Monday, August 12, 2013

"I need a new word"

To know that your child can not say the things that she wants to say is nearly indescribably painful. To watch your child develop more or less silently, watching and listening instead of jumping into conversation and interactions, (as you search frantically for solutions that-aren't-coming-fast-enough-I-mean-come-on-she-can't-say-anything-at-all) is a type of heartbreak that is sharp and and slow and steady . . .  not like having your heart smashed with a mallet, but more like having it dissected by a toothpick, one tiny scrape at a time. One tiny, tiny scrape at a time.

If I could give my voice to Maya, I would, in an instant. I'm sure any parent of a child with complex communication needs would do the same. Instead, we figure out systems and signs and devices. Maya's got her talker, along with a variety of nonverbal ways to get her point across and a spoken vocabulary of words and approximations that has undergone an impressive proliferation since the fall.

When we're home together, Maya uses her voice and the talker and gestures in a multimodal, nearly constant, communicative way, and we chat back (and model on the talker) . . . and while our communication isn't "typical" it is comfortable. It can almost feel like, when she draws on all of her various communication resources, she's not limited---like she has a wide enough menu of communication options that when she thinks of something she surely has at least one method that she could use to get her point across.

I would like to believe this is true. 

I tell myself that this is true.

This is not true.

She is limited, still. She thinks things that she can't communicate. We play guessing games and I think that we often are able to figure out what she is trying to say, but not always. 

A month ago I wrote on Facebook about an exchange in which Maya was trying to tell Dave & I something and we had no way of figuring out what she was trying to tell us. She couldn't show us, couldn't sign it, couldn't say it clearly enough that we understood, and then she pulled her talker close and turned it on she hit the button that said "I need a new word" . . . and yet we were powerless to add the word she wanted, since we had no clue what it was. 

(scrape . . . scrape . . . scrape)

This afternoon it happened again. Maya had just finished having a snack, and she turned to me and carefully said "Too wah." 

Me: "Too wah? What's 'too wah'?"
Maya: "Too wah. Too wah. TOO WAH."
Me: I don't understand. Can you tell me with your talker?
Maya: (pulls the talker over, turns it on, opens the keyboard and types "S")
Me: S? 
Maya: "Too wah." (typed "S" again)
Me: Does it start with an "S"? 
Maya: "Yeah."

At this point, I grab the video camera. Dave wasn't home and I was hoping that if I played this back for him later he might have an idea about "Too wah" that I was missing. 

This is what I recorded. This is what it is like.

She quit. She put her head down and she quit, because she could not will me to understand Too Wah. Children with complex communication needs (more commonly-but inaccurately-referred to as nonverbal children) often become passive communicators---they quit. Or, alternately, they rage and breakdown and tantrum. It's the third option---stick to it, don't get upset, stay determined---that is both difficult and essential to foster. I don't really know how to encourage it. I don't know what I would do in Maya's shoes. I think I would want to quit, too.

She gave up.

And then she changed her mind.

The first time we couldn't figure out her mystery word, she gave up. This time she gave up, but only for a few seconds and then she came back. And this time she tried to spell, too! The fact that she thought enough to figure out the first letter of Super Why, and gave it to me as a hint---well, that's pretty big. (That's also indicative of why I'm so obsessed with finding an academic placement for her that will have high expectations, like literacy now-not later.)

We added the button, to the cell that she pointed to initially. (When I opened the screen to add the button she pointed to that cell again, clearly telling me where she wanted the word to be.)

And then we watched Super Why, which everyone loved. Even Will. (The music in this one is pretty loud, so be careful of your volume before you play it)


Unknown said...

I hope you find the right placement, Maya is so smart and I know I would love to teach her! I live that you asked to where the button should go, both giving her the ownership and practicing her categorization skills.

Quilting in the South said...

Thank you for sharing your family's journey to help your daughter speak / communicate. I have been reading your blog for a month or two. I have a 14 year old low verbal severely autistic son. Thank you for sharing this story, brought tears to my eyes in a great way!

Anonymous said...

Oh, this is so familiar to me. Even after three years with his device, my son often struggles with making his needs known. In our case, it's not because I can't understand the word he's using but because he's using it as a sort of shorthand for something else. Decoding it is always a challenge. When it works, it feels like a million bucks! When it doesn't it's awful.

You and Maya are an incredible team. This story, the videos, made me cry this morning.

You are smart to push NOW for the literacy programs to be in place. We've been fighting for that same thing for three years now and are just barely making headway. It's frustrating.

Wishing you well. :-)

christina said...

this is incredible! i loved watching the videos and your daughter's joy when you finally figured out what she was saying. we will pray that communication starts coming easier for her. keep it up! (my daughter also struggles with expressive language so i get the heartbreak of it)

Anonymous said...

Oh gosh, yes, so frustrating and heartbreaking but YAY for Maya and her determination. You are so right about the high expectation for literacy. She's proven herself over and over. I hope this is an excellent academic year for Maya and that her teacher really listen to her.

joee_t said...

definitely push for a great literacy program. my son has mild cerebral palsy and still has trouble putting words together in his own sentences. yet two weeks into kindergarten he brought a photocopied book home from school and started slowly and painstakingly reading the sentences to me. sentences. i was stunned. Maya is lucky to have parents like you who can see her potential and be a great advocate for her. thanks for continually sharing her story.

Sophie's Trains said...

This post has hit so close. Watching Sophie struggle to communicate breaks my heart into pieces every day. I too would give her my voice in an instant if I could. She reminds me of Maya in ways too, in her determination and her cheerful demeneor. We want to start the assisted technology with her too, we're working with PECS right now to build her vocabulary. Your blog is very inspiring, I hope all the best for you and Maya.

Anonymous said...

You are so right to push for a placement that will make her literate. You have to remember that kids who combine Maya's high level of intelligence with a high level of interest in communicating are a minority of those using those devices. This means that the mindset of educators isn't always initially where it should be.

I have one idea for another word button. Maybe "TV Show." You could then discuss with Maya how she could if she wants a tv show that isn't yet in the talker, she can say that word, and then even the letter. You can model for her, even act out the whole thing. (You can pretend to be her. press tv show, say in your voice 'hmmm Maya wants a TV show, Oh "S" "Mayas so smart to tell me the letter it starts with." hmmm is it Sesame Street, "no" hmmm "Super Why?

Just an idea from someone who is NOT an expert in these things at all.

laurelsmom said...

This post is such a wonderful example of living with a child with complex communication needs. I like to call it the "never ending game of charades combined with 20 questions that nobody wanted to play in the first place". I find myself asking questions like you do. "what does it start with?" "person, place, or thing?" "sounds like?" on and on and on. I always have to remind myself that as exhausting as it is to be on the guessing end, it must be even harder on the other end. I identify so much with the tone of your voice in the videos. It's helpful (scrape) with an undercurrent of desperation (scrape) that I wish neither of us knew.

Kerith Stull said...

I feel your pain! That scrape, scrape, scrape..... Hate it.

My 17yo daughter with moderate cerebral palsy cannot speak (no hearing loss), so we use sign with her (she's pretty fluent, although sometimes lazy). I swear, at least once a day I struggle to figure out what she's signing, or trying to sign, to me. Even when she spells something out, it can get lost in the shuffle of poor spelling and not knowing the context for things.

Keep it up with Maya! So proud of all she's doing and LOVE that's she's spunky and asking for new words!

And hang in there, Mama. Scrapes heal, even though they are painful. :)

Sue said...

In retrospect, Too Wah = Super Why makes a lot of sense! :-)

Rebecca said...

Oh my gosh! What a heartwarming post! Way to go Maya!

And, way to go Mama for teaching her to be persistent! That is a personality trait that will take her far!

Monica said...

This is amazing! Good for Maya. I love that she knew exactly where the button needed to be to make it work for her and that she kept going until she had what she needed. She is amazing!

Marla said...

Oh wow, we have gone through *exactly* this, down to my kid pushing the "Icon Tutor" button (search) on her talker and then repeating herself over and over, then going to where the word might appear, then back to Icon Tutor... Sometimes I get it after a while and I'll add the new word or show her where to find the word she is seeking, but sometimes I don't, which is SO frustrating. Our kids have so much inside them! I am glad that this story had a positive resolution though - and I feel like as Maya gets older, she'll have the ability to tell you more and more with all the tools she has available. Great post!!!!

Micernice said...

She's amazing!! I am in awe of her persistence. I can't imagine how frustrating it must be, for both you and her...

Unknown said...

Thanks for sharing! Maya is wonderful.

I have a 10-year-old who is non-verbal w/ autism. He uses an iPad w/ Proloquo2Go. He can use it just fine and dandy. The issue we deal with it getting him to want to communicate.

One step at a time.

anne said...

Dana, you and Maya are such an incredible team. This post made me cry for the strength and incredible determination. It is so clear how much she trusts that you are fully with her in this struggle to find a way through this - and it is so clear that you will succeed together. Thanks for giving us such a close look at how you work through this. It's really inspirational. said...

Amazing moment to capture and share! So loved reading about it!

Cathy Ballou Mealey said...

I love everything about this post, even though it made me mist up a bit!

I remember when my son kept asking for something that sounded like "checkers" or "check us" and finally, finally, we realized he was saying "taxi." What relief!

Abstract Lucas said...

You know those posts you read and it's as if someone else has been inside your head?

Found you through love that Max, and will definitely be reading more! We've been there too, so many times - it's that look in my sons eyes, that 'this is too hard. You don't know what I mean. I give up'. It hurts so so much to see, doesn't it?

I'm glad you've found so many ways around the stumbling blocks, and I'm sure Maya will continue to surprise you!

Take care


Angela Santomero said...

How do I possibly begin to tell you how this post makes me feel?!

To create a children's program that touches the hearts and minds of incredibly special children like Maya..I am honored to have the opportunity to make such a connection.

So on behalf of Whyatt & the rest of the Super Readers, thank you for welcoming us into the lives of your children and keep up the INCREDIBLE parenting because you are all as inspiring as they come!!

Angela Santomero
creator: Super Why!, Blue's Clues & Daniel Tiger's Neighborhood

jeshyr said...

I read this in your post:

"Children with complex communication needs (more commonly-but inaccurately-referred to as nonverbal children) often become passive communicators---they quit. Or, alternately, they rage and breakdown and tantrum. It's the third option---stick to it, don't get upset, stay determined---that is both difficult and essential to foster. I don't really know how to encourage it. I don't know what I would do in Maya's shoes. I think I would want to quit, too."

... and as you can tell from the date, it's been banging around in my head for the past 10 days to reply to this paragraph. I'm finally here and have searched out this post so that I can say:

You DO know how to foster her communication resilience.

You foster it by assuming her competence. By assuming she has things worth communicating to you, and that she WILL be able to communicate them if you give her enough opportunities and methods and time.

You foster communication resilience every time you don't give up on her efforts to communicate. You communicate to her, by your own actions, that her communication is valid and valued.

You foster her resilience by following her lead about her preferences with communication, even when it means putting a button where she wants instead of where you want, or using a device that she's less accurate with but prefers to use.

You foster her communication resilience every second of every day, pretty much. Not perfectly because you're only human, but I've read every blog post you've ever written and you do a superlative job of advocating for her and listening to her.

(Also, OMG did you see Angela from Super Why left you a comment there?! Wow!)

Anonymous said...

I have a son with a "unique" diagnosis & rarely read blogs of others with special needs kids because our situation is so different. I found your blog looking for reviews of the Dynavox Maestro & couldn't believe the similarities between Maya & my son. Thanks for sharing your story! Also, this post reminded me of when my daughter was 2 & insisted she wanted the "lion tines!" We eventually realized she wanted "Little Einsteins"

Kate said...

You give me hope. And strength. All of it. My son is nonverbal at 3 and I am so scared. Your blog has given me hope. I have read it from start to finish. Thank you for sharing your feelings. I can relate to so many of them.