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.

Thursday, July 17, 2014

Summer of AAC or No More Speech in Speech Therapy

In early May of this year I had a realization; Elanor was not making progress in speech. At that point she had been in therapy with the county and a private therapy clinic for most of the last year, since she was about 18 months old. In that time she had made little to no progress in speech besides being able to make a few more consonants. Think "duh" and not "dog." Her vowel repertoire was sparse and her verbal word inventory was even sparser.

Although we already had the talker at that point, we weren't putting much of an emphasis on it. Instead, we were putting most of our eggs in the ASL basket. Elanor's signing ability was somewhat impressive. She could sign 2-3 word sentences and had a pretty good variety of signs. However, no one but my husband or I could ever tell what she was saying, not only because not everyone knows ASL, but also because her neurological disorder makes it hard for her to correctly plan movements. Even someone fluent in ASL would not always understand what she was saying, and she was unable to make signs for letters of the alphabet or numbers, although she was clearly interested in both. Bottom line, ASL wasn't the amazing saving grace I thought it was going to be. 

So the information I had at the time was: 

                    a. speech therapy isn't working
                    b. signing isn't good enough
                    c. we've got this communication device

So, we started putting an emphasis on the device, using some of the strategies found here to encourage her to use her talker. I also spoke to the county therapist about it. She was immediately on board and began using the talker exclusively in her sessions. As in, no eliciting speech at all. Only the talker. The idea at the time was that the county therapist would do that and they would keep using the regular approach in private so we would have all our bases covered. 

What we saw in those first two weeks was nothing short of amazing. She began to use her talker quickly and intelligently, but that wasn't all. She started talking. With her mouth. 

Here is a snippet of a post I made in the Speak for Yourself user's group at the beginning of June:                
   Her EI therapist has been solely working with her on her talker (no repeat after me or direct speech work at all) for the last 3 weeks and we have had an explosion. She makes a b sound now, but not to say "buh" but rather "ball" with the L at the end and everything. She says "all done" and "balloon" and "cat" and all kinds of crazy things.
This is a child who had never made a "b" sound before in her life. She'd gone to speech therapy twice a week where they had done nothing but tried to get her to make b and p sounds. Suddenly, with no pressure on her at all, this child was not only making "b" sounds, but whole "b" words. So I had an idea. What if there wasn't any more "repeat after me?" What if all we did was work on functional language? Maybe just for the summer? What if, for three months, all we do is AAC (alternative/augmentative communication)?

The very notion was crazy. The Childhood Apraxia of Speech group exclusively pushes two speech therapy methods: the PROMPT method, and the Kaufman method. Above all, they push repetition. Speaking the same words over and over and over again. We were completely turning away from the party line,  doing something I'd never heard of anyone doing before. Sure, the general scientific consensus was that AAC helps to increase verbal output, but no speaking in speech therapy? Unheard of.

I brought this idea to Elanor's private speech therapist. I asked if we could hold off on trying to get her to talk for awhile and just work on the talker. She seemed confused by this idea. "Well, by using the device," she said, "we are encouraging her to speak." Yeah, I know. I've won the jackpot on speech therapists here.

So the summer of AAC has been going on ever since. No speech in speech therapy. It's been a whirlwind of a summer so far. It's been 1.5 months since we stopped eliciting speech, and I have never heard her say more.

This was my non-verbal, speech-impaired child last night:

What's so amazing to me is that the things she says are the words she has on the talker. She makes the same kind of utterances out loud that she makes with her device. There is no doubt in my mind that she is speaking now as a result of our emphasis on the device. We are using AAC as our only therapy, and it is working better than anyone had hoped. 

Our summer of AAC will likely be extending into the fall (and the winter and the spring...) and I'm excited to see the changes it brings. 

Wednesday, July 16, 2014

An Introduction.

This is Elanor. 

She is 29 months old. She loves animals (dogs and cats and skunks and slugs and lizards) and Blue's Clues (mostly the ones with Steve) and Jello (sometimes green, always red, NEVER orange). She is also speech-impaired due to a neurological condition called Childhood Apraxia of Speech. Only a few weeks ago her expressive (spoken) speech tested at the level of an 11 month old infant. 

This is her talker. 

It's an iPad Mini with a special amplified case and a communication app called Speak for Yourself. This device is the reason I can tell you anything about what Elanor likes. Without it she might be able to grunt and point at the TV. She might make the ASL sign for "blue" to tell me she wants to watch Blues Clues. But with her talker she can tell me she wants to watch a Steve episode, or the one where Magenta gets glasses. She can not only tell me they've found a clue, but what the clue is. Then she can ask me for chocolate milk (please), and tell the dog to get down off the coffee table. Her device is her voice, and it vastly shortens the distance between Elanor and the typical toddler. She may be speech-impaired, but with her talker she is far from mute. 

Here is Elanor on a typical day. She has to say "please" just like anyone else.