Hot Summer Autism Topics
Our very non-sleepy summer continues, on the homefront (Charlie’s good, though he looked a little resigned when told he has no school today and Friday, due to the 4th of July) and on the autism front: Buses that don’t know where they’re going, an autistic boy found walking after the highway—and some good news too. The first two items make me more grateful than ever that Charlie attends summer school in our town, at the middle school he’ll be going to in September, with the same teacher he’ll have, and on a bus provided by the county’s education commission.
Every year we’ve considered sending Charlie to camp: It would have to be daycamp the first time (for one thing, I can only stand to worry so much; Charlie not having that much language, he wouldn’t be able to tell us what’s going on if something “untoward” went on). Some programs we’ve looked at are at the same times as his summer school, which he needs to attend and likes; some programs are in August when we will be at the beach. I made some inquiries about a day program in late August when we’ll be back and was told by friends that the pace is really slow; am not sure that would be the best thing for Charlie, who does well when he’s active and kept busy. Other families have noted good experiences when they’ve hired an aide and sent a child to “regular” camp and perhaps (perhaps) this might be a possibility.
Thoughts of independence, thoughts of growing up, “the usual” in autism discussions—and since it’s the early 21st century when autism is getting a lot of attention and the prevalence rate has greatly increased, looks like this post will mention….vaccines.
Or rather, litigation about vaccines; last summer indeed saw the first hearing in vaccine court, which was aout the first of 4,800 claims filed by parents of autistic children who believe that their child’s autism was caused by the U.S. government’s vaccine program. Back in June of 2007, the case of Michelle Cedillo was heard; the case of Hannah Poling was to be the second case and opened up discussion about mitochondrial disorders, vaccines and autism; closing statements in the cases of William Mead and Jordan King were heard in June.
Nonetheless, all is not quiet in the vaccine court: As Sullivan wrote today on Left Brain/Right Brain, the Court of Federal Claims holds a “Judicial Conference” every year, in which the Special Masters and lawyers discuss the system. This year’s conference was to involve “panel discussions of general vaccine policy issues and of the information underpinning vaccine compensation decisions.” I quote from what Sullivan cites:
The first panel is tentatively titled “Vaccines: Balancing Benefits with Parental Concerns (the autism issue?).” It will be moderated by Sharyl Attkisson, a reporter with CBS Evening News. The panelists will be Arthur Allen, author of “Vaccines”; David Kirby, author of “Evidence of Harm”; Dr. Ed Marcuse, Professor of Pediatrics at the University of Washington, who has served as a member and Chair of HHS’ National Vaccine Advisory Committee, and as a member of CDC’s Advisory Committee on Immunization Practices; and, Dr. Bernadine Healy, Health Editor, US News and World Report and former Director of the National Institutes of Health. There is no doubt that this discussion will be lively and informative.
The session has been cancelled, as announced in a letter. Notable about this first (and cancelled) panel is that three of the panelists (Attkisson, Allen, Kirby) are journalists. Dr. Healy’s views on vaccines have been, of late, made known through articles in the popular media, in US News and World Report and an interview with Ms. Attkisson on CBS News. Dr. Marcuse is a professor of Pediatrics and has (like Dr. Healy) served in various capacities for major government health agencies.
Here’s (again via Left Brain/Right Brain ) the topics of the second two panels, whose participants include judges, lawyers, doctors, scientists, and professors of public health.
The second panel will utilize some of the information from the first discussion and apply it when discussing the effects of decisions under the Vaccine Compensation Program. The title for the second panel is “Vaccine Compensation Under the Act: A Mix of Science and Policy?” This panel will be moderated by Senior Judge Loren A. Smith, who was the Chief Judge when the Vaccine Program first began at the court in 1988. The panelists will be Kevin Conway, a petitioners’ counsel since the Program’s inception; Randolph Moss, a partner at WilmerHale and co-chair of the firms’ Government and Regulatory Litigation Group, who represents vaccine manufacturers; Dr. Paul Offit, the Chief of Infectious Diseases at the Children’s Hospital of Philadelphia, a professor of pediatrics at the University of Pennsylvania School of Medicine, and the co-inventor of the rotavirus vaccine, RotaTeq; Marguerite Wilner, former Vice-Chair of the Advisory Commission on Childhood Vaccines; and Ruth J. Katz, Dean of the School of Public Health at The George Washington University. Previously, Dean Katz served as counsel to the Subcommittee on Health and the Environment in the U.S. House of Representative (then chaired by Congressman Henry A. Waxman), where she helped develop the National Vaccine Act. With these different perspectives, this promises to be an interesting discussion.
The third panel is to be an “ethics” panel.
Judge Mary Ellen Coster Williams will moderate a discussion regarding ethical issues involving expert witnesses. The panel will include Special Master Denise Vowel and a law professor, Joseph Sanders from the University of Houston. With the extensive involvement of experts in vaccine litigation, this panel discussion should provide important information and considerations to all vaccine practitioners.
Why the first panel was cancelled, I can’t further speculate; at least one participant writes a bit wistfully about the cancellation of the panel (he was to be on it). I won’t be surprised if there are called of conspiracy from various quarters: The vaccine-autism hypothesis, however much not backed up by science, is a hot topic (as suggested by this image of a very hot place in reference to autism and vaccines, and discussed by one science blogger).
Since it’s summer, keeping cool seems a very good strategy.
Tags: asd, asperger, autism, autism blog, bernardine healy, court, david kirby, disabilities blog, disability, Family, family blog, federal government, journalism, Media, Parenting, pdd-nos, summer, VaccinesRelated Stories
POSTED IN: Health, Legal Issues, Science, Vaccines
9 opinions for Hot Summer Autism Topics
Bonnie
Jul 3, 2008 at 7:04 pm
Hi Kristina, just wanted to share that we have our son in a day camp for kids with disabilities 3 days out of the week (4 the first couple of weeks of August). It’s cool because a couple of days have a theme on which the activities are based, and swimming is included for sure on these days, and the other days are centered on field trips. So far, he really likes it. Next week he’s going to the best and most inexpensive camp ever! He’s spending a week primarily with my sister who is a very experienced OT who happens to work with Autistic children, and other family members a whole other state away! Could it get much better!? I’m pretty sure I’ll miss him much more than he’ll miss me!
Thanks for summarizing all your great blogs.
Regan
Jul 3, 2008 at 7:48 pm
Other families have noted good experiences when they’ve hired an aide and sent a child to “regular” camp and perhaps (perhaps) this might be a possibility.
——————————
I share some of your trepidations about camp, and I don’t know if we’re quite at the overnight camp stage, although I’ve got a tent and we are going to practice sleeping out in the backyard just to see what happens, and if that’s good, then some overnight family trips to some campgrounds.
Eleanor has been going to a typical afterschool program for a few years and in the summer they have been doing all day field trips to various places with activities. The last one was a rope-challenge course in the mountains requiring team cooperation, and this trip included a new group of kids from a city agency. I was not sure how Eleanor would handle the above or enjoy the rope challenge course, so I obtained and gave permission for her and her shadow to leave early just in case.
As it turns out, they stayed the entire day, from the photos Eleanor really enjoyed it, participated well in the team challenges except for the slow parts (which annoyed the typical peers too) and when they finished the day with a hike to the top of the mountain, she got up there first with nary a huff or a puff or complaint, which apparently boosted some of her status with the group because it wasn’t an easy climb.
Crossed fingers. Step by step, so far so good.
mayfly
Jul 3, 2008 at 8:34 pm
In the SF Bay area, thee is a great Organization, VIA services. They run Camp Costanoan which is in the Santa Cruz Mountains near Cupertino. My daughter has been going to their summer camp which runs Sunday to Friday for, well it will be her fourth time later this month. She has a one-on-one aide for the camp, but they also have children there requiring less attention. She really enjoys it, although we need to take her out of her ESY program to do so. I highly recommend the camp. The cost is $1100 dollars I don’t know how that compares ,but the local regional center offered to arrange overnight respite care. The cost $1250! per night. We declined that.
Shawn3k
Jul 3, 2008 at 10:33 pm
Once again, I have to praise my local YMCA…my son has gone to two out of three of their area day camps now for the past 3 years. These are not special needs camps, but regular camps that also are able to accommodate those with special needs/learning disabilities. The first one, was done right on the property of our Y. We went with that the first year to see how both our older two kids did in the setting (my oldest daughter also went, she does not have Autism). The last two years, they have gone to another Y camp in the area - that offers canoeing, horseback riding, hiking, archery and other activities. The best part is, because its done through the Y - he qualifies for a 1-1 through their Y-Kids program. The counselors assigned to such kids all go through a special training program and are monitored by other staff as well. Also, it is close to home, so I am only a few moments notice away. The bus picks them up at our local Y and brings them to the camp or I have the option of driving them their myself. For now, this is a perfect fit…someday we may do the camps further away from home and overnight…but not yet. I like the combination of giving him normalcy and me peace of mind. Oh one last kudos to our Y…they also offer scholarships to offset the cost (which they also do for their normal YMCA memberships). These are not income based either, but done on a case by case basis - which I like very much. They truly go out of their way to give every child a chance to experience a fun summer camp setting.
Marla
Jul 4, 2008 at 12:12 am
I can’t get myself to do the camp thing for M. Last year we almost did and then I heard in the news a girl was taken into the woods and forced to do sex acts. This was done by a camp leader. It was terrible.
I know I have to deal with these fears too. I really like the aide idea for a camp.
Kristina Chew, PhD
Jul 4, 2008 at 12:42 am
Oh boy. That’s the kind of thing I’d rather hear about…….
Charlie’s ESY is too good to take him out of, though camp for a full day would be nice. There are a couple of social skills type camps, but he doesn’t have the language skills to attend those.
Very glad to hear about some positive experiences!
farmwifetwo
Jul 4, 2008 at 8:17 am
Kristina, we’ve had some good fits and some poor fits for my eldest son, but all the people looking after the programs were kind. We’ve always attended “regular” programs. Nothing specifically tailored to special needs kids. And I have sent support as well. He needs to be kept busy, anytime they stand around and he has nothing to do… that’s when he wanders off or starts talking constantly or something irritating to others. Nothing bad… just annoying.
Last summer I sent him to a friends and she kept him busy all the time and he had a good time. I have 2 that take kids. Little boy is going to the other this summer for half a day/wk. Both have attended a speech day camp program and loved it. I tried to get little boy into one closer to home this summer, but they were late getting it organized and had to cancel due to lack of attendees :(
This year we are staying home, playing in our pool, daytripping and homeschooling.
I’m tired of running.
alyric
Jul 4, 2008 at 9:27 am
Happy the 4th, or is that “May the 4th be with you”. Later today I’ll be going to a 4th July bash, should be fun though I’m not that fond of hot dogs,
Good luck with the camp thinking and hope Jim’s back is getting better, though it]s a painfully slow process (pun intended).
Watch Your Words When the Subject is Autism, and Vaccines
Jul 4, 2008 at 12:56 pm
[…] notion that vaccines or something in vaccines is linked to autism is a topic of much (and often heated) debate—one has got to be very careful, and precise, with the language one uses. Tags: asd, […]
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