Why have an aaidd humanist action group

Formerly Aw l W eave Ghat

The Newsletter of the American Association on Intellectual and Developmental Disorders’ (AAIDD)

Humanist Action Group – December, 2007 v.1 issue 4

This newsletter expresses the opinion of this subgroup and not necessarily of AAIDD

All data presented are opinions and alternative opinions may be printed in later issues.
Send feedback and submissions t Notes from the editor
Hello again! Some things have been going on with the group. We are up to 15 memberswhich excites me to no end. We are showing slow but steady growth. I realize that someof you out there join every group to help support the AAIDD and probably wouldn’t havejoined this group otherwise. Nevertheless, I welcome the opportunity to hear differentopinions and constructive feedback. This group serves a useful purpose but has much room for improvement. In particular,the website needs more content. If you are sympathetic to Humanism, would you be will-ing to write a page or two and I could, if necessary, format it and publish it to the web.
Also, speaking of the internet, we now own www.AAIDD-Humanists.org in addition towww.AAMR-Humanists.org. I expect to be able to drop the older AAMR title in a yearor so This issue is a month later than expected. I could say this was to make the issues fit into amore traditional March, June, October, and December schedule but the real reason bringsup one of the topics I like to discuss when I can: medication side-effects. I’m a fairlyhefty guy and take a few medications for blood pressure, diabetes, high cholesterol, etc.
In the mid-summer my physician who I have much faith in, increased my blood pressuremed. On the increased dose I became lethargic and much less focused. I looked up thedrug online and these conditions were mentioned as infrequent side effects of the medica-tion. After giving it a while to see if I adjusted, I mentioned this to my doctor. He lookedsurprised, said they weren’t side effects, but changed my drug regimen anyway becausesome of my electrolytes were off and that was a side effect he recognized. After a fewweeks, I was back to baseline and able to write newsletters, etc. I can read well and research things on the internet and am willing to argue with my doc-tor a bit if I have to. All the people I work with who have intellectual disabilities can’t (Irecognize that some people with IDD can) and they often take a lot more drugs than I do.
Many of the drugs others take are more potent or mind-altering and have harsher sideeffects. I worry that many people with IDD suffer from side effects from many of themedications they take but can’t get to try alternative (but traditional) medications withfewer side effects. I suspect that most of the readers of this issue have stories to share about people theyknow who got much better in some areas when they stopped taking a medication that v.1 n.4; December 2007
addressed a different area. One of my clients is on a phenobarbital taper while it is re-
placed with Tegretol for seizures and also to address a likely bipolar disorder. On this
taper, which began after he was on a stable dose of Tegretol, to our surprise and delight,
he began to communicate with us. Most of his many inappropriate behavior decreased
significantly in frequency, he began to walk better, he started joking with us and he smil-
ed for a change. He’s blossoming as a person. His sister/guardian cried with joy when I
told her about this improvement. Staff that were previously reluctant to work with him
are now happy to work with this man and see what he can do. I’ve asked his doctors to
accelerate the taper and am eager to see what will happen. He came to our institution sev-
eral years ago already on the phenobarbital so there was no way for us to know how it
influenced him and there was no way for him to tell us. That is my point. I could tell
other stories like a friend whose weight goes from chubby to near anorexic based on her
seizure med at the time. If you have stories you’d like to share in this area, feel free to
submit it to me and I’ll print it. It’s no more an Humanist issue than most other medical
issues but it’s important to share these stories. I’d also be happy to share how various
people have addressed this situation.
How do you talk to a person with IDD about Hum anism in light of their
friends’ beliefs? (Part two)
In the last newsletter we talked about the ism) to try to convert others to their sys- pose that the group emotional experi- ence of a religious service may be a attempts. In real experiences, this isn’t strong emotional factor. It’s similar to so and this is why there are conversions.
the television for free. There’s nothing like being caught up in the excitement.
Once you’ve been caught up in the ex- night. We were at the Holiday party atthe Unitarian Church I attend. Don, my Personally, part of the reason I like Uni- tarianism is that is so bland (relatively, I do find it intellectually stimulating). I silly or dangerous belief. Hitler’s rallies in the 1930's and 40's are a very extreme example of this but politicians in general

v.1 n.4; December 2007
as a child for both religious and non-reli- gious organizations. I’m a lousy sales- can. I miss a little fun but I can lead a and call it emotional blackmail but it’s not as drastic as that. Basically a friend wants to share their religion with you.
influence our ability to be influenced. In To say “no” is to reject their friendship and good intentions and, after all, this is friend. So we say yes once and maybe asecond time and so on. Every “yes” makes it harder to say “no” later. The since I would like this newsletter to be a reluctant to tell him/her otherwise. I can Website News
Slowly but steadily the website advances. I’ve put in more content but there are still areaswhich need further development. The site is now listed in a few search engines which is ahelp. Note that if you look up MR or IDD and Humanism on any search engine, you findthat our website is the only resource available in this area. With a little more content, wecan begin to promote the site and increase our value as a resource. If you would like to help write a webpage or two, let me know. Visit the site athttp://www.aaidd-humanists.org and check it out! Distributing this newsletter to friends
This newsletter has a pending copyright by
Jim Mullin
Feel free to distribute this newsletter to
friends either in print or as a .pdf file, especially
those friend that might become
members. Please distribute the whole document,
rather than only a section.
If anyone would like to be added to the
distribution list, ask them to join this
group when they renew their AAIDD
memberships. Between renewals, they can
v.1 n.4; December 2007
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CCS Information Service Cerebral Palsy Resources CCS Information Service Cerebral Palsy Resources This bibliography has been compiled from resources held by the CCSInformation Service and contains references to a wide range of books andjournal articles on cerebral palsy and parenting a child with a disability. Books and videos are issued for one month, with a renewal possible if the