The Leap: AAC by 18 months, 3 years later

This post is a 3-years-later follow up to my blog post AAC by 18 Months.

Yesterday morning I received a message reminding me that (exactly) three years ago, I shared this status on Facebook. 

Three years ago yesterday was when I decided to lock our modeling/play iPad into guided access and give it to Will, so that he could have his own talker.

He was 17 months old. His speech at the time was on track as a 17 month old---he had a bunch of word approximations (I have them written down somewhere), he would label and request objects, and he wasn’t combining words yet (again, typical for 17 months).

On 2/22/2014 I gave him a talker because he really wanted one. Because it was hard to keep him away from Maya’s talker, and because I thought that introducing him to AAC would deepen their relationship and communication . . . and because AAC is an important part of our family culture.

I also gave it to him because, at that point, I had been running my big mouth online for a few years. I had been shouting into the void that people needed to “provide robust AAC early!” I had argued with parents and professionals in online groups, and confidently declared that “AAC will NOT impede speech development!” and that “When speech becomes easier to access, it will be used!”

And now I had Will, 17 months old, in the adorable early stages of developing his speech, and I was about to put a screen in front of him (a screen! the horror!) and let him use that to communicate.

Guys . . . I was really scared. Like, pit-of-my-stomach, what-if-I’m-about-to-really-mess-up-as-a-mom, it’s-all-well-and-good-to-insist-this-won’t-cause-problems-but-this-is-my-kid’s-future-speech-we’re-talking-about scared. I-can-already-hear-friends-and-family-judging-me-for-giving-my-toddler-a-talking-device scared.

I wish that all professionals could try on this type of fear. With Maya, who had no speech, I ran into the world of AAC with open arms, thirsty to learn and buy and implement and immerse.  Deciding to give AAC to Will, and struggling with the emotions that were a part of that decision, allowed me to understand what the process is like for parents of children who have some speech and are being told that they should add AAC into the communication mix. The fear of losing speech, or slowing speech development, is huge. Parents agonize over all sorts of parenting decisions (If I hide vegetables in brownies will my kids ever learn to eat non-hidden vegetables? Will TV time stifle creativity? Will tricking my children into thinking it’s bedtime 30 minutes earlier tonight lead to trust issues?) . . . and those ones don’t carry potential consequences that feel so big.

I am an AAC parent-advocate. I have read a ton of AAC research. I’m heavily involved in AAC networks.

I struggled.

But I gave it to him.

And 3 years later, I can tell you what has happened as a result of that decision.

• We were able to avoid many toddler tantrums related to not understanding our child’s early speech, because he could use AAC as a back-up, or as a way to give clues as to what he was thinking.

• Will’s speech milestones (2 word combinations, sentences, questions, etc.) all occurred either on time or early.

• He began speaking new word approximations after using those words on a talker (e.g., he may have found “blueberries” on the talker and used that button a lot for a few days, and then I’d hear him verbally producing a form of “blueberries”).

• Will and Maya connected in new, deep, amazing ways. For her, Will reinforced that using a talker is just something that people do. For himself, he got to be like his big sister, whom he adores. They giggled together. She taught him how to find new things. He showed her things he wanted to talk about. They still, to this day, make up games about finding words or saying silly sentences.

• As Will spoke more and words became more clear, he used those words on the talker less . . . just as I had said online (when speech is more easily accessible, it will be used).

• Will became an expert in communication repair. He is the most multi-modal 4 year old communicator I’ve ever seen. If he’s saying a word unclearly or can’t remember a word, he will act it out, give amazing clues, tell us words that it sounds like, etc. When he was 2-3 (and so much speech is somewhat unintelligible) he used the talker for communication repair in clever, fantastic ways.

• Will began reading at an age earlier than expected, which I believe is partially due to text exposure and keyboard use.

• He uses the talker now the way that a child might use a dictionary for spelling---he’ll ask me how to spell a word to write down, but if I’m not quick he’ll grab a talker. Or he’ll start typing in the search feature and then check out spellings of multiple words.

• His receptive and expressive language and vocabulary are very high (above 90^th percentile at last measurement).

It is unlikely, therefore, that early introduction of AAC had any negative impact on his speech or language development.

It’s been good. Enlightening. Endearing and surprising. Stunning, sometimes. Silly and fun and inspiring, in ways. Amazing.

But that leap . . . it’s tough.

Parents, if you are considering AAC for a nonverbal or minimally verbal little one, but holding back because you’re scared, take the leap. Your child deserves the words, in whatever way they can access them right now. The research says that AAC will not impede speech or language development---it will actually support speech and language development as it provides your child with a voice.

Professionals, the fear is real. Parents may not be holding back because AAC is tough to learn, or difficult to logistically manage, or cumbersome, or unfamiliar. They might be really scared of making the “wrong” choice for their child---they might worry that providing AAC to a little one may seem like an easier way to access words right now, at the cost of risking long term speech development. It’s your job to create a supportive, open environment in which these discussions can be had, to acknowledge these (very real) fears, to provide information and support, and to help these families connect with other AAC families (online or in person).

The struggle is real.

The risk feels real.

The leap is big.

The rewards are kind of limitless.

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#AACfamily

Why We Didn't Use AAC At All Yesterday

(a (hypothetical) letter from a parent to a therapist)*

Dear SLP,
We didn't use the talker at all yesterday. Not one little bit. I had plans to use it---no really, I did! I had a whole activity in mind! What happened, you ask? Life, homework, and life again.

To start with, things are busy here. I was only home with Maya for 90 minutes, and you might as well call that 45, once you subtract the home-from-school 20 mins (that's for putting coats and shoes away, reviewing items in backpack, fixing a snack, etc.) and the Mom's-about-to-leave 25 mins (that's for making and serving dinner, packing my bags for school, finding the papers that I've misplaced since the morning, etc). So 45 mins. During that time, today, we had to make Maya's "100 Days" poster for school.

Maya had already said she wanted to show 100 cotton balls, and I had cut out "jars" for the cotton balls. I thought about all of the ways that we could use the talker for that project. We could talk about how the glue feels, or counting. Grouping cotton balls, putting them in jars, moving them around, a top row of jars and a bottom row. We could talk about how the cotton balls feel, where cotton comes from, what things in our home are made of cotton. We could make piles of extra cotton balls, or little snowmen, or pretend that they are marshmallows that we could gobble up.

I was ready. I was invested. I was energized!

But Maya was tired. Turns out the Valentine's Day dance had wiped her out. There was much staring into space, and much resting her head on the table. Every group of ten that we counted took several re-starts, since she was kind of just moving her hands without looking and staring into the distance (and I wasn't going to do it for her, so we kept starting over). Modeling + helping to stay focused on counting cotton balls = challenging (maybe pointless?). And the counting was more important than the modeling.

And the glue. My word, the glue. Do you know what happens if you get a little glue on your fingers and then try to count cotton balls? They all stick to you. And to each other. And it's really hard to peel them off, because now they have glue on them and they just stick to your non-glued fingers (by the way, now your non-glued fingers have become glued fingers). There's no way to use a talker with gluey, cotton-ball covered fingers.

The poster was made. The talker wasn't used. But I sure invested a lot of thought ahead of time into all of the great stuff I would model while making the poster. Maybe next time.

Signed,

An AAC mom who's doing her best

*this is a true story, but not a true letter, because we don't have an SLP who assigns AAC homework or checks up on our home use (kind of wish we did!). It's provided to serve a little window into how sometimes a family "who didn't even use the talker at all after school yesterday" may have really tried their best, despite having nothing to show for it in the data log. AAC professionals, the best way for you to foster AAC carryover at home is to create an open dialogue in which families feel comfortable (and not judged) sharing their barriers to home use. Then you can help supply short, simple-to-implement ideas to help increase AAC use at home!

(image is Maya and Will sitting together before Maya's bus came this morning. She is holding her completed 100 days poster. Will is making a silly face because he was saying "look at this poster!"---but he liked this picture and told me to use this one)

Traction

As NYC looks ahead to a likely storm tonight (woohoo! snow!) I'm thinking about driving on ice. I didn't know the fun of driving on ice until college, when a friend had me drive to a (large, totally empty) parking lot and purposefully induce a slide. It was fun, and freeing, and there wasn't really anything for the driver (me) to do. We just slid.

In my AAC family, we've just been sliding.

Not doing anything.

Don't get me wrong, the talkers are here. We use them for writing, or for homework. We always bring at least one with us when we go out. When Maya tells me that we need to add a word, we add the word. And . . . that's about it.

Sliding.

Whee!

But sliding forever . . . it won't really get you where you're trying to go. It's fun. And maybe when it's snowing and icy you just need to take a break and let the slide take over for a bit. Eventually, though, if you don't lean forward and start driving again, you'll never get out of the parking lot.

And while I won't continue the analogy through the specifics of wheel turning and brake usage, I will offer this: to get out of a slide, you really need one thing: traction.

To get out of a metaphorical slide you need traction, too.

And so yesterday afternoon, in the space between getting the kids home from school and leaving for my night class, I made the first move toward gaining traction. I decided that I was going to model (which Maya has been somewhat resistant to) and that I needed a motivating, simple activity---one quick enough that I would still have time to make dinner and pack for school, yet motivating enough that the kids would have to attend to the talker, because how-could-they-not. Something that would give me the feeling that I had been successful---actively modeled, engaged the kids---while still being totally manageable (because there's only so much time between getting Maya off the bus and running out the door for my class). Just one activity. And a few purposeful minutes of modeling. A little traction.

Solution = secrets and cookies.

First, I told them verbally that I had a secret. (That's all it takes to get their rapt attention.)

Then, I got a talker. And I stopped speaking and started exclusively using a talker for communication. I said things like this:

• I got you something.
• It's hiding.
• You can't find it.
• I thought that maybe we could . . . (then I paused for dramatic effect, as they hopped and wiggled and said "what?! what?!")
• Go to sleep. Repeat whole sentence: I thought that maybe we could go to sleep. (giggles, shouts of "no!")
• I thought that maybe we could slice and bake. (long pause, they started to ask for more info)
• What could we slice and bake? (they are unsure)
• Could we bake a shoe? (No!)
• Could we bake a banana? (No!)
• What could we bake? (Maya said "cake")
• What else? ("Cookies")
• Yes!
• Maybe we could bake cookies (And there was much rejoicing)

(for the record: between each of my utterances I sat back away from the talker, so that if a child wanted to jump in and say something they could. No one did.)

And then, the talker was ignored as we washed hands, grabbed a bar of refrigerated cookie dough and child knives, and got to slicing.

Traction. Just a little bit.

Enough to start the pull out of the slide.

And cookies.

(image is a photo of the talker's screen, taken yesterday afternoon. The screen reads: Maybe we could bake cookies)