Tuesday, August 22, 2006

Progress Report

Little frog had a little break this weekend as I went to a trade association convention and he stayed with grandma. He reportedly had a wonderful time - spent long days in his wading pool. He came home grumpy, aggressive and wound up. A quick swim in the big pool helped with his regulation. He was actually doing very well - climbing up the stairs, turning around and jumping into the pool on our count of "one, two, three, JUMP" or "on your mark, get set, GO" or "ready, steady, GO". He even got himself turned back around, frog paddled back to the stairs with no help and did it again and again.

Last night we got back on track with his HANDLE, Listening, DIR, and dietary supplement programs. I noted the following:

1. After three days without any refelxology, his feet were very tight and sensitive and we had to work up to our old routine. After two days of refelxology, he is back to his calmer state and seems more connected.

2. While listening to "The Listening Program," he turned on one of his musical toys. This is not uncommon - he likes to have three musical toys going at once each playing a different song. With the toy in one corner of the room and me on the other side of the room near the middle of the wall, I began to snap loudly with the beat of the toy's song. Little frog, standing in the middle of the wall opposite the toy, became very attentive. He stopped moving and looked first at the toy, then at me, then back at the toy. It was clear that he was hearing both sounds and distinguishing where the sounds were coming from. I don't know if this was new for him, or if it was my keeping time that he had just noticed. We are beginning to see little frog keep time to the music, changing with the meter and speed of the song.

3. He took an interest in the "3-D" glasses that came with one of Diva frogs DVD's. Judith wanted him to try them at his HANDLE evaluation, but in true little frog nature - If you want him to, he won't. Today, when I offered them to him he first ran away. Later, when I was able to approach from behind and very slowly lower them in front of him about 6 inches away from his face, he stopped. He grabbed the glasses and pulled them right over his eyes. He took them off and put them back on. He ran to the window and looked through the glasses at the back yard. He threw them on the floor and jumped up and down with his fingers in his ears. Now, every time he notices the glasses, he stops and looks throughout them for a few seconds then moves on. (I've spent a significant part of this afternoon researching Irlen Lenses).

4. He has been doing a lot of non-verbal communicating, but has not been using any signs or PECS cards. Today I went back to motoring him though the sign language - I, want, cookie, please. More, cookie, please. I, want, more, chip, please. He became completely passive about the signing, letting me puppet him - but as we were trying to form the more sign he said "mo" and as we were trying to form the cookie sign he said "kie" and as we were trying to form the chip sign he said "ip". He has done this before, but not so many word attempts in one interaction.

We don't know what intervention to chalk this up to - probably a combination of all of them along with little frog's determination. But it's progress - so we will take it!


Mom to Mr. Handsome said...

The language is great :o) He must have really wanted the cookie. Gabe is mostly motivated by food and praise. Give him a chip and he is yours for a minute or so.
Sounds like Little Frog is doing well. Yeah!
The reflexology sounds really interesting. How did you know that he would benefit from it?

Take care,

Mamaroo said...

Yeah Little Frog!!! That is wonderful how he used his words. Cookie was one of the first Roo would say.

Roo's school does Verbal Behavior. What I have learned with us, is to not worry about the "carrier phrases" like "I want" or manner type words like "please". When we first started to require more from Roo like "I want cookie", he got more frustrated and would shut down. With verbal behavior they don't teach "carrier phrases" until there is a large mand (request) repitoire. What I do with my kids that I work with is to find at least four really motivating toys or food items and concentrate on getting them to mand as much as possible. Once they learn the power of words to get what they want, the language seems to become more and more spontaneous.

I am almost finished Judy's book. I am reading it really slow because I am really trying to understand it all. Plus, I have been so tired at night and fall alseep soon after the boys. Anyway, I am very interested in what I am learning about the reflexology, face tapping and all. I have always done my sort of own version of a message and joint compressions with Roo. I plan on trying to take him to a HANDLE practitioner near us, but would love to fly out to Seattle to take him to Judy herself like you were able to.

Whatever intervention it is, I am so happy for Frogs words! Keep'em comin' Frog!!!

Frog's mom said...

Hi Kristin,

Food and priase are still little frog's biggest motivators too. He also likes deep pressure and tickles. The reflexology was part of the recommendations from Judith Bluestone at The HANDLE institute. We watched her touch one point on his big toe and saw the abhorant energy litterally drain from his body. I've since felt it drain from his body when I work on his feet - I feel a buzzing sensation in my finger and hands that moves through my body and sometimes stays in my legs, the back of my neck, and my face for hours afterwards. My husband is skeptical, but he likes me to work on his feet too. He has also noticed how the bottom of the foot changes with the pressure. You can actually feel small knots and tight muscles that relax and almost dissolve under your hand. Judith's take on little frog was there were a lot of energy issues going on. She warned us that this was going a little into the "woo, woo" arena, but I had seen enough "energy" related behavior in little frog to know she couldn't be completely off base. I've watched little frog try to get back to sleep, but not be able to contain himself or stay still for more than 15 seconds at a time. I've seen him "distracted" where he is actually bouncing off the walls, running from one thing to the next, unable to stop. And his issues with clothing, especially shoes, don't follow the normal patterns I've seen in other sensory issued kids - it is more like clostrophbia - a need to get out of the confines of the clothing - making me believe that he is searching for ways to ground himself and discharge the energy. Judith also felt he had issues with several different internal organs/systems that could be soothed by reflexology. Since little frog can not even indicate to me if he has a headache or a stomache ache, I can't tell if this is true or if it is helping, but he is calmer and better able to focus when we do the foot work.

Frog's mom said...

Hi Mamaroo,

We looked at verbal behavior, but it seemed a lot like ABA, which little frog really hates. Our floortime program and the Speech and Language program "More Than Words" from Hanen, make the same recommendations you suggested and that Jacob's Journy sited as RDI principals in the post "Non-Verbal Communication". We started with a lot of wooing (visuals and attractive non-word sounds)in level 1, we are now working at level 3 and 4 with an emphasis on praxis. When we work with sign, I try to add just one more sign to the interaction to continue the engagement and close more circles of communication. This, of course, is predicated on where little frog is functioning at that moment in time. When he stays with grandma - less is expected of him (as with any grandchild) and he doesn't have to work as hard to get what he wants - which makes grandma's magical in his eyes ;0) So when he gets home, we have to re-establish the expectations and start moving forward again. I also remember from my PECS training, that alternative communication forms should be more difficult and more taxing than speech - to encourage the kids to go for the "easy" way.

Judith's book is facinating. I tried the face tapping and skull tapping exercises from her book right after I read about them. We had some very dramatic results with lower anxiety levels and better focus (even following some one step directions). We were also using TAMO therapy (joint compressions) with little frog under the supervision of his OT. Judith suggested we teach him how to do the wheelbarrow walk or to walk his feet up the wall into a handstand so he could do his own joint compression with more control of how much and how long.

Mamaroo said...

Hi Frog's Mom,

I know the HANDLE program is not a one size fits all thing, but I have been attempting the face tapping with Roo and had some questions if I was doing it right. Am I suppose to do both sides of the face at the same time using both hands? How many times do I go over each area? I have been counting to five on each spot, but once over doesn't seem like enough. Am I making sense?

Roo has been very anxious lately. I have noticed that he is very sensitive to me touching his feet, where as before he would lay down and hold his feet up to me for me to message them. I really need to get him to a practitioner. I believe this all will really help relax him.

You can email on my site if you'd rather. Thanks.

Ian Parker said...

Hi Frog's Mom,

Hooray for Little Frog!

All progress is great, even if sometimes we scratch our heads and say "Where'd that come from?" My money is on the slow, steady, accumulation of multiple efforts and determination. The words sound great, as do the sound perception and the willingness to try the glasses.

The HANDLE program sounds more and more interesting. I've ordered Judith Bluestone's book too. My wife and I were talking it over, and at some point we might be interested in flying the Bear out to Seattle for a visit to the HANDLE Institute, since there is no one local here with full certification. There is a session not too too far away from here in November, which I'll try to attend to get more info so we can make a decision.

Just reading down the comments, I have the same questions as Mamaroo regarding the face tapping. If you're willing to share that info, I too would be happy to know the answers. You can reach me at the email on my blog if you're willing (please leave me a comment to let me know if you do this, as I rarely check that email).

Another technique is to post a comment to someone's blog and then delete it. They get an email with the comment, regardless of the delete (I think). I'll test it here now and you'll know if this works. If it does work, it is a way to send someone a confidential message without divulging your email address.



Ian Parker said...
This comment has been removed by a blog administrator.
Frog's mom said...

Hi Ian,

Mamaroo and I have been conversing off-blog. Here is the response I sent her regarding Face Tapping:

Hi Mamaroo,

The face tapping is done with both hands at the same time alternating taps on the left then the right. You want to tap once then move along the path described in the book. The tapping should be a tap, not a press. I spent some time tapping on my own face before I started working on little frog so I would get to know how hard I was tapping. If you tap your finger on a table top and hear a sound, you are doing it right. When you finish tapping on your face, it should tingle.

Tap right, then left, then right, then left moving your hands along the pathway. I only do one round a day with little frog unless he asks for more. You also need to watch for state changes (a change in breathing rate, redning of the ears, withdrawal, crying, fussing, dialation of the pupils, etc.). Stop the exercise if you see a state change, even if Roo seems to be enjoying the exercise. The speed should match the tempo of most kids songs. Pick your favorite. Because this is not little frog's favorite exercise, we pick a song that moves quickly. . . . . .

Ian, when you get Judith's book, there is a diagram on face tapping in the back. The pattern follows the path of the trigeminal nerve across the forhead, above the cheek bones, above the upper lip above the lower jaw, and behind the ears.

If you do decide to make the trip to Seattle, e-mail me and I'll give you all of our autism friendly finds in the area.

Ian Parker said...

Hi Frog's Mom,

Thanks for the replies. The Bear definitely has some issues, and grinds her teeth quite often and quite forcefully. While we don't like to stop most of her stimming - figuring that a) she is doing it out of need and b) it is useful as a communications tool - we worry that if we cannot find a replacement for this then she will destroy her teeth. Our OT has shown us everything she can think of, and nothing works for long.

Frog's mom said...

Little frog went through a teeth grinding phase (so did Diva frog). We didn't find anything very effective either. Eventually he just stopped. I only hear it occasionally now when he is sleeping.

Cecily said...

Hi from Australia.
I've been eavesdropping on your blog for a few days after I found it doing a search on Handle and Judith Bluestone. I've got a 3 year old with what I think will be diagnosed as ASD and a 7 year old super-bright, super-argumentative, super-sweet girl - just like your diva frog! Maybe that's a pattern...

I'm really interested to see that lots of your commenters are using More Than Words - we discovered that on the net as well and ordered the book. It has changed a lot of the way I was communicating with my boy, and seems to be having some results already.

But I'm looking into HANDLE and trying to decide if I'll spend the $$$ on something which isn't well known here in Australia.

There seems to be only one qualified practitioner, and she flies in from the UK every so often, so she's overseas for most of the year.

Personally I want to do it right away - I'm into all this wholistic whole body energy kind of stuff, but I've got to convince my husband that Aus $4000 is not going to be a waste of money.

Thanks for writing and keep it up!

Frog's mom said...

Hi Cecily,

Thanks for dropping by. My husband is a bit on the skeptical side too and prone to pessimisim. I, on the otherhand, am the eternal optimist - we drive each other nuts and keep each other balanced. He has been a great sport going along for the ride as I delved into GFCF diet, Child Psychology, DIR, PECS, More Than Words, The Listening Program, OT, PT, Speech Therapy, Glyconutrients, Pro-EFA, Pro-DHA, and now HANDLE.

I found HANDLE though Judith's book, The Fabric of Autism. I was excited by the book but proceeded slowly. First I tried the exercises outlined in the book and saw immediate, dramatic results - I didn't know if they were the direct result of the exercises, but I was interested. Next I went to see Judith speak - that was amazing too. I promised my husband it was the last new "intervention" I would try for awhile (although now I'm interested in Irlen Lenses). I don't know if he would have been up for it if it wasn't something we could do semi-locally. We now have two therapists, OT and HANDLE, we are seeing who are several hours from our home and sometimes require an overnight stay in Seattle.

It is certainly not cheap, but the $4,000.00 covers the 4.5 hour evaluation and feedback session and a follow-up session two days later, followed by monthly meetings with the therapist for the next five months. We are also able to e-mail or send video any time during the six month period when we have concerns or need direction. After six months of consultation, most people have gotten what they can from the program and don't continue to see the therapist except for new or unusual problems. If we keep all of our psychology appointments it runs us about $6,000.00 per year. My thought was that if the program improved little frog's ability to benefit from his current therapies, the one time investment made early in the intervention process makes sense. If he responded especially well, it might pay for itself by reducing the length of time he needs his current therapies.

My suggestion is try the exercises in the book and see if you get any results.

Good luck to you and your family.

Frog's mom

Cecily said...

Thanks a lot! I appreciate your time in responding and the ideas. I'll order Judith's book!

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