Monday, April 30, 2007

Just a Nice Day

We Love Fountains

It's been a hectic couple of weeks around the clubhouse lately. We had an incident almost two weeks ago that scared us, and I still can't write about it (maybe later). Let's just say for now that sleep (and the lack of it) has been a major factor in all of our lives lately. This has left us on edge while we prepare for an upcoming IEP meeting. Buddy Boy's days have been up and down, and all of our nerves have been on edge.

I took a bike ride this morning (I often go out on Sunday mornings-it's kind of like rolling meditation for me). Then I took the kids on a ride when I got back. We went to the park on our bikes, and it worked out fairly well. Buddy Boy rolled off the sidewalk a few times and crashed on the way to and from the park (the sidewalk's fairly narrow), but he didn't have any escalating meltdowns (just a couple of short easily controlled ones) and we all had fun.

After we got back and cleaned up Liz suggested we all go to the local botannical garden for a walk. It was a beautiful day in the land of Club 166. It was in the low 80's F (28-29 C), not too humid, and sunny. A bit warmer than usual for this time of year, but a great day for a walk.

There's just something about a walk in a garden that just helps lift burdens from your shoulders. It's really hard to be upset when you're surrounded by such beauty. There were a lot of nice azaleas blooming, although there were also quite a few that had suffered in a late freeze that we had a few weeks ago. But the blooming ones made up for those that had their flowers damaged.

Buddy Boy said he liked the flowers when asked, but spent most of his attention on the fountains, water lines, and rocks. He has always loved fountains. About the only thing he likes better than a functioning fountain is one that has been drained, so that he can see all the pipes and nozzles and such that are usually underwater.

We walked thru the Japanese garden, and the kids (and I) fed the koi. The kids knelt down at the water's edge and fed the fish, and didn't even fall in. Truly a success! Sweet Pea complained some about being tired of walking, but managed to do alright. She's the toe walker in the family. She's worn splints and had her legs casted for 6 weeks last year (she was also the only 3 year old I know of to get Botox injections), but still has to be reminded to pick up her toes and walk on her heels. She's also just not as much an outdoors person as Buddy Boy is. He'll hike all day (although he likes to stop a lot and dig and such-but hey, that's what hiking in the outdoors is all about, right?). But Sweet Pea balks at walking any more than around a mall. She'll be a perfect teenager.

The $8 admission for Liz and I (kids are free) was cheap therapy. We spent a couple of hours surrounded by beauty, with a soft breeze, sunny skies, and the sounds of running water. Who could ask for more. The kids were fairly well behaved (for siblings), and both had a good time. Just the bit of respite that we needed.

Saturday, April 28, 2007

Mixed Emotions

photo-Buddy Boy on a zip line

Tonight we went to a gymnastics event. It was a fundraiser for Autism Speaks (indirectly). The fundraiser was sponsored by Buddy Boy's school, who sponsors a team annually for the Autism Walk in our town each year.

The walk used to raise money for NAAR (National Alliance for Autism Research). NAAR is one of the organizations that Autism Speaks has merged with/absorbed. Thousands walk each fall in the annual Autism Walk, and it's a big deal. Teams walk and raise money thru pledges and other events, such as the one we attended tonight. Now that NAAR has been absorbed into Autism Speaks, the money goes to them to sponsor research.

Like many, I don't feel that "Autism Speaks" for me. They propagate a message that portrays autistics (my son included) as a damaged, hideous individual, who should have been prevented if possible. There are certainly some within Autism Speaks who do not feel this way, but their videos are denigrating to autistics, to say the least.

The event tonight was sponsored, like I mentioned, by Buddy Boy's school. Buddy Boy is in a special ed class (with a minimal amount of "push in" time into a regular class) at a regular public school. The school as a whole sponsors a team for the Autism Walk each year. I'm sure that the majority of the people that are on the team are good, well meaning people. And if all the money raised goes to legitimate research, I wouldn't have much problem with it (though I do think more money needs to be spent on education, and less on research).

Most of the people I know locally in the "autism community" are nice people. Sure, some of them are into biomedical treatments (I don't know of any chelators or HBO users), and many still feel (from reading a local listserve) that thimerasol/mercury is the primary cause of autism. But most are very similar to the majority of parents I know thru this blog, working every day to take care of and educate their kids, and fighting the same battles with the school system as we do.

So it's with mixed emotions that I go to events like tonight's. It cost us only $10 a person for each kid (parents were free). The gymnastics center donated their space, time, and personnel to assist in the event. The kids have both taken classes at this facility, and I knew that they'd have a good time (they actually both had a great time). And it's a nice way to socialize with some of the other families in our community (like many, socializing of any sort is rare for us). Just being able to get out and talk to others in similar situations to oneself is somewhat cathartic (it's almost as good as blogging :] ).

But everywhere I look during this "Autism awareness" month of April (here in the states) it seems that the predominant image I see is that of Autism Speaks. The majority of events that are fundraisers seem to be raising money for them. And their message is not the one that I'd like to see be the predominant one when it comes to how autism is represented to the community.

Perhaps as Autism Speaks matures they will come to have a more inclusive and positive message. But until then I have to decide if I will walk in the Autism Walk this year. I'm thinking that I probably will (to show solidarity with local families), but if I do I'll then have to decide what t-shirt to wear for the occasion. Depending on my mood, I could go for either one advertising autism-hub, or if I'm feeling more radical, make up a custom one with "Exclusion=Extinction" stenciled on it (as suggested by Zaecus Celestis in a comment to this post)

Tuesday, April 24, 2007

IEP's and non-academic goals

Photo credit- kirkland73

Somewhere this last week, on someone's blog, I read about a person's son having services dropped at school because he was doing well academically. I've been looking all day, and now can't find whose blog it was on. I like to link to the original sources of the ideas I get, but can't find it now.

As I recall, the blogger in question raised the quite legitimate questions of what about preparing their child for "real world" skills. Things like communication, independent transportation, doing laundry, etc.

Indeed, the closer one's child gets to "aging out" of the educational system and the few supports it provides, the more one's mind turns to the question of "What's next?" and "Is he prepared?". Susan Senator, on her blog, has recently been advocating forming a new organization called "Autism Works" to deal with some of the challenges that autistic adults face.

But rather than talk about future projects (which I totally support and feel are worthwhile), I'd like to talk about what the IDEA law says now about services to prepare your child for living in society. My apologies to non-US readers, as this law applies to the US only.

First of all, one of my favorite disability law reference sites, which I reference a lot is It's a one-stop smorgasborg of just about anything that you would want to know in regards to disability rights law.

As dull and boring reading law is (I always thought practicing law would be fun, except for all that dull, boring reading I'd have to do), there is a lot to be learned that is useful when going into an IEP meeting. The IDEA 2004 regs are finally in effect, and some of the things that this latest iteration says are actually good for us.

One of the things that struck me when I read that post on the other blog last week was the old (but still used) dodge of "If they're doing well academically, they don't need services." That is, of course, patently absurd. This was not true before the IDEA 2004 was released, and is even less true now.

From the Wrightslaw site:

...The requirements about using present levels of functional performance to develop functional goals in the IEPs of all children with disabilities (below) are in IDEA 2004, the federal special education regulations, and the Commentary. ...

Furthermore, the idea of "functional goals" is addressed:

...Functional means nonacademic, as in “routine activities of everyday living.” This clarification should help IEP Teams understand that the purpose of the IEP is to prepare children with disabilities for life after school. this should also help the school understand that teaching children how to "function" in the world is just as important as teaching academic skills.

"It is not necessary to include a definition of "functional" in these regulations because we believe it is a term that is generally understood to refer to skills or activities that are not considered academic or related to a child’s academic achievement. Instead, "functional" is often used in the context of routine activities of everyday living." (Commentary in the Federal Register, page 46661) ...

So this basically says that all children with a disability need functional goals set for them in their IEP. And these goals are to help them prepare for life after school, not just to function in school.

Another useful change in IDEA 2004 is the change in definition of the term "Transition Services". Again from Wrightslaw:

...(34) TRANSITION SERVICES - The term `transition services' means a coordinated set of activities for a child with a disability that--

(A) is designed to be a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child's movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation;

(B) is based on the individual child’s needs, taking into account the child's strengths, preferences, and interests..."

(Note: the underlined words are new in IDEA 2004) ...

By law, transition services have to start no later than when the student turns 16 years old. So it appears that the law, like society in general, is starting to move towards consideration of what happens after a person "ages out" of the special education system. At least the law is supporting providing meaningful training of students for life after school.

Even though Buddy Boy is only 7 now, I know the time will come very quickly when we will need to make some major decisions about how he will live. A lot will be determined by how much progress he makes over the next several years, as well as what his preferences are (further schooling vs. joining the workforce, living at home vs. somewhere else, etc.).

Now we just need to get laws passed that actually provide support for autistic adults.

Monday, April 23, 2007

IEP's are like ...?

photo- this morning on my cell phone

One of the blogs I follow on a regular basis is by Joeymom. She's a great mom who teaches art history in Virginia (and how could I not like a mom who names her kid Joe?). In one of her recent posts, "The Parent Role at an IEP Meeting", she very humorously recounted how being a parent at an IEP meeting is like being a passenger on a plane.

...However, on an IEP Flight, you as the passenger are also expected to understand how to fly the plane, serve the other passengers, and have full knowledge of how to maintain and even fix mechanical and other problems mid-flight. If an engine falls off, you're expected to know how to safely land the plane, re-attach the engine, and get the whole mess back in the air. The pilot won't set course or work the instruments unless you spefically request that s/he do so, and then often says they don't have the resources for working the controls anyway, and besides, do you really NEED to work all those buttons, levers, and gauges? Can't you see fron the windshield where you are going? When you go to find resources to help, you find a flight simulator; but you soon find it is either for an outdated cockpit, a simplified cockpit, or when you go to actually request the controls be worked properly, you are told that you just had simulator training, the pilot has had real flight time! So you try to sign up for flying lessons. Now you're told that you're still just an amateur. But they still won't work the controls unless you specifically ask them to do so, and say exactly what to do and exactly when. ...

While I found Joeymom's description very amusing, I thought it was not quite right, as the flight crew on a plane are personally invested in having a safe flight for themselves, as well as the passengers. If the plane crashes, they're also out of luck. That's not true with our kids' educations. I suggested that perhaps IEP's are more akin to being forced to work with a contractor who only builds wood houses, except that you have supplied him stucco to work with.

While out on a bike ride this morning, I was thinking of another analogy of what it's like to work with the IEP "team".

Say you are a cyclist, and a new road is being built in your neighborhood. The law says that cyclists are entitled to ride on the roads, but most motorists in their cars are not cyclists, and don't particularly appreciate having cyclists "clogging up" their roads. You have to go to the municipal meeting/department of transportation/whoever is in charge of building the road to convince them of what they need to do to make the new roads friendly and accessable for bicycles.

The problem is, although people on this committee have read about cycling and road construction, none of them is a cyclist, and many of them also feel that you are asking for something extra when you are talking to them regarding things such as bicycle friendly road grates, bicycle lanes, and traffic signal sensors that recognize cyclists.

The people on the committee also let you know that they are the professionals, not you, so you should just leave everything to them. They seem not to be able to comprehend plain language suggestions made by you, and insist that everything be put into the technical language that they are accustomed to using.

The committee tells you that there is only so much money for road construction, and they can't afford to spend so much accomodating cyclists. After all, they are already putting in curb cuts for wheelchairs, why should they also have to spend money accomodating you, too?

And all you keep asking for is a way to get to your destination using your bike.

So, how would you describe an IEP (or whatever your country's equivalent) meeting?

Friday, April 20, 2007

Under Pressure

photo credit- =Doy

Hyperbaric Oxygen Therapy (HBO, HBOT) has been proposed as a "cure" for autism. There is a little theoretical basis for this, if you consider autism as a form of brain damage. There are some papers (but no conclusive evidence) that HBO may be beneficial in patients with acute and chronic brain injury, as well as multiple sclerosis and cerebal palsy. None of these indications is supported by one of the major professional organizations involved with HBO, the Undersea and Hyperbaric Medical Society (UHMS), as the only papers with proper controls show no definite improvement. The UHMS holds open the possibility that certain subgroups of brain injured patients may be shown to benefit from HBO.

Classically, HBO was first instituted as a treatment for divers suffering from "the bends", which is caused by too much nitrogen dissolving in your blood under pressure when diving, then "bubbling out" into your joints (and other spaces) when you surfaced.

The indications for HBO have been widened to include things such as air gas embolism (bubbles of air or other gases in your brain or other places they don't belong), carbon monoxide poisoning, certain soft tissue and bony infections, to promote healing in problem wounds and skin grafts, and brain abscesses.

I recently saw an announcement that a hyperbaric center was going to start a study of HBO use in autism. As I don't completely discount that it might have some effects, studying it would be a good thing. Then I took a look at the announcement:

...The Hyperbaric Medicine Center's Autism Study begins this month with 20 children, and each child will be treated with 20 hours of hyperbaric oxygen therapy. Each child will be tested by experienced clinicians in the community both before and after their 20 hours of therapy, and the results are expected to be published by late June, 2007. ...

While you certainly can't believe everything you read in the paper, if this is the stuy's design, it sucks. There's one thing worse than no scientific data on a subject. That's data obtained from poorly designed and poorly performed experiments. I see no mention of a triple blind (subjects, people performing interventions, and testers all blinded to who got what) study with a placebo control group. Without such a design, you can't believe anything that comes out of this study.

I've been vaguely aware that HBO was being advocated by some for treatment of autism, but was unaware of how widespread this practice was, and how exactly it was being instituted, until Autism Diva pointed me to an old post of hers on the subject.

I had previously believed, when I heard that parents were using HBO to treat autism, that they were buying time at recognized hyperbaric chambers. These chambers are often located in hospitals, are staffed by professionals, and are costly to operate. Silly me.

What most people using HBO in autism are using is the Vitaeris 320, which is billed as a "Mild Hyperbaric Chamber". These chambers develop pressures up to almost 1.3 atm (the equivalent of being at the bottom of a 11 foot swimming pool) rather than the 3 atm (66 feet) or more capability of "real" hyperbaric chambers.

The Vitaeris "chamber" is really a pressurized zippered bag. It was originally designed as a portable device that mountain climbers could take with them to combat mild altitude sickness. It is now sold to doctors offering hyperbaric treatment for "unconventional" indications (like multiple sclerosis, cerebal palsy, and autism).

Some of these doctors (as well as some parents that have also bought these chambers with a doctor's prescription) have added supplemental oxygen to their chambers, in order to increase the amount of oxygen that is supplied during the procedure. This is where the real danger in using this therapy lies.

Up until I read about the oxygen being added to these "Mild Hyperbaric Chambers" I wasn't overly concerned about using HBO to treat autism. Like all unproven treatments, there is concern about incurring even small unnecessary risks. But if autistics were being treated in "real" HBO chambers, they were being tended to by trained and certified technicians, who followed accepted protocols and safety precautions.

There is minimal (though not zero) risk associated with "diving" in a hyperbaric chamber. The most common risks entail claustrophobia (unless you like being zipped in an over sized piece of luggage), barotrauma (damage to your ears, lungs, or sinuses from not "equalizing" pressures properly), and temporary vision changes.

Properly used, there is little risk of danger in using the Vitaeris 320, or similar "mild" hyperbaric devices. The pressures developed are a lot less than conventional chambers, and supplementing oxygen to the chamber is not supported by the company's literature. This is probably why the FDA does not require the presence of specially trained personnel to use these "mild" HBO chambers.

Supplementing oxygen in any way when using these chambers (either with an external oxygen concentrator supplying O2 to an air intake, or by administering bottled oxygen within the chamber) totally changes the risk equation.

photo credit- NASA

Although it has been 40 years since the Apollo 1 tragic fire that killed it's three astronauts, the principles still apply. Enriched oxygen environments (especially under pressure) are dangerous. That is why conventional chambers are regulated, inspected, and have specially trained individuals operating them.

So the bottom line? "Mild Hyperbaric Chambers" are expensive toys in the treatment of autism. They expose those treated to minimal risks, but are certainly safer than something like chelation. Those who add oxygen to these chambers, on the other hand, incur extreme risk of fire and explosion. There is no science to support the use of HBO in the treatment of autism at present, and the only study I see scheduled is likely flawed from the outset. But my greatest ire is reserved for those who should know better (doctors) and yet not only provide treatments that are not useful, they are downright dangerous.

Wednesday, April 18, 2007

One Day in Virginia

By now virtually the whole world has heard of the mass murder/suicide in Virginia two days ago.

We, as human beings, try to categorize things to understand them. We search for meaning and for signals, that we may avert tragedy the next time. We want understanding of motives that would push someone to randomly kill innocents.

The one thing that I have not heard, that I have been fearing that I would, is the "A" word. Someone saying that the shooter was somewhere on the spectrum. Earlier this year we had the Odgren case, where a student with Asperger's fatally stabbed a fellow student. In the search for meaning in that case students with Asperger's were characterized as potentially violent.

In the aftermath of this tragedy in Virginia, I have heard the gunman described as basically non-verbal, as well as being totally socially isolated. In his only attempts at interaction with the opposite sex, he was totally inappropriate, engaging in behaviors that the women took to be stalking. One "expert" on mass murderers opined that the shooters total social isolation was a "red flag" that he was potentially very dangerous.

I am so sorry that the event happened. And so relieved (for now) that the "A" word hasn't been associated with it. Autism has gotten such a bad rap when it comes to violence.

School officials have no reservations when it comes to having children as young as 5 or 6 arrested by the police for acting out in class. I fear that they will call in police now to investigate all of those who are deemed to be "totally socially isolated".

I have no way of knowing whether the shooter in Virginia was on the spectrum. But I also have little doubt that, had he survived, his lawyers would have trotted out someone to say that he was, and that this was the "cause" of him acting the way he did.

I also know that when it comes to violence and autistics, that they are most often on the receiving end. But no one gets too upset about that.

People are calling Cho Seung-Hui "pure evil". I see him as a seriously disturbed young man who did a terible thing. Being disturbed does not excuse his actions. It does not even "explain" them.

Some things are beyond explanation.

I mourn for the victims of Monday's shooting.

Edit: After coming home today and seeing some of the material that the shooter had sent to NBC, it is obvious that he was anything but autistic. Possibly paranoid schizophrenic, but definitely not autistic.

Tuesday, April 10, 2007

Clear Communication

photo credit-Winery Finery

Liz related this story to me this morning, while I was getting ready for work.

Yesterday morning, after dropping Buddy Boy off at school, she stopped at a gas station and purchased a diet root beer to drink. Sweet Pea was still in the car. Liz didn't notice that the drink was nearly frozen, and when she opened it it sprayed all over the inside of the car, as well as all over her.

Fortunately she was near home, and returned there to change her clothes (and finish cleaning the car). After telling Sweet Pea she had to change her clothes, Sweet Pea said

"Don't take off your breasts."

"What?", Liz asked.

Sweet Pea repeated it.

"Did you mean my bra, sweetie, or my breasts?"

"Don't take off your breasts." Liz wonders, is there someone at school whose mom has breast cancer, and now Sweet Pea is afraid that Liz will lose her breasts?

"But honey, they're attached to me. They're a part of me. They're not going anywhere."

"No, mom. You know, the thing that keeps you from jiggling all around."

"Oh, OK. That's my bra. It's not wet. I don't have to change that."

Buddy Boy is now very verbal. He developed language a little late (he only had a couple of words by the time he was 2 and a half), but rapidly picked up language with speech therapy. A lot of times his spoken communication "borrows" things from books he's read, or movies he's seen. His speech is also somewhat stilted and halting at times. But, all in all, he's very verbal.

But because he's very verbal, I think he is often judged as being oppositional and purposely bad, rather than it being understood that he might not be processing something quite the same as intended, or that he has other problems related to his autism (like OCD) that are making it harder for him to comply.

It seems that the fact that he's verbal gets him "automatically" placed into the high functioning autism (HFA) category. This also means that along with being verbal, since he is seen as HFA he is also expected to be "high functioning compliant". Teachers and school administrators might understand when a non-verbal/minimally verbal student doesn't comply (perhaps falsely assuming that they have no communication skills), but they also make errors in the opposite direction, assuming that once one is verbal, you should also be "normal" in other aspects of your life.

Like many people in the "autism community", I don't like the terms HFA and LFA. There are too many assumptions and prejudices built into those terms, and they really are very heavily weighted by how verbal a person is, which is not the end all and be all of communicating or functioning in general. But society in general, and our schools in our neck of the woods, try to put each kid into a "box" (usually figuratively, though sometimes literally), instead of taking the time and making the effort to acurately evaluate and work with their strengths and weaknesses.

I've been thinking about this a lot, as we head towards another IEP next month (the first one since going full time in Buddy Boy's present school placement). Sometimes it seems no matter how much effort we put into writing the IEP (and explaining things to his teachers), there still seams to be a breakdown in communication between us. Which makes me wonder how much of Buddy Boy's communication is being lost or misinterpreted at school. Oh well, time will tell.

Until then, for my part I'm just glad that Sweet Pea said "jiggling" instead of "sagging". I would have paid for her comment a long time if she had.

Note: I have a big conference that I am helping to run this coming weekend. I may not post again until Monday or Tuesday.

Saturday, April 7, 2007

Driving Ambitions

photo credit Orrin

"Guess what your son did today? Go ahead, I bet you can't guess."

When Buddy Boy is "my son", I know it must have been something particularly egregious.

"I went shopping today and picked up a new outfit for Sweet Pea, and when we came home I took her upstairs to her room to try it on. I left Buddy Boy in the kitchen eating a sandwich"

"Yea, well, OK, what did he do?"

"I was only upstairs for 5 minutes. When I came down I couldn't find him. I spent about a minute searching the house and screaming his name. The front door was still closed."

By this point Liz is getting visibly more upset, reliving what was obviously traumatic to her. I, being the sensitive type (and realizing that I did not get a frantic call in the middle of the day, the house had not burned down, and the kids were both in the house) chuckled in anticipation of a good story. I just knew that with all this buildup, there was a good story coming. Perhaps this was not the ideal response.

"I went into the garage and he had the car running. The lights were on, the windshield wipers were on, and fluid was spurting out. And the garage door was still closed."

Well, obviously this was a potential serious safety hazard, but all had come out all right. So I did the obvious thing. I laughed. All I could think of was my friend Dave's kid, who had managed to get their car rolling down their driveway and across the street into a neighbor's driveway, when he was two. Yet another milestone that Buddy Boy was behind in.

"He had to fish the keys out of my purse. He could have driven the car into the house, or into the neighbor's house. He could have been thrown from the car. He could have died from carbon monoxide poisoning."

OK, so the CO poisoning was a real threat, but the only realistic one. And also pretty unlikely, as we never let Buddy Boy out of our site for more than 5 minutes, just because he is a little mischievous. Liz's car is an automatic, and there is a brake interlock. You have to depress the brake pedal to get the car in gear. His legs aren't long enough (yet).

"Maybe next time I'll tell him to drive your car, you seem so nonchalant."

Neither of the kids were in the room. I could put on my "daddy's upset" face later. For now, I was just enjoying the moment.

Most every kid (at least most every boy) dreams of driving from at least the age of 2 (and even sooner if you watch "The Simpsons" opening segment). We have known that Buddy Boy has wanted to drive since he could talk (about 3 years old).

Buddy Boy's bus drivers have related to us many times that he asks them what certain buttons and levers do, and he asks them questions about how to do certain things (like turn on the windshield wipers). He asks us those questions, too, when we are driving, but we aren't so foolish as to actually give him answers. We knew he'd go ahead and try to drive himself. He's told us multiple times that he knows how to drive. He even made himself a "driver's license" one day out of cardboard, when I told him he needed one to drive. Drew a picture of himself on there and everything. I was impressed.

We all hope that all of our kids will be successful once they grow up. Success takes many forms. But driving a car is a big deal for most kids as they grow up, as it represents (and enables) freedom. Freedom from your parents, freedom to do what you want to do. Freedom to apply for jobs not accessible to public transportation.

So I hope that Buddy Boy will be able to drive some day. It will be OK if he doesn't, but it would be great if he can. And though I'll lecture him about the "safety violation" that "driving" at his age entails, I won't try to dampen his ambition to drive, or to do any of the other things that will help him to become successful and happy in life.

And next time I'll even try to be more sympathetic to Liz.

Edit-Since writing this I have sat down and talked to Buddy Boy about this. Of course, he is able to parrot back to me all of the bad things that could have happened. But when we get to talking about how the car could have hit someone or something, he just shrugs his shoulders and says "But the handbrake was on. It couldn't move. I couldn't get the handbrake off. I wasn't strong enough." And at the end, after talking about CO poisoning, and how dead is forever, and how much we were really worried about him, his final response was-

"But I had to test my driving skills."

I had to bite my lip.

Joe is 212

Friday, April 6, 2007

Real Men Go to IEP's

In the US, the central event in getting a free appropriate public education (FAPE) for your child is the IEP (Individualized Education Plan) meeting. In theory, the meeting is a convocation of all the people that are involved in your child's education, including the parents as equal partners. Teachers, OT's, SLP's, the school principal, autism specialist, etc. are all to join together with you to come up with the most appropriate plan for the coming year(s). Unfortunately, in practice one often feels as if they were on trial in a courtroom in a dictatorship. Many things go on behind the scenes, many are pre-scripted, and it often feels futile to raise any objections to what the "court" has already decided. I've been thinking about these meetings while reading some of the things one of my fellow bloggers has been going thru (read her March 28th and April 4th posts).

In retrospect, one of the decisions that I made early on that has served us well over the last two years is that I decided to go to absolutely as many IEP's as possible for my son. This proved difficult at times last year, as the school seemingly dragged out meetings (taking hours to talk about things we could have covered in less than 30 minutes, then trying to cram discussion of all of the accomodations into the last 30 minutes). They would then seem incensed when we would refuse to be steamrolled and insist on scheduling another meeting to finish discussions in a deliberate manner. As the school fought us tooth and nail for everything we thought was appropriate, we had several meetings a month for a few months, all scheduled during business hours. As a lot of these meetings were scheduled at short notice, I was fortunate that my work was willing to be flexible and give me vacation time when I needed it.

I fully realize that having both parents attend IEP meetings is not physically possible for many people. People that don't have understanding bosses, not wanting to upset the apple cart at work in a job that you need for the health insurance, being a single parent, and loads of things I probably haven't thought of conspire against having both parents able to show up (once, we couldn't get a sitter for our kids, so even though I took off work I had to stay with them while Liz went to the meeting). But if you can swing it, I think it makes a world of difference.

First of all, one can usually forget about the IEP meeting being a friendly meeting between friends wanting the best for your child. At it's best, the IEP meeting is a business meeting, And "Friends is friends, but business is business" as one of my old bosses I worked for in college used to say. So even though you may consider yourself on good relations with the school, this is still a business meeting where bargaining of (potentially costly) services takes place. It's always good to have another person on your team sitting there while everyone is talking. If nothing else, the person can help to check facts, keep notes, and help you remember all of the points that you wanted to bring up. It's harder for them to distract both of you at the same time (not that they'd purposely do that).

Secondly, if one parent goes to the meeting, it is almost always the mother. Mom's make up the vast majority of the front line personnel that deal with the schools, both on a daily basis, as well as in IEP meetings. It's just the way it is. So the school system is set up to deal with females, for the most part. And when they want to "play politics" and manipulate you in a meeting, they are all set up to manipulate the mom. They aren't as set up to intimidate men. They try to use women's inherent nature to "get along" more than men to get them to agree with things that "the rest of the team sees as reasonable". They also try to manipulate the mom by subtly reminding her that it's really in her best interest to get along with the teachers, who she has to deal with every day, so she shouldn't complain too much in the IEP meeting. Also, if only the mom is there, it's much easier to paint any individual disagreement as the intransigence of "one person", you.

Third, it's easier for Liz and I to play "Good Parent, Bad Parent", or it's variant "Knowledgeable Parent, Parent who needs everything explained to them" (I can play dumb well). These two things allow Liz to keep up her good relations with the teachers while I am painted as the rough around the edges, bull in a china shop parent. Liz can sit there reading her notes while I point out how what they are proposing violates what I understand about what is supposed to be provided under IDEA (the law that governs services to disabled kids). At particularly emotionally trying times during a meeting, it's easier for us to be tag team wrestlers, spelling each other while one of us continues to press them (n.b., while I think fighting and military metaphors are inappropriate when referring to treating and accomodating autistics, unfortunately they are often all too appropriate when it comes to dealing with school systems).

Finally, having a male in the room on our side changes the way they treat us. They're just more civil. This is not just my feeling, but has also been related to me by two different advocates we have had, as well as our lawyer. Somehow, they think it's OK to bully a woman alone, but don't do it as much when there's a man with her. An old, sexist hangover if ever there was one, but I'll use it if it helps me get the necessary accomodations for Buddy Boy.

Wednesday, April 4, 2007

Death and Dying, Justice, and Autism

photo credit Cindytoo

I've been thinking of some seemingly unrelated things lately. Death and dying, the American justice system, and autism.

In 1969, Elisabeth Kubler-Ross, MD wrote "On Death and Dying", a classic text that outlines the psychological stages that most people go thru when they are in the process of dying. By the 1960's technology had advanced enough that people were separated somewhat from the whole process of dying. Dying people were crated off to hospitals, and then shoved off in the corner. No one cared about them, or cared to understand what they were going thru.

Dr. Kubler-Ross sat and talked to these patients, listened to what they had to say, and wrote about how these people felt. She identified what have become the generally accepted 5 stages of grieving that people go thru when they (or a close loved one) are dying. These stages (in order) are denial, anger, bargaining, depression, and acceptance. Generally speaking, most people she talked to went thru these stages when they were dying.

Don't get me wrong. Having a loved one with autism is not the same as having a loved one dying. But as with many major unexpected life changes, there are some similarities. I think it helps when dealing with other parents who have autistic kids to remember that they might still be working thru a similar process on the road to acceptance of their child. I think most parents go thru an analogous process to what Kubler-Ross described, before fairly quickly realizing that autism is not the same as a death sentence, and though their child's life will be different, it need not be an unfulfilled one.

When I was in residency training, one of the things that I considered going into was Pain Management. Pain Management is a very interesting field, and it can be very fulfilling. But after spending a few months in the pain clinics, I knew that this field was not for me.

The first thing I learned in the pain clinics was that no one got better if there was any potential financial gain to be had from staying "ill". Trying to cure a person's pain while they had a disability claim pending, or a lawsuit pending was not difficult-it was impossible. Once the money claims were settled, then working on the pain was possible, but seemed to proceed slower than if there had been no potential secondary financial gain out there to begin with. It seemed as if the delaying of initiating the healing process got them somehow "stuck" in a cycle of pain, from which it was a lot harder to dig themselves out of. I just didn't have the patience to wait until all the patients' outside issues were dealt with.

I see a similar process occur when someone is involved in a lawsuit (say, over someone dying by being hit by a drunk driver). The lawsuit, which generally drags on over a couple of years, serves as a prolonged period of grief for those who lost the person in the accident. They remain angry for so long that at the end there is little of the relief that they expected.

So how do these two things relate to autism?

I am not a big fan of drug companies. But I think that one thing that has happened is that those who are pursuing "Big Pharma" for financial compensation get "stuck" and don't get to the stage where they accept their autistic child. They cannot keep up the intense anger at the vaccine makers without also being angry at the autism they caused. They gather others around them, who even if they aren't directly involved, still feed this cycle of "hate the autism", which keeps them from accepting their child.

You don't see such things in the Down's Syndrome community. They have no external entity to blame, so there are not large groups dedicated to blaming big bad outside forces and conspiracies for their child. They are thus free to work thru their disappointment over lost possibilities, and on to acceptance of their child.

Perhaps, one day when all of the conspiracy theories are finally laid to rest, we can all get on with our lives, help those with autism in our families develop to their fullest potential, and help society to see them as full, valid members of society. Or, perhaps we will always have a large percentage of the autism community tilting at windmills, and prolonging the process of moving toward acceptance for many.

Tuesday, April 3, 2007

I'm Number 1!

Well, at least I was this morning when I went to vote. It's hard for me to predict that I'll get out on time at the end of the day, so I always try to vote at the beginning. But I have to get there early, otherwise I don't get to work on time.

So I was in line at 0530 this morning, and was the first one to vote. The only thing of import on the ballot was a funding initiative for the school district. The rest of the ballot were unopposed local officials standing for re-election. Public school enrollment continues to swell in our district, and all of the primary and middle schools are going to have auxiliary classrooms in trailers next year. The new initiative would remodel the schools, and add some space. I hope it passes.

I was glad to get out of the polling place this morning. We vote in our local grammar school, which is the place that Buddy Boy went to school last year. The place that was conspiring to expel him (we withdrew him for homebound school before they were able to do this), and the place where they wanted him shipped to a separate school for emotionally disturbed kids. My stomach roils whenever I go in that building. I was waiting to vote outside the room where we used to have our IEP's. I know I should forgive and forget (or at least try to forget and move on), but it's difficult sometimes.

Perhaps it's worse because of some of the forms we were filling out for Sweet Pea last night. Sweet Pea will be starting Kindergarten next year. We got permission from the school district for her to attend the same school as Buddy Boy next year (it's in the same district, but is not our assigned school). This will make it much easier logistically for Liz for getting them to and from school, and much easier for both of us to be active in the Parent Teacher Organization.

One of the forms we had to sign said something like (and I paraphrase from memory) "I affirm that this child has never been expelled from school due to disciplinary action for the use or possession of drugs, dangerous weapons, or assault on another person". This is a form that we will have to be attest to each year for the next 12 years. If the school district had been successful last year in expelling Buddy Boy for his tantrums (throwing staplers, half hearted kicking at them) in Kindergarten, we would have had that following him throughout the next 12 years. The fact that the school district would do that to an autistic 5 year old kid who was having control issues that were part and parcel of his disability (as well as the fact that they were, IMO, purposely provoking him) really gets my goat. I touch on some of our dealings with the school district here, here, and here.

How dare they do that to my child, or any child for that matter. I know that they justify their actions because they have to "serve all the kids, not just the special needs ones", and "we have to have a single standard of punishment for everyone". Irrespective of the fact that both of those attitudes are addressed in the law, which states that disabilities are to be taken into account, and that if a student's actions are a part of their disability they are not to be disciplined for it, these kind of things happen all the time. I only hope that there is some kind of cosmic retribution waiting for those who would conspire to crush a child's spirit, and deny him an education and chance at success in life.

Monday, April 2, 2007

A Safer Treatment

If you've followed my musings lately, you know that I am not a big fan of chelation. It changes your body chemistry radically, and is possibly deadly. So they'll be none of that around Club 166's house.

But to be honest, I must admit that there are a lot of environmental pollutants out there, and no one has discounted the role that the environment may play in autism. So I've come up with a way to gradually release these toxins from Buddy Boy's body without doing him harm. I'm sure that some readers will be a little surprised to see that I am espousing what could be called an "alternative treatment". But as this treatment is all natural, and when used properly is totally safe, I think it's important to try it.

If reverse osmosis works to leach metals and other toxins out of water, then why can't it work on Buddy Boy? I've started him on an all natural daily supplement of dehydrated water, which has had all of the toxins removed from it. Since this product is all natural and toxin free, as it passes thru the gut (which is a natural semi-permeable membrane) it will create a diffusion gradient for toxins to diffuse thru the gut wall and into the lumen of the intestines, where they will be eliminated naturally.

Tap water in most locales is fairly contaminated nowadays, and contains all sorts of minerals in it, which will reduce the diffusion gradient for toxins to be eliminated. This is why I use the much purer product, dehydrated water, which has been triple purified before undergoing the dehydration process. It is important to note that it is essential to use distilled water to reconstitute the dehydrated water before administration. Failure to do so will decrease the effectiveness of treatment.

Now the real beauty of this treatment is that since it is an aqueous based treatment, it will work both in the gut as well as in the kidneys, which are our bodies natural mechanisms to eliminate wastes. By providing the kidneys with this waste free/toxin free substrate, the kidneys' actions are enhanced, and toxins flow out of the body rather than into it.

Now there is a small potential danger with this treatment, and that is if we get too overzealous we can actually cause water intoxication, which although rare, can be serious. So it's important to just substitute the dehydrated water for the normal amount of water that Buddy Boy drinks each day, and not to push too hard, too fast. This means that his detoxification might take a little longer, but it will certainly be totally safe. I expect that by the time Buddy Boy is in high school he will have all the toxins leached from his system with this approach, and he will be a new kid.

Happy April 1st, everyone!