A Year with Speak For Yourself, Part 2

Yesterday, I had the following conversation with Fiona, while Fiona’s Personal Care Assistant, Erin, was present. [By the way, a professional AAC person will know I’m making a key error in this conversation, and you can identify it if you read this post about Deadly AAC Sins. But I’m still new to all of this AAC stuff, and I’ve learned to embrace this motto: better to use the talker imperfectly than not all.]

Fiona: [taps on her talker.] Old MacDonald Had a Farm. [This is all one icon on the talker.]

Me: You want me to sing Old MacDonald Had a Farm?

Fiona: Mm-mm [Nods.]

Me: What animal should I sing?

Fiona: [taps on talker.] Sheep.

[I sing a verse, using “Sheep.”]

Me: What other animal should I sing?

Fiona: [Taps on her talker.] Cow.

[I sing another verse, using “cow.”]

Me: What other animal?

Fiona: [taps on talker.] Again.

Me: You want me to sing cow again?

Fiona: [taps on talker.] Erin.

Erin: You want me to sing?

Fiona: Mm-mm! [Nods.]

Erin: What animal?

Fiona: [taps on talker.] Sheep.

[Erin sings a verse, using “sheep.”]

Shot from above, overlooking Fiona and her talker. Fiona is looking at the talker with interest.

Shot from above, overlooking Fiona and her talker. Fiona is looking at the talker with interest.

All of this is blowing my mind. Last night, after the kids fell asleep, I wandered the downstairs of my house, smiling and marveling and giddy with gratitude. My face felt two degrees warmer, like it was lit from internal sun. I am having conversations with my daughter.

This is a far cry from the first 3 years of Fiona’s life, when the poor child was subjected to countless verses of Old MacDonald without having any say about what animal she’d hear. Cow, cat, bird, monkey—Fiona was always at my mercy. I always chose.

Now she can tell me. Now she can chime in with her desires. “Wolf,” she has started requesting. Wolf? I never would have guessed. (I’m getting good at a Wolf impression. It’s very Teen Wolf 1985.)

She can also comment on the world around her. “Toilet” she said when I came out of the bathroom the other day. “Yup,” I said. (Thanks, kid.)

She can refuse things. “No,” she says when a teacher at school tries to move her toward a new activity. “No No,” she will repeat.

Fiona's thumb hitting

Fiona’s thumb hitting “no” on her talker.

“Funny,” she can tell me when I ask how she’s feeling. Or “Mad,” she said last night when I turned off a TV show. She can describe her feelings.

What’s her favorite color? Lately, she says, “Purple.”

This is amazing to me. This is delightful. This is gradually diminishing one of the most difficult (and painful) aspects of parenting Fiona: not knowing what’s going on inside her head.

Side-angle of Fiona in a blue and cream straw hat, looking at her talker--an iPad encased in a red foam frame.

Side-angle of Fiona in a blue and cream straw hat, looking at her talker–an iPad encased in a red foam frame.

We still have a long way to go in terms of helping her fully communicate. And we are probably screwing up in all kinds of ways (See this same post again). Also, Fiona uses mostly one-word responses (although she’s been combining two words here and there.) But I’m thrilled at her progress so far. She sees the talker as her voice.

In A Year with Speak Yourself, Part 1, I explained a bit about why we chose this specific iPad app, Speak For Yourself. Since that post, I’ve had several parents of nonverbal kids–especially parents of kids with Wolf-Hirschhorn Syndrome–ask me to explain exactly what we did. So here goes, a part 2, in which I break down some of the steps (and missteps) we took to get here. (Embedded are loads of links to sources far more credible and knowledgable than I.)

  1. About two years ago, when Fiona was somewhere between 18 and 21 months, I read this amazing blog post, in which fellow parent Dana Nieder encourages parents of nonverbal children to seek out what’s called AAC, or Augmentative and Alternative Communication. Initially I thought, “This mother’s not writing to me. My kid’s disabilities are too limiting, and my kid’s too young. Maybe in 2 or 3 years this will be relevant. Or maybe Fiona will be talking by then….” But these words from the open letter stuck with me: “Maybe they [nonverbal kids] are on the road to speech.  Maybe they aren’t yet. Maybe they just aren’t, end of sentence…. If, in your quest to help your child communicate, you haven’t yet tried something besides speech therapy (as in, therapy aimed at producing and refining oral speech), the time is now. Please, let the time be now.”
  1. Those words haunted me. Fiona was creeping up on two years old, and we—my husband, her therapists, and I—were doing nothing to supplement her inability to form words with her mouth. She wasn’t talking. Not at all. (Even today, she can only make two consonants and three vowels.) But she understood a great, great deal. I knew that gap between her expressive and receptive communication would continue to widen—she’d continue understanding the world around her, yet she’d have very little ability to make the world understand her. As a writer, this terrified and devastated me. This seemed like living in a locked glass box: you can see out, but you’re otherwise alone in there.
  1. After some researching on the Internet, I learned that my initial assumption—Fiona’s too young—was not true. I learned that 18 months is an ideal age to begin AAC if a child is showing delays. So I followed Dana Nieder’s (excellent and compassionate and encouraging) open letter step-by-step. Namely, I strove to find an expert in AAC who could help my family.
  2. I spoke with Fiona’s therapists. They made a referral and got us appointments with an AAC consultant in Burlington. And that is when I met our high expectations guru, Maureen Nevers, at the University of Vermont’s I-Team.
  3. Throughout the 2013-2014 academic year, we met four times with Maureen and another consultant, Tammy. They observed Fiona in our home and praised her strengths. I could tell Maureen immediately presumed great competence for Fiona. (I wrote about Maureen’s first visit here. It was euphoria-inducing.) (Also, FYI, Maureen has given me the go-ahead to use her name.)
  4. Maureen introduced my husband, Fiona’s therapists, and I to the principle of “core vocabulary.” This means, rather than giving a child a lot of nouns (such as on laminated cards, which we had been doing so Fiona could request what she wanted), current theory encourages AAC users to have access to “core vocabulary words.” These words represent all parts of speech; they are widely used, powerful, and appropriate across multiple contexts. So we hunted for a system that would provide Fiona with both core vocabulary and also the capacity for really specific words (like “blackberry,” or “Uncle Todd,” two things Fiona digs.)
  5. In April of 2014, with Maureen’s counsel and encouragement, we decided to give the app, Speak For Yourself, a bona fide, year-long shot. (Here’s the research-based evidence behind the app. Here you can find a brief explanation of why we chose SfY.) As Maureen wrote in her report, “…Look at this as a year-long process. If we take the next year to provide really good language modeling using SFY in natural contexts, then we can expect to see the fruits of that labor at around the same time we would see oral language develop (one year).”
  6. The great caveat: The icons on Speak For Yourself are small.
    A shot of the Speak For Yourself app.

    A shot of the Speak For Yourself app.

    Fiona’s fine motor skills were nowhere near able to access SfY in any reliable way. Everyone knew this. Some therapists seemed dubious about the app’s choice, and I often wondered if I was being ridiculous. But here’s the argument in favor of this particular choice, again from Maureen’s report, which sounds all-technical but just makes me sing:

“Even with the above explanation, it may be difficult for team members to understand how the SFY app can be appropriate when there is such a gap between Fiona’s fine motor skills and the dexterity required for the SFY 120 target display. It is much more common to see individuals with this mismatch begin by using a few large targets that they can point to successfully. Unfortunately, it is also very common that the child’s language development continues to be restricted by their physical skills.  Students who start with a small display of symbols usually have to demonstrate or “prove” their readiness for more words. Most of their communication systems expand at an extremely slow pace and never reach a level for true communication and conversation. The practice of requiring accurate, independent access to communication displays for individuals with motor impairments has faded away. Instead, we now encourage the use of alternative access methods, either temporarily or permanently, to allow the user to interface with the rich and interesting words necessary to communicate despite their motor challenges. Fiona is already able to communicate in basic ways using her own body, so we need to shoot for more than that. I hope that Fiona’s team is able to put any reservations on hold and to fully embrace the more complex language system being recommended. Ultimately, the impacts of underestimating her language needs would be more harmful than aiming high and adjusting for access needs over time.” [emphasis mine.]

  1. Aren’t you just saying Yes! Yes! Yes!? Don’t underestimate her language needs! Give her the words! Let her “interface with rich and interesting words”! [Just this past week, I added “Woohoo” and “Amen” to Fiona’s app.] Yes, Yes, and Yes!
  2. Alright, so here’s where I begin the nitty gritty. At the start of summer, 2014. Maureen gave my husband and I three paramount suggestions.
    • First, do a lot of “Aided Language Input,” which is essentially modeling. Fiona couldn’t access the talker very successfully, but we could. So my husband and I used the talker for Fiona, and for ourselves.
    • Second, let Fiona play around with the talker. Give her plenty of opportunities to explore it, and respond to her appropriately when possible.
    • Third, put zero pressure on Fiona to intentionally communicate with the talker, at least for a year. This absence of pressure was a game-changer for me. Without it, I probably would have quit, and Fiona would still be suffering through “And on that farm he had some pigs,” even while she was dying inside for just one freaking rendition of a wolf. Why was the absence of pressure such a game changer? Because it meant success was achievable. Success didn’t have to look like: Fiona wants to eat cheese, so she hits the ‘cheese’ button. Instead, success just meant, We, Mom and Dad, and whoever else cares for Fiona, use the talker as much as possible throughout the day. We could do that. And we could have fun doing it. And when we got overwhelmed from time to time, we could stop doing it for a few days, and then start up again. It was summer, after all.
  1. It’s important for me to tell you one thing we didn’t do. We didn’t ever say things like: “Fiona, show me where the word ‘ball’ is” or, “I know you want a ball, Fiona, but now show me on your talker!” (Dana Nieder calls this a “Deadly AAC Sin.“) At the advice of Maureen, we never made Fiona use the talker like she was performing for us. Because that’s not communication. That’s a Dog & Pony show. (But that does seem to lead to some beautiful power struggles if you’re up for a cage match!)
  2. So my husband and I modeled. All summer, we described what we were doing. We told Fiona what we would do next. We offered food and TV show choices with the talker. We read stories with it. We summarized the day with it. We tried to immerse her in as much talker-use as we could.
  3. We also forgot about the talker. We sometimes didn’t touch it for days. Because, you know, life.
  4. Then one of us would say, “We should use the talker,” and I would think of another excellent post from Dana Nieder, which I can’t find, where she tells me not to feel guilty, to just move on, and I would not berate myself for neglecting the talker. I’d get on with things.
  5. We also let Fiona explore the talker. A lot. Fiona smacked at the words with her splayed hand like a bowling ball hitting pins.
    Fiona's two hands splayed across a screen of icons.

    Fiona’s two hands splayed across a screen of icons.

    The little squares lit up and what followed was, as I’ve said before, some pretty weird found poetry. Because As Good And She She Go Call. For a long time, 99.9% of what she said seemed completely unintentional and random. I trusted that eventually this chaos would cohere into real communication.

  6. Or I did not trust. Some days I despaired. Some days I figured I was foolish, and my kid would always just randomly bat at the app, happily making it say all kinds of haphazard things, and I’d never know what was really going on inside her head. Please let this #16 stand in for the many instances in which I felt doubtful and despairing. These emotions periodically reared their heads like wack-a-moles, even up until last month, just before she really started taking off.
  7. As often as we could, my husband and I tried to respond appropriately to the words Fiona used, teaching her that they were powerful. If she hit “call,” we’d say, “Call? Who do you want to call?” One of us would grab a cell phone, readying to Facetime a relative. We’d pull up the “Family” page, and let Fiona choose someone.
  8. Here is one major misstep I made: Speak For Yourself has 120 icons (or cells) on the main screen. You can mask or unmask as many as you want. As a writer, a person who works with words, I initially unmasked pretty much ALL the words. How could I say no to “Weather?” How could I resist “Computer”? Give her all the words, Maureen had once said, and so I did.
  9. I had way too many words open. When I once shared this youtube video of me reading to Fiona, which I thought was really brilliant, the makers of the app gently suggested I pair down the number of open vocabulary. (Sweet Jesus! Look at all those words!) I needed to mask some words. I needed to give Fiona the chance to be more successful. So I scrutinized the vocabulary, and closed two-thirds of the icons/words on the main screen. I also closed as many of the secondary screens as I could, which meant that when Fiona hit a target, the app usually spoke the word immediately, rather than going to another layer of words. I left a few secondary screens open for very high preferences, like names of TV shows and food choices.
  10. This helped some, but Fiona still had a lot of trouble with the targets. She hit two or three at once, and rarely the one she meant.
  11. Within three and a half months of having the app, though, Fiona occasionally hit high preference words intentionally. Mostly she told me what TV show she wanted. Super Simple Songs was the first target my daughter obviously hit with intention, and it was glorious.
  12. To improve Fiona’s ability to access the targets, her OT and I tried two accommodations: a keyguard and a sock. Strangely, the keyguard (from LaseredPics) zapped all of Fiona’s interest in the talker. She wanted nothing to do with the talker once the keyguard appeared. I reasoned that an enthusiastic if wildly inaccurate Fiona was far better than a somewhat capable but mute Fiona. What good is language if she didn’t want it? We took the keyguard off.
  13. And the sock: We tried poking a hole through one of Fiona’s tiny socks, and we put it over her hand like a glove. We pulled her floppy little index finger through that hole, hoping she could use the isolated finger to hit the targets. I forget why this didn’t work. But it didn’t. (A mitten or glove would have had the same effect, but they don’t make them for Fiona’s then-newborn-sized hands.)
  14. In September, she started preschool. It was always our goal that Fiona start preschool with an AAC system in place, and we met that goal. She was off to school with a way of communicating, albeit still an experimental way. Her preschool is an integrated classroom, and her teacher, aid, and SLP all made great efforts to include the app in daily activities. They even created situations for other kids to use the app. For instance, during an activity where kids got to choose a color, they invited each kid to pick his or her color using Fiona’s talker. After seeing all of her peers choose a color on her talker, Fiona successfully chose her own.
  15. (Here’s where I’m going to stop and say: Fiona’s school has been integral in teaching her how to use the talker…. But… I don’t actually know everything they’ve been implementing. While we at home have primarily used two strategies—modeling and allowing Fiona to babble—her educators have tried out and succeeded with a number of other strategies. I’m meeting with her team soon, and afterwards, maybe I’ll write a “part 3,” focusing on classroom use.
  16. One technique I know about is their introduction of an occluder, which we started using at home too. It looks like this.
    A four-inch-wide square of black construction paper laminated laminated and taped to a popsicle stick, with a small square the size of an icon cut out in the center.

    A four-inch-wide square of black construction paper  laminated and taped to a popsicle stick, with a small square the size of an icon cut out in the center of the larger square. This is the occluder. It is highlighting the icon “Work” on Fiona’s talker.

    It enables Fiona to hit a target with guaranteed success.

    Close-up of the occluder, with the icon

    Close-up of the occluder, with the icon “Work” appearing through the open square.

    Close-up of Fiona's thumb hitting

    Close-up of Fiona’s thumb hitting “work” with the occluder surrounding the icon.

    When I took this picture, I was saying, “Where’s dad?” My husband was at work, and I’ve highlighted the word “Work” with the occluder. With the occluder, Fiona can have 100% success hitting “Work.” The occluder is great for teaching her new vocabulary in appropriate contexts. It helps her with muscle memory and motor planning.

  17. Her teachers continued opening up more and more words as they were appropriate for the classroom curriculum, and this is when I really got to see the awesome capabilities of Speak For Yourself. When her class worked with shapes, the words “Triangle,” “Square,” “Oval,” and “Circle” were unmasked on the talker. When the class started working with feelings, several feelings had been unmasked. Last week, two kids had a birthday, and the week before that, it was Easter. Fiona’s app now has access to both holidays. All of it–the shapes, the feelings, the holidays, and so much more– were already preprogrammed on the app, awaiting Fiona’s readiness. I loved it. And Fiona was using these new words appropriately at home.
  18. Gradually, Fiona used the talker with more and more intention. What this means is that, by March 2015, maybe 70% of her hits were still seemingly random, or even mis-hits, but maybe 30% were seemingly intentional. (I’m totally guessing on these stats, by the way. This was just my impression.)  So we continued to hear a lot of mind-boggling found poetry. (Also, even when the hits seemed unintentional, we tried to responded accordingly, attempting to show her the power and meaning of the words she used.)
  19. But all of that changed in the beginning of April, when Fiona’s school asked if we could try the keyguard again. I dug it up, slapped it on the iPad screen (with this amazing suction tape) and sent it to school. Since then, the keyguard has mostly remained on the iPad, and it has dramatically reduced Fiona’s mis-hits. She almost always hits the target she’s aiming for now.  She pokes her little thumb through the square holes, and hits her target.
    Fiona's thumb hitting

    Fiona’s thumb hitting “Banana.”

    Fiona with half a banana in hand.

    Fiona with half a banana in hand.

It’s taken two years, but in that time I’ve gone from “My kid probably can’t do that” to “My kid totally does that!” Fiona uses her talker to request, refuse, answer questions, and comment on the world around her. She still mostly uses one-word responses, but we’re starting to see some two- and three-word-combinations. And the more I research AAC implementation, the more I feel that our road is really just beginning.

But still. Hooray! She’s using her talker intentionally! Lots of people helped Fiona get here—her therapists and teachers, the glorious Internet, Maureen Nevers. But a significant propeller was the simple act of leaving my fear and doubt by the roadside. My fear and doubt were our first roadblocks.

I am in no way an expert, and I realize that there is no one-size-fits-all when it comes to AAC. But I do know my experience, and it seems that, as a parent, I had to be pretty active in searching out resources so that Fiona could have a shot at an authentic communication system. So let me take a minute to talk to parents in similar boats: Maybe you’ve got a nonverbal kid, and you don’t yet have a way of communicating with him or her. Maybe you’re thinking, as I did, “Well, my kid’s not like [insert successful AAC user here]. He/She has [insert other challenges here.]” Maybe you worry that there’s no communication system to suit the unique abilities and disabilities of your kid. Maybe you suspect that if you did embark on a road to communication, it would illustrate yet again how this world can’t accommodate your exceptional child. And maybe you can’t take any more heartbreak.

I get it. I so get it. If this is you, please know I was there too. What if she can’t?

But of course we all know the flipside to that question: What if she can? And we know we have to pursue the answer to that question with fierce and wild faith, despite what some people might tell us. I hope something in here helps you proceed on the journey that fits you and your child.

Tonight, after dinner, Fiona sat in her highchair and said “Want.”

“What do you want,” I asked.

A year ago, she would have made the “wanting scream,” which sounds just like a Chewbacca roar, and I would have had to guess. You want out? You want cheese? You want a TV show? No more TV shows!

“Fork,” she said tonight with her talker.

“You want a fork?!” I asked, surprised.

She nodded, and I got her one, and she started tapping her tray with it.

“Help,” she said on her talker. “Fork,” she said again.

She wanted us to help her fork the leftover Cheerios on her tray. I never would have guessed. I never would have known.

Fiona sitting with her talker, turning to face the camera and smiling.

Fiona sitting with her talker, turning to face the camera and smiling.

Advertisements

9 thoughts on “A Year with Speak For Yourself, Part 2

  1. Oh, wow!!!! This post is giving me goose bumps… You guys reached for the stars, and she delivered!! How brilliant is she?? You can see it in her eyes…
    I am sitting here, crying and grinning, and my heart bursting.
    Celebrating with you!
    I hope many more moms get encouraged by your post to do what you did for Fiona.

  2. Wonderful post, and I’m thrilled for you all! I feel envious also, to tell you the truth, as we worked for so many years on AAC and didn’t get very far. I still wonder, though, whether I should begin again —

    • Elizabeth, if you can stomach the whole “Another thing to do,” I say yes, give it a whirl. I think the world of AAC has changed dramatically in just 5 years, and it might be really empowering and exciting to meet with a legit AAC consultant who presumes competence, has genuine respect for people with intellectual disabilities, and believes they have a right to communicate. That’s been my experience at least. And there are so many types of AAC systems, as far as I can tell, and many ways to accommodate. We requested a visit from a group called “The I Team” up in Burlington. One AAC expert covered the entire state, so time with her was rare, but just 4 sessions has changed our lives.

  3. I was so moved and fascinated by your recent publication in The Sun that I felt inspired to check our your blog, especially as I wanted to see for myself Fiona’s wondrous gaze. Thank you for sharing your journey here as well as in The Sun. Your thoughts on language shaping thought have profound implications, especially for Fiona, who is earning you your own PhD in language and cognitive science. Bravo for your questioning the so-called experts!

    With much admiration and appreciation –
    Elissa

  4. Hi. I was posting about my son’s Speech Therapy Lesson yesterday and a friend posted this on my son’s community page on facebook. (Our Abram Mayhem). My son has a rare UBE2A Gene Mutation which is a syndromic form of x linked intellectual disability. Part of his diagnosis that we just learned of after years of fighting is an “absent speech” diagnosis. We are on our third and fourth SLP now and he’s 3 and a half. NO ONE has suggested anything like this. I cried reading it. (How are things going with it now? I’m going to have to dig around your blog more thoroughly!) I want this for my son, so badly. This gives me so much hope. The exact hope I needed today. Thank you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s