Sunday, September 6, 2015

And then she could talk.

It happened just like that Fault in Our Stars quote my family loves to make fun of. Very slowly, and then all at once. 

I can't remember what she said first. I guess that sets me apart from other moms; I don't remember my child's first word. What I do remember is practice and practice and practice. Taking her to speech four or five times a week where she sat at a table way too big for her, where they said, "repeat after me," and at two years old, she did her best. 

Forcing myself to model her talker 15 minutes at a time. Typing out everything I could think of. TODAY-IS-TUESDAY. I-AM-WEAR-ING-PANTS. WE-GO-TO-TARGET.

I remember lining up her speech cards so she could jump over them, her making attempts at each one in a bouncing squeal. "Boo!" "Pie!" "Neigh!" I don't remember when, but one day the attempts were less like attempts and more like words. 

She would bring her talker to us and say I-WANT-BLUE and then point at the tv and say, say "Joe." 

And then words became longer words, became phrases. She had new speech cards. "Paddle boat!" "Apple pie!" 

Words became sentences. Her own sentences. 

"Where is Joe, Daddy?"

And then sentences were the norm. At some point her talker stopped being a talker and started being the little iPad. 

And now. "No, Daddy, it's not a tiger shark, it's a whale shark." 

"Mommy, can you move your soda so I can lay with you?"

Now she can talk, as if she always could, as if none of this ever happened. But of course all of it did. Months and years of work and worry led us to this place where she can turn to me and say, "I think we should have ice cream for dinner." 

She is an amazing intellect, a profoundly hard worker, and an unbelievable success story.

But right now she is just a 3-year-old who is up a little too late past her bedtime. 

Thursday, October 9, 2014

What AAC Does for My Verbal Child

Elanor has had her talker for over a year now. For the better part of that year she could hardly make sounds, let alone words. Things are very different now but one thing is the same, her talker still helps her communicate.

We were at the doctor's office waiting to get a flu shot. Elanor, in typical 2.5-year-old fashion, was all over the place. Climbing on the backs of chairs, running back and forth across the carpet, collecting smiles from everyone she saw. (She's a pretty cute kid.) She was talking, telling me things like "Mama, I'm gonna get a shot!" Or "look at my sticker!" Or, "I run, Mama!" Then, suddenly she just stopped.

There was a door on one side of the waiting room. It must have gone to a conference room or maybe even a closet. It was a door that neither of us had ever seen before. Elanor stopped and stared at that door, moving her mouth timidly, silently. She grunted. She pointed. No words came. She looked back at me, seemingly trapped in the moment, almost ready to cry.

I picked up her talker and carefully tapped out--"I see a door, Mama."

Relief. So much relief and happiness and she pointed and said, "Mama! Mama! I see a door, Mama!"

This is one of the things that AAC still does for Elanor. As is common with children who have apraxia of speech, words get caught between her brain and her mouth. The talker frees them. She can use it to free words for herself, as she did just yesterday. She stood in front of me impatiently grunting and gesturing for a full five minutes before going to her talker and hitting "bath." Then smiling, she told me, "I want a bath!" "Bath" is a word she knows, "bath" is a word she loves. She has said it a million times before but yesterday it just got lost. Her talker helped her to retrieve it.

The other thing that AAC can still give Elanor is clarity. While she speaks in amazing, beautiful, language-rich sentences, she is very often difficult to understand. This is largely because the mistakes she makes are inconsistent. While a child with age appropriate speech (or a different disorder) may always replace an "f" sound with a "d" sound, for instance, Elanor could replace an "f" sound with any number of other sounds at any time, maybe even with two different sounds in the same word. She might even replace a vowel sound, making things even more difficult. Once again, apraxia means her brain and her mouth just don't communicate properly.

Elanor can use the talker to clarify what she is saying in many different situations. First, she uses it to teach me "Elanor Language." If she says a word and then says that same word on her talker, she is making her approximation known to me. For instance, she might say "da-dit" and then hit "chocolate" on her talker. Oh, okay, "da-dit" means chocolate. Now I know that. No big games of charades, no tears. She can be her own translator.

She can use the talker to clarify what she is saying to a stranger. She did this just this weekend at Sunday School. "I like butterflies," she said (perfectly clearly to me), but her teacher didn't understand (probably because butterflies is actually "da-dies"). Anyway, she can go to her talker and say "butterfly" and there we go. Understanding. Clarity.

There are still words that she cannot get her mouth to say. Here, too, the talker is invaluable. Popsicles, for instance, are her favorite treats, but "popsicle" is just not a word she can get her mouth around. So she always asks for popsicles on her talker, and every time she asks she repeats after the device. Every time she repeats she says the word a little better. One day she will be able to ask without the talker and that day will be infinitely sooner because the talker is available to her now.

I've been asked many times in the last few weeks if Elanor still needs her talker and, if so, for how long. This is something I've wondered myself. Even Elanor seems to think along these lines sometimes, pushing away her talker in favor of trying to say something verbally just one more time.
Then we have one of those moments where the talker makes all the difference and we step back and say, "Oh, that's why we still need it. That's what it does for us." I don't think we'll be giving it up soon.

Wednesday, September 10, 2014

Letting go of "Normal"

We had our first Mommy and Me Ballet today. Much fun was had by all--well, mostly by Elanor. That girl loves her some dancing.

Somewhere between the "Stand Up Warm Up" song and the galloping across the room exercise I realized something. For the first time in a long time, Elanor displayed no trappings of her disability. I had left her talker and her orthotics in the other room with our shoes. She was just a normal two-year-old, and since the other kids in the class were on average 6 months younger, she fit in quite well. She even spoke about as well as they did, telling the teacher "gee" for the color of scarf she wanted. At some point she even said something that the instructor interpreted as "I like green mats" (although I think it was "I like to dance.")

Here she was, the "normal" child that I had always wanted, or at least expected. I reveled in it briefly, trying on how it would feel to have a typical child all the time. What would we do all day without the endless appointments? What insignificant things would I worry about? Would she sing the ABC'S at the top of her lungs? Would she expertly climb up the playground stairs and go down the slide?

But that ended as we got in the car and I put the talker in her lap. "Blue candy lollipop" she tapped out and laughed, pointing to the lollipop in her mouth. "More candy please." This is the normal Elanor, the whole Elanor. The one that can say anything she wants in any way she wants. She deserves to be the whole Elanor, not the shadow of the child I once expected her to be.

I've talked to a lot of parents who are worried about getting a diagnosis. Or once they have that, they're worried about going to speech therapy or getting an AAC device. I think they still have that vision of a "normal" child, and as long as their child continues to appear normal to others, they feel they can hang onto that. I understand that feeling, I absolutely do. But it's not fair to either of you. Withholding help from a child that needs it will not turn them into a typical child no matter how much you want it to. But you will be absolutely amazed at who your child becomes with the tools they need. I promise.

Sunday, September 7, 2014

Building the Foundation for Speech

A couple of weeks ago, Elanor (we?) had her/our first anniversary with the private speech therapist. I bought the therapist a card and some stickers for Elanor to decorate it with. Of course, by the time it came to decorating, the stickers were lost.

Elanor is not good at finding things. 9 times out of 10 if I ask her where something is she will point under the easy chair (where I have found exactly 0 things ever.) However, 1 out of every 10 times she really does know where the thing is. She points to it or goes and gets it and the thing and I are reunited and all is right with the world. It's the memory of these times that bring me to ask her again and again despite so many disappointments.

This particular time I did not have high hopes. I would not have stored expensive, enticing stickers at Elanor-level for obvious reasons. I asked anyway.

"Elanor, do you know where the flower stickers are?"

My speech-impaired little daughter opens her mouth and, with perfect clarity, says, "I don't know, Mama."

I immediately forgot all about the flower stickers. 


"I don't know. I don't know, Mama."

So calm. So matter-of-fact. She seemed to have no idea why I was surprised. 

This was the beginning of the Avalanche. The Summer of AAC had brought about trickles, so many marvelous trickles like "ball" and "orange" and "Daddy." With the Avalanche came "I don't know" and "the balloon went up" and "where did Steve go?" Her eating got better too, and in the last few weeks we have added chicken nuggets, sandwiches and unthickened water to her previously stark diet. It's as if suddenly everything is falling into place. 

Now, let's not get ahead of ourselves here. I still only understand about 10% of what she's saying, but boy is she saying a lot. She can repeat now too, at least more than she could before. Speech therapy isn't all about the talker anymore.

The Avalanche has me excited. It has a lot of people excited. Elanor saw a speech therapist last week who she hadn't seen in a while and when the session was over the therapist came up to me, beaming. "When did Elanor start talking?"

"Thursday," I said, without even a hint of sarcasm. It had been that quick, that concrete.

Along with the immense excitement of the Avalanche came this little bit of worry, this tiny, dark fear that everything I'd done over the last year was for nothing. What if this would have happened anyway? I'd heard of other children with apraxia having similar explosions, occasionally at the same age. What if I'd wasted a year of my toddler's life on appointments and therapy? I'd spent thousands of dollars. I'd spent hours and hours and hours on worrying, on researching, on modeling. If the Avalanche was destined to happen, what was the point?

I spent an embarrassingly long amount of time on this line of thought before finally coming to a realization this past week. We really can't know if the Avalanche would have happened anyway, but I can tell you for sure that this last year wasn't for nothing. Imagine a world where we had spent the last year waiting for Elanor to talk, no signing, no speech therapy, no specialists, and certainly no AAC. Can I really say that I lost a year to appointments when the alternative would have been to lose a year to silence?

Elanor spent the last year learning to communicate. She learned to get her partner's attention and to take turns. She learned language in the form of hundreds and hundreds and hundreds of words. She learned how to participate in speech therapy. She learned to be confident, and that what she had to say was important. We didn't push pause on her development in hopes of coming back later, when she was good enough. Instead, what Elanor and I have been doing for the last year is building her a foundation for speech, so that when the Avalanche happened she would be ready. How could I possibly regret that?

Wednesday, August 13, 2014

Why Sign Language Wasn't Good Enough

I come across a lot of parents of non-verbal or minimally verbal children now who are considering using Sign Language as their main form of AAC. I have a lot to tell these parents, more than I can tell them in a few sentences in a forum or a private message. I decided a blog post was the best place to talk about my personal experience with Sign Language, and why, after almost a year of signing, we decided to give it up for good. I hope that by telling you what Sign Language was to me, as a parent of a child with complex communication issues, I can help you to parse out what it will (or won't) be for you. 

At 16 months we brought Elanor to Early Intervention. She couldn't walk and she couldn't talk but somehow she still wasn't behind enough to get help. "You should try signing with her," they said, "teach her to sign 'more'." So I did, and I still consider that sweet little "more" sign to be her real first word. I remember sitting with her on the kitchen floor with a stack of teddy grahams asking "more cookie?" over and over again until I finally got my answer. It was an amazing moment for both of us, for which I am incredibly grateful. Who doesn't cherish their child's first word?

I am grateful to signing for other reasons, as well. It was through signing that Elanor first asked us to watch Blue’s Clues. Her first “dog” and “cat” signs hinted at her intense love for animals. I’m glad to have had an opportunity to have my 19 month old ask me very earnestly for cookies at 7 o’clock in the morning. I know not everyone is so lucky.

What we also gained from ASL was an early understanding of Elanor’s capability. Between 16 and 17 months Elanor picked up well over 100 signs. She showed me that she knew her colors and that she could make sentences. She could learn new words after only seeing them once in conversation. We learned that she was at least as capable of learning and communicating as an average neurotypical toddler. This knowledge is invaluable to the parent of a non-verbal child. Of course we are told to presume competence, but actually seeing that competence is what we long for more than anything. Signing gave us that.

There were many things that signing couldn’t give us, though. This became more obvious as time went on. Elanor still cannot count in ASL. She cannot tell you her ABC'S, although I know she knows them. She may try to tell you she "wants" something, but she is unable to make the sign for "want." A stranger wouldn't understand her sign for "horse," or "orange", or "eat." A stranger (who knew how to sign...a rare stranger indeed) would not understand almost anything she signs. Her difficulty in signing was one of the first, most obvious indications that she had a problem planning movements in places other than her mouth. Now this difficulty is more obvious and as I sit watching her struggle, and ultimately fail, to put on her socks I know that the nuanced movement required to sign fluently will likely never be possible for her. And yet this was hardly the biggest problem we faced when it came to Sign Language.

This may seem incredibly selfish, but I think as the parent of a special needs child I am entitled to be selfish sometimes. The biggest problem that I had with ASL was the pressure that it put on me.

As I said earlier, in the four weeks between 16 and 17 months Elanor learned over 100 signs.

Let's restate that.

In the four weeks between 16 and 17 months I taught Elanor over 100 signs.

Let's restate that one more time.

In the four weeks between 16 and 17 months I learned considerably more than 100 signs. 

I had to. I was her only source of words. It was an incredibly stressful time for me. Most of the almost one full year we relied on signing was incredibly stressful for me. To put it in perspective, let's say that your child, for whatever reason, cannot speak English. You are told that the only way they will ever be able to communicate is in Italian. Okay great, teach them Italian then! Go! Wait? You don't know Italian? Okay, here's a list of videos and books that you can use. No classes though. No one to teach your child directly. Nope, this is all on you. 

Let's take this Italian analogy even further. Okay, so now spend day and night learning Italian in order to teach it to your child. Your child has picked up quite a bit of Italian from you at this point (good for you!) and you're out in the world, in public, say at a restaurant. The waiter asks your child what they want to eat and they answer in, you guessed it, Italian. Now you have to translate, and you will always have to translate. Anywhere you go, always. So you find that what you've done is taught your child a way to communicate with you and only you, and really, doesn't that kind of suck for both of you? Yes, yes it does. 

The communication device is different though. It speaks English. I may have to spend time learning where the words are, but I already know all the grammar, and Elanor and I can find the words together. Her little fingers, although shaky, have created motor plans for these buttons and even if her movements aren't perfect, she can easily get her point across. I am confident that she could ask a stranger for a cookie if she had to, and that the stranger would understand her. The difference is night and day. 

I will always be grateful for the many things Elanor was able to tell me when sign was her only means of communication, but I imagine that if she had used her device all along she would have been able to say many more things, and to many more people. In the end, Sign Language was good, but it was not good enough. 

When you, as the parent of a non-verbal, hearing child, are looking for a communication solution I urge you to look beyond ASL and consider what else it out there. Ultimately, it will be easier on everyone. 

Sunday, July 27, 2014

Too Young to Communicate

In the speech therapist's office this week I met a woman with one of the cutest little girls I had ever seen. This little girl had blonde pig tails and bright-colored glasses and it wasn't long before she and Elanor were busy playing (near) each other. The mother and I started chatting and it turned out that the pig-tailed girl was almost exactly the same age as Elanor, literally only one day older. As I came to find out, this wasn't the only thing they had in common.

In the midst of our conversation, Elanor came up to tell me with her talker that the chalk she was drawing with my purple. "Oh," said the mother, "my daughter has a device too. It's a Touch Chat. It only has two buttons, but she's still not very good at it." I explained that we had also started with only a few buttons, almost a year before, when Elanor was 19 months old. Since then Elanor's vocabulary had grown with her. My new friend seemed confused.  She asked "But how did you get a device when she was that young? I wanted one for my daughter then but they said I was ridiculous."

 "Yeah," I said. "They told us that too. We just didn't listen."

When Elanor was 17 months old I knew she had apraxia. I knew it the way I knew her eyes were blue or her hair was brown or that she liked graham crackers. It was many more months before I was able to convince others of this fact (that's the subject for another post.) After seeing so many obvious signs, I had used my powers of Googling to look up videos on YouTube of apraxic children speaking, mostly to reassure myself that Elanor would eventually be able to talk. Along with many helpful videos of adorable children with imperfect speech, I ran across one video of a little boy using Proloquo2go to ask for a popsicle. What a miracle, I thought. Elanor needs that!

Neither our private nor our county speech therapists had brought up AAC to us before this point, and their responses to my inquiries were wildly different. The private therapist said that it was certainly something we could consider for the future. She suggested LAMP Words for Life (which uses motor planning principles, similar to Speak for Yourself) and said we could do a trial with it at some point. She stressed that a lot can change between 18 months and 2 years, and thought a device would be something we should consider getting after Elanor's second birthday. The county therapist's reaction was considerably more negative.

This was the same woman who, on our first meeting, told me that Elanor's speech was probably being held back because she had too many ASL signs. I wasn't expecting a good response from her on the AAC front, and I got exactly what I expected. "She's way too young for you to be thinking about that." she said. "She could start talking any day now. You shouldn't give up on speech." We switched to a new county therapist pretty soon after that.

We ended up trialing Words for Life with the private therapist. On her very first time ever seeing the app, after only two models, Elanor told the therapist she wanted the little toy car to "go." I watched her hit the button, smile, and say "guh." This child could not say "guh." She couldn't say "ma." She couldn't say anything. After hearing this story, all four of Elanor's grandparents surprised us when her first iPad with Speak for Yourself was delivered to our house.

Dear Elanor,
 Your Grandmas and your Grandaddy love you.  We all want you to Speak for Yourself.  You will be surprised by a package in the mail soon.  When you get it, call your YaYa and she will tell you the rest of the story.

With all our love,
Grammy and Bubbee

Here is little 19 month old Elanor seeing Speak for Yourself for the first time:

Obviously she was not too young for it.

Our therapists had different responses to my inquiry on AAC, one better than the other. However, I don't consider either response to be in Elanor's best interest. In a perfect world, a therapist would see an 18 month old Elanor with almost no sounds and absolutely no words and they would be the one to bring up AAC. They would stress her need to communicate immediately. After all, most 18 month olds can speak, and the fact that a lot changes between 18 months and two years is more reason to get a device, not less. A toddler's vocabulary increases exponentially during this time, and non-verbal children should be allowed to increase their vocabulary too.

I hope that Elanor's story will help some other parents learn not to listen when they are told their child is too young for a device. More than that I hope her story will convince some speech therapists to stop repeating this dangerous myth. After all, you're the experts, and what we as parents want more than anything is to be able to trust, to listen.

Tuesday, July 22, 2014

The Frustration of a Non-Verbal Child

Tantrums. "Challenging" and even violent behavior. Shutting down to the point of complete withdrawal. These behaviors are considered so common among non-verbal children that they have actually become expected. I can't tell you how many times I've seen a parent in a forum ask about behaviors like these and receive answers like "oh, it happens" or "once he learns to talk, it will get better." But what if he never learns to talk? And what if, right now, even though he cannot talk, he has things to say?

It's not hard to see that the frustration of a non-verbal child comes from a very human need to be heard, to have their thoughts and desires matter. Put a piece of tape over your own mouth and consider how long it would take for you to feel angry enough to throw something, or isolated enough to give up on interaction all together.

Lately I've been witnessing some of this frustration in my own home. Elanor has become much more verbal in the last couple of months, and as a result she now tries to communicate first verbally and then by other means (another nail in the coffin of AAC inhibiting speech). This has led to some frustration for both of us, since we want so badly to understand each other the first time.

One morning last week Elanor came to me and with a big smile on her face said, "boo-bah, Mommy." I didn't understand so I asked her to repeat it. "Boo-bah, Mommy!" I still didn't understand, so she repeated again, "BOO-bah, MOMMY!" Several more times she repeated this, until her little eyes started to fill with tears and I felt like the absolute worst mother in the world. I brought her into the living room where her communication device sat on the coffee table. "Why don't you tell me on your talker?" I said, and I pulled out the camera.

Look at the relief on that child's face. Don't you wish that every non-verbal child had access to that kind of relief? I dream of a world where they do.