Thursday, November 29, 2007

Easing into ENKI

We've officially started School here at the pond. We are easing in - getting our feet wet so to speak. With the weather turning cold and wet, we have moved our morning movement work inside which is more of a challenge - Frog likes to have room to move. With encouragement from the program's architect, we've put away the more challenging stories and movements and are developing our own rhymes to help Frog work on strengthening his body map. I'm calling this period, ENKI Light. This week, taking a cue from a raspberry noise he was enjoying making, We worked on an Elephant Walk

Elephants walk heavy and slow
They raise up their trunks to greet people they know - (raspberry).

I modeled this with an elephant walk and a trunk (arm) raise, several times. The next day we did "hand over hand" (more like body over body) and did the exercise together. After a few rounds, he actually came back for more. I think we looked a little like baby Dumbo and his Mother. I'm hoping we will have a whole "Animals on Parade" routine eventually. (baby Dumbo and Mom statue available on e-bay. Auction closes Dec. 3)

I was also encouraged to imitate the rhymed verse accompaniment to ENKI stories with the stories we are using. This week it is "COOKIES" from Frog and Toad Toad Together


A batch of cookies Toad did bake so warm and chewy and sweet,
He put them in a giant bowl for Frog and Toad to eat.

Frog took a cookie, took a bite and said “These are the best!”
Then Frog and Toad continued eating cookies without rest.

“Stop” cried Frog “We have to Stop, I think we’ve had our fill.”
“If we do not stop eating now, I fear we may be ill.”

“One last cookie each my friend and then it’s time to stop.”
They each ate one, and then one more - they were both about to pop.

“We must stop eating” cried out Toad as a cookie he did munch,
“We need to find our will power and stop this cookie lunch”

We will try hard to stop this feast, we won’t another cookie eat.
We will not take another bite; we won’t eat cookies day and night.

We’ll put them in a box and we’ll put the box away.
But we could open up the box and eat them anyway.

We will try hard to stop this feast, we won’t another cookie eat.
We will not take another bite; we won’t eat cookies day and night.

We’ll tie a string around the box with a knot that’s tight and strong.
But we could cut the string with ease and eat cookies all night long.

We will try hard to stop this feast, we won’t another cookie eat.
We will not take another bite; we won’t eat cookies day and night.

We’ll tie the string and place the box upon the highest shelves.
But we could climb back up and get the cookies for ourselves.

We will try hard to stop this feast, we won’t another cookie eat.
We will not take another bite; we won’t eat cookies day and night.

Frog took the box of cookies to the yard and called the birds,
“We have cookies here to share come get them and they’re yours.”

“Birds came and took the cookies Toad, now we can’t go wrong!”
“I’m going, Frog, to bake a cake, I hope your will power’s strong.”

We are doing movements for several of the verbs, signs for "cookie" and "stop"; and emphasising words with a PU or UH sound (sounds we are working on in speech therapy with The Animated Alphabet). We are also baking and eating a lot of cookies! Frog is taking me to the pantry for cookie mix on a regular basis. Frog laughs when I say "A batch of cookies Toad did bake" while we make cookies. We also made spaghetti sauce (can't live on cookies alone). I wanted to make it ahead of time so I could put a quick lasagna together for Aaron's Team tomorrow - a home visit with all the therapists. Frog and I sampled some for lunch the day we put it together - Bolognaise Nuevo. I was able to put in onions, mushrooms, peppers and zucchini, as well as ground beef browned in large "meatball" chunks. It's nice that we have moved on from PBJ and Lunchables.

Our other breakthrough has been rediscovering TAMO

"handling always applies forces associated with independent movements; that is, the therapist does not support nor move the patient; instead, the patient plans and generates the movement in response to the therapist's 'loading', which accentuates appropriate gravitational influences. That loading force is almost always directed through the patient's body to the support surface. The exact direction of this loading force constantly changes with movement. However, the observer cannot see that. You should ask your child's therapist to apply that 'loading force' to you! TAMO handling feels good; it gives a sense of security (stabilizing to the support surface and moving from the support surface) and it allows you to move with ease. Careful, it's easy to get hooked on TAMO treatment! This type of handling requires a good knowledge of the relation between pressure distribution at the contact with the support surface and the associated body posture and movement."

We haven't had a lot of training in this, but our private OT showed us how to use loading force along the gravitational vector of his pelvis while he was playing to help him stay focused and feel grounded. We used it mostly to help him calm himself when he seemed to be loosing his proprioceptive sense. But after watching power struggles at school to "keep" him in his chair or at an activity and then watching him go through similar struggles at speech therapy I decided, instead of trying to not be too distracting during the appointments - maybe I could be a part of them. I sat behind his chair and applied the loading force - gently, dynamically(moves with him rather than restricting or supporting him), at a pace of 60 beats per minute. The difference left both the speech therapist and me speechless ourselves. He went from screaming, crying, trying to get out of the chair or away from the activity, to sitting in the chair for 20 minutes, lots of attention, some complaints - but not to the point he disengaged from the activity, attempts at specific sounds and use of his voice output system, looking at books, playing "new" games. When he finished the appointment and I stopped applying the pressure, he remained calm. He put on his coat, put away his Vantage with some guidance, and WALKED down the hall to the waiting room QUIETLY. My new dilemma is how to use the technique at home when its just the two of us. It will be a topic of discussion tomorrow!

We are on the right track - I can just feel it.

Friday, November 16, 2007

Update - IEP

Ok Maddy - this one is for you - thanks for sticking with me! :0)

After listening to Frog's teacher's concerns and mixed messages -8:30am "he's doing really well, I'm so pleased", 3:00pm "I'm really concerned, he's not progressing as I had hoped. I think it is sensory and I'm concerned his program is too scattered. I think we need an IEP meeting to discuss his behaviors, make sure we are all on the same page and not duplicating what you are doing at home." (...?!!!!??) I spent a day observing Frog at school. I've been in his class on a regular basis this year because I was walking him to school every morning. I noticed both kids (Frog and his classmate) did a lot of screaming, crying, and trying to get away, but I always got reports of "good day." I gave the benefit of the doubt that having an extra adult in the room made things more chaotic. That changed after I watched what was going on. Frog's teacher was especially concerned about his "behaviors" meaning he frequently bit his wrist and pinched the teacher or pulled her hair. I am familiar with this behavior. It has been going on for the last two years he has been in her class. At home the behavior has steadily decreased and I assumed that was also true at school. I knew the teacher responded by holding his hands firmly away from his body so he could not bite or pinch and turning her gaze away from him until he calmed down. The morning of her phone call, while I was in the room I watched one of these episodes. They were sitting at the snack table. Frog's wrist went to his mouth and he pinched the Teacher. She told him "NO!" and restrained his hands. He calmed, she let go, and he went after her again - 4 times in a row with the same response from the teacher. I stepped in and suggested that she direct him to his Vantage Voice Output device, help him select the emotions menu and encourage him to "tell" her how he was feeling rather than "show" her with a pinch. When I demonstrated, he chose "excited". The teacher was clearly not impressed - although the picture for "excited" looked a lot like Frog in that moment.

The following day, I checked his Vantage when he came home - not one single word had been accessed. I had encouraged the teacher to use the structured nature of the program to encourage him to use the Vantage. I had even modified activity lines and made pages to suit her lesson plans for him. But she left the device on the snack table where he could access it if he wanted to, but he was never encouraged or directed or shown that it was appropriate or acceptable to use in the classroom. We and several other families had gone through the same thing with PECS training in this classroom. One family got the district to bring Pyramid PECS trainers to town to train the staff and parents - I wasn't there, but heard that most of the staff were more concerned about where they were going to go out to lunch than learning the training techniques. PECS books were regularly left zipped up in backpacks or put away on high shelves until snack time when they were used as choice boards. I paid my own way to get the training in another state when it was offered, then went into the classroom (for 4 weeks) to get the training started. It never worked for Frog, but we got several other kids off the ground. It was apparent, however, that this particular teacher did not want to bring anything new into her program and assumed that communication was the SLP's job. I could see we were still on the same road with the Vantage.

The teacher began taking functional behavior data on Frog on a Thursday. I asked her to e-mail me the results. I was stunned - not only by the number of times he was biting and pinching, but by the fact that the only categories she could see for "perceived function" were avoidance and escape. I went into the classroom the next day and took my own data resulting in a 7 page write-up of observations.

I spent the weekend celebrating Diva's birthday, then got down to IEP business Sunday evening after the kids had gone down for the night. I finished at 3am and shot a copy of my observations and conclusions off to Frog's Psychologist and private SLP. Both confirmed that I was not crazy to be highly concerned and agreed that my plans for home school would serve him better. I e-mailed my seven page document to the IEP team 3 hours prior to the meeting. I copied the Principal and the Special Ed Director - who both hightailed it to the meeting along with the school psychologist invited by the teacher. My conclusions prepared them for what was coming:


While I did see many examples of the behaviors that were brought to my attention, they did not seem as dramatic or intrusive as the data would suggest. What I did notice was a lot of communication from Frog that while I would hope was not going un-noticed, was certainly not honored or even acknowledged. I also saw dominating behavior on the part of the adults. While I am certain it was done with Frog’s best interest at heart, it certainly would shake the trust and confidence of a small child whose world view is often confused and chaotic. I do not believe it is helpful, healthy or wise to take all of Frog’s control away. That in itself would cause enough anxiety to interfere with learning. (On a side note - I applaud the introduction of sensory calming and sensory input activities into the work of the general classroom. I would caution, however, these are tools not magic bullets. The wrong tool used at the wrong time or used excessively can make things worse not better. I got the feeling that Frog was to be squished on a regular basis whether he needed/wanted it or not. On one occasion, I saw a Para trying so hard to comply with Teacher's direction to make sure Frog got a good squish, she directed him to the mat and when he didn’t go, she brought him to the mat and made him lay down, and when he tried to crawl away, she pulled him back and squished him.) I saw examples of auditory and visual distractions interrupting Frog's motor planning leaving him floundering for what to do next preceding some of the incidence of these behaviors. And, some of the behaviors were perfectly typical fight or flight responses to unexpected or startling events. In any event, while I think they do interfere with his learning to a degree, to the extent they are communicative I don’t want to extinguish the behavior without substituting another way for him to say ‘NO! Stop that! I don’t want to do that!” He is vulnerable enough as it is. Extinguishing behaviors that are defiant, and seeking complete compliance and submission is too dangerous for him and will make it difficult for him to ever feel his has the right or ability to self advocate. Other 5 year olds (and 4, 3, 2, even 1 year olds) say NO all the time. It is ok and developmentally appropriate for him to be non compliant at times. Furthermore, extinguishing the behaviors without truly identifying their purpose and helping Frog find appropriate substitute behaviors may not give us the results we desire. He didn’t start biting his arm and pinching us until he was taught (at school) to cover his mouth with his hand when he started to scream. In my opinion, if the program he is in requires a level of compliance that does not allow him to say no – I need to put him a different program.

I cut the teacher off as she began to read her observations and concerns pointing out that these were not new behaviors and they were decreasing in an environment where he was listened to and validated. We had a long discussion about the differences between ABA and DIR which was educational for some of the staff members. Then I suggested that it was time to take a break from school and focus on communication. I got no argument from the team, and the Teacher, who started out defensive, seemed a little shocked and a little relieved. We all made nice and allowed everyone to save face. We planned a goodbye ritual for Frog complete with a photo memory book and a cupcake celebration. We told him that we were proud of how much he had grown and learned in Teacher's class and now he was ready to move on to adventure school with Mommy. We kept the IEP for now with a placement of "home school". That means we can still access the OT that we adore and the new SLP who we were so excited to work with at the begining of the year.

We have realized at home for a long time now, that
Frog learns faster and more naturally when he backs into an activity rather than trying to learn through direct instruction. I'm in the process of modifying the home school curriculum with the advice and guidance of the teacher who developed the program, to meet his specific learning style. She suggested that he may show strong resistance initially to anything he perceives as "instruction" and suggested we unschool for a little while. Today when we left our private SLP's office, the local para-transit bus was parked at the front door. Frog froze, panicked, sat down on the ground and looked at me with scared pleading eyes, vocalized distress, tensed his body and started rapid, shallow breathing. I talked him through it - "No, that is not your bus. We are going to get into our van and go home. The bus is going away and you are not going to ride the bus" He held it together, but could not move until the bus left. Riding the bus was always one of the highlights of the day. I see this as Frog's way of saying I like what we are doing and I don't want to go back to school. I feel the same way.

We did get school pictures back this week - and they are soooo good, I just have to share:

Sir Ken Robinson: Do schools kill creativity?

This is a link to a video clip I found both entertaining and thought provoking. I thought some of you might also find it interesting. It can take a few minutes to load, but I think it is worth the wait -

About this Talk

Sir Ken Robinson makes an entertaining (and profoundly moving) case for creating an education system that nurtures creativity, rather than undermining it. With ample anecdotes and witty asides, Robinson points out the many ways our schools fail to recognize -- much less cultivate -- the talents of many brilliant people. "We are educating people out of their creativity," Robinson says. The universality of his message is evidenced by its rampant popularity online. A typical review: "If you have not yet seen Sir Ken Robinson's TED talk, please stop whatever you're doing and watch it now."

  • Do Schools Kill Creativity?
  • Sunday, November 04, 2007


    I'll need everyone to send me strength tomorrow. We are finally fed up with Frog's pre-school teacher. She is a lovely lady with good intentions who's program works for some kids - but she does not take advice from ANYONE, and she has now called an emergency IEP modification meeting because, after telling us all year how well Frog is doing, she has determined that he is not progressing and his behaviors and sensory issues are to blame. I spent last Friday observing and it was not hard to see that if there is a problem it is with his inability to communicate in a way that she and her staff will acknowledge or honor. Frankly, if she treated me the way she treats him, in the name of progress and learning, I'd pinch her too! We plan to thank the team for their efforts and withdraw him from school. We've started an ENKI homeschool program and plan to continue with it. But, being one who does not like to ruffle feathers, I know that this will not be an easy meeting for me. My husband, on the other hand, who has not had as close contact with this teacher or the other team members would like to simply skip the meeting and sue someone for some of the behavior we've seen on the part of the school district. As an attorney - I don't think it is warranted or winnable, but as a parent, I understand his frustration.

    On a lighter note - here are some pictures of what the frog family has been up to in my absence: