Metrics

Interesting. Therapist Lady called back to tell me how much initial testing would be for Firstborn. I have a choice. I can have an initial AP test done for a somewhat nominal charge, then we can begin the AP therapy with one hour of telephone consulting. Or, I can have a more extensive test done with a full report written up and then proceed with the therapy for a bit more, or I can have the full blown testing with report, lots of time for phone support and a follow up to measure progress. They are beginning to take this very seriously. Too bad the schools don't. Therapist Lady feels that the schools would not take their report as a valid diagnosis and produce an IEP from it anyway, so we are going with the barebones testing. If we find that he has a large enough AP deficiency that the schools might acknowledge it, we will pay for a report.

Some of me really wants to have that report to rub in their faces, but I suspect that even if firstborn has a measurable AP issue, it will not show up in a test. He's very good at covering up and using his other talents to hide the problem. Unfortunately, that takes a lot of work on his part and he can't sustain it throughout the day. Thus the academic issue we are trying to sell to the school. Why they don't want to write up an IEP for classroom modifications when I'm not even looking for support services is beyond me.

April 20th 9:00 AM.

Progress?

Yesterday, Therapist lady from OTA called to begin our listening therapy process. She asked all sorts of questions about Firstborn's progress with sensory stuff. For the most part, he seems to be at the same spot with all aspects of SI as he was at the end of the summer. He took on ground with his ability to follow verbal directions in that he can now place his hands in various positions based on verbal directions, but the rest of his body is useless. He still can't do reading comprehension tests well when the teacher talks incessantly about the passage. He still has problems transitioning from something he likes to something he doesn't like. He still breaks into tears for things that he probably should be able to handle. He still gets confused with complex directions. He has learned that he doesn't listen as well as his peers though, and he is beginning to formulate a plan for taking responsibility for his own listening. This is major. Not only does this give him the right to ask for repetition, but it also gives him the understanding of why he needs to do this therapy and why he needs to work harder at listening than his peers. While they goof off in class, he has to pay attention.

So, next step is an baseline listening test that should probably cost us about 300-500 smackers. Eek. By waiting so long, we have introduced yet another expense. However, this expense might also help us get him classroom modifications in the public school, so maybe it's worth the money? Also by waiting, the Advanced Brain company has come out with a less expensive Listening Program that will cost us about 175 less than it did last summer.

Therapist Lady has been kind enough to clarify for me that the testing he went through is not auditory processing testing. That type of testing is not done by therapists. What she does is testing that provides a baseline prelistening so we can compare it to postlistening results. The Listening Test is a Tomatis based listening test... very different from an audiogram.

From my experience having Ken tested for Central Auditory Processing Disorder at Children's Hospital and from reading When the Brain Can't Hear, many of the tests that Therapist Lady did with Firstborn were very similar to the ones done for Central Auditory Processing testing. The CAPD testing however was done by an audiologist at children's and contained many more tests than the ones done by therapist Lady at OTA. Also, one would consider that the diagnosis that the audiologist would be able to glean from the testing would be somewhat different and maybe wider in scope. Therapist Lady was looking specifically at what these tests can tell her about Firstborn's progress using TLP. The audiologist would be looking at a wider array of tests that could tell her all sorts of things about how Firstborn's brain handles auditory information and how it would affect all areas of his life.

In the end, we were not able to get a diagnosis out of the CAPD testing because Firstborn was too young (1 month shy of 7 which is the cutoff for who they will test) and because his speech difficulties made him unintelligible by the audiologist and his sensory integration issues made it very difficult for him to handle having tubes in his ears (used instead of muffs for all of the auditory input).

This result created the catch 22 we are in. We can't get him CAPD testing because of speech problems but the school says his speech is just fine and he doesn't have SI issues but the school says that he has none and besides they would recognize DSI as a diagnosis alone anyway, and by the way, they won't recognize a auditory processing diagnosis unless it's from an audiologist anyway. But the audiologist can't get a test out of him because of the speech and SI issues that we can't remediate through the school because they don't exist. and on and on.

So our hopes are on TLP. And Therapist Lady has been wonderful about providing us with other options to see if we can get further support from the school or further diagnosis without breaking the bank because all of this stuff is very expensive.

So we will see where we end up and let you all know of the progress.

Intro

So, finally, I'm getting around to posting on this blog. Given that we have finally called and begun the process of getting firstborn into The Listening Program, it's only fitting that I begin marking the journey we are about to take.

Just some info on firstborn. He was born in the end of 1996. So at the time of this writing, he is 8 yrs old. His diagnosis was made in spring 2004. His diagnosis was Sensory Integration Dysfunction (defensive). Primarily, he just doesn't like the feel of things.

Note Added from Therapist Lady. Although there isn't yet a diagnosis for sensory integration problems, there is research currently being done to get one approved for a diagnosis code. It will be called Sensory Processing Disorder. Check on the websit of The Spiral Foundation (non-profit dedicated to research and education related to sensory processing disorders) at OTA Watertown www.spiralfoundation.org

Unlike most DSI patients though, firstborn did not like people to know he was different. So, he covered up most of his issue leaving Mom and Dad quite clueless as to what was going on.

The one area Firstborn couldn't cover up was in the auditory processing area. While Firstborn's vocabulary is quite advanced and once some speech issues were cleared up, his ability to follow verbal directions lags way behind his ability to follow both written and visual directions.

He has always been quite proficient at Legos, but he can't follow the simplest verbal directions at home or at school.

Staying up late can leave Firstborn in a really bad state. He has an even harder time following directions, cries easily and generally can't function in the world.

Another issue we have with Firstborn is volume. He has one. Loud! He has a hard time controlling his voice in different situations and he often makes noises while playing. He seems unconscious of the noise. It is almost as if he is self stimulating with noise.

Transitions can be hard for him if he is leavng something he likes to do. He will often have a really awful time at an outing because he had to leave some form of play that he liked and he is hyper-focusing on what he left instead of thinking about what he is involved with now. Likewise, hyperfocus can affect his experience if he is convinced that something will happen on an outing and it doesn't. Say, he thinks he is going to be able to play yu-gi-oh at a playdate and he never gets the chance to. He will just hyper-focus on yu-gi-oh instead of having a good time at what he is doing.

Physically, Firstborn seems to have good gross motor skills, but bad coordination. In fact, he is very coordinated. He has a hard time reconciling his sensory input and knowing what to do with it. For example, when running across a room with various mats of different density, he would fall because he didn't know how to react to the changes in density and therefore changes in cushion.

He often looks uncoordinated in Karate class unless a teacher can spend the time placing him in the correct positions. Once he has physically been shown how to do a move, he can reproduce it on his own with great skill.

So in this blog, we will talk about our experiences in The Listening Program and try to document little changes we see so that we can keep track of them. I do expect the changes to be so gradual that they will not be noticeable unless we document them this way.