his iPad so that he could join us in using AAC!

Of all these things, carrying a device everywhere is the most important. It’s difficult to take advantage of opportunities when the device is in the next room — or still at home. I know that none of these things are actual language modeling to your child, directly, building their skills. Your fluency helps, though. It builds comfort and confidence. It takes away that awkward feeling that comes when you first try to speak and touch pictures at the same time, especially around people who may not be familiar with your child or AAC. That “I feel weird” is often the biggest hurdle for parents and staff to overcome. Who do you want to learn French from? The struggling student who is also learning to memorize a series of nouns, or the fluent speaker who can break things down, show new paths, and illustrate the rich joy of language? You want to be that fluent speaker. Creativity and inspiration come when automaticity allows our brains to focus on what we are saying, rather than how we are saying it (via device, instead of vocal speech). Besides — it shows our children that we are serious about their voices, that we find value and importance in learning to speak to them in their language. And that is an important first step.

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Happy Appy Monday: Moose Math

We bought Moose Math last week to help with preventing some of the infamous “summer slide”. I wasn’t sure how it would go over — if it would be a little young for LM, if he would find it too simple. He is going into 2nd grade, and may be a little older than the intended audience. No need to fear! The bright graphics and fun game play of Duck Duck Moose has lured him in. He chooses Moose Math daily for iPad time.

What You Practice: A variety of early elementary math skills: counting objects, adding objects to find a total, working on word problems, and early algebra (I have 2 and I need 7, how many more do I need?); children with beginning counting to early addition skills could use this app.

Access: There’s a lot of drag & drop in this app, but there is leeway for not placing objects “just right” into their spaces.

Picture featuring an empty blender in the middle, against a blue background. On the left, there is a recipe for "Sweet Cherry" - 6 sugar cubes and 6 cherries. On the right, there is an open refrigerator with sugar cubes and cherries to be added to the shake.

Moose Juice Activity.

What We Love: Duck Duck Moose never fails on putting together high quality graphics with really crisp design. The levels build skills bit-by-bit, so LM has never hit a frustration point where he wanted to quit and not return. I love that their feedback on right/wrong is not shaming. If you put the wrong number of ingredients in the blender, the shake just turns green instead of delightful pink — much like shakes could taste bad in real life with too much lettuce or beets! There’s also multiple mini-games to explore so that fatigue and boredom can take longer to accumulate.

LM Recommends: Moose Juice! He loves to throw fruit all over the screen, testing out different angles and velocities to make it into the blender. After throwing them around a while, he settles in and counts out the ingredients.

Parent report card for "Moose Juice Activity". Each of the levels is marked by a circle, which is colored based on percent mastery. Below are two columns. The first says "mastered skills" and lists "counting by ones up to 1". The second says "skills to improve" and lists "counting by ones up to 7".

Parent center report card for “Moose Juice Activity”. It shows the mastery percent for each level, as well as mastered and emerging skills. DDM’s high-quality design shows through even here.

Parent Corner: This is our first use of a Duck Duck Moose app with a Parent’s Corner “report card”. It lists the activity, which skills are targeted, your child’s current level, and a breakdown of mastery v. emerging skills. It was interesting to see where some of the skill breakdowns were occurring and what he is practicing while he plays.

Recommend: Yes.

** Author is not affiliated with this app and does not receive any compensation from this company.

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Radical acceptance.

I think that sometimes people think that because I advocate for self-advocates’ voices first, because I don’t wish for a cure, because I despise terms like “high-functioning”, because I strongly endorse neurodiversity, that I don’t know what “their life is like”. I must have one of “those” kids. That’s the message from various blogs I’ve seen recently, including from The Mighty (one of the many complaints I have against their site).

I do know. I know the meltdowns. I know carrying your child out of the zoo while everyone stares. I know buying locks and video cameras and alarm systems. I know having every minute scheduled because down time is dangerous. I know the communication breakdowns. I know guesswork. I know crying and having my stomach clench a million times over because, without a way for my child to tell me what’s wrong, I missed some sign of illness. I know not being invited to parties. I know IEP meetings and eligibility and advocates and private day school (twice over). I know in-home therapy. I know the choices that have to be made. I know the worries about the future — for both of my kids. I know the exclusion of our kids. I know searching for babysitters at high wages and still not finding someone to take the job. I know the hospitalizations, the psychiatrists, the specialists, the medications, the surgeries, the complications, the many appointments each week (never less than 8-10 in this family). I even know police escorts, multiple times over, which probably doesn’t fall under the usual.

Here’s the thing — I know that the vast majority of that could be remedied by something so close, so easily made, and yet so elusive — by a world that actually accommodates and welcomes our kids. I would never have to fear about Diva’s life after 21 if she was included in a way that led to true friendships and community. I would never have to worry about LM being hurt by police or bullied by peers, if we had a world that relied less on snap judgments and more on perspective-taking. I would never have to scout out locations for family outings beforehand to know if Diva will be able to access them.

I know all that hard stuff, and yet that’s not what I blog. I blog the awesome stuff. I blog the awesome stuff because I genuinely believe that’s what needs to be heard. (And because that’s what respect for my kids means to me, which is equally important.) We know the “other story”. The “other story” is all we’ve heard for years. If you ask someone on the street about autism, it’s “the other story” that they know. That’s the picture they have in their mind. They don’t know the magic of hearing Diva say “get chocolate” with her iPad for the first time, or that LM’s scripts and turns of phrases make me think about my language at another level. They don’t see the way that neurodiverse points of view aren’t just an addition to our world, but something essential to our world. I dare you to see the full beauty and joy of presuming competence, of celebrating someone, of radical acceptance as a child is, right now, in all the pain and good, and not be forever, completely changed.

I also blog about the funny, the heart-lifting, the cheering-rah-rah moments because we have got to stop putting our kids in freaking boxes. We have to stop saying “my child can’t” and “my child won’t”. We’ve got to stop taking this one moment in time and projecting their entire future from it. We need to look at self-advocates and say — what can I do to make sure my child can do that? We need to see a skill and say — “my child can’t do that yet” or “we haven’t figured out the right accommodations to support that yet.” I’m tired of people thinking that a child who can self-advocate must be a child who doesn’t have a lot of needs. I teach BOTH of my children self-advocacy every day. I’m tired of people thinking a child who is verbal must be “easier”. My youngest is quite verbal, and is also quite a bit more complicated. I’m tired of people full-on laughing at the idea of Diva learning about ecosystems or division or even something as simple as signing her name for a credit card receipt.

Those autistic self-advocates? They really, really do know. They live it. Their experiences do count more than mine. Their voices should be louder than mine. They live an experience that I can never know, one of sensory disregulation and ableism and communication struggles and ableism. Yes, I said ableism twice. Each time we say that they don’t stand for our kids, we are being ableist. Each time we tell our kids that they can’t, we are being ableist. Each time we say things like “he doesn’t have anything else to say” and “she’ll only be able to request” and “he’ll never have a job” and “no one else will ever care of him”, we are being ableist. We are saying that because of our child’s disability, they cannot — cannot be loved and embraced, cannot contribute to the greater society, cannot be someone who has value simply in who they are, as they are. I refuse to ever be that mom.