These progress reports are as enlightening as the IEPs themselves. Our next IEP meeting is the end of the month. Here are some direct quotes from the report just received.
(And note the new poll of the day on the right.)
On March 11, 2010, In Communication, School
On March 4, 2010, In Communication
I swear, I have not taken any of my meds tonight, none.
On December 3, 2009, In Communication, School
I just got Pearlsky’s Progress Report from school. Well, thank God, it is about time for some progress. Actually, it should be called the Not Progress Report …
Measurable Annual Goal: Pearlsky will use a variety of communication techniques to request activities, objects or to initiate interactions with peers and adults.
How well we know that the student reached this goal?
We will know that she has reached this goal when her intentions are known to communication partners.
That is really what it says. Does this sound a bit like Facilitated Communication (as lambasted discussed here)? It is obvious that no one takes my goal of making her normal seriously.
Measurable Annual Goal: She will actively participate in a morning routine by choosing the order and physically assisting in the activity.
What will the student need to do to complete this goal?
When presented with the lotion, hair brush and toothbrush in a predicable placement, she will choose which she would like to do next by touching it in under 15 seconds.
She doesn’t even do this. But, wow, what an honorable goal.
What’s a dad to do but write an email to the teacher:
I got the progress report yesterday. It’s interesting to note that in her 13 years or so of IEPs and progress reports she has never once reached a goal.
What does that tell you?
To which she replies …
I can only speak to the past two and a half years, but in that time she has been making great progress. Her current progress report indicates that she is progressing towards all of her goals. She has reached several individual objectives towards her goals this year. Consistency has remained an issue because there are certainly times when she is “more with us” (as we were talking about at the Thanksgiving lunch). Her current IEP expires in March and I expect us to adjust goals that she has reached.
So I write back …
I disagree with the concept of “goals” and always have. I don’t see that she has really reached any, yes, at times there is some consistency when she is “on,” but even then it is hardly better than chance.
Intentional reaching one out of three tries (Vision information page) seems less than chance, but I have not done statistics in a very long time. Many items in the report border on “facilitated communication” which is a complete farce in itself, and a trap WE ALL fall into. Her “facial expressions” are mentioned many times … note that when she is very irritated (physically) and even sometime when she is in pain, she reacts by kicking, laughing and smiling, a very different than expected reaction. Facial expressions may be valid when read as we read our own, but quite often hers have a very different meaning.
To be clear, none of this is a reflection upon you or the class or the therapists, if anything it reflects on my daughter and on me. She has never reached a goal, so I still do not see the difference between the goals we are forced to come up with, or my true goal, for her to be “normal.”
I am attempting to set her up with a different set of communication specialists, I have come to the conclusion (along with multiple others in that field) that the work attempted in the past is basically useless. I will keep you fully informed as this gets going.
Do keep up the great work, the efforts, the dream, they are greatly appreciated. But do not forget that the biggest obstacle to achieving any goal that is created is Pearlsky herself.
Why is getting nowhere fast so tiring?
On November 18, 2009, In Communication
Ok, so she can communicate.
When an infant is hungry or in pain, for instance, s/he will make certain noises, have certain reactions. New parents (usually) quickly learn to interpret some of these sounds and act appropriately. At first, one wonders what the sound or cry means, and then tries everything until the feedback from the infant shows that the correct solution was at hand. When that cry or sound is reproduced later, the appropriate action is tried first to solve the problem. Thus, the infant is communicating with the parent and the parent learns this from the infant’s feedback.
If Pearlsky is crying as if in pain, I first wiggle and tug on her ears. If she cries out louder, I a) feel like shit and b) know that we are dealing with an ear ache. If there is no reaction, I will reposition her or press on her belly, etc. She is communicatiing she is in pain, I am looking for feedback. This is how I learned that certain cries and sounds mean she is hungry.
If she is on her play table and I hear a certain level of complaining (ok, ‘bitching” at me) and I respond “I’ll get you in a minute, Pearlsky,” she will often stop making the sounds. Yes, communication.
But this is all feeback based, guesses on my part, guesses as to what her “messages” are. The messages are not encoded with letters, are not phoneme based (words), nor are they built up of any elements, hence probably not language. There are a few sounds, mainly differentiated by tone and pitch, that appear to have certain meanings. Does she think, “I am hungry, let me make sound number 2″? I doubt it. These are basic, instinctual sounds that very well may spontaneously happen.
So yes, she does communicate. But we need more.
On November 17, 2009, In Communication
I’ve written about this before, the fact that Pearlsky cannot communicate AT ALL. I find that people often have trouble with this, as a concept. It is actually very simple. And, very complex.
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