4.12.2008

Absence Makes the Heart Skip Several Beats

Leelo had a petit mal seizure-type episode right in front of me and his speech therapist Sage. I yelled his name and snapped my fingers in front of his eyes for several beats, and he just stared straight ahead at nothing until suddenly he was back as though the episode never happened.

Chatted with Dr. Sheyenne, his neurologist. Leelo gets another EEG! YEAH!

Leelo has also been having pee accidents all week. I took him to the doctor, who said he had no bladder infection though he might have constipation. Then again, both Supervisor M and I think Leelo might be having headaches/migraines. Leelo hasn't had wet pants for months. Seymour and I suspect that the accidents may have behavioral bases as well. We are upping the reinforcements and party potty atmosphere for successes.

Dr. Sheyenne thinks the absence episode and headaches might be related. We may see a pattern on the EEG that can tell us where the symptoms are coming from. Or we might get another "Oh, yeah, that's a fairly typical pattern for seizures *or* autism. Do you want some meds?" Sigh.

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In other, less exciting news, I am sad about the way I and several other people are being treated by the moderator of a special needs parenting e-group. Said moderator is a rigid thinker who has created and vigorously enforces a set of rules for posting content on the two group lists. People who break the rules, innocently or with the very best intentions (e.g., making sure that announcements about community support events reach as many people as possible) get very rudely reprimanded and punished (warned, moderated, or kicked out). No matter that the people posting messages are actively providing real help and support, which is the entire reason the group exists.

I do not like being spoken to like a naughty child.

I do not like being told that rules created and enforced by one self-appointed gatekeeper are more important than the welfare of several hundred vulnerable, stressed, isolated parents.

I do not like being accused of grubbing for publicity and fomenting a conspiracy by telling people that the Special Ed PTA to which I dedicate my very precious free time provides services and babysitting for them, for free, even if they don't live in our school district.

I do think that there should be special itchy underwear for people who cut off access to information because Ur Doing it Wrong.

I can't think of any way to resolve the situation, which makes me crazy.

I don't want to disrupt the community; many of the members are tiny tiny kittens holding onto the tiniest tiniest branches. Very fragile, very much needing the support the community provides. The very saddest part is that the moderator is one of those kittens, too.

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