Sunday, April 29, 2007


Just as I get back to my blog - I'm gone again. I promise I won't stay away so long this time. But when there is an opportunity for two frogs to bake on the beach sans tadpoles - well, you gotta jump at it!


Thursday, April 26, 2007

We Don't Call Her Diva for Nothing

Keeping up with the house work is always an issue around the pond. There is always laundry to wash, dry and fold; there are always dishes to be washed and put away; there is always something spilled that needs to be wiped up; there is always something to wash off of the windows and furniture; there is always something to vacuum; there is always clutter. Sometimes we just throw our hands up and say "what can we do". Little Frog gets blamed for a lot of the mess - primarily because he has three cardinal rules:

1. Flat surfaces must remain flat - the corollary being, anything that causes a flat surface not to be flat must be removed. Little Frog enforces this rule by "clearing" every table, counter, or desk by pushing the offending items to the floor.

2. Clothing may be worn for no more than three hours at a time (skin must breath). He learned quickly that in order to get some time sans clothing or at least get a new outfit, he needed to make a mess out of the one he is wearing. Also, we have never had to address "Will independently remove shoes, socks, shirt or pants" in an IEP.

3. All liquid must be freed. There can be no liquid contained in any cup, bowl, can, bottle, sink, tub, bucket, fountain, sensory table, toilet bowl, or other vessel of any kind. Little Frog must seek out and release all that he finds (and he does find it all). His coup de grace was when he decided that raw eggs also fall into this category and he "released" a dozen eggs from their shells in the dining room.

That being said, today as I cleared the floor in preparation for the daily vacuuming what I kept coming across were shoes. Not my shoes, not Daddy Frog's shoes, and not Little Frog's shoes:

Be reminded that I vacuum everyday - these are just the shoes from yesterday! We don't call her Diva for nothing!

What I did on my Spring Break

This year we had a goal, a mission if you will, for our Spring Break: Push the limits of experiential learning and keep everyone busy. I wanted to get an idea of what homeschooling might be like and how active and engaged I could keep Little Frog for full days on end.

I recruited Diva Frog, as I needed to make sure she was busy too. "What would you like to do over spring break?" I asked. "Learn French" she said. I have no idea where that came from, but - why not. We picked up an "I can read and speak French" book and some art supplies. We made a few phone calls to recruit some co-conspirators and off we went. On the agenda - Woodland Park Zoo in Seattle with NT friends; Climbing the Big Rocks at the Hook off of the harbor and beach combing; The Art Walk in the woods; Art at home with clay, glue and paints; Shopping for supplies and Planting a Salad Pot; Making Music with the piano, drums, harmonica, and Mom's violin; Water Play with colored water, stainless steel bowls and rocks to make them sing; Listening to and Learning some French; knitting; reading; and dancing.

Diva Frog and I started in on the French lessons right away. Because we are so close to the boarder, we can also get a few Canadian radio station that broadcast primarily in French - we soon discovered that they do not talk a lot about le singe, le cerf-volant or le chien (monkeys, kites or dogs) on the radio. It gave us a new appreciation for how frustrating language training must be for Little Frog.

On Monday we got into our art supplies. Diva and I had color blocked some canvases over the weekend. Here are the masterpieces:

"I am 4"

by Little Frog

painting in mixed media - Tempera on Acrylic (with some yogurt thrown in for good measure)

Circa 2007

Diva Frog's Creation:

"Blue Flower No. 1"

By Diva Frog

Painting in Acrylic

Circa 2007

Our Trip to the Zoo was wonderful even with extended car ride due to road work, missed ferry boats, and limited parking. The highlight was an up-close and personal experience Little Frog had with a peacock. Little Frog was in a stroller, eating (and dropping) goldfish crackers. The bird spotted the crackers and after realizing that Little Frog was not a threat - in fact didn't seem to be paying much attention at all, walked right up to the stroller to get a snack. Little Frog watched, but did not flinch or react in any way. The bird, being comfortable with this arraignment, stayed and ate crackers with Little Frog while everyone (except me of course) snapped pictures. When the crackers were gone, the bird turned on his heals to move on wafting his enormous tail feathers across Little Frog's face. Little Frog was a bit stunned but mostly he just enjoyed the sensation - no melt down. As the bird was leaving, a young NT boy was throwing crackers at it, trying to get it to come to him. The bird sensing too much attention picked-up speed in the other direction. The boy, not to be deterred, chased after the bird, trying to step on its tail feathers to make it stop. His mom chased after him saying "no, no, no" - it was a nice bit of role reversal for us! Diva Frog found a display on Thailand near the elephants and was thrilled to learn about spirit houses (having seen some at her favorite Thai restaurant and being unimpressed with mom's explanation). Little Frog loved the River Otter exhibit where you could look through the window and see both above the water and below the water at the same time. Over all it was a wonderful day.

Our trip to the beach was eye-opening. With Little Frog's water obsession, we are always wary about taking him near large bodies of water. On our last trip to the beach, he waded into the waves on a sunny but chilly March afternoon, fully clothed (in brand new shoes mind you) and stopped only when he was knocked down by a wave. Now wet from shoulders to toes, he stood back-up and hesitated a moment while he processed my pleas to come back to the beach. We were only planning on walking along the waterfront on the trail that day and being so close to home I did not have a change of clothes for him let alone myself should I have to go in after him. He took pity on me and came back on his own. For our spring break beach trip we choose a beach equally close to home, but on the far side of the protective hook that forms our harbor. We were right there with the bigger, wilder waves of the Straights of Juan DeFuca. I think he remembered how cold the water was last time and these waves made a lot more noise. This time he stayed at water's edge and ran up and down the beach, watching sea gulls and coast guard helicopters. He could make as much noise as he liked without being told to use his quiet voice. He found a variety of rocks and gravel of different grades and had a ball sorting and sifting. The entire beach is on the far side of giant rocks placed there to protect the hook from erosion. It was quite and adventure getting all three of us over the big rocks. But, once on the other side, there were no worries about Little Frog running away or into traffic. He enjoyed the freedom, I enjoyed the freedom, and Diva enjoyed having more of mom's attention as she and I searched for colorful rocks to put in Grandpa's rock polisher.

The Art Walk was another surprise. We have a small but well respected fine arts center in town. The exhibits change regularly, but it seemed a little soon to take Little Frog who would be much more impressed with the tonal quality and sound dynamics of the building when he was screaming in it, than the art on display. Frog's Dad happened to have the center's director on his radio talk show last month and I learned about the outdoor exhibit. The residence that became the art center sits on about 5 acres. A local savings and loan association funded a five acre art installation with an ever shifting and changing display along the trails through the woods. On our first visit, Little Frog was intrigued and wanted to touch, taste, and feel many of the pieces. About 15 minutes into our walk he had reached overload and we had to leave. That night Diva Frog asked if we could go back and see more. I asked if she wanted to go for several short visits with Little Frog, or go by herself with just mom or dad. She said she would rather go with Little Frog. We went back the next day and Little Frog stayed with us for the whole hour we spent wandering around the exhibits. He especially liked the bouncing rocks (large cobbles mounted on rebar that were cemented into the ground), the Temple Bells, and a musical bench he could sit on while he made sounds and feel the vibrations. Diva Frog enjoyed the thrill of discovering something new everywhere she looked.

Little Frog went shopping with us at a local nursery for our salad pot supplies. It was near the end of the day and he did really well. He didn't start with the loud screams until we were on our way to the car. He did pick out several varieties of lettuce for me. When we got home, he was too tired to plant. So Diva and I finished that project on our own. Little Frog has become our official waterer - carrying cup after cup of water from our fountain to our plants.

We all enjoyed the music and the dancing. The following week, Diva and I were back in Seattle with two of her friends to see an American Girl play. There was a drumming jam session going on out on the lawn beside the big fountain. The girls were really enjoying the music and the rhythm along with the big water show. The fountain is designed for playing in, but we didn't bring any extra clothes. I think that may be our next destination with Little Frog. At the end of the week he was worn out. But he also seems more eager to engage with us and frequently takes me to the car - I take that as "I want to go mom!"

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.