Friday, May 16, 2014

The Limitations of Sign Language for Children With Speech Delays

Once upon a time, when Maya was little (a few months old) we started signing with her. Not because she had special needs, but because many people use sign language with little kids, who are often able to produce expressive signs before they can produce the same words verbally. We waited months for her to start signing back, which she eventually did---much to our delight! She learned many signs in the months (all the way up until she was 2.5, I think) that followed, we used baby sign language dvds, I even made a "Maya Sign Language" video dictionary that I sent to her preschool teachers so that they would understand her. Signing was great, because without it we would have had no way for her to communicate with us and her teachers. 

I look at that paragraph now and all of the shortcomings of sign language jump out at me (it took months for her expressive signs to come, she only learned dozens-not hundreds-of signs, despite having expressive signs I still had to make a translation video for her school staff to understand her). And before I start discussing the limitations of sign language for kids with speech delays, I need to be clear about a few things. Here are my disclaimers: First, ASL (American Sign Language) is an absolutely beautiful, complete language. For families who are a part of the Deaf community, ASL makes complete sense. This article is completely irrelevant to that experience. Second, I think it is valid for children to learn sign language, and I think sign language can be a great component of communication. I'll get to where it fits in below. 

But children who are slow to develop language, who have "speech delays", who have "complex communication needs", who are "nonverbal", who have apraxia/dyspraxia/oral motor planning difficulties, who have CP or autism or genetic syndromes, children who will NOT be attending a school for the deaf or supported in the Deaf community----these children should not rely on sign language as an alternative method of communication. 

Here's why:

1. Most people don't understand sign language. Children need to be able to speak to EVERYONE they meet (well, if they want to). Grandparents, cousins, the guy who works at the deli that you go to on Thursdays, their bus driver, the secretary at their school, the kid that he just met at the playground who has Spider-Man on his shirt, the nurse in the doctor's office, the doctor, the grandparents of a friend at a birthday party, the lady in front of you in the Starbucks line who is asking about whether she likes the movie Frozen, the teacher, the substitute teacher, the gym teacher. These people do not all understand sign language. Which leads to . . . 

2. A child should not need to rely on a translator. (Even if that translator is you, and you are awesome.) Here's why: it forces them into the backseat of their own conversations. Imagine if you went out with your spouse (or best friend) and every time someone spoke to you, you signed and your partner had to speak back for you. You're one-step-removed. Kids who are struggling with language issues, who are learning the ebb and flow of conversation, need to be empowered with a way to speak up, to step in to conversation, to join. (Passivity is a big personality trait that develops among kids who have speech delays---they're used to other people speaking for them. As a side note, the other big trait is anger/tantrums because they have no other ways to get their points across, and behavior becomes their method of communicating.) On top of that, our kids (who often have multiple challenges) are already shadowed by their parents enough. I didn't want to have to be all up in every conversation that Maya ever has.

3. Fine motor issues lead to garbled signs. Maya does not have the dexterity to move her fingers in ways that would allow for the clean, clear formation of the vast majority of signs (hence the "Maya Sign Language" translation video---even people who speak fluent ASL wouldn't understand her signs). Teaching sign language to nonverbal children with fine motor issues as their primary means of communication is basically spending hours helping them learn a language that effectively no one (besides you and your child) speaks. It doesn't make sense.

4. I think that AAC is faster to learn than sign. (Please note the "I think", as this one is totally anecdotal.) I learned ASL alongside of Maya, and then I learned to be an AAC user alongside of Maya. AAC is, in our experience, much faster. I wondered if this was because Maya's motor challenges make it difficult for her to execute new movements, but then I realized that I'm able to learn words via AAC more quickly as well. Her app can hold over 13,000 words. I don't think I would be able to remember that many signs. 

Will (19 months) is learning to speak. He is also learning sign language. He is also learning AAC. This type of multimodal whole-language approach is, I believe, where ASL fits appropriately for children who have complex communication needs. It's great to have a child who has multiple ways of communicating, and there's no downside to teaching ASL in conjunction with using a more-universally-understood AAC device/app.  But, in my mind, the AAC is not optional. 

See for yourself:

The criticism: Here are the most common complaints that I hear from people when I share my thoughts on the limitations of signing:

1. Signing is better because kids always have their hands with them, you don't need a cumbersome binder of cards or an iPad. And what about places like the bathtub where a kid can't have an iPad anyway? Maya's iPad mini isn't cumbersome, and there are several option now (like a waterproof electronics camping bag) that would make it fully submersible in a bathtub. But that's totally beside the point, because signing is great for you to use with your kid----as long as you're also providing them with a way to communicate with the non-signing population.

2. My child loves sign language and has learned over 200 signs! That's so great! But most 3 year olds already speak over 200 words, and by age 4 we're well into the thousands. That's a lot more than 200. Keep signing but make sure there is another way for her to express the thousands of words that she likely understands but does not know how to sign.

3. It's his choice to use sign language. I'm certainly not going to argue with the choice of a child who has communication challenges. Obviously, how he communicates will be his choice. But (in my humble opinion) he needs consistent exposure to multiple modes of communication. My kid is going through a cartoon phase and has gained buttons in her device for nearly 100 characters in the past few weeks----it's all that she talks about, to anyone who listens. She would never be able to learn and imitate this many signs this quickly, and no one that she spoke to would know the obscure signs for "Jiminy Cricket" or "Handy Manny" or whatever. I think that multiple modes should be taught and encouraged, and the child can use a combination of them to get their points across to a diverse field of communication partners.

Our kids with complex communication needs need the same early access to AAC that many of them have to sign language. Sign language is a great component of multimodal communication, but without an AAC option that can be universally understood we are limiting their ability to independently interact with peers, family, friends, and professionals.

Wednesday, May 7, 2014

She wants to name names

This isn't actually a blog post (she said at the start of what is clearly, literally, a blog post) it's a request for help. SLPs/AAC people/AAC parents/Special ed folks/Smart creative people, I need input.

Maya has become very fixated on characters. Any characters. All characters. Any cartoon character that she sees, she immediately asks what it's name is, and demands that we add a button to mini (the talker) with that character's image and name. This is tricky, for a few reasons. On one hand, if she wants a button that says "Mario" (from Super Mario Brothers, which she saw in a birthday party catalog),  then she should get one and be able to say it. (This is the generally right answer, and what I feel like is correct when I think about AAC use and AAC users---if they're asking for a way to say something, they should get it.) On the flip side, what we are seeing (after weeks of this behavior, and the addition of many, many cartoon characters) is that she's kind of a name hoarder. She is combing through books and catalogs searching for minor characters in shows that she doesn't watch (eg: someone named Isa from Dora?), getting a new button for that character, and then never using it again. Like, ever. She seems to just be collecting the names.

This is a screenshot of one of the pages in her talker that contains characters.

There are a few issues here.

First, the reason that this is becoming so frustrating to me is because more than 50% of Maya's conversations at home now involve her calling our attention to a catalog or book, asking "who's that/what's that?" and then excitedly saying "Mini please!!!" (translation: make a new button for this right now!). If we make the button, she is extremely excited for about 7 seconds, then moves on to find a new character. It's exhausting. It's frustrating. I want to talk about other things. I don't even mind talking about the characters all day, honestly, if we did more than just name them. Which leads me to  . . .

Second, I have tried to think creatively, to redirect, to extend, to use these characters (which are obviously a huge motivator for her) as a jumping off point for other dialogue (spoken and via AAC) and she's not biting. I've tried saying "I don't know his name (because really, sometimes I don't) but let's talk about him! We could say that he is red, that he has a purple hat, that he looks like he feels happy, etc etc" and she just either pushes for a name (directing me to look it up online) or moves onto to someone else, in the hopes that I'll know the next character's name.

Third, and this is of substantially less importance to me, but I'll put it out there anyway as I think that it's a common concern for AAC parents: for an AAC user, vocabulary takes up physical real estate. I would rather not fill so much of her talker with minor movie and tv characters that we will likely never encounter again . . . but that's not really my choice, as I see it. Luckily, the app that we use (Speak for Yourself) has a lot of fillable space, and I imagine that if that space was ever filling it would be past the years of wanting all of Dora's friends to have buttons. I will admit to redirecting her when she's going page-by-page through a toy catalog and asking for each character, line by line, but if it comes up more than once it's hard for me to say no. (And I did attend a training once where participants were encouraged to help AAC users to think creatively to build words rather than adding large numbers of specific buttons, like "mad-gas-car" for Madagascar, but I think that's kind of disrespectful and would be really angry if, as a user, that's what I was expected to do. I won't do that to her.) I could make a low tech character board (a laminated sheet of paper---or multiple sheets) with tons of character pictures and names, but I'm fairly certain that she will just bring me the low tech board and the talker and direct me to add all of the names in, which puts me kind of back in the same spot.

So here are the two core questions:

1. How can I redirect her from spending so much time asking me to add character names? The best I can figure is to limit her access to magazines (like a certain amount of time per day) or limit her characters-per-day (like, we can add three new people tonight, but that's all).

2. How can I use this character love to drive vocabulary building? She still primarily uses her talker for communication via single words and some phrases, and I would love to use these characters to come up with some fun activities that will really get us using more core words, more verbs, more adjectives, more everything. The problem is that I'm lacking the specifics---which verbs/adjectives/question words would be best to target, how could I set up a few games or activities to target this? It's easy enough for me to make some laminated characters (printed, cut out, laminated) or character bingo sheets or  . . . anything.

I've got half-thought-out ideas for games where she has a character line-up and I model things like "She is wearing a dress. She is tall. She has green eyes." and then Maya picks the character----but then I wonder if that's too many different verb forms and whether there's something more simple and repetitive to start with, but I can't come up with it. Then I think about hiding characters around the apartment and modeling "Where is Mario? He is in the kitchen.  He is in a cabinet. Open the door!" etc and have the same questions about vocabulary

I'll make anything. But I'm overwhelmed at where to start, and rather than spend a few hours trying to sort this out on my own, I'm asking for ideas first. This is why one takes the time to build a network of amazing people, right?

I appreciate any and all input on this. Thanks from Maya, Belle, Lightning McQueen, Mike Wazowski, Dora, Spiderman, Abby Cadabby, Curious George, Maisy, Batman . . . and friends.

Thursday, May 1, 2014

The Ghost of Playgrounds Past

The winter is ending, and the advent of spring has released dozens of toddler-and-caretaker pairs from their apartments and out to the playgrounds in our neighborhood. Will and I are one such duo, eager to get outside and play after a few dreary months spent indoors. Last year he was too small to really do much at the playground, and I had been looking forward to this season with him---big enough to run, steady enough to slide, mornings filled with fresh air and sunshine.

I knew that at the playground, I would be a first time mom again. Even now, Maya lacks the agility and balance, the self-protective reflexes and coordination, to explore freely at a playground.  I knew that Will’s playground abilities would develop rapidly, that his coordination and capabilities would be surprising. I knew it would be different, and I looked forward to that difference.

The playground was a loaded place for me and toddler Maya. It was bittersweet to the fullest possible extent of that word. The sweetness of doing something “normal”—not at the doctor, not at a therapy appointment, not doing exercises or assessments, just a mom and her little girl at the playground. But the bitterness (oh, the bitterness) of being different- leaving the safe bubble of home behind and seeing what other two year olds could do, could say, could eat, could . . . everything. They could everything. We sat on the equipment and watched kids race around us. She crawled, then walked with a walker, then walked with my catching hands nearby, and I was a focused assistant. She needed me so much. Will is already independent, running away, bidding me to watch and follow but shunning my help. So I watch and chase and play and smile and feel like I’m getting off so, so easy.

I didn’t anticipate that returning to the playground with a new toddler would trigger a visceral response---that type of physical memory that gets stored somewhere so deep that it’s beyond thought and ingrained on some sort of deeper, fundamental level. The way that revisiting the empty halls of your high school as an adult calls forward anxiety or wistfulness or nausea, or driving down the street that you grew up on kicks up the emotions of childhood. It’s not remembering, it’s re-feeling.

The moment I open the gate to the playground and push the stroller in the re-feelings start to rise, a familiar swirly tide of anxiety, determination, self-awareness, pride, sadness, protectiveness, bitterness, all pulling at my ankles. And then I look down at Will in the stroller, already trying to free himself from the straps and yelling “Uppy! Uppy! Uppy!” and I remember that I don’t need any of those feelings this morning. My feet are solidly on dry land, but the phantom tide feels strong enough to bring me to my knees.

I watch him play.  I’m on my knees.

I watch him climb and run. I wonder what the balance is between promoting independence and being neglectful, since Maya always needed me at her side, less than an arm’s length away. I side-eye the other parents, gauging the appropriate hovering distance.

I talk about typical kid things with typical kid parents. I’m an impostor, surely they can see that I don’t fit in.

I am amazed by his abilities, the way he moves and interacts. I narrowly resist the urge to look around and call to the other parents “Did you see that?! He did the slide like it was nothing! And look at your kid, climbing the stairs without your help! This is amazing! Are you soaking it in? Are you noticing? Are you waiting for the other shoe to drop?”

Because doesn’t this feel too good to last? Too easy?

Is this really how life is for most parents?

Do you people know how easy this is?

How lucky you are?

I mean, how lucky we are.

Where is the self-consciousness of having a toddler who doesn’t toddle? It’s over there by the swings, I think, where we would swing and swing and then sit in the shady patch with chalk and then . . . well, I guess we’ll just swing again. Where is the anxiety over rushing home and making it to the next therapy appointment? It’s right here, in the perpetual checking of my watch, in the way that I keep stopping myself from saying “2 more minutes” when I remember that really, we have the whole morning. Where is the awkwardness of avoiding small talk with other parents, talk of ages and milestones, favorite toys and favorite games, all seeming other-worldly? It’s there, by the park benches, where I used to feed her jars of baby food and try, so hard, not to overhear the conversations of the other caregivers. And it’s here, in the way that, without thinking, I avoid eye contact so as to not accidentally stumble into a conversation. Where is the angst, the sadness or frustration or this-isn’t-fair-ness that I would push down but remember later, in the dark, when I couldn’t fall asleep and couldn’t block it out any longer? It’s here, right here.

Oh, it’s here.

And I don’t know what to do with it.

Oddly, it hurts more now than it did then. Back then I was sincerely happy to take Maya out to the playground, and I was good at focusing on the positives and enjoying our time together. But now I see what it is like to be the mom I would have been, and I’m realizing that the playground experience that I had a few years ago was a shadow of the experience that I’m having now. And it hurts. I have pity for my mom-of-toddler-Maya self, and I have hatred for having self-pity. I have sadness that our experiences together were more difficult, more lonely, more stressful than my time with Will is going to be, and I have guilt over that sadness. I have happiness that I get to be the mom that I would have been, and I have sadness that Maya doesn’t get a re-do, that her one shot through those years is done, that she had her toddlerhood and it will be very different than her brother’s.

I thought this restart would be refreshing. It would be a chance to do motherhood in the normal way, to blend in, to not be set apart. But now, given the opportunity to blend, it feels like fraud. I find myself wishing that I had battle scars, visible and raw, something that would let people know that the my parenting path has not been theirs, it’s been thorny and rocky. A scar that is jagged, and fresh, but only occasionally slightly visible, peeking out from the neckline of my shirt when I move in certain ways. A scar that makes my outside match my inside, that relieves the feelings of fraud by giving a heads-up to the other playground patrons that though I am here having fun, not talking about my scar, I am nursing a wound. That I am sore, that it’s still a little raw, and that I’ve gone through something.

I’m going through something.

This is going to be painful, this business of reliving motherhood.

But I think that it’s also going to heal me, in some small dark places that I didn’t realize were in need of healing.

If you related to this, you might also relate to this (which is my favorite blog post, ever) and this (other playground reflections)