“Hope springs eternal …” ~Alexander Pope

I will start with what would appear to be a non sequitur, but is not, hence it may just be that elusive non non sequitur. And more to the point, since it comes before the post itself, to which it is a non non sequitur, it is more properly a pre-post non non sequitor.

Many years ago I was a camp counselor for a summer. A friend of mine worked there as well and his name was (is) “Happy.” For all I ever knew, that is his given name. Great guy and yes, he was usually happy. It so happens one day we were hanging out, Happy and me, and probably a dozen of the kids, boys and girls. One of the girls came up to us, and I remember this as if it was yesterday, one of those snippets of life that stays with you forever, she was a bit goofy, probably six or seven. She looked at Happy and said “I wish I had a name like yours.” I just looked at Happy and he was really trying not to laugh out loud. His lips were quivering, tears welling up. The girl looked at me a bit confused, and I said to her, “But Joy, you do have a name like Happy.”

As background to this post, you may want to revisit this short one, and then this one I like a bit better.

Although there is much more, this will probably be the last post on the IEP meeting the other day.

Before the meeting, Joy (see! It was NOT a non sequitor, but a different woman named Joy) came up to me and said that she was going to be modifying her services for Pearlsky. You need to know that Joy has been with Pearlsky for 17 years, we almost always go “head to head” at IEP meetings, yet we have the utmost respect for each other. She is a vision specialist. I said to her, “I will approve whatever you say, so just keep your presentation short, ok?” She got visibly upset and asked me why, and we quickly figured out she heard me say “disapprove”! She then said she wanted MORE direct service, she sees a change in Pearlsky (68% of the time; no, just kidding), she thinks Pearlsky is doing intentional, repeatable, eye gazing! I told her I see it as well. We smiled as we entered the lion’s den IEP meeting.

We are in the midst of the meeting, talking about switches, maybe 54.6% through the meeting, when I just throw out “Another problem with your use of switches is that you are asking her questions which, if she understands and cannot physically answer, is cruel.” Well that started a shit storm. (My previous comments on this).

Joy went into an oration about how important it is to talk with her and ask questions and to do normal social intercourse, even if she does not answer. Others asked how else to learn what she knows (even though she can’t answer). And then it happened. The psychology intern innocently asked “how do you talk with her in the evening without questions?”

I talk very little. There is no conversation, that takes two. I try to tell her what I am doing, or going to do, but it is very quiet.

And I saw disapproval. From all corners.

You try it. Take a stuffed animal, and live alone with it for a month. Talk to it, every night, conversations, interactions. See how long it lasts.

Then I got the subject back on track. It was either that or toss my lunch.

The remaining 39% proper occurrence of the meeting went on. Then we were wrapping up and Joy, still bothered, started it again … now remember, she has worked with Pearlsky for 17 years, she honestly loves and cares about Pearlsky very much, we (Joy and I) have had our major disagreements at many IEPs but always, without question, a great deal of respect for each other. She starts in …

How can you compare Pearlsky to a stuffed animal?

Um, no, that was my point. It was a physical analogy, sure, but she is so much more. But outward communication-wise, she acts like a stuffed animal.

I think you are just wrong. You must talk to her, ask her things. I ask her if she is happy to see me and she lights up.

Then continue that. Encourage that.

But you need to keep her environment like a typical one. You need to be interacting and talking to her, including normal social questions which none of us answer anyway.

At this point I was rattled, that is not typical. I kept it inside, but needed to get this over. Everyone was silent.

You need to understand some things. This have been twenty years. Twenty years of her not looking at me, not reacting in any way, not a word, not an “I love you,” not a smile nor a glance to anything I say. Silence. More than silence, apparent dismissal, no acknowledgement. Nothing.

The first five or six years were simply painful. The next few years were horrendous. Then followed some years of seeing the futility of it all. Every fucking night of her life, twenty years of them, I say the same things to her as I put her in bed. And for a great majority of them I leave her room in tears, shaking, as I realize those are the first words she heard me say in hours. I hate myself for that, it is a complete failing of mine.

Understand Joy, this is NOT about Pearlsky. No. It is about ME. And that’s the way it is. Period.

That is pretty much verbatim. I looked around, there were some red eyes. There was silence. Joy was stunned. I saw her eyes look up and around, like deeply thinking and linking thoughts. All she said was “wow.”

We spoke the next day. She said it was an epiphany for her, a deep understanding about the families role, roles, and limitations, and so much more.

Maybe I utilized my brain 28% of the time in the meeting.

I saw the facilitator the next day as well. This was her first IEP with me, and I know my reputation. Let’s say I am not everyone’s favorite parent. She was warned. She told me “I know why you have your reputation.” I asked how she thought I did, she said I did great. And then added, “They have a problem because you are very smart and very quick minded.” Little does she know that that is what a lack of a vital amino acid does to you, 68% of the time.

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