Sleep

photo credit-Jun's World
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Sleep.

One of the most common, natural things there is. Most of us never think about it much at all, until we (or someone close to us) has problems related to it. There are a multitude of disorders that can affect our sleep. Insomnia, sleep apnea (central or obstructive), narcolepsy, sleep paralysis, sleep walking, night terrors, etc. You get the idea. Sleep disorders of one sort or the other seem to be a lot more common in those on the autism spectrum.

Buddy Boy has never seemed to require (or want) the same amount of sleep that most kids his age get. We've tried regular routines, music, melatonin, night lights, and various other meds to try to get him to sleep thru the night. We've gotten to the point where he'll go to bed at a predictable time (8:30-9:00 pm-not bad for an almost 10 year old), and usually sleeps until 6:00 am, though sometimes he's up at 2:00 or 4:00, and stays up for the day after that. We're fairly accustomed to his routine. That's not the problem.

Sweet Pea, his 7 1/2 year old sister, has been having sleep related problems since August. At first it was her getting up every night screaming. When we'd come into the room, she'd complain that her stomach was hurting. Mostly it was an epigastric centered pain, and only occurred at night. When she woke in the morning, she still complained of stomach pain, and her diet (which Liz had pretty full of good things-protein, vegetables, fruit), devolved to milk, cheerios, and cheese. Everything else hurt to eat (according to her).

At first I felt it was most likely related to anxiety regarding school starting up (Sweet Pea is a fairly high anxiety kind of kid) and hoped that by not paying too much attention to it it would go away. Well, Sweet Pea got into the swing of school, liked school, and it didn't go away. I took her to a pediatric GI doctor near the end of September, after starting her on some Prilosec (Sweet Pea had reflux pretty bad as an infant, and I thought it reasonable that perhaps it had recurred). The GI doctor agreed, and she is now on daily Prilosec. The stomach aches have "mostly" gone away (though not completely-when she was an infant putting her on Prilosec changed her in 48 hours from a miserable baby who cried every night for three months straight to a happy, smiling kid). Her diet, now that she's on the Prilosec, has once again normalized.

Sweet Pea continued to wake up most nights, sometimes screaming, sometimes coming in to wake us up. Most nights it's sometime between 1:00 and 3:00 am. Although it's somewhat disruptive to me, it's majorly disruptive to Liz, who often can't get back to sleep (internship was good training for me). For the last several weeks Liz has been sleeping downstairs in the family room, so as to try to get some sleep. She also has not been very happy. :(

Sweet Pea's pediatrician has prescribed a mild anti-anxiety agent, which has helped some, but not completely. Instead of 5-6 nights out of 7, we're down to 2-3 nights out of 7. Not even paying her 25 cents to not wake us has helped (Sweet Pea will make lots of money when she grows up-she is very focused on making money-to the point that I constantly remind her of all the other really important things out there that are more important).

We, being experts in sleep as much as anyone out there, have tried as many different things as we could think of. I'm not really looking for any new ideas, just venting a bit, I guess.

And dreaming of the day when both kids will sleep through the night.

Wow! The Trib Gets It Right

photo credit-Todd Baker
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Almost exactly two years ago I wrote two posts regarding how the Chicago Tribune was allowing non-factual gibberish to be published under its masthead thru the online in house blog of Julie Deardorff, and how it was abdicating its journalistic responsibility. I was afraid at the time that this was to be indicative of what would pass for "investigative journalism" at mainstream, formerly powerhouse, papers (and other media outlets).

I am happy to say that I was wrong.

In May the Tribune published very good investigative pieces on Dr. Mark and David Geier, as well as a local Chicago quack by the name of Dr. Mayer Eisenstein.

Now this month there are two more articles on autism and quackery, detailing how risky therapies have little basis in science, and how legitimate researchers have seen their findings twisted by those who would fleece money from unsuspecting parents.

All of these recent articles are the product of reporters Trine Tsouderos and Patricia Callahan.

I must say that I am impressed with the quality and consistency of these articles. No false balancing of legitimate science with BS pseudoscience. No confusing association of two events with causation. Just a thorough investigation of the underlying science, and painstaking digging through all of the "scientific sounding" but totally bogus claims of those out there that would fleece desperate parents out of their time and money.

If these two reporters keep up such great work, we just might see the rise of mainstream newspapers again.

Stars and Rain

I recently had occasion to visit China (I was invited to give a couple of lectures there), and took the opportunity to arrange a visit to a school for autistic children, Stars and Rain. Strictly speaking, Stars and Rain isn't so much a school for autistics as much as it is a school for their parents, who come (with their children) for 12 week courses in how to educate their child. There are very few resources for either diagnosis or treatment of autism in China, and Stars and Rain may have been the first school in China for autistics and their parents.


The first person I met when I got there was the Development Officer, Sun Zhong Kai (Scott), who was the person I had corresponded with via e-mail. I had asked a couple of times via e-mail if my visit would be too disruptive, and Scott said that it would be OK. This gave me my first positive impression of the school, as it was more open to visitors than my kids' own school. The second positive impression I got was when I asked if I could take pictures, and he indicated that it would be fine, as long as I didn't take any that showed the children's faces (as the school liked to respect their privacy). A school that was open, and respectful. Not bad, for the first 5 minutes.

Scott's background is that he was one of the first social workers trained in his university in Beijing. He seemed very knowledgeable regarding autism, and had a very upbeat and friendly attitude. He immediately put me at ease. His English skills far surpassed my limited Mandarin, and we communicated just fine, despite the fact that due to a mixup I was without a translator for this trip.

Scott took me on a tour of the facilities, which consisted of about 10 different rooms in a basic but clean building. The teachers (I saw about a dozen of them) were very friendly and energetic. There were also a number of college age volunteers that assisted during the day. The students range in age from 3-12 years of age, though most in this group seemed to be from the younger part of that age range.

Although the school says on its website that they teach using ABA, they only use positive reinforcement, and from walking around and observing, it seemed a fairly loose mish-mosh of ABA, TEACCH, and good old-fashioned one on one instruction. Scott stressed to me that part of Stars and Rain's goal is to change attitudes in China towards autistics. He related that for the first time, the government recently recognized autism as a disability, and provides individuals a (very small) monthly stipend.

Stars and Rain was started in 1993 by the mother of an autistic child, Tian Huiping, with a couple of other parent volunteers and pre-school teachers who had never heard of autism before. Initially it was a residential school for six children, who stayed at the school from Monday-Saturday, then went home for the weekend. As demand was very high (and they lost space where they could stay overnight) the school decided to leverage what expertise it had, and transformed itself into a school where they taught the parents (accompanied by their children) how to educate their children themselves at home. Terms run for three months, with 50 families attending each session.

The school has had visits from some US special ed teachers, and they have associated loosely with the Heartspring organization out of Kansas, USA.

Besides the parent/child instruction, Stars and Rain also runs what Scott described as a "demonstration project", a residential home for six adolescent-adult autistics. This facility is located a couple of blocks from the school. There are about 8 staff that work in that facility, including 3 long term university volunteers (who were from Germany and Indonesia). Education there is focused on daily living skills. The residents go out and about in the community with the staff, and Scott reports that finally, in this location, they have built up a good rapport with the community which supports their presence (this is the school's third location).

All in all, I was mostly pleased with my visit. Although they call themselves ABA based, what I saw was not the strict ABA that makes my skin crawl, but rather a much looser version that seemed to go with the flow of where the individual children were at. The staff is friendly, dedicated, and seems to work very hard. The facilities, although basic by Western standards, were quite adequate, and kept very clean.



Whenever I feel disappointed about services that Buddy Boy isn't getting, or about problems we have, I will always now know that things could be a lot worse. Stars and Rain is doing good work, but because of their limited resources they are limited in how many people they are able to help. They have a waiting list of about two years for their courses at the present time. I encourage anyone who wants to donate to them to send them a little cash via this page. You have to do a bank transfer, but it's not that hard.

Dear Mr. Springsteen

photo credit-uchiuska
creative commons license


Below is the letter that I just e-mailed to Bruce Springsteen's publicist at mlaverty@shorefire.com . I encourage others to also write him and express your opinions.


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Dear Mr. Springsteen,

I am writing you regarding your upcoming concert that you are doing in conjunction with Autism Speaks.

I have been a great fan of yours for years, and must admit that I got a little teary eyed when I read a story of how your music helped an autistic child learn to talk. My own son (who is autistic) also went through a stage where he sang a lot of songs (and bits from songs) instead of talking in the usual fashion. I would have much preferred that he used “Born to Run” instead of songs he heard on “Barney”.

I am sure that by now you are aware of the controversy regarding the organization Autism Speaks within the autism community. Not only do many parents of autistic children object to the way that Autism Speaks portrays those with autism, but more importantly those who are actually on the autism spectrum object to how they are portrayed.

Although I don’t know you, I sense from your music that you understand the underdog and the downtrodden in life. Unfortunately, many autistics in society are bullied and abused, sometimes by the very people that are supposed to be helping them.

The objections to the way Autism Speaks treats autistic individuals most recently revolve around a video that they released, but go deeper than that. Autism Speaks, in attempting to “raise awareness”, as well as funds for research on autism, has been consistent in using language that is not only disrespectful towards autistic individuals, but also absolutely false in many instances. Those with autism have not been kidnapped or stolen, and are not monsters. Autism is not a fatal disease, and thus should not be compared to cancer or AIDS. Finally, Autism Speaks is perhaps the only major organization that purports to represent disabled individuals that refuses to include those with the disability on their board.

This is not to say that those with autism don’t have challenges, or that parenting those on the autism spectrum is a piece of cake. But much of the challenge comes from living in a society that discriminates against those with disabilities, and lacks a true understanding of what those individuals actually require in regards to accommodations.

I ask that you reconsider your association with Autism Speaks, as that organization neither represents either autistic individuals themselves nor contributes to their welfare. Instead, this organization denigrates those on the spectrum. I just don’t see you as the type of person that would want to be associated with such an organization.

Regards,


Joe xxxxxxxxxxx

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Edit-If there is one post that Mr. Springsteen should read, it is the one put up by Bev over at Asperger Square 8. Go read it here. Bev's post is the most elegant and powerful one I've seen on this thus far.

When Will They Listen?

One would have had to have been living in a cave in the greater disability community two years ago not to have noticed the Ransom Notes Campaign and the furor that followed it. In that campaign the NYU Child Study Center put out an ad campaign that implied that autistic individuals (as well as those with a number of other conditions) had been kidnapped. This imagery was (not surprisingly) extremely offensive to many in the greater disability community. After an intense counter campaign by disability advocacy groups, including ASAN, the Ransom Notes Campaign was stopped.

The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc.

And as pointed out over at "Cat in a Dog's World", perhaps the worst part about it was that they used video sent in by autistic families while they had their doom and gloom voiceover.

Two years ago the NYU CSC claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media.

I wonder what excuse Autism Speaks can possibly come up with this time.

But At Least It Would Be a Graceful Death

photo credit-mcveja
creative commons license


Sweet Pea tends to worry about the future. She'll come up with all sorts of things to worry about. Usually these are easily countered, and she is (temporarily) reassured. It's gotten that many of the same things come up over and over again, so I've developed almost automatic responses:

"What if I don't like the job I get when I grow up?"
"Then you'll get another. I had a lot of different jobs before the one I have now".

"What if a bad person breaks in our house and kidnaps me?"
"The doors and windows are all locked. And the police drive around all the time looking for bad people".

"What if you die?"
"I'm not planning on dieing for a long time".

"What if there's a tornado and it knocks the house down?"
"This house has been here for over 100 years, and nothing has knocked it down yet. Mommy and I and this house will protect you".

But the other night she threw me off for a second. She came up with:

"But what if I get sick?"
"What do you mean, Sweet Pea?"

"What if I get sick and die from the Swan Flu?"

One part of me cringed a little inside. I shared this irrational fear, that this flu season would be one for the record books. That there would not be enough vaccine in time. One of her classmates already had a case. A grandchild of a co-worker is currently ill with it. One of our doctors got it last fall from a patient. What if I caught if from a patient and infected one or both of our kids? Of course I know that even if they get it, that they probably won't die. They'll probably be enough anti-viral medicines around to treat them. Probably.

Of course another part of me wanted to laugh out loud at the "swan" thing. Buddy Boy immediately chimed in,

"It's the SWINE flu. SWINE flu! You know, pigs!"

I then hugged her, and told her we'd just have to get her some medicine for that, if she got sick.

We actively try not to have the news on the TV, as there's seldom anything good on, and you'd think that every other child in the county had been kidnapped for all the coverage kidnappings get. But somehow the world creeps in, no matter what we do. And the media magnify our little fears, irrational though they be.

Dogged Perseverence

Some people may remember the story of the 5 year old Columbia, Il boy who had a service dog prescribed for him by his doctor, and had to fight a court battle in order to have the right to take the dog to his school. The Kalbfleisch family won a court order to have the dog allowed to accompany their son to school, after spending about $50,000 on attorney's fees fighting the school district, and another $10,000 for training the dog, which was trained by Wilderwood Service Dogs of Tennessee.

The school district, which originally was willing to let Carter Kalbfleisch attend his home school, suddenly decided that the dog was not welcome. So the school quickly called an IEP meeting, passed an IEP without the dog being necessary mentioned in it, and insisted that placement be in a special autism specific school, rather than Carter's home school. The Carter's are going along with this placement for now, in order to get their son into school. But they are continuing to fight to get him placed back in their home school.

"I think it’s important for him to be in his own community with his local peers for him to look up to," said Kalbfleisch. "It’s very important for autistic kids for their communication skills and, later on in life, to get them interacting with people and into the real world."

It never ceases to amaze me the lengths (and expense!) that a school district will go to in order to fight a parent. When someone in the school district decides that they don't want someone in their school, they seem to have no qualms about spending obscene amounts of the taxpayer's money to fight individuals. In this case, the Kalbfleisch's have spent $50,000 so far. Further appeals will certainly take at least $10-$20K more. If the family has spent that much, the school district has spent at least the same (and probably more, as they often put multiple lawyers against the single one that the family provides). The special school that they are sending Carter to costs about $24K more than his usual school/year. So figuring conservatively, the school district has been willing to spend $85,000-$95,000 this year alone just to keep one service dog out of a classroom, with an additional $24,000 every year to keep him out.

It looks like a friend is going to be facing a similar fight against a school district, which has decided that it'll keep making the environment worse in order to force a child out of the family's preferred placement (their home school), in order to place him where he can be warehoused. Please drop by Kristina's temporary digs and lend a little moral support.

I've never met anyone quite so doggedly persistent as Kristina, and I know that she'll give this district a run for their money.