No More Silence

I'm a get along kind of guy. I like to build concensus, and not rock the boat too much. I like to keep my mind open to different opinions, and different ways of doing things. But sometimes you have to draw a line in the sand.

Twenty years ago, the gay community was beseiged by a disease that was killing them off, and no one seemed to care. Several people in the gay community in New York came up with the "Silence=Death" campaign. It was a simple campaign to raise awareness amongst all of society of what was happening. They didn't have the internet, so they plastered posters all over town looking much like the one above.

I believe that the autism community is under a somewhat similar (though not yet as devastating) onslaught in this day and age. There are two main things that I see that are killing autistics. One is the physical and psychological abuse that is going on in institutions (and sometimes openly in society). The other is subjecting autistics to experimental treatments that have no scientific proof, and have killed people that were being treated. The biggest offender in this category is chelation (now sometimes referred to as "detoxification").

While I still respect any parent that respects and loves their child and is just trying to get the best interventions for them, I can no longer stay silent when they mention chelation as a possible option as treatment. Sometimes in the past I have not been as vocal as I should have been in informing them of the hazards of chelation. At the risk of losing friends, and of getting tossed off one local message board I am on, I can stay silent no longer.

Description of deaths from chelation can be found here and here. A good discussion of a 5 year old autistic child's death from chelation can be found on Kevin Leitch's blog here.

We have this great disseminator of information, the internet. I resolve to respond whenever I come across potentially dangerous practices. Not to denigrate the individuals involved, or to espouse one way of doing things over another. But to save lives. Period. And I encourage all of you to do the same.

The Heights We Go To

Photo credit-Bob Reck

In a story out of North Carolina that will sound familiar to all who have lived in suburban America, a local homeowner's association has forbidden an owner to put up a 6 foot fence (which is prohibited under their covenant).

What's unusual (probably not to most reading this list, but in general) is that the reason the homeowners wanted to put up a higher than allowed fence was to keep their young autistic son from eloping from their yard.

This is one of those common problems that we often have to face. In our family, we decided to put dead bolt locks on all of our outside doors (as well as our mudroom door) in order to keep Buddy Boy from eloping when he was younger. This is against our local building code, and if the city catches us, we'll likely be forced to remove them (our local code says that there must be a latch on the inside that can release the lock). While we appreciate that we put ourselves at slightly increased risk of not being able to get out of the house if there is a fire, for us the overwhelming problem was of having our son run out of the house, which unfortunately sits on a relatively busy street. We compensate for the fire scenario by having keys placed up high near the doors.

In the incident in the article:

...Michele and Rene Guyader hoped to build a 6-foot fence to keep their fast-growing boy from falling into a sewage drain hole at the back of their steeply sloping lot. The homeowners association of their Clayton subdivision turned them down. ...

One would think that your neighbors would execute some common sense and sensibility, but unfortunately this is usually in short supply in these local situations. Some of the biggest tyrants are to be found in positions of power in these local homeowners associations.

The homeowners association was asked by a reporter to respond:

Bailey, the architectural review committee member in the Guyaders' neighborhood, said he was not fully aware of the son's condition until contacted by a reporter. He would consider a 4-foot-tall fence, topped with a see-through lattice.

The Guyaders aren't sure yet that will work. They argue an exception to the covenant is warranted because they didn't know of their son's condition before moving into Cobblestone subdivision about a year ago.

I know Buddy Boy would make short work of a "see through lattice" if he really wanted to get over a fence.

"A man's home is his castle" is the old saying. Nowadays, that holds true only if the government doesn't have a tax lien on the house, you've complied with all local building codes, and the increasingly ominous homeowners covenants, which can dictate all sorts of things which you can and can't do to your house, including what color you can paint it. I've never lived in a place where I had to sign one of these things, and I hope to never have to.

I also hope that there will come a time when common sense prevails, and people can make common sense modifications to their own house when they need to for the safety of one of the occoupants.

Speaking of Magma

Today we celebrated Sweet Pea's 5th birthday. She's been looking forward to this for weeks. We've been counting down the days. My daughter has enough exuberance for the whole family. She gets excited over the most ordinary things. So when things out of the ordinary happen, she's over the top. Yesterday she says "Tomorrow's my birthday, everybody's going to be there, and I'll get to have CAKE! and ICE CREAM!, and PRESENTS!!!" I didn't think she'd ever get to sleep last night.

Rather than have a large kids party, we went with a fairly sedate celebration with just family (immediate family, aunt, uncle, and one great aunt). She wasn't sure what kind of theme she wanted for her party, but just said "Just so it's not BOY stuff." So we went with butterflies and flowers (all over the walls, with some butterflies hanging from threads from the ceiling), with a sun hanging from the light above the dining room table.

During the day today Liz did Sweet Pea's nails. Sweet Pea has been wanting to have nail polish for some time now, and Liz said she couldn't have it until she was 5. It was the first thing Sweet Pea showed me when I got home. "Look, daddy!" "It's pink, my favorite color!" "First we put on the polish, then we put on some oil, then we had to let it sit for a loooong time."

We had salad and pizza for dinner, then the required cake, ice cream, and presents. Sweet Pea had a great time. Buddy Boy had picked out a birthday card for her (with her favorite on it-Disney princesses). He can be very thoughtful, and does know what his sister likes.

Buddy Boy likes to talk (about things HE likes to talk about). He goes to social skills classes, which we think are helping him in responding appropriately to others, as well as getting his needs across.

We're sitting at the dinner table talking about my sister's dogs. Sweet Pea asks if they are females (they both are), and expresses the wish that they'll have puppies. I try to placate Sweet Pea by saying that they won't have puppies because they're both female dogs, and you need a daddy dog and a mommy dog to make babies. My sister decides to tell her that they both had operations so that they wouldn't have any babies (more information than I would have given, but oh, well). Buddy Boy jumps in with "So they won't have any puppies, Sweet Pea. And speaking of Magma, did you know that it isn't called magma once it's out of the volcano. Then it's lava. And there are 3 different types of volcanoes. You'd know this if you watched my videos, dad. There are cinder cones, composite volcanoes, and shield volcanoes... ." He then went on for about 3 minutes straight talking about volcanoes, the Pacific "ring of fire" where many volcanoes are located, how you can't always tell that a volcano is really dormant, etc. before we finally cut him off.

My wife's aunt (84 years young) loved it. I think she was about to pee her pants. All of us found it fairly amusing. I admired the way Buddy Boy was able to spot a brief lull in the conversation, say something related, and steer the conversation (even if a bit crudely) to a topic he wanted to talk about. It's good to know he's getting our money's worth out of those social skills classes.

So all in all it was a great day. Sweet Pea had a good time, Buddy Boy was able to cope well for most of the party (though he and Sweet Pea did argue a bit about a doll she got with blond hair-he does like blonds, after all). And I didn't have to get into a long description of getting a dog spayed, and why, and answer questions about people getting spayed, etc.

And in checking on the net before I posted, I found out that geologists generally agree that there are 4 different types of volcanoes (how could Buddy Boy have forgotten Lava Domes?). I can't wait to tell him in the morning.

Joe is 211

It's Spring!

photo credits-my cell phone during my bike ride

What a great weekend it was in the middle of the US. Sure, there were some showers, but it was warm, occasionally sunny, and flowers and trees are blooming all over the place.

A great time for playing outdoors. We practiced throwing a baseball and long jumping (events that Buddy Boy's class will participate in in Special Olympics), and I got out on the bike myself, as well as with the kids.

When I went out with the kids, we did something new. Sweet Pea has outgrown the trailer I used to pull her in, so she has graduated to the "tag along" bike that hooks up to my seatpost. She says "I don't get enough air in the trailer". Of course what she really means is "Now that I've gotten a taste of riding out in the elements like this, like a big girl, you're never going to stuff me back in that trailer again!" Fortunately, Buddy Boy has gotten more confident on riding his two wheeler without the training wheels.



So we did a new thing yesterday. Instead of me throwing their two bikes in the car, takeing them to the park, then having them ride while I walked, we all rode to the park. I hooked the tag along bike to mine, and rode in the street pulling Sweet Pea behind me while Buddy Boy rode on the sidewalk the half mile to the park, where we rode on the trail that circles the park. This was significant, as Buddy Boy has never ridden on anything as narrow as the sidewalk before. I thought he was up to it, and he was the one who suggested we do it this way (I think he gets tired of waiting for me to catch up to them walking while they ride). Buddy Boy did pretty well. He veered off into the grass once on the way there, and bumped into two obstacles (a fence post and a telephone pole) on the way back.

Because it was the end of the ride (and we had also spent a good deal of free time on the playground equipment) Buddy Boy decompensated a bit when he bumped the obstacles. But he managed to get it back together in a few minutes, and we carried on back home.

It was great to get out and celebrate the start of a new season. Spring always feels so fresh and new, and the color that is dappled all over the place by nature is simply spectacular.

Happy Spring, everyone!

Joe is 210

Definitely Strange

One of the blogs that I like to visit periodically is by a pediatrician, who goes by the name of "Dr. Flea". Flea covers a lot of territory with his posts, and has had multiple posts that are supportive of the autism community and dismissive of the anti-vaccine crowd.

In perusing his blog recently, I noted a most unusual post. If ever one doubted that there are some serious nutjobs out there promoting the whole "mercury causes autism" thing, Dr. Rebecca Carley is proof of how "out there" some of these people can be. The photo above is from her web site.

Looking at her rambling, single spaced website, Carley goes on about how vaccines cause autism, cancer, autoimmune diseases, and shaken baby syndrome. She lists a phone number that you can call to get advice on how to reverse your disease with natural remedies. As she states:

...DR CARLEY HAS CLIENTS (BOTH PEOPLE AND PETS) ALL OVER THE WORLD, AND DOES NOT NEED TO SEE YOU IN PERSON! YOUR PROTOCOL TEACHING YOU HOW TO REVERSE YOUR AUTOIMMUNE DISEASE OR CANCER IS CREATED BASED ON YOUR INDIVIDUAL HISTORY. ...

It's great that you don't even have to have an office visit to get diagnosed and treated by this quack.

Fortunately for society, and as Flea notes, her license to practice medicine was revoked in 2004. A review of her website and hearing proceedings of the medical board reveal that she has had serious problems for years.

Looking at her CV, she completed 4 years (out of a usual 5) of a general surgery residency. This is usually a red flag that something was noticed to be wrong by her program. She was accepted into a Physical Medicine and Rehabilitation residency program, but washed out of that in two months. She subsequently practiced as an emergency room physician for a few years, and one year as a surgical house officer. The CV notes nothing for several years, then notes that she took multiple "Alternative Medicine" courses and seminars over 2 years. She subsequently claims to have started a new medical specialty,

VIDS (Vaccine Induced Diseas Syndromes, which includes all autoimmune diseases and cancers).

There was a psychiatric evaluation done as part of the proceedings which ended in her losing her license. The psychiatrist found Crawley to have:

... a delusional disorder with the presence of narcissistic and borderline personality traits. ...

He also testified:

...she has persecutions of persecution and grandiosity and that she believes that she is being persecuted because she is special. ...

And if that isn't enough:

... Dr. Labins also testified that the Respondent (Dr. Carley)believes that her husband sodomized their son as part of a satanic ritual because she does not vaccinate and because she cures children with autism. ...

So if you ever wondered who was out there promoting vaccines as being evil, and mercury as causing autism, here is one prime example.

Unfortunately it's usually not the out and out loonies that sucker people in, but some of their psychologically slightly better balanced followers who do the most damage.

Joe is 211

Pressure Applied to Autistics

photo credit- leappbaby

In a troubling incident in Tulsa, Oklahoma, a mother is accusing the school system of child abuse for "rolling up" her 7 year old autistic son when he was out of control. This incident is troubling for a couple of reasons. First, most likely this is an all too common scenario of untrained staff overreacting in an inappropriate manner.

...The mom told police the boy's face, neck and shoulders were covered with marks that appeared to be tiny broken blood vessels under his skin. We talked to the doctor who saw the boy that day. He said the injuries were likely from screaming while being in a tight restraint for a long time. ...

This description is consistent with the child having force applied to him (squeezed tightly) while he was "rolled up". It was fortunate that asphyxiation injury did not occur, which could have caused brain damage or death. Although the injuries in this case were certainly uncalled for and serious, they didn't warrant any medical attention, and the child has returned to school.

The parent may be absolutely correct in pursuing legal redress, but this case is also troubling in that stories like this only serve to paint all autistic kids as wild, violent, and out of control, which makes it easier to dehumanize them and leads to societal acceptance of further abuse.

I certainly sympathize with the mother. About 18 months ago I had a similar incident occur with Buddy Boy. Although he did not end up with petechiae, and it wasn't a part of his Positive Behavioral Support Plan, staff at the school wrapped him in a heavy rug while he was screaming at them that he didn't want to be wrapped up. Deep pressure only works if it's what the person is seeking to calm themself, not if they're just pissed off about some innane thing that you're doing to them.

But I hate to see these things made into police matters. I'm worried that the next time the child is perceived to be "out of control" that the school calls the police, who will treat the child as a criminal and taser them (or worse). I'd much rather the school district act responsibly and realize that this technique was absolutely wrong (and could have resulted in worse injury or death), apologize (I can dream), immediately have an IEP meeting to determine whether the Positive Behavioral Support Plan that was in place was followed, and whether that plan needs to be revised.

The school district has already lined up another parent of an autistic child to defend their practice. So even if the original child's Positive Behavioral Support Plan wasn't followed, and even if the district overstepped their bounds, this case is lost in the forum of public opinion, and the biggest losers are all autistics, who are further viewed as violent, out of control, subhuman creatures.

Joe is 211

Not Strange at All

I've finally gotten through reading Roy Richard Grinker's Unstrange Minds-Remapping the World of Autism. I had picked it up earlier this month, when I also got to meet Grinker at a book signing. He passed my "sniff test" when I met him, and I looked forward to reading the book.

Having read a few other reviews, I didn't think I would be disappointed, and I wasn't. The book is divided into two parts. The first part is basically a short history of autism in western society, mostly in North America. The second part explains how three other cultures (Korea, India, and Africa) view and treat autism, from an anthropologist's view (which Grinker is).

Like most people directly affected by autism, I'm fairly well versed about "all things autism", and I didn't think that I would learn very much from the first part of the book. But there were many things that I hadn't known that I found quite interesting. Things such as J. Langdon Down (for whom Down's syndrome is named) also described atypical patients who he thought had mental retardation that sound very like autistic patients back in 1887. Down was also the source of the comment that he thought these children were especially beautiful.

Grinker comes from a long line of psychiatrists, as well as being married to one, and is thus well versed on how psychiatry and autism have evolved. He weaves anecdotes and personal history of famous figures like Kanner into an intriguing description of how autism has always been with us, and how it has come to be recognized and systematized.

Probably the thing that draws most readers in is how Grinker uses examples from his own familiy's experience with autism into this book. Grinker's daughter, Isabel, now 16, came of age during the leading edge of increasing awareness of autism. Many of the battles that she and her family went thru, as well as many of her victories, will be very familiar to anyone whose life has been touched by autism.

As bad as society sometimes views autism in America, things are often much worse in other parts of the world. Grinker takes us on a world tour of select spots in the world where autistics are treated much worse that they are here. Places where autistics are shunned and locked in cages, and places where there is little understanding, much less assistance, for autistics. Amongst other feelings, it leaves one feeling lucky to have as much understanding and acceptance that we do have, though it is far from perfect.

So I heartily recommend Unstrange Minds, both to readers who are a part of the autism community, as well as those that aren't. It's a great read, and hard to put down. Grinker personalizes autism thru his daughter, Isabel, while being thoroughly educational as to how autism has evolved both in western society as well as elsewhere.

Joe is 211

A (mostly good) Reunion

In the movies, reunions are usually all good. The music builds, knowing glances are exchanged, and it all works out neat and clean. Seldom are things quite so clear cut in real life.

Our kids' birthmother, Kelly, is basically a good person who doesn't always make good decisions. She's had 3 kids with three different men, none of whom ever stuck around. She is raising the oldest one, Jeffrey, who is now 10 years old. The other two, Buddy Boy, 7, and Sweet Pea, 5, are our kids. She doesn't smoke, drink, or do drugs. Kelly has worked fairly menial jobs in her past, but is now on partial disability following an on the job injury to her hand a couple of years ago. Other than a scar following a surgery, the hand appears grossly to work fairly well to me. She works 20 hours/week in a retail setting.

Yesterday afternoon we arrived in Kelly's city and drove out to her apartment to see her. She keeps a neat apartment. When I walk in one of the things I notice is a bookcase packed floor to ceiling with several hundred movie DVD's in it. The kids notice her cat, and take off after it. I try to at least get them to be a little more gentle with the cat.

Sweet Pea is initially friendly, but when Jeffrey comes home from school and Kelly's mom, Neenah, comes over she very uncharacteristically gets very reserved and retreats to the back bedroom and refuses to come out. Sweet Pea is destined for things like class president, she's so social. I've never seen her this way. I follow her back to the room and attempt to reassure her and hold her. After a while she comes out, but is still very reluctant to be very interactive. A while later she sits in Kelly's lap, and seems to loosen up some more.

Kelly, for her part, is much more evenhanded with Buddy Boy this go around. She talks to him about school, and gives him a hug and kiss. She also talks about wanting to get out of her apartment, and wanting to buy a house. She mentions that the realtors wanted $1000 as a down payment, which she doesn't have. She wants to get a house that will have a payment the same as her monthly rent (~$400). We try to gently explain that she's in a relatively good situation now (bills getting paid, no debt), and that there are a lot of hidden costs of home ownership. She says that she wants a house so that she has something to leave Jeffrey. I relate to her how a relative of mine is about to be forced to declare bankruptcy and lose his house because he got in over his head. She still seems unconvinced. She says the neighbors are noisy, and she's tired of yelling at them. I glance again at the DVD's, which had to have cost at least $4-$5000, and say nothing.

Kelly is pleased with Jeffrey's performance in school (mostly A's and B's, with one C) but didn't know when his spring break was when Liz called to arrange our getting together, and doesn't know which middle school he'll be going to if they stay in the same apartment.

I think that many people that have adopted don't like to have contact with the birthparents just because it's uncomfortable for them. Adoption, by it's nature, often brings together people from different socioeconomic classes, with different value systems and different outlooks in general. As much as we in America pride ourselves on having an egalitarian society with no class system, most of us do not usually associate closely with members of society that are very different from ourself. Liz and I are committed to having our kids know their birthmother (she has no contact info for their birthfathers), even though it isn't always the most comfortable thing for us. I know that although our family finances are sometimes a bit strained, we look like Rockefellers to Kelly and her family.

In making small talk Kelly mentions how Sweet Pea is fairly leggy, and she wouldn't expect her to be tall, as her daddy isn't. Autism isn't the only subculture that has "language issues". I bristle a bit at having her birthfather who's never laid eyes on her being referred to as "her father". After strapping on a "Baby Bjorn" with Sweet Pea every other night for the first 4 months of her life, walking the floor trying to comfort her, and catching cat naps with her still strapped to me in the Lazy Boy (until we finally got her esophageal reflux correctly diagnosed and treated), I think the term "her Daddy" belongs to me, and me alone. But I know she means no harm and is referring to the short (5'4") stature of Sweet Pea's birthfather, and let it slide. I also know that in the eyes of the only one who really counts, I will always be "Her Daddy".

We leave her place and all go back to our motel to take a swim in the pool. The pool isn't too big, but it doesn't matter as we have it to ourselves. Swimming is great at lubricating the rough spots for all of us, and we all seem to loosen up.

Today was much easier all around. We did some touristy things during the day with the kids, then Kelly and Jeffrey came over after he got off school. We went swimming again. Sweet Pea is much more her gregarious self today. She is relaxed with Kelly, and hanging on Jeffrey. She seems determined to keep up with the boys in the pool, and lets them each take a hand and jump in all together. It's a Hallmark moment.

Afterwards we all go out to eat for dinner. Buddy Boy now starts to decompensate, asking why we have to go home tomorrow, and lamenting that we haven't had enough time with "Aunt Kelly" and Jeffrey. The last two days have found him to be more interactive than either Liz or I have ever seen him with another boy. We think he likes the idea of having an older brother.

At the restaurant Kelly's half sister drops by to meet the kids. Before she comes in Kelly volunteers that her sister wasn't when the kids were born because she was in prison. Her sister seems nice enough. I cringe at the mention of prison only because it is one of my innermost worst fears of possible futures for Buddy Boy.

We all exchange hugs goodbye when we leave the restaurant. Buddy Boy basically holds it together, though it's obvious he's very emotional at leaving. I'm glad we came. It's really important to me that the kids have some sense of where they've come from. I think it will help them in the future, so I'm willing to endure whatever small discomfort we have to now. I'm also thankful, though, that there's 300 miles of freeway between us and their birthmother. Like with inlaws, sometimes a little space is good.

Tomorrow, it's back on the road again. No more time tonight to find a nice picture for the header, or even to clean up my syntax.

Anticipation

photo credit Ed Wilson

We can never know about the days to come
But we think about them anyway
And I wonder if I'm really with you now
Or just chasing after some finer day. ...

Anticipation-Carly Simon

There was a lot of anticipation in the Club 166 family today. It's been three years since we've visited the kids' birthmother. Buddy Boy hasn't expressed much of an opinion one way or the other on the trip lately. Until last night, when he said he was going to give "Aunt Kelly" (what we call his birthmother) all of his money so that she could buy a house. Because she was poor and lived in an apartment, so we could buy her a house, or he would just give her money so she could.

"Um, Buddy Boy, that's very generous of you, but I think that you would really hurt her feelings if you did that. Also, just because somebody lives in an apartment doesn't mean they are poor. Mom and I have lived in lots of apartments. So don't say anything about her being poor, and I bet she'd really like it if you gave her and Jeffrey (their 10 year old biological half brother that Kelly is raising) a lot of smiles."

Liz and I have always pursued an "honesty is the best policy" when it comes to talking to the kids regarding their adoption history. Adoption has always been a part of our lexicon, and their birth and adoption stories have also often been discusssed. We've told them that their birthmother loved them, but was not going to be able to take care of them when they were born, and thus made an adoption plan for them, and selected us to be their parents. We've never used the word poor to refer to her, but somehow Buddy Boy has inferred that because she wasn't going to be able to take care of him or Sweet Pea before, and she still lives in an apartment, then she must be poor.

Liz and I were a little anxious about the trip. When we adopted Buddy Boy we agreed to what's called a "semi-open" adoption. That's where the new parents agree to a specified number of pictures/updates over a certain period of time. Our relationship with the kids' birthmother (they both have the same birthmother) has morphed into an open one, with cards, pictures, and letters exchanged on holidays/birthdays, and the one previous trip that we took 3 years ago for a visit (in addition to the time we spent together the 2 times we adopted the kids). When we visited 3 years ago it was obvious to us that Kelly payed a lot of attention to Sweet Pea, and not much attention at all to Buddy Boy (after contacting us and asking us if we wanted to adopt Sweet Pea when she was born, Kelly almost changed her mind in the days following her birth, because 'She had always wanted a girl'). We didn't want a repeat episode of Buddy Boy getting the short end of the stick.

Sweet Pea, for her part, has been counting down the days until we visited "Aunt Kelly". She has pictures from the last trip in a photo album on a shelf in her room, but she doesn't really remember the last trip (she was just shy of two years old). Last night, however, she seemed to be having second thoughts. "I don't want to go tomorrow, Daddy. It's going to take too long in the car, my legs will get stiff, and it's not going to be any fun."

"But don't you want to go see "Aunt Kelly" and Jeffrey? They both love you very much, and I know that they want to see you." [Sweet Pea gives me a sidelong long turned half away from me-I'm not quite sure how to interpret this] "Get some good sleep, sweety pie. It's a long trip, but remember there's a swimming pool at the motel. We'll all go swimming when we're there. It'll be fun." (Reminding her about the swimming pool is a cheap ploy, but I knew it would work. Both kids are suckers for swimming pools. In fact, I think they'd be just as happy for our annual vacation if we stayed in our home town and checked into a motel with a swimming pool).

The trip itself was fairly uneventful. Buddy Boy is a good traveler (riding in the car was always something that soothed him as a child). Riding in the car with both Buddy Boy and Sweet Pea for 5 hours brings the usual sibling squabbles one would expect between kids that are 7 and almost 5. We strategically put the laptop briefcase between them on the backseat as a pseudo barrier, but of course they're big enough to reach over it and poke the other one when they really want to (which is fairly often).

About half way there, Buddy Boy asked me what the red button on the dash was for (the emergency flasher button). I of course told both kids that if I pushed it, anyone in the back seat was ejected from the car (I've never claimed to be the perfect father). Buddy Boy immediately countered "You can't do that! It's against the law! Parents are supposed to take care of their kids!"

Liz gave me a dirty look and said "Kids, your father has something to tell you." "Well, it's really the emergency flasher button", I said. (Liz has no sense of humor sometimes). A couple of stops for gas, food, and bladders, and we arrived without a hitch.

Tomorrow's blog-we meet again...

Joe is on the road, eating junk food, and there isn't a scale in sight...

My Kind of Research

photo credit-Staci Peters

Lately my two selves have been somewhat at odds with each other-my science educated self and my parent self.

As a person trained in the scientific method and believing in things that I can test and measure, one of the first things I did when we got a diagnosis of autism for Buddy Boy was to immerse myself in reading as much research as I could get my hands on. If there were things out there that were proven to help, then I would find them and get that help for him.

One of the first things I discovered was that there was a bunch of new age, hocus pocus kind of stuff out there that had absolutely no science behind it. Sure, on an initial scan of some of the literature talking about causation and "cures" there were things that seemed to make some sense. But when I looked with a critical eye, looking for hard data, there was just no "there" there for most of this stuff.

My reading did seem to indicate that we had "missed the boat" by not instituting ABA therapy before the age of three (Buddy Boy was almost 4 when doctors stopped talking about sensory integration disorder, probable ADHD, and language delay and finally uttered the "A word"). I read up on ABA therapy anyway, and quickly realized that classic ABA therapy consisted of basically putting my kid into a Skinner Box, which I wasn't really too fond of (note: I know that all "ABA" isn't created equal, so don't all pounce on me if it's working for you).

The parent side of me has always wanted to protect my son, nurture him, instill a love of learning and an ethical base, then turn him loose on the world to do great things (what I'm sure we all want, basically). Upon getting a diagnosis, and as Buddy Boy's OCD behaviors and touchy temperment became more evident, the parent in me has wanted to put emphasis on getting the best supports educationally and socially that I can for my son, so that he has the best chance of living independently and being a productive member of society.

I have thus become much less enamored with research, especially into causation. Forget population statistics, genetics, and the environment. I have an "n" of 1 to take care of. If something isn't directly helpful to us in caring of our son, then it's a lot less interesting to me. Sure, I still follow all types of research when I come across it, but following most research has become a side issue rather than the main event.

So it was with some interest that I read this announcement from researchers at Georgetown University.

Using advanced brain imaging techniques, researchers at Georgetown University Medical Center have watched how humans use both lower and higher brain processes to learn novel tasks, an advance they say may help speed up the teaching of new skills as well as offer strategies to retrain people with perceptual deficits due to autism. ...

Rather than being aimed at isolating 100's of genes that contribute to autism (important stuff, just not too helpful in the here and now for me), they looked at something that is going to be important to Buddy Boy for the rest of his life, learning.

...In the March 15 issue of Neuron, the research team provides the first human evidence for a two-stage model of how a person learns to place objects into categories discerning, for example, that a green apple, and not a green tennis ball, belongs to "food." They describe it as a complex interplay between neurons that process stimulus shape ("bottom-up") and more sophisticated brain areas that discriminate between these shapes to categorize and "label" that information ("top-down"). ...

I've always thought that Buddy Boy's inability to remember the names of any of his classmates (with a couple of notable exceptions) was at least partly due to the way his brain filed away peoples' faces. If these researchers can shed some light on how we file away things in our memory, then concrete methods at assisting those with trouble with these pathways could be designed.

These kinds of studies are, to me, the kinds of studies that will shed some light on what specific kinds of supports are the most helpful in preparing my son to live independently. And that's a great thing, no matter how you slice it.

Joe is 210

Cautiously Optimistic

Well, we just got home from our parent-teacher conference for Buddy Boy. Although we haven't gotten any really bad feedback from his teacher this year, we were apprehensive going into this.

All in all, I have to say it went OK. My radar shields have been up this year, having been burned badly last year, I'm continually looking for hidden agendas and landmines waiting to explode. But we sat and conversed with Buddy Boy's teacher for an hour, and things went OK. Not perfect, but not bad.

We probably spent 80% of the time going over academics, 15% of the time talking about socialization, and only 5% talking about "behaviors". His teacher, Miss W., was generally upbeat, and mentioned several times how she loves Buddy Boy's love of learning. She also mentioned a fair amount of times how he loves to go on and on about any subject they talk about, telling all that he knows about the subject. I wanted to say "Duh, he's autistic. What do you expect?". But as she seems generally interested in him doing well, and generally and genuinely working towards helping him learn, I let it slide. I'll save any snide comments for his next IEP.

Miss W. spent a lot of time going over something called a Woodcock Reading Mastery Test that she had done with him. She mentioned that it usually takes her about an hour and a half to administer the test, but with Buddy Boy it took her a week and a half to get thru it, due to him repeatedly getting sidetracked.

While Buddy Boy scored high on word identification and comprehension (4th and 5th grade level), he was about at grade level (1st grade, 6 months) when it came to passage comprehension. We know he's a very good reader (though he stops and starts, and gets distracted and goes off on tangents when reading passages), but it's nice to see it confirmed that this is so. He's much better at "listing" all of the things that happened in a story, and not as good at summarizing and telling you what the story was about.

Buddy Boy's math skills are average. He's pretty much on par with what's expected from first graders. His penmanship sucks (I actually thought it looked at least as readable as most doctors' :)). The most encouraging thing is that his teacher mentioned she was going to let him use keyboarding more, as he has been practicing using a keyboard, while still having his OT work on the penmanship. I found this very encouraging, as we didn't have to suggest this.

There was some talk regarding his interupting class to keep on talking, and his being unfocused at times, but Miss W. didn't spend an inordinate amount of time talking about these things, and didn't seem to indicate that these were insurmountable problems, just things that we need to work on.

She also indicated plans for greater inclusion in regular classes this year, including computer class and music class. Also, depending on how he does in these two classes, a reading comprehension class. Miss W. also thought it would be appropriate to have an IEP meeting in May, once we see how Buddy Boy does with a bit more inclusion, to talk about plans for next year.

Miss W. mentioned that Buddy Boy actually went up to another boy in the class before recess and asked him if he wanted to play at recess. That was huge. He's never initiated something like that before, that I'm aware of. He's asked his sister to play, he's responded occasionally to other kids initiations, but I've never seen him go up to any other kids and ask them to play (maybe those social skills classes he goes to are working, who knows?).

So, all in all, it was a decent night. No hidden agendas detected. And Miss W. spent more time with us than I expected. If things keep up this way, we might even begin to trust the school district a little.

It's Spring Break next week, and I'm off work. We're taking 3 days with the kids to go visit their birthmother and their older half brother(who live about 300 miles away). Besides the birth of the two kids, we visited them one additional time about 2 years ago. Sweet Pea doesn't really remember this, so this will be a new experience for her. I'm sure the visit will be good for at least one blog entry.

Joe is 211

This Gentleman Prefers Blonds

One thing that has always been a part of Buddy Boy’s makeup is that he hardly appears to be paying attention to his peers. While he likes adults, knows his teachers’ names, and can relate things that adults in his life did that day, he does not appear to care about kids his age. He doesn’t much like to play with other kids and rarely talks to them. When he comes home from school, he can relate no things he did with any other children, and even after being in the same class with the same kids for two years, could not name any other kids in the class. There is one notable exception to this rule.

My kid digs blond chicks.

This is the only conclusion I can come to, after considering the following:

When in pre-school, there was one girl whose name he knew, and that teachers mentioned he would (sometimes) talk to. It was a girl named Trudy, who happened to be blond.

When in Kindergarten, there was only one classmate that Buddy Boy ever was able to recall, Anna, who was blond. She often tried to look after Buddy Boy and include him with class activities, even though he rarely responded.

Finally, when Liz was taking him to a gym class the other day (run by a local OT who is great at getting Buddy Boy to participate), he indicates this girl in the class who is probably 9 years old (and blond) and tells Liz “That’s my love.” I guess it was all Liz could do to keep herself from cracking up at that point. Here was her son, who hardly ever interacts in any way we recognize with other kids, declaring his love for a girl he doesn’t know (by his own admission, she has only ever asked him “Could you go stand somewhere else?”).

I’m not sure where this “blond thing” comes from. Liz isn’t blond. None of the females in our families are blond. Buddy Boy’s birthmother isn’t blond. Did he have a good experience with Trudy in pre-school, and is now transferring what he feels is her essence (her being blond) to other kids? Is it some innate thing that is expressing itself? Has he internalized this from watching TV?

I am not sure where this has come from, but I wish I understood it, as it seems a powerful force.

I'd love to harness that force, just as long as it doesn't involve Barbie or Paris Hilton.

Joe is 211

5-4-3-2-1

Of all the ways we've tried to transition Buddy Boy from one task to another, the one that has consistently worked is the simple statement that we need to stop doing "x", and now we will be doing "y", then counting backwards from 5.

Buddy Boy gets absorbed in activities, and transitions have always been hard on us all. His reactions are not nearly as severe as they used to be, but moving from one activitiy to another is still quite challenging.

We've tried (and still do) give 5 minute/3 minute/1 minute warnings. We've given choices for activities. We've tried premacking. Written schedules, clocks, positive reinforcement. Verbal explanation of the 5 w's , negotiation, and even just saying "We're going to do this now. Let's go." All of the above methods (and others I may have forgotten to mention) have been tried, and all have worked at various times to one extant or another. But none works as predictably as the counting down method.

I've tried to get away from it (it seems a bit mechanical and childish to be using with a 7 year old), but Buddy Boy doesn't seem to disengage as easily from one thing to start another without this prompt.

I wonder what exactly there is about "doing the count" that gets him to go with the flow. Is it the finality of it? I mean, it's not as if there are any dire consequences if he fails to comply. And when there are announced consequences, this method still works better than all others.

The method even works fairly well if I just use my fingers to count backwards, as I'll sometimes do rather than shouting out a countdown across a playground. So it's not the tone of my voice.

Perhaps it's the simplicity of it. Perhaps Buddy Boy interprets everything else as being open to negotiation (he loves to negotiate-which is usually viewed by us as a good thing), but he receives the countdown as singling the end of all negotiation and time to move on. I don't know.

We still try to use other methods (I like to give my kids as much autonomy as possible, and this method is just pure directive), but it's good to know that we have something that does work reliably.

Searching

Sweet Pea will turn 5 this month. She's just a little over 2 years younger than Buddy Boy. She's always been a typical younger sister. Pretty much equal parts adoring, competitive, and annoying to her older brother. She is outgoing, charming, willful, has a smile that lights up a room, and gets excited and happy about ordinary things.

Because Buddy Boy gets up earlier than Sweet Pea, she goes to bed approximately 30 minutes later than he does. Our routine is that for that last 30 minutes at least 20 minutes is spent reading to her.

Lately Sweet Pea has been somewhat fixated on us reading "An American Tail, an illustrated story" for her bedtime reading. This is a big departure from her usual desired fair- children's animal fables, collections of short children's stories, and her all time favorites, Disney princess stories.

An American Tail is a fairly long (63 pages) and fairly wordy book for a soon to be 5 year old. It's long enough that we have to break the book up over at least 3-4 nights to finish it. The book tells the story of a Russian mouse emigrant in the 1880's who is washed overboard on the voyage to America, and is separated from his family. He makes it to America in a bottle, and the rest of the story is a series of adventures in New York City while he searches for, and is eventually reunited with, his family.

Both Buddy Boy and Sweet Pea are adopted. Although we have pictures of their birth parents up in their rooms, occasionally send or get a card from her birthmother, and visited their birthmother once about a year and a half ago, Buddy Boy hasn't expressed more than a passing interest in his being adopted. It's harder to tell with Sweet Pea. She talks about her birthmother more, but it may be because Sweet Pea is more interested in the whole pregnancy/birthing process right now. When Sweet Pea mentions that she wants to have a baby, we start our mantra- "First you have to go to college, then you have to get a job. Then you can send your parents to Hawaii. :) Then you can get married if you want to, and then you can have a baby".

I've been wondering if Sweet Pea's interest in An American Tail is rooted in a vague feeling of abandonement because of adoption. My reading tells me that kids this age wonder what they may have done to make their birthmother not love them or want them. I also wonder if she feels the burden yet of being "different" from her peers in pre-school, because of her having been adopted. We talk about her adoption story, and reassure her that she had nothing to do with the circumstances that led up to her being placed for adoption. We also reassure her that we will always be there for her, and that we will love her always.

But I sometimes worry, with all the energy that is taken up with dealing with Buddy Boy's autism, are we missing obvious signs of things Sweet Pea needs from us? I guess all we can do is try to pay attention, and keep on loving them both, 100%, every day.

Joe is 209

Rolling onward

Spring came to the middle of the US in full force this weekend. It was such a beautiful day that we had to go out to the park. It seemed our whole town was out there today.

We took the bikes with us for the first official ride of the season. Our park has a paved path that loops around the outside of the park. When I announced we were going to the park to ride bikes, Buddy Boy initially didn't want to go. Inertia is always a force to be overcome, and he was involved in watching some cartoon he had just turned on. But I just told him we were going in 5 minutes, and he didn't put up any resistance when it was time to go (probably mostly because he really does like to ride his bike).

I'm really glad that Buddy Boy has gotten the hang of riding a bike. I'm a somewhat dedicated amateur rider (not nearly as dedicated as I used to be), and riding serves as moving meditation to me. The rhythm of the wheels and the pedals, the wind in my face, and the motion all combine to make a sensory experience that soothes my soul. It's been something that I wanted to share with Buddy Boy, and it's a good feeling knowing that he likes it, too. Last year when he finally got the knack of riding without the training wheels he was so proud of himself he just glowed. He knew he had accomplished something hard. And it made me feel so good to see him so proud of himself.

While loading the bikes in the car, Buddy Boy tells me he wants to take his safety gear (elbow and knee pads). By the end of last season (his first season riding without training wheels) he was declining to wear the gear, having built up confidence in his riding ability. I sense a bit of anxiety on his part that he'll still be able to ride.

Liz is also a bit anxious about his riding ability. She remembers how long it took us to lose the training wheels, and knows that it was only towards the end of the season last year that he was really getting it. "Perhaps you should take him to an open parking lot first to practice?" I declined, knowing (hoping?) in my heart that riding his bike would be to Buddy Boy like, well, riding a bike (something never forgotten once learned).

It went just fine. One push to get him going up the first little hill, and he was off, followed close behind by Sweet Pea, who is always trying to keep up/beat her brother who is 2 years older than she. Buddy Boy quickly regained his confidence, even becoming a bit overconfident and running off the path almost into a bush. He was a little upset, but quickly recovered. He's done a lot better over the last year in terms of being able to regain his equilibrium.

After two times around the park the kids wanted to go play on the playground equipment. I got pushed into duty for one of their favorite games, where daddy plays the troll, and they try to escape (basically a game of "chase me"). I also spot another kid who is probably on the spectrum, there with his dad. I debate whether to approach to make conversation. I look in their direction, wondering if he's noticed us. He hasn't, and he moves on.

An hour later and its off to home again. It's great that Spring is coming, and it's great to be rolling along again.

Joe is 210

The Sniff Test

Recently I had a chance to meet Roy Richard Grinker, author of "Unstrange Minds-Remapping the World of Autism" at a book store. He's been on a midwest and mid-southern tour of cities. There was only a small audience, so I got to talk to Mr. Grinker a bit.

I had had a hard day at work, rushed home to get in some play time with the kids, then went back to the book signing. After the book signing I went home and had a beer while I caught up on some e-mail. As per our usual routine, I got Buddy Boy up to go to the bathroom a little after 10:00 pm (if we do this he usually stays dry thru the night). As I bent down to tuck him in afterwards, Buddy Boy says "Don't drink beer, Dad. It makes your breath smell bad."

I've been thinking about smell lately and how important it is to Buddy Boy, as well as a lot of other autistics. Smell is probably the most ignored of all our senses. Most of us don't pay much attention to it when we have it, but miss it terribly when it's gone. It helps us make scents of the world. Smells can warn us of danger, help us taste our food, increase our level of sexual arousal, and trigger memories of other times and places. The first time I entered an operating room (other than as a patient) I caught a scent of something (cleaning agent, the smell of instruments coming out of the sterilizer, trace levels of anesthetic gasses?) that triggered a flashback to when I had my tonsils out as a 5 year old. It was a vivid memory.

Buddy Boy has always had a keen sense of smell, and unlike most NT people, actively engages his sense of olfaction as he interacts with the world. He smells the pages of books, food choices are heavily influenced by their odor, and he smells people when he meets them. He has learned that it's not considered polite to tell people that they smell bad, but doesn't think this rule applies to family members (which is OK with me, as long as he's not going around telling everyone else in the world they smell bad). I'm hoping that maybe his increased sense of smell might help him in the workplace some day.

So anyway, back to the book signing (you knew I wouldn't just let that go).

I haven't had a chance to read Mr. Grinker's book yet, so my comments are just about meeting him as a person and having a short conversation with him. Roy Richard is a very engaging man. He's the type of person I would love to have at a party, or to sit down over a pot of coffee or tea with. He speaks Korean and Swahili, and has traveled around the world doing epidemiological research on autism. But he's also a down to earth kind of guy. Someone very much like the rest of us, just trying to do the best for our families every day. He said that he sometimes still gets nervous going into IEP meetings, wondering whether the team will focus too much on the negative aspects of his daughter's performance rather than the positive ones.

Grinker definitely falls on the "acceptance" rather than "cure" side, and in response to an audience question recommended the blogs of Autism Diva (he likes her attitude and opinions), Kevin Leitch's Left Brain/Right Brain (a very well thought out and knowledgeable site), and Kristina Chew's AutismVox (where 10 minutes after any news relating to autism is released, it's up on her blog).

I don't pay nearly as much attention to my sense of smell as Buddy Boy, but Roy Richard Grinker passed my sniff test when I met him. I look forward to reading his book.

Joe forgot to weigh himself today (purposely?)

Always have a Plan B

One thing I've learned (and teach) when it comes to crisis management is to "Always have a plan B". Like a chess player, you always have to be thinking ahead about possible future states, your possible reactions to them, and the possible consequences of those reactions.

So although our present plan is to stay the course and try to work with our local public school educators to school Buddy Boy, we realize that that is subject to change at any time.

We've looked at private schools in our neck of the woods, and at least for now, none are appropriate for Buddy Boy, or the ones we feel are, aren't willing to take him on at present.

So rather than just hope for the best, we also have a "Plan B", which for now is home schooling.

Last year we exercised this option when things were spinning out of control for us. Rather than let Buddy Boy get wharehoused in a totally inappropriate setting, we withdrew him for a medical leave, and homeschooled him for Kindergarten.

I think we're fortunate that we live in the US in this regard. It seems that homeschooling is much more accepted here than it is in other places. This is one trend that Europe doesn't seem to "get" as much.

Tibetan Star's post for March 2, 2007 linked an article from Germany where a teenager was imprisoned in a psychiatric ward for being homeschooled. Also reported that day was a proposal from the UK to have a central computerized registry of all of those utilizing this form of education.

Here in the US, laws vary from state to state, but most are fairly lenient. Most states set some requirements in terms of curriculum and record keeping, but are fairly lenient when it comes to the credentials (or lack thereof) of parents. According to Wikipedia, in 2003 there were 1.1 million children being homeschooled in the US, or 2.2% of the school age population. There is even a legal defense organization to support those who choose to homeschool.

Sometimes, states even actively support parents in their efforts. Though most states don't directly financially support homeschools, this article details how one state, Missouri, is proposing to give support for supplies and books to homeschools.

Probably the biggest allure of homeschooling is the freedom from the predominant educational culture, which values conformity above creativity and individual expression.

For now, we've decided to stay the course where we are. Liz isn't wild about persuing the homeschool option (though she does a LOT of education with the kids as it is at the present time). I think she's mostly concerned with the record keeping requirements. But I'm sure we could handle this route if we have to. And it's always good to know you have a "Plan B".

Joe is 210

Bad News/Good News

What I've really been thinking about are the weighty issues raised on Kristina Chew's website, as well as elsewhere. But I'm just not up to tackling those things today. So we'll keep it a bit closer to home.

I haven't totally figured out how Buddy Boy is "graded" every day. Every day we get feedback from the school as to how he has done during each period of the day. He gets either a green light, yellow light, or red light. Besides getting a "light" for each period, there will also usually be explanations of his behavior for either yellow or red lights.

Last week Buddy Boy started "inclusion" for one or two periods each day in his assigned first grade classroom (he hasn't been there all year-instead he has been in a self contained sp. ed class). The first few days went well (novelty usually works to keep him distracted/interested) but the yesterday he got yellow lights, and today he got two red lights.

There never seems to be a consistent standard for what constitutes a red light vs. a yellow light vs. a green light. We have asked them in the past to clarify this, but have never really gotten a satisfactory answer.

Today's red lights were for two things. The first one was evidently when he was sent to the nurses office to take his midday meds. Instead of proceeding directly to the office, he decided to go and visit teachers in other rooms. While I realize that it's important to follow directions in school, marking an autistic kid down for socializing seems rather ironic to me (although it is consistent with the school district's unpublished motto "Obsequium Supra Omnia"-Subserviance above all else[Thanks to Dr. Chew's correction of my grammar]).

The second red light was for refusing to participate in a group activity. No notations were made that any screaming or physical actions on Buddy Boy's place took part.

So basically, I'm a little bummed that things aren't totally hunky dory with the inclusion thing this week. But in my view, it's great that he's not doing anything that can get him suspended/expelled. He's keeping it together enough to tell him what he doesn't like without getting physical with them. As long as that keeps up, we can work on the rest.

Next week, we have parent-teacher meetings, so perhaps we'll get a better idea of what exactly the different colors mean.

As negative as this post might sound, we actually are making progress with the school, and I think Buddy Boy is, too. And as long as we're moving in the right direction and not losing ground, I'm willing to work with it.

Joe is 210

Dirty Laundry

I almost titled this post "The Good, The Bad, and the Ugly". I figured I'd link to Thursday's post for the "good", Friday's for the "bad", and today's would elucidate the "ugly". But then I thought that might be too tacky.

What I want to talk about today is something I have been thinking about for awhile. It's how hierarchies are developed in the disabled world, especially when it comes to those with autism spectrum disorders.

A side discussion on this started in the comments section on AutismVox, but I thought it deserved a topic of its own.

Developing hierarchies within minority communities is nothing new. Within the African-American community in the US, skin color has served for a long time as one of the primary factors in developing an internal hierarchy within the community. Those who were light skinned were looked upon as more cultured, more civilized, and more likely to succeed. Conferences are held to study how this still goes on today.

When we were looking to adopt, we became acutely aware of adoption's dirty little hierarchy. Basically the main pecking order (for popularity of children) goes like this: white > asian > light skinned hispanic > mixed race african american > black. Native Americans are generally left out of this, as their tribes can (and often do) veto adoptions outside of the Indian Nations. There are also two other factors that dictate "desirability" and popularity. The first is healthy beats disability, and the second is babies beat older kids.

Sometimes the above factors interact to bump a kid up or down over another, but for the most part, skin color rules. No one ever talks about this much in public, but when you're looking to adopt it's communicated to you by the system (agencies, lawyers, and even some other parents thru adoption).

So one of the "interesting" factors that has emerged as we travel this journey with autism is of how hierarchies are formed within the autism community. It would seem that, just like society as a whole, verbal beats non-verbal hands down, in a big way. When people talk about "high functioning" vs. "low functioning", often the only major difference between the two groups is whether the person is verbal or not.

Probably the other big factor that enters into this is whether the individual conforms to societal norms for civility. Thus throwing a tantrum, screaming, yelling, stomping your feet, etc. instantly loses you 50 points on a 100 point scale. Not only is this valued in society as a whole, but even when I've been at functions where there are many autistics, the parents of those kids "acting out" are still looking around furtively, while some other parents seem to have a smug look about them. While the "guilt" of the parent of the kid acting out may be a holdover of how society treats her everyday, where does the smugness of the parent of a kid on the spectrum not acting out at the moment come from? [As a side note, I must confess that when I am in public and there is a NT kid "acting out", I sometimes am guilty of getting a little smug-right or wrong, I consider this different than looking down on "one of our own"].

I think that the only other major factor that enters into the equation of where one sits on the "autism hierarchy" is whether one has complete bowel/bladder control.

Other things that you might think are important don't seem to matter quite as much. Level of academic achievment, ability to play games, and ability to communicate matter, but don't seem to rise to the level of importance as the first three things I've mentioned.

Perhaps it's just innate, that as humans we want to a)place everything into a category, and b)be competitive. But I think we hurt ourselves, our kids, adult autistics, and everyone else in the "autism community" when we set up petty little hierarchies like this. Most of the "normal" world will probably have the same stereotypical view of you/your kid once you say the word autism. Trying to show how you are better than "those other autistics" hurts us all, whether you're talking to someone in the outside world, or someone within the autism community. We'd be much better off trying to change the stereotype that society as a whole has of autism. It's a harder (and slower) process, but in the end will serve us all much better.

Joe is 210 :( :(

What a difference a day makes

What a difference a day makes.

It was only yesterday that I was flying high, rejoicing in the good news regarding an autistic young adult being accepted and honored in our department.

This morning, right before going to work, I log on and peruse a couple of blogs, and what do I see but this story, quoted by MommyGuilt .

...On Monday, February 26, a 6-year-old autistic boy was read his rights and charged with Assault II for jumping on his special education teacher. This arrest was made when he and his mother went to pick up some files at the Kailua-Kona, Hawaii Police Department ...

I think that the reason that this case struck me so hard was that many of the facts of this case seemed to parallel what had happened to our son a year and a half ago.

...Prior to jumping on his teacher, he was removed from his current classroom because the staff was worried he would hurt himself or others, and kept him in time- out from 10:55 a.m. until his mother picked him up at 2:00 p.m. ...

When Buddy Boy was in Kindergarten (last school year, as a 5 year old) he, like many kids on the autism spectrum, had issues with self control. Some of it was reacting to things in the environment, some of it may have been from delayed maturation, and I believe the majority of it probably stemmed from the system expecting a 5 year old with autism to be compliant at all times. All of their “interventions” were directed at getting him to be compliant. They didn’t care whether he learned anything at all. Indeed, any subject matter they presented was way below the types of worksheets that his mom, Liz, had him doing at home. And when they did do things in class, they insisted on repetition to the nth degree. This, of course, resulted in boredom and frustration on Buddy Boy’s part. Despite having all these things pointed out to them, his “teachers” persisted.

Due mostly to an idiotic curriculum not suited to him, and probably partially to lack of self control (in the face of being taught by idiots) Buddy Boy trashed the classroom one day. He first threatened to trash the classroom (“I’m going to throw things”) to which they responded with their direction of “Sit down, Buddy Boy” three times, dutifully recorded on their chart that he had refused to sit down, then stood back when he started pulling things off the shelf. No one acknowledged that he was angry and/or frustrated. No one tried to find out why he was upset. Just a command to sit down repeated three times. Mom was called to come and get him and take him home.

Buddy Boy was suspended for three days for that, and moved to a “resource room” where he was the only student. We were warned at that time that if he continued to be violent and a threat to others and himself that the police would be involved. Despite our convening another IEP (which they kept delaying) and attempting to get a much better behavioral intervention plan in place, the staff continued to do things to set him off (deliberately, I suspect, but have no way of knowing other than their e-mails obtained later which intimated that they had a plan for a solution in place, while during this time they were telling us that everything was fine). They had him “taught” by as many as 7-8 different “teachers” per day, on no consistent schedule. They would print up a schedule and show him on the clock when he would have a break, then another teacher would come in and cut the break short. Still, all they were teaching was compliance with rules, and repetition of busywork. He lashed out a couple of times at them (slapping and kicking), and each time he got “written up” without suspension. The disciplinary write ups had these check off boxes on the form for reasons they thought the behavior occurred. Almost all of the boxes had to do with the student (acting out, seeking attention, secondary gain, etc.). There maybe was one for the environment, and none at all for “provoked by idiot staff”, which was what I would have checked off.

Buddy Boy acted out again (in this stellar teaching environment) and threw a stapler across the room. This earned him another 4 days suspension. At this point he was one suspension away from a mandatory placement in another setting. We had already surmised that they were trying to build a case against Buddy Boy as an out of control kid that was a menace to himself and others, and had to be removed. The placement that they had in mind was in a separate school in a class of emotionally disturbed kids.

Meanwhile, just so one can understand how Buddy Boy was doing in general, this is what was happening outside of school. He had a weekly gymnastics class (that he grudgingly went to, didn’t look forward to) where he functioned within a group setting with individual assistance by a high school student with no special ed training. He also attended swimming class every Saturday morning (another non-preferred activity-he likes free swimming, but not swimming class). He also functioned just fine in this class being taught by high school kids for the most part. He attended church services without acting up, and though he argued with us a lot at home, we had gotten to the point where he was not aggressive with us.

...The school has been asked repeatedly to at the very least provide a one-on-one aide that is trained in the art of dealing with autistic children, or move him to a school for autistic children. ...

In our case we had asked several times (since before he was even admitted to Kindergarten) for a 1:1 aide. Each time we were refused.

By this time we had progressed from just having an advocate with us to having a lawyer involved. We short circuited their attempt to have him expelled by withdrawing him for a medical leave, and Liz home schooled him for six months (to complete the school year). He had someone from the school provide some instruction in the home, but again they were somewhat clueless (instruction below level, repetition, repetition, show me you are compliant).

Meanwhile we continued to convene an IEP for the following year (this year) with multiple meetings with staff and lawyers. I think one of their strategies was to try and bankrupt us by having more and more meetings. I think they also thought that if they had enough meetings then only my wife would show up, and not me. They thought wrong.

Our compromise that we agreed to was half time in their emotionally disturbed classroom (though we had it in writing that they did not have permission to use their preferred methods of discipline-physically removing kids into a padded room or a wooden box). The other half time was to be spent in a special ed class located in a regular school (NOT the school he was in before). For agreeing to this we got them to agree to an outside evaluation of Buddy Boy’s behavior. We had to wait a few months into the school year to get the evaluation, but the outside group said Buddy Boy was doing fine, and indeed should be in the least restrictive environment, and that there was no reason to bus him back and forth between two schools every day.

So now Buddy Boy is in the special ed classroom in the regular school, and just this week he had his first inclusion in a “regular” class for art, which went just fine.

I thought I was getting past my anger at how my son was railroaded last year, and of how idiotic many of the “experts” at his previous school acted. And how malignant they were in plotting behind the scenes to get him thrown out, even if it meant having a police record. My reaction to this article today tells me I have a ways to go.

The mother in Hawaii further relates:
Many people have told me that I need take this to the media to finally get the help we need, and that is what I hope to do. I have done everything the school has asked and tried to work with them, to no avail. Now, here I am with a disabled 6-year-old with Assault II charges against him.

Getting the media involved might just work. It is my impression that Americans in general have become much more hardnosed and unforgiving of the acts of adolescents, and this has also led to prosecutors trying to prosecute younger children (some as young as 10 years old) as adults in violent crimes. But I still think that 6 year olds get somewhat of a pass in society, and media attention might help. Of course, being disabled lowers the age of what is considered acceptable to prosecute, as does being poor or a member of a minority.

Finally, the mom writes:
We are filing for a Fair Hearing. But I understand this will take months and my child is not being educated nor is the school providing any help with his education, even though they know neither he nor I are able to go on school grounds because of the temporary restraining order."

Finally, something they definitely can’t do. As I hope the mother is aware, she needs a lawyer. Maybe two. Definitely one for the educational case, and possibly a second one for the criminal case. If she's lucky the special ed/disability rights lawyer can do both for her.

IDEA 2004 spells out specifically how they can kick your kid out of school (suspensions, expulsions), and how they can place him in an alternative setting. It also spells out what they have to do in terms of providing education. They end up not having to do much, but they have to do something.

The mother needs to inform herself what IDEA 2004 actually says, and the first place to start is at the Wrightslaw website. If you scroll down the left hand side there is a section called "Law Library". In there you can see a button to click on for IDEA 2004. If click thru to the IDEA 2004 Statute and Regulation page, there is a link to download the whole law with commentary from the Federal Register.

Basically the law says that the school can suspend a child for up to 10 days without providing any instruction. After that the IEP must meet to decide what is appropriate to be provided (this, of course, is the same IEP team that got you into this mess to begin with). The school also must provide a functional behavioral assessment and behavioral intervention services and modifications, that are designed to address the behavioral violation so that it does not recur.

Once a change in placement is determined (and they can't kick you out without a change in placement), within 10 school days an IEP team meeting must take place to determine whether the behavior was a result of the child's disability or not (of course, I've never heard of a school in this situation admit that the behavior was a result of the disability, or a failure to follow the IEP).

Finally, they can remove a child to an "interim alternative educational setting" for not more than 45 days, even if the violation was secondary to the child's disability if one of the following special circumstances occurs: 1) carries or possesses a weapon at school, 2) uses or possesses illegal drugs at school, or 3) has inflicted serious bodily injury to another person while at school or a school function. Of note, "serious bodily injury" is defined in the US Code as follows:

Title 18 USC Sec. 1365
(3) the term "serious bodily injury" means bodily injury which
involves -
(A) a substantial risk of death;
(B) extreme physical pain;
(C) protracted and obvious disfigurement; or
(D) protracted loss or impairment of the function of a bodily
member, organ, or mental faculty; and

(4) the term "bodily injury" means -
(A) a cut, abrasion, bruise, burn, or disfigurement;
(B) physical pain;
(C) illness;
(D) impairment of the function of a bodily member, organ, or
mental faculty; or

(E) any other injury to the body, no matter how temporary.


My guess (and I am NOT a lawyer, and none of this is to be construed as legal advice)is that they would have a hard time proving "serious bodily injury". But unfortunately, this person needs a lawyer badly, to try and stop the steamroller that this school district has set in motion.

I really wanted to bask in the good feeling I had yesterday for a while. I'm a realist, and I know that not everyday is good. And part of me wishes I didn't see that blog posting this morning.

But part of me knows that being vigilant, and keeping our legal ducks in a row is an important part of advocating for Buddy Boy. Because one of my worst fears is that something like this will happen to us.

Joe is 209

Small Victories

I've written before about "Little Hurts". Well today I get to report on the other side of the coin, the small victories.

I work in a department of about 100 people. Our offices are in several different buildings spread over 4 or 5 city blocks. About two years ago or so, our department was approached by a local agency that helps support disabled people in finding (and keeping) jobs. Up until this time each individual section tasked someone to interface with the campus mail system. When this agency approached our office manager to inquire whether we could use anyone, she decided that she could free up secretarial time (which we needed to do) and create an internal mail distribution person for our department.

Susan (our office manager) doesn't have kids of her own. She is a perfect employee, always knowing exactly how to get things done, never complaining, and being very efficient in getting the best out of others. Some of the secretaries think she expects too much, but I've always thought she did a great job.

Susan hired Michael thru this agency. He is paid a normal salary for this position. And he is quite obviously autistic. His gait is a little off, he rarely makes eye contact, and he doesn't say much. Michael is about 18-20 years old, and lives with his parents. The agency supported Michael by sending a "coach" with him for the first few weeks who worked very closely with Susan and Michael to get him trained. Now the coach comes periodically to check on him, and more often if there are particular problems that we need him to help us with.

I've seen Susan reading things about autism on the web, so as to try and understand how best to work with Michael. She has been as instrumental in Michael being successful in his position as the agency that placed him.

Now for the really good part...

I was walking thru the department today, and I look up at the wall where there is a framed certificate on the wall announcing the "Employee of the Quarter".

MICHAEL IS THE EMPLOYEE OF THE QUARTER!!!!

I was so happy I almost cried. The employee of the quarter doesn't get much. You get the certificate, bragging rights, and I think you get a small token gift. The award is voted on by all the members of the department every quarter.

So it isn't that it's such a big thing. But to me it's HUGE. A young adult autistic who just as easily could have been cast aside is not just "tolerated" by the people in our department. He has been accepted. And supported. And I just had to share that.

Joe is 209