Tag Archives: autism

The Dangerous World of Autism

23 Jul

When I first ran across this story earlier in the week, it sent a chill through me.  Even almost a week later, it still elicits a strong sense of frustration.  I’m prone to living a rather solitary life any way, not wanting to get out and visit, travel or socialize overly much.  And stories like this tend to reinforce a general view that there’s no place like home.   This is my nightmare on so many levels.   I imagine almost every parent of an autistic child or adult is horrified at just this sort of scenario.  As a person who takes autistic teens out into the community, this is especially troubling.

Charles Kinsey did everything right.  He did everything in his power to protect the person he was charged with caretaking as well as protecting himself, thinking that if he kept his cool, kept his hands up he would not be shot.  But he thought wrong.   And as more facts became known, the excuse the police department gave was that Kinsey was accidentally shot and the real target was the 26 year-old autistic young man, Arnoldo Rios-Soto.  This is not at all reassuring.  The family is justifiably traumitized.  Rios-Soto refuses to take off his shirt, still stained with the blood of his injured caretaker.

This is the sort of story that traumatizes *everyone* in the autism community.  We generally don’t have a bias against law enforcement and would prefer to think of them as natural allies in helping to protect people who can’t protect themselves.  But this is an instance where the the pleadings of the caretaker seemed to be completely and utterly ignored.  He identified himself and told where he worked and what he was doing.  He complied with everything the officers asked.  But of course the autistic individual did not, but continued to play with his toy truck, seemingly oblivious to what was going on around him.  Until his caretaker was shot and BOTH of them were handcuffed.  This policy of handcuffing everyone is troublesome and I’ve had personal run-ins with this before with law enforcement personnel and students with disabilities.  Knowing that almost any encounter with the police will result in getting handcuffed might adds to the frustration.

It has been a rough couple of summers for people in law enforcement and I’ve generally been sympathetic to their cause.  They have a tough job and it isn’t made any easier when deranged and violent people are trying to hunt them down and kill them just because they wear a badge. Here in the Atlanta area, things have been especially tense with protesters on the streets, making it inadvisable to go down town because of the risk of becoming entangled in knots of anger and outrage.

But when did some prudence and common sense go so far out the window?   Couldn’t someone look through a rifle scope and see that it the toy truck wasn’t a gun?  Once Kinsey identified himself and started talking, couldn’t someone interrogate him from a safe distance in order to get more information and verify his story?  Call for back-up?  Fortunately Kinsey will recover, but the only reason no one is dead is because the officer missed.

Generally the officers in my town seem to be supportive,working with and within the community as whole in various charity and community projects.  But it is still hard to shake the images and emotions that a story like this evokes.  Am I going to have to devote an extra space on our AAC devices for “Hands up, don’t shoot”??  And as a parent, I might have to have a particular and peculiar conversation with my oldest not unlike what many other parents in the country have to do.






Autism, Post-School Transitioning and Beekeeping

14 May

As my oldest gets ready to complete his first year of high school, transitioning is a topic that weighs heavily on my mind.  It’s made more acute by the fact that in my business of being a special education teacher, I’m busy writing something called a “Summary of Performance” for all of my graduating seniors.  This is a document that is meant to capture all of what the student did in his/her high school years and then outline what resources might be available for those students when they transition into post-school life.

Here’s a newsflash for other parents of students with autism: there are precious few resources out there and almost all of those that exist are grossly underfunded, many with waiting lists that are measured in years.  Once a student leaves the world of k-12 education they are no longer serviced or protected by the law known as IDEA.  An IEP means nothing once they get out school.  There is the ADA and section 504 of the Rehabilitation Act of 1973.  But these are no guarantees of services, only guarantees of non-discrimination.

So my Summary of Performance will list myself, my lead, the transition coordinator and if I know where they might go to school or college, the contact information for the student support services.  And that’s about it.  Those with more involved or severe disabilities might have access to vocational rehabilitation services, but in Georgia those services are limited.  And underfunded.

I’ve written about the Summary of Performance before, in my IEP series.  That whole series is in need of an update, since I’m working with an entirely different population now, and some things have changed in the last 7 years since I wrote that out.  But Spaz, the object of that post, is a case in point for those with more severe disabilities.  When I saw him and his parent 3 years after he graduated, he was still on a waiting list for supported employment.  And this was actually a parent who had done some pre-planning.  Taz graduated a year later and I saw his mother in the store less than a year ago and he is still on the same waiting list– six years after graduation!!

This is why parents don’t like thinking about post-school transition planning because it is that depressing.  My oldest was only 9 when Spaz graduated, but it was still in the back of my mind.  Far in the back.   But time marches on.

Since that time, he is still mostly interested in trains.  Everything he does intentionally has some focus on acquiring some more model trains.  This is autism at its most classic.

So I’ve been working at finding the boy some sort of marketable skills.  The fact is, he can be a dependable and hard hard worker, albeit rather slow.  He really doesn’t complain at all about mowing my large-ish lawn with the push mower, no matter how hot it is because he knows he’s going to get paid.  And the whole time he’s mowing, he’s thinking about the new train set he’s going to buy when he saves enough money.  And since he’s looking at getting a Lionel train set, that’s a lot of lawn mowing because they aren’t cheap!

And this is the part where my other blog intersects with this one, as I recently got a bee hive.  Actually I bought the hive for him at Christmas and we just got the bees.  Just like the lawn mowing, his interest is making money to buy trains.  But he IS interested, and so there’s an opening there for expanding his interest into something somewhat marketable.

It doesn’t hurt that this is also an interest of mine.

In a more rural environment, a lot of autistic behaviors might have been written off as being odd.  Farm life generally moves at a slower pace, in tune with the more natural rhythm of nature.  The transitions involved in agricultural are more gradual as opposed to a more urbanized life that seems to involve a faster pace filled with more stress as things seem to be more time-sensitive.  Factory life historically meant doing the same thing over and over and over again and the transitions were extremely predictable.  Basically the workplace in earlier times was not nearly as hostile to someone on the autism spectrum as it is today, with a more service-oriented and socially driven economy.  It’s easier dealing with plants, animals and things than it is dealing with people.

Fortunately, the bees don’t require much space at the present time, unlike a herd of cattle.  I used to joke about having to get some cows when my boys got older so they would have some chores to do.  I didn’t realize it while growing up, and in fact resented it, but those farm chores I had growing up did help instill a work ethic that still serves well today.  And that background might be an entry into something meaningful and productive for the next generation.

The Newest Bee Keeper

The Newest Bee Keeper

The GF Diet

30 Nov

Anyone reading me for any amount of time on the subject of autism knows that I am the last person to capriciously recommend any sort of dietary intervention with the intention of curing autism.  Special diets can be time consuming and expensive and represent one more additional hardship on a family already challenged by the behaviors posed by children with significant developmental delays.  The evidence supporting dietary intervention for autism is anecdotal, at best.  The entire concept of “autism recovery” is suspect.  When we tried the diet several years ago, it failed in many ways with no discernible results.  Rather than look at it as a failure, we simply moved on.  Or at least I and the kids did, more or less.

A couple months ago, the dietary bit came up again as Jane* tested Thomas* for allergies.  The result was a bit shocking.  For the past 8 years we’ve been giving him soy milk for a suspected dairy allergy.  The tests came back and showed him totally off the chart for SOY allergies while showing very little reaction to dairy foods.  So that began changing things as soy is in everything that is processed.  Anything with vegetable fat contains soy and everything looking to boost protein which is most things.  So we have been reading labels quite a lot.  He also has a bit of an allergy to eggs as does our youngest son.  I could be, but I’m not suffering from any illness or discomfort so have never bothered to test.

Then we recently got tests back for Jane.  She is also allergic to soy (and has been drinking soy milk for years) in addition to wheat (and anything wheat-like), eggs and cane sugar.  Highly allergic.  So now we are going to have to be dieting.  Funnily enough, I have already been on a diet to lose weight last year that totally avoided all of those foods.  I also don’t mind eating the same thing everyday, which the boys are fine with but it drives Jane nuts.  She likes a lot of variety in her diet and has always been the most challenging person in the family to cook for because she easily tires of foods, even several served in a rotation.  Notable exceptions include things with lots of wheat and sugar.

The difference between our efforts now and years ago is that we have a definite medical diagnosis that is easily arrived at with a blood test.  This is different that trying to use diet to work on something like autism.  Certainly, allergies (and autism) are ubiquitous enough to overlap. Relieving allergic symptoms and reactions can certainly improve the symptoms and disposition of any person, autistic or not.  The proscribed treatment is eliminating the offending foods for 6 weeks or so and then reintroducing those foods to see what happens.  It is a classic A-B single subject experimental design and a body could do endless reversals in order to establish a functional relationship between the symptoms and the food.  This is jusy good science.  Assuming we can control the diet completely, it isn’t that hard to see if anything happens physically.

Anyway, the key to working this type of diet is to focus more on the things you can have, rather than trying to always substitute for things you can’t have.  I think this is where so many people and families get into trouble and it was our downfall.  Gluten-free bread is massively expensive on the order of $6-9 a pound.  The flours are also 4-6x more expensive than what a person typically pulls off the shelf.  But not every diet in the world revolves around wheat.  In fact, before Columbus, the indigenous Americans lived very well on things that did not contain wheat, soy, eggs, milk or cane sugar.  The primary meso American diet was based on corn and different bean proteins.  Tomatoes, potatoes and squash were all native foods.  So it is there where I have done some research and drawn some inspiration

The Asian diet was based on rice, but soy was a more major source of protein.

Here is a recipe for some tasty cookies that satisfy the dietary requirements listed above. Feel free to adapt and substitute as you see fit.

Dry ingredients:
– 1 c masa harina (corn flour)
– 1/2 cup potato flakes
– 1/2 cup oatmeal (There’s some controversy about the gluten free-ness of oats but Jane’s tests showed she was good for oats)
– 1 tsp baking soda
– 1/2 tsp salt
– 1 1/2 c dried fruit and/or nuts (I have a bag that I mix up that contain raisins, craisins, walnuts, pecans, almonds and a few other things)
– 2-3 Tbsp milled flax seed

Wet Ingrediants
– 2 eggs (Their equivalent in our case, Ener-G)
– 1/4-1/2 cup of oil
– 1 c light corn syrup
– 1 tsp vanilla

Mix each up separately and then all together.  Add more potato flakes if it is too runny. Spoon on to a cookie sheet and bake at 350 degrees for 9-10 minutes.  It makes about 1 1/2 to 2 dozen. Here’s a video of me and the whole process:

I made this thing out of my head from scratch and it came out pretty good the first time!  So the video was shot making a second batch.  The oil was a bit excessive so I ended up adding potato flakes off camera to thicken the batter.  It’s basically like an oatmeal raisin cookie and is supper delish.  The corn flour and flax seeds added a real novel depth to the taste, but that could be just me.

I made up a dry mix for pancakes which we tried tonight and they turned out really well.  In fact they went too well and the batch is almost gone already!

*Jane and Thomas are blognames that I used in my anonymous blogging days and just continue to use today.

PETA Cashing in on the Autism Fear Factor

7 Oct

I was trying to catch up on some blog reading and checked in with one of my favorites today (I don’t visit as often as I ought). I followed her link to the PETA website, and sure enough there was that abominable billboard, trying to connect dairy with autism. Once again, those who are peddling fear, misinformation and general ignorance are on the make at the expense of those who have children who are autistic. The exploitation of autism for personal or political gain knows no bounds, does it? Whether you’re an aging centerfold model looking for more attention and money or an organization looking to further a political agenda, autism is like an over ripe golden apple just waiting to be exploited and harvested.

A good deal of my outrage on this particular issue is personal. You see, I was raised on a dairy farm. Any kid who was raised on a dairy farm would laugh hysterically at the mere suggestion that dairy cattle are not treated ethically or humanely. These animals have to be among the most humanely and ethically treated creatures in the entire world! They are pampered to excess by their owners! Any proper dairyman (or woman) will tell you that the production of milk is as much of a state of mind as it is proper nutrition for the animal. They need to feel comfortable in order to produce the most milk. That means they have to be happy, non stressed and healthy. A happy contented cow is a major milk producing cow.

This is in contrast to the lives of those who are actually milking and caring for the cows. Happiness, contentment and lack of stress are not prerequisites for being able to milk a cow. My siblings and I hated milking cows. And yet, we were expected to do it. There is no such thing as a 5 day-a-week cow. It was 365 days/year. We couldn’t go on long vacations or travel more than 4hours from home as a family because we had to be back home to take care of the bloody cattle. Those cattle ruled over us! Everything we did was in service to their needs! So this crap about not treating them ethically is total rubbish. Chickens and pigs, yeah I might partially understand that. Perhaps even beef cattle. But not dairy cattle. PETA is off their rocker. But that’s not where the personal side of this story ends. Oh no, there is more.

About 16 years after I milked my last cow, I became a father to a boy on the autistic spectrum. He was all kinds of colicky and never really breast fed due to a stint in the NICU. Since his mother had a mild milk allergy, she figured his crankiness and reflux was due to him having a milk allergy. We never tested him for it, it was just sort of assumed. So he got the lactose-free formula and then when he started drinking “milk” he was drinking soy milk. All this occurred mostly before we even knew he was on the autistic spectrum. And for years, we never really questioned it.

Fast forward to 3 months ago. Jane decided to test Thomas for allergies because he complained about stomach ache and headaches at school. Those symptoms mostly disappeared once school was out, but Jane still went ahead with the tests. By the time the test results came back, Thomas didn’t really exhibit any physical symptoms of whatever was bugging him a couple months earlier. But the results were kind of shocking. The tests did show an extremely mild reaction to milk. However there was one thing that he was so allergic to, that it was absolutely and literally off the chart. Yep, that would be SOY! So, we are on a soy-free diet and he does drink regular milk but not without protesting sometimes.

And he is still autistic. He was before any of the diets and he’s remained so after whatever diet/fad we’ve tried. He’s on the somewhat mild side of the spectrum (or at least that’s what I’m hopeful of) but he is still himself. He does not need to be cured as much as he needs to be self-assured that he is okay. He needs to know that he is safe, that he can eat things without worrying whether or not whatever he eats is going to poison him. Paranoia is an extremely contagious condition, and unfortunately I know of no vaccine against it other than a good healthy dose of skepticism. Even that isn’t going to make you immune to fear, guilt, shame, worry, insecurity and other assorted neurotic psychopathologies that organizations like PETA are trying to introduce. Let’s face it; you don’t advertise without the hope that your message goes viral. PETA was trying to introduce a pathogenic virus into the consciousness of those who saw their billboard in order to infect the population with fear, shame and guilt by using autism as a primary vector. This is more dangerous and costly than West Nile or Bird Flu because it preys on the fear mongering already sown by other infectious agents who want to depict autism as a horrible death sentence.  Fortunately it was taken down but probabl not without already infecting a large segment of the New Jersey population.

I do wish the CDC would do something about the contagion that seems to grip and handicap any meaningful discussion of autism and those who have it.


Fosters: Australian for Attacking Autistics

3 Sep

It’s amazing how this web 2.0 stuff brings people from all over the world together. It seems as though I have gravitated toward Australian Youtube video bloggers as of late. One of them is AustDingo, who often posts things about autism. He has two kids on the spectrum plus he has his own diagnosis. But I ended up subscribing because of his off-the-wall humor and characters. Even from half a world away I identify with a lot of what he goes through as a father and just getting on with his life.

Recently, he got into hot water with his employer for making videos on YouTube as well as him talking about his own Autism. For some odd reason, this company seemed to think that they owned him AND his autism or something. He tried to comply with their wishes by removing any offending videos but they still sacked him. You can get the story in the links below. Also, these are nsfs (not safe for school). Apparently Australians have a great love for certain descriptive four-lettered invectives:

The Fat Australian: gives a good (but very salty) overview of the situation

Austdingo 1: In his own words

Austdingo 2: where he talks about how the company claims to sort of “own” his autism
This wrong on so many levels. First, there’s the whole sacking of someone for their own exercising of free speech. I have no idea what sort of “Bill of Rights” australians have, but always figured they had s love of liberty at least as much as Americans. They certainly seem to like to express themselves in colorful ways. And then, there’s the claim that they were offended because he wore shirts with the company logo. I never noticed at all. Beer does feature in his videos but he’s rarely made that big of a deal about it aside from drinking it, which is another hallmark of many Aussie videos. It’s singularly odd that they would go off for these infractions that seem fairly minor.

Whatever their publicity problems caused by Austdingo’s videos, they now have a much bigger disaster in the making if this thing goes viral. And it does have some elements going for it:

– It’s a beer company that is well-known

– The autism angle is very popular nowadays

– It’s a direct assault on free speech and disabilities at the same time.

Austdingo is not a big player in the Youtube world (a fact he pokes fun at all the time) but that makes the “little guy vs big callous corporate entity” all the more appealing. This is the first time I’ve heard of someone getting “dooced” for Youtube videos although I’m sure it must have happened many times before. Still, I think getting fired for posting Youtube videos should be called “getting dingo’d.” It just has a nice ring to it.

One confusing and vexing aspect was when dfer (D fer Dingo) explained how one of the reasons they gave was his use of a letter he had from a psychiatrist describing his diagnosis of autism.  Apparently they went after him because they claimed some sort of rights to that letter, thus sort of trademarking his autism!  That is just crazy.

My heart and support goes out to Dfer, Tfer, Mfer and Trav who have had their fair share of struggles even without this. They are a lovely family and you can go by and give Austdingo your support by just leaving a nice comment on one of his videos.

And shame on Fosters.  What they did is neither Australian or American.


Using Video: Information is Power

9 Jun

Since school is out, I’ve been having the time of my life, exploring new mediums and modes of expression and teaching. I took over an hour of footage before school let out and am taking some time to edit and post them to TeacherTube. But I’m also connecting within the YouTube community. I’m planning on doing more creative things on YouTube, which means not everything will be as “professional.”

The great thing is watching what other people are doing and how they are doing it. I was talking to an assistant principal awhile back and letting her know some of the things I was doing. “You mean they have educational videos on YouTube?”

Yes, yea they do. In fact, YouTube is a treasure trove of knowledge and information. Yeah, I subscribe to an X-men cartoon channel and Al Yankovic’s “White and Nerdy” video is among my favorites along with the Guacamole Ukulele song. Kind of a theme going on there.

But there is a world of knowledge out there waiting to be discovered. My one subscriber, so far, is Dr. Melvin Koplow aka drmdk. His YouTube channel is here. There’s some good information there, as he got the idea to videotape short interviews with doctors and experts from a variety of fields and disciplines, making medical information available to anyone. The information is fascinating and cutting edge and he is truly on to something. I will warn you that it helps to have a keen interest in the content, as the interviews and videos are a bit on the dry side, but they are also less than 10 minutes long each. And in these videos, especially in the autism section, you can see what the doctors and experts say.

While information and knowledge is power, it’s up to individuals to decide whether or not they want to be ignorant. Hat tip to Liz who found a good article about the costs of unproven and sometimes dangerous treatments for autism. Dr. MDK does cut through much of this with a number of his videos on the subject. In fact, one of the the reasons Dr. MDK started making these videos is linked to Liz’s latest blog entry here. You can see Dr. MDK talking about why he’s making these videos here. He talks about how there are ghostwriters done by people who didn’t even do the work or research. There is something about having a face and a voice attached to the information instead of just a written page.

And that’s part of what I’m doing. I’m putting myself out there, where you can see what I’m doing and who I am with real, actual students. You see who I am. This isn’t just some anonymous blogger anymore. It’s someone more real. Back when I posted my Fleecing article, I initially got a lot of comments from people who agreed with it, but as time wore on, more and more parents started commenting and many of them stated how these controversial therapies had helped or cured their kids.

Where’s the before and after YouTube videos?

I have some that I’m working on, and you can judge for yourself. Before and after videos are one reasonable measure of validity, according to Kazdin’s authoritative work on single-case research designs. But I haven’t seen any. Why isn’t this very simple method used to lend at least a minimum of validity to any of these treatments? Because there is none? That’s not to say that method alone would be sufficient to prove anything as much as support some of the ideas. Yes, YouTube could be a vehicle for helping promote legitimate treatments for autism. You can look and see several videos of kids getting behavioral therapy and track the progress yourself of some of the kids.

There’s good information out there, it’s just a matter of finding it. Or better still, creating it.


Discrete Trial Training (DTT)

4 Jun

In making my course for teachers and paras for students with severe disabilities, I’ve been looking for content related to what we do in the classroom. Today I decided to work on Discrete Trial Teaching (DTT) sometimes also called Discrete Trial Instruction (DTI). Same thing, different name.

I prefer video over text alone, so I went first to TeacherTube, since the school system doesn’t block that site. However, the only video there on the subject is the one I posted. Oh well. YouTube is a better source for videos on anything and a search there was much more fruitful. Here’s one working with a very young child. No matter the age, the same rules always apply. Keep the instruction consistent, reinforce independent responses, and record the responses for data analysis. The YouTube video gives very comprehensive, yet concise instruction on the topic and I’d love to use it.

There is also a series of Lovaas training videos on YouTube which are much more advanced, behaviorally speaking, but the one listed above gives a better overview in a lot less time . Part 1 shows how not to do it in the beginning, which you can see from the comments elicited strong reactions from a few viewers. It’s a bit dated, but you get a good view of a purer form of DTT from the Lovaas people. There are many YouTube videos in a variety of languages worth looking at and these are mostly used for and by parents. Teachers and paras really need to tap into this information, too.

Typing in “ABA” reveals a lot of videos showing it in action, mostly with very young children with autism. DTT is not the same thing as Applied Behavior Analysis (ABA). ABA is more of a global description of a system. It’s sort of like referring to “rain” as “weather.” Yes, rain is weather, but it’s only one aspect of weather and even precipitation. Weather encompasses all manner of meteorological events including wind current, barometric pressure and the jet stream. ABA encompasses a whole lot more topography beyond just DTT, but a lot of people outside the field confuse the two.

I recently put a couple more videos up showing some of what I do with a type of DTT here and here. This is also serving as a sort of tutorial in modeling for para instruction at the same time instructing the student. I probably need to make a more explicit para training video since that is a big issue for most special ed teachers.

I like DTT because it is straightforward, and something that paras can learn and do pretty easily. It can yield some good data and works well with short-term IEP objectives. It is something that is not expensive to set up, and it is accessible to anyone who wants to learn how to do it.

Catherine Maurice’s Behavior Intervention for Young Children remains one of the best and most accessible resources on the subject even though she makes the common mistake of confusing ABA with DTT. Many of these interventions can be used with older students with severe autism and you’ll recognize what we do in the videos compared to what is done with the youngsters. It’s only been within the last 10 years that DTT really took off in the autism community, so students in high school were probably never exposed to this behavioral technology at a younger age.


A Word or Two About Parent Advocacy

20 May

I have new videos posted on TeacherTube! On one, I began a rant on the onerous IEP process that parents never see, which is all the work that goes into preparing these things. It turned out to be more of a rant on goals and objectives, though. I’m also playing around with Movie Maker effects to make it slightly more interesting.

From the autism walk, you can see CJ singing the National Anthem! I don’t know him that well, but I’ve always looked at CJ as being pretty severe as I’ve never heard him say anything! But seeing is believing, and there he is singing just as well as ever, and pretty much stayed on-key the whole time with no music to help him. Is it true the national anthem is one of the hardest songs to sing? CJ made it look pretty easy! Plus there is a presentation by Kimberly Rockers where she talked about genetic links to autism. Yeah, that’s my oldest running around and standing in front!

But I want to do more than just post updates, as I have some actual thoughts to blog about. And this time it is about parent advocacy. I ended up on the other side of it recently, and it was more traumatic and harrowing than I would ever have anticipated. Part of the reason was that it was very much unanticipated.

If you want to raise the blood pressure of the teacher, waiting until the IEP to spring all sorts of concerns and complaints is one way to do it. But you’re going to pay a price for that tactic, which is some resentment from someone who could be advocating with you. Is it worth it? Sometimes it is, and sometimes it isn’t.

When going through the IEP Process, I advocate the teacher and parent working together hand-in-hand and step-by-step, collaborating on providing the best services for the student. “Best” in a public school is a relative thing. The first, greatest and best teacher for your child is YOU. Not the teacher, the SLP the OT or PT. It is YOU, the parent. No one else has the time that you do with your child. No one else cares as much. No one else has the motivation that you have. No one else has the knowledge you do. No one else has the intimate relationship and attachment that you do. And more often than not, many of these other people you rely on to provide services have their own children to care for and feed. During school time, you want these other people to be effective in helping your child to meet their potential. Meeting potential in the school system nowadays means accessing the regular education curriculum. Math, English, social studies and science are what we’re supposed to be teaching. Communication, mobility and other skills must fit into that general education context. Folding laundry and washing dishes are not part of the general education curriculum. Those days are disappearing. Write your congressperson if you feel differently. I have.

One area of contention I had to endure was Extended School Year or ESY. In my view, given what I said above about the parent being teacher #1, ESY makes less sense when you consider that the person that is going to be delivering services is not necessarily the child’s teacher/therapist. It is also probably not going to be in the same location and it is not going to be following the same schedule as the regular school year. Different setting + different teacher + different schedule + different bus + autism = …..progress?!??!

Think again. A child would do much better to have services done in the home or staying with family for the summer. As it is, it is a recipe for behavior problems all the way around and NOT a recipe for progress. Some people are wild about providing social skills instruction during the summer. I can say from reading the research that the efficacy of even the best social skills programs is suspect, at best. But I see more and more parents advocating for it. So let’s plug in a novel peer group into the equation I just outlined above. You have a sudden, severe series of transitions that will be repeated at the end of the summer when they go back to school. Are you really doing your kids any good? I don’t know. You decide.

When I see this sort of “advocacy” it begins to look more and more like the parent simply wants the school to raise their child for them. It is also the failure to see the reality that school services might be able to make progress but school services are not a cure!

As parents, we didn’t ask to have children with disabilities. We’re sending the best children that we have. I just want to make sure that my children have the same access that other students have to an education. However, I do not rely on the schools to teach my children everything. His mother has really done most of the real grunt work when it comes to his education. And she has done a stellar job of it. I’m realistic enough to understand the limitations of public schools in that they do not have the resources to do everything demanded of them. I believe that parents need to step up and take the responsibility for educating their children. The school system is there, but it is not the main education agent nor should it be. We, as parents, need to step up. And if you are a parent of a child with disabilities, you’re going to have to be twice as diligent. Does that mean being more diligent in getting your child services? No. It means learning how to do the things service providers do, and do them yourself. The best therapy my son ever got was after we were able to watch what the therapist did. We have video of his OT, SLP and PT therapists working with him, and we were able to replicate what PT, OT and speech were doing at the private therapy clinic. The light bulb came on in my mind when I saw my son participate a Georgia State study with Mary Ann Romski, and I saw exactly what the SLPs were doing. In fact, much of her research revolves around training parents how to implement interventions.

I’m a big believer that if parents are given the knowledge and tools, they can be the ones who are making the real and significant contributions to a child’s development. Fighting with the school system simply saps your own resources and energy that you could devote to more meaningful activities.

The experience of being rolled over was an exercise in humility. I’m not as good as I thought I was. I am not a special ed. wizard. I’m one person, trying to do the best I can within my own limitations and I have a lot of those. I’m not able to cure anyone, and I’m sorry if I gave the impression that I could. I’ve come to realize that the best I can do is to extend the hard work parents have already put into raising their kids, not the other way around. Nowadays, people often talk of parents needing to support their schools and teachers, which I think is backwards. The parents are the primary educational agents in the lives of their children, and the school plays a supportive and augmentative role. I’ve been around enough to see what happens when family support at home breaks down. Performance at school also slips and behaviors worsen and little learning takes place. So teachers and parents need to be supportive of each other.

So when you are advocating, just what exactly is your expected outcome? If it’s a cure, you’re going to be frustrated pretty much all the time. If it’s for everything you want, you’re going to be frustrated all the time because even when you think you’ve gotten it all, there’s going to be a missing piece. Perhaps you get the para support but the para is untrained and lazy. Or perhaps you get an untrained teacher. Training these folks takes time. Are they going to spend school time getting the training? That’s less time with your child. Is it over the summer? Oh wait…you want them to do ESY! You’re going to have to break in and break countless teachers, paras, therapists and administrators as you fight and battle your way through your child’s school years. Because I have seen more than one teacher move on to another setting rather than continue battling a contentious parent, especially with the prospect of having to be locked in battle for years in the self-contained setting. Let’s face it, I am not up to the task of fighting with the parent of a 16 year-old until that child is 22. Quite frankly, some of you are bent on being angry and frustrated and seem to be conditioned to making everyone else scared, angry and frustrated.

As a parent I have had skirmishes with teachers on a few occasions, usually when the teacher wants to put the child in an overly restrictive environment when they have no data to substantiate such a placement. Basically, if the school starts making noises about putting my child in a self-contained setting, they need to show me something more than just an opinion. Sometimes a parent wants to try a less restrictive setting, and I admit I get nervous about that with my students whose functioning is measured in months. There’s the whole fear that they’ll be victimized by some of the street-wise kids. But you want to try, go ahead and try. Perhaps it will work. I’ve seen good things happen when severe kids are around those less severe. But transitions can be rough.

I’m interested in hearing/reading stories from parents whose advocacy has helped turn a situation around. Perhaps you managed to turn a bad teacher into a good one? Or maybe you’ve battled for years and finally got everything you wanted and it turned out the way you wanted. I have heard of parents who battled until they eventually got a teacher they wanted. I’ve been on both sides of that one, as a parent getting good teachers and as THE teacher some parents wanted.

But I am not all that, as either a parent or teacher. No super teacher/parent here. I can write about it better than I can actually do it! In fact, this is not as much me choosing this life as it is the life that has chosen me!


Catching up

17 May

I’m trying to catch up on a lot of things this weekend.  One of them is rest, as I am currently on the downhill slide of a death march, which involves finishing up all the junk teachers have to do to finish a school year.  We have a ton of last minute IEPs, mostly by teachers who procrastinated too long and are so far behind.  Next week is a 6 day work week for high school teachers as we have graduation on Saturday that we all have to work at.

I’m in the process of getting over a cold, which is largely caused by stress.  I’ve been getting home wellinto the evening every night because of the massive amount of paperwork.  I had one parent in particular who really went after me and I may blog more about that later as it demonstrated how to get what you want while you alienate a teacher who wqs otherwise sympathetic to the cause.  Basically participate in a full-scale ambush.  I’m glad when kids have parents that are good advocates and generally am happy to work with them.  But when an adversarial relationship is insisted upon which does no good except guarantee that I won’t get to see my own kids, then we might have some difficulties.

I’m also working on video, audio and pictures for Covington’s 4th annual Autism Walk!  I got some really good footage, not to mention a nice t-shirt!

Good stuff ahead!


GFCF – Re: Unraveling the Mystery of Autism

11 May

Re: Unraveling the Mystery of Autism

I wish I had time to read a book like this, as I know a lot of other parents are reading it. However, I did manage to find the most top-rated review of the book by someone who DID read it, and her response is much better than anything I could have written.

Would that it Were so Simple, October 6, 2000
By Liane Gentry Skye, “www.lianegentryskye.com” (Florida, USA) –

Karen Seroussi has woven a remarkable, well-written story of her son’s recovery from Autism through tedious dietary interventions. Her offering of recipes gives the parents considering the diet for their children a place from where to start. As the mother of two Autistic children myself, I felt compelled to read it, even though a grueling 18 month trial of the diet in our home offered few, if any, results, other than depriving my sons of what foods they were willing to eat.
Seroussi is a gifted writer, and tells her story from her mother’s heart. But facets of her story disturbed me deeply. After reading this book, I felt my choice to live as a mother who has come to accept her children’s Autism and lead them towards a good life in spite of grim prognoses was viewed by the author as something to feel ashamed of. While this may not have been Seroussi’s intent, the insistence that something is wrong with parents who don’t try her techniques, or tried the diet and had it fail are somehow lacking was very bothersome to my heart.

Granted, dietary interventions have helped many Autistic children. However, this his book implicates that any parent who does not attempt the diet which benefitted Ms. Seroussi’s son is failing his/her child. Children who respond to diet are most specifically those showing a serum IGE response to specific allergens and gliadin antibodies. I’d strongly recommend any parent who considers putting a child through such a restrictive regime will get the bloodwork done first. This diet is not easy to implement and it is not easy to encourage an older child to follow it when away from home.

This book tells a rare, triumphant story. It is well documented, and worth a read. But please, don’t see diet as a cure-all if the techniques outlined simply don’t work for your child. The sad truth is, if diet were the cure, there would be no Autism.

I felt the need to blog on this because I had a parent of one of my students who wanted to try this diet bring the book up. I gave her what you read above plus a link to my blog so she can see whatever comments this particular article generates. And it will probably generate a few.

The Gluten Free Casein Free (GFCF) diet is controversial for a lot of reasons, most of which are covered above by Ms. Skye above. I do have a study that was done on dietary intervention for autistic behaviors and it did seem to indicate that the diet might be helpful:

Knivsberg, Reichelt, Hoien and Nodland (2003) Effect of a dietary intervention on autistic behavior. Focus on Autism and Other Developmental Disabilities, 18, 247-256

Autistic syndromes are characterized by impaired social, communicative, and imaginative skills. Urinary peptide abnormalities, in part due to gluten and casein, have been detected in some individuals With autism. These abnormalities reflect processes With opioid effect, Which may explain the behavioral abnormalities seen in autism. The aim of this single-blind, controlled study Was to evaluate the effect of a gluten-free and casein-free diet for children With autism and urinary peptide abnormalities. Observations and tests Were carried out With the 20 participanting children before they Were randomly assigned to either the diet or the control group. The experimental period Was 1 year, after Which observations and tests Were repeated. Significant reduction of autistic behavior Was registered for participants in the diet group, but not for those in the control group.

It’s the best study I’ve ever seen on the subject, but it still has flaws that you can read for yourself if you want to get the full article.

My wife and I did try the diet when our son was younger. It was not the best of efforts and it was resisted strongly by Thomas (I’ll keep his blog name the same to avoid more confusion than there already is!). His favorite food of all time is pizza which is pretty much nothing except gluten and casein. His favorite thing to do of all time is to eat out at the neighborhood pizza buffet. So right off the bat, we were off to a poor start. Let’s add a couple of other things into the mix:

  • – He has a younger brother who likes pizza, hot dogs, cheese burgers and other more typical “kid food.”
  • – He has a mother who basically likes the same sort of diet.
  • – We were a single-earner family, and that would be me on a teacher’s salary.
  • – We had a lot of other things going on just like everyone else

The cook in the family is me, and I resisted the diet for a long time because of the bother and the expense, but my wife, Jane (We’ll keep her blog name too) convinced me to try it, especially after I read the above study. So I did more research on the subject and did some thinking.

Wheat is not native to North America, so the people living here before the arrival of Europeans had to live on something else. That thing was maize (corn) and a variety of vegetables and potatoes which *are* native to the Americas. So it seemed like a more simple task for us to adapt to a more native diet as opposed to trying to find adaptations of a European one. I was thinking outside the box, but apparently ranged too far for the rest of the family. I did by the corn and soy-based noodles and flours and assorted other GFCF foods.

The entire family, including Jane, rebelled and none of them really went for it. They were sneaking donuts, cheese, pizzas and every type of forbidden thing every chance they got. The thing about doing this sort of diet is that “in for a penny, in for a pound.” You are either all in or all out. Having ANY gluten at all basically kills the whole process. This is not about scaling back or reducing intake it is about going cold turkey! So the entire family really has to be on board for it to work, and it was a forgone conclusion that by the end of our experiment the only one who stayed gluten free was me. That’s because I liked the things I made with corn tortillas and I don’t mind eating the same thing almost everyday. For everyone else, it was not a happy arrangement. The corn and soy noodles are probably still in our pantry as is some extra GFCF pancake mix.

Will a parent see improvement? Some will and some won’t, but this is not a light undertaking. A body has to be willing to go all the way with it, which our family was not collectively willing to do. And you know what? It’s all right. We are not poisoning our children by letting them eat the food they enjoy. We balance our meals with fruits and vegetables every meal. I grow a lot of my own fruits and vegetables in our own garden. Our family is okay and I might venture to say we are doing well because we are a more balanced family that has gotten away from letting autism rule over our lives. It’s something we live with and deal with but we’re not going to let it dominate us and get us all down. Parents who don’t want to try every single intervention under the sun shouldn’t feel guilty for not doing it anymore than I should be made to feel guilty about not getting LASIK surgery for my eyes. I have bad eyes and I wear glasses. My choice. If Thomas decides he wants to go on the diet later in life, that’s his choice. What about those autistic persons who can not make their own choices? Then caregivers do have to make those choices and make it on the best information available.

But let’s knock off the evangelical guilt-mongering by the various proponents of various cures. If you have a cure, conduct a study and publish it and open yourself up to some serious scrutiny.