Wednesday, April 25, 2007

A Word is Worth A Thousand Pictures

As we continue to navigate the undulating and ever changing landscape of autism, we are delving deeper into the world of augmentative and alternative communication. Little Frog, now 4 years 9 months old remains non-verbal and has not come across any means of truly functional communication. As he continues to mature and his wants, needs, and ideas become more sophisticated, so does his frustration rise with his limited repertoire of words, signs, and gestures.

When Little Frog was 18 months old, he babbled up a storm. We heard lots of mamamamamamam, and dadadadadada, so we assumed, along with all of the professionals who worked with him that speech was right around the corner. He could and still does make every phoneme used in spoken English along with many that are heard only in other languages and cultures (including clicks and whistles). As he grew, we began to hear phrasing and intonation in his babble. At 29 months, he came down stairs and proclaimed triumphantly "Deedle, Deedle, DEE!" with an expectant look like we should all know exactly what he was talking about. As he continued to grow we heard words - clear, specific and appropriate that would come out of the blue and disappear just as quickly - Yellow, Let's go, OK, It's broken, baby, Goodbye. Then there were attempts at words that he would speak very softly under his breath as if he were afraid of what might or might not happen - cookie, water, mom, go, more.

We tried gestural communication which would work beautifully for something he really desired - another push on the swing, another ride in the wheel barrel. He would be so excited about the power of his new gesture he would quickly co-opt it so say everything. Soon we were led to the kitchen by the hand and presented with a quick "clap, clap" and an expectant look. When we would teach another gesture he would take to it just as readily then quickly stop using the first gesture in favor of the new one.

We tried diligently to establish PECS (Picture Exchange Communication System). I traveled to another state for a two day training, then volunteered in the classroom to get him going. He stalled out when he had to actually look at the pictures and pick the correct item. He could do it only in a formal trial setting where he was working with the same 3 to 5 pictures. I firmly believe that he does not "see" the pictures as representations of a specific object, but learned quickly in the trial setting that the bluest card got him chips, and the card with no color got him water, and the card with three things got him a toy, etc.

After our visit to the HANDLE Institute, he started saying parts of words - cu, or kie for cookie, wa, or atter for water, ack or ker for cracker, kie for blankie, mo for more. These were not consistent but they were more communicative than his previous speech attempts. He was diagnosed with verbal appraxia due to his motor planning problems and we started with PROMPT. He took to the physical manipulations and oral motor exercises used by his speech therapist right away and we began to hear some progress at speech therapy - But, still not much more at home. We decided that in addition to working on production of specific sounds, he needed more work in differentiation of his whole body. After a DIR conference last fall, I added ABLC (affect based language curriculum) to his home program. We have not seen a lot more spoken language, but he is doing better with other aspects of motor planing and auditory processing.

Our next attempt was Sign Language (ASL). As with the gestures, he could pick-up and use one or two signs effectively, but seemed to loose them when he learned a new sign. And he was quick to expand the meaning of various signs. At school they were hopeful that by applying verbal behavior and error less learning principals, they would be able to teach him to sign with a speed method. I was doubtful that an apraxic child with sever motor planning issues would benefit from speed anything. They were able to teach him one sign over the last 7 months.

In an attempt to test his desire and aptitude for a voice output system, I bought a GO-TALK 4. A relatively inexpensive device that allows you to pre-record up to 20 words or phrases on four buttons with 5 levels. It also has two buttons that remain constant no matter what level you are on. I recorded a lot of his favorite food choices, his biggest motivator, and placed the device next to him in the car. Being strapped into his car seat for a two hour ride, it took him less than five minutes to realize that I would become a human food dispenser if he pushed the buttons. When we got home, I hung the device in the kitchen. "Cookie, NO" he kept pushing. "You don't want a cookie?" we'd ask, "What do you want?". "Cookie, NO" he would push again. It was frog's Dad, who finally figured it out. "Oh, you don't have a cookie. Would you like a cookie?" "Yes" he pushed. Later, when he pushed cookie repeatedly, I gave him a girl scout shortbread cookie. He took it, looked at both sides of it, and put it on the counter. "Candy, Cookie" he pushed - "Candy cookie?" I asked. "Candy, Cookie" he pushed. After thinking a minute, I remembered that we got Diva Frog a box of All Abouts - short bread cookies with chocolate on the back. One afternoon, about a month after the device was placed in the kitchen, I was cleaning-out the refrigerator. I had already told Little Frog that he needed to stay out of the kitchen until I was done. He quietly strolled in and watched me for a minute. Then he went to his device and pressed "Candy". "No Candy" I said, "I'm busy and it is too close to dinner." "Candy" he pressed again. "No Candy" I said again. "Yes, Candy" he pressed. "No. Mommy said No Candy. Go play with Daddy." "Yes. Yes Candy." "NO CANDY!" I said yet again. I was frustrated and elated at the same time - this was our first verbal argument! The funniest part was the look on Daddy Frog's face when he came in to find out what was going on. This device requires you to record the words. I had done the recording myself - to daddy Frog, sitting in the living room, it sounded like I was arguing with myself!

As Little Frog approaches his fifth birthday and nears the end of the autism preschool, we know that functional communication is the number one goal for him. His speech therapist rented a sophisticated voice output communication device from Prentke Romich that he has been experimenting with over his last 5 appointments. Even with limited access, here is what he has told her:


Play More.

I want eat french fry.

I want eat chips.

I want to drink water.


Go Home!

I want to play with ball I.

(He entered this last sentence while they were playing with a ball together and she kept telling him "my turn" and snatching the ball from the air when he was dropping it from one of his hands above his head to his other hand down by his waist - he wanted to play by himself).

I downloaded a simulation of the device so I could learn how to use it. In a cheesy attempt to win my husband over and convince him this was not just another expensive tool that would end-up unused in the corner, I typed "I love my dad" and showed Little Frog how to click the mouse to make it play. When Frog's dad came in I helped Little Frog click. "I love my dad." "I love you too," said dad. Then to me Frog's dad said "yeah, but you put that in there not him." Little frog, in his own off handed, not looking, seems to be a coincidence but could it really be way - moved the mouse and clicked twice "I love my dad, maybe." said the device.

We've learned about our son's receptive language skills, frustrations and sense of humor with just a tease of these systems. I can't wait to find out what he will do with one of his own.


Mamaroo said...

That is so wonderful! I am so happy that Little Frog has a way of communicating with you. It sounds like a start to something that will take you all on a new adventure.

Frog's mom said...

Thanks for checking in Mamaroo! I've been gone so long I thought I'd fallen off everyones raidar. We are in the midst of trying to get the evaluation done and off to the insurance company. I've half a mind to just order the device and submit for reimbursment afterwards. My goal is to have a Prentke Romich Vantage by June so he has all summer to play and learn without too many demands.

rainbowmummy said...

Hi frog's mum. Love the manipulation of frogs dad, lol.

Son(still need a blog name for him)loves your fish, and fyi your page is apparently purple from some angles lol.

He has been up since 4, I was going to go to bed at 4:30, oh well lol!