Say it Ain't So, Joe

Arrrrrggggh ...

After hearing of the horrendous shootings in a Colorado movie theater, I mentioned to my wife Liz that "At least no one has mentioned the 'A word'".  "What?" she said.  "You know, said that the shooter was autistic".

The next day, I hear that news commentator Joe Scarborough said,

"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale," said Scarborough, whose son has Asperger's syndrome. "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected."

 While I've come to expect such drivel from uniformed people that lump all seemingly similar things together, do I really want to get the same stuff from someone who is the father of someone on the autism scale spectrum?  No.

Well, old Joe felt the heat after his comments, and has backpedaled.

But that's not what bothers me. 

What bothers me is that Joe Scarborough has outed himself as one wholly disconnected father.  I mean, come on.  Who that has someone autistic in their family refers to them as being on the autism scale?  I mean, what responsible parent hasn't been to enough IEP meetings, read enough literature, talked enough to know that it's the autism spectrum?  And who, who has a son that struggles to be understood and to fit in, would even think of associating autism with what happened in Colorado?  I mean, how exactly will such comments lead to greater understanding and acceptance of those who are autistic?

Joe's phoning it in.  It appears he's the dad that mothers all complain about.  The one that disengages, backs off, and lets mom handle it.  The ugly, stereotypical disconnected dad. 

I'm sorry for Joe, and more sorry for Mrs. Scarborough and their son.

Your Guest Speaker Has Arrived!

photo credit-SeaDave
Creative Commons license

Liz related that these were the words that Buddy Boy said when he entered the meeting at the school this afternoon. Was this a disciplinary meeting, an IEP meeting, something worse? No. Buddy Boy's principal (who has a special education background) asked Buddy Boy if he would mind talking to a group of teachers and staff about autism. Dr. D. is a fair person who has high expectations from all of her students, and has also gone out of her way to give Buddy Boy the benefit of the doubt in multiple instances when he has gotten into "situations" at school. We will miss her next year when he goes to middle school (for those that are not regular followers of this blog, Buddy Boy is currently mainstreamed in a regular 5th grade class).

Dr. D. had a few lunchtime meetings with Buddy Boy to discuss what questions she was going to ask him in front of the group (things like how he felt about being autistic, what he liked about it, what difficulties it presented, etc.). I'm not sure what the purpose of the gathering was, but it included teachers from all of the district schools, including the middle and high schools. In short, it was a pretty full room.

Now you would think that most people would be a little nervous talking to such a big group. I myself get nervous talking in front of groups, and I teach! For his part, Buddy Boy gets extremely anxious when he does anything with his peers. He WANTS to be involved with them and do things (singing, band), but at the last minute his anxiety is so high that he has a lot of difficulty partaking in performances, even when he is only one of a group of many that is performing. Thank heaven for occasional guardian angels.

But this afternoon, in front of a room full of teachers, he was in his element. Not a trace of anxiety. He stood in front of them, talked for about 10 minutes, then fielded questions for another 10 minutes or so. I suspect he helped their understanding of how autistics think both directly and indirectly (at one point he did one of his 270 degree segues, saying "...speaking of which, if we could harness the space inside of atoms, we could probably come up with a new energy source to help people out").

The audience was friendly and respectful. One art teacher, who had had him briefly as a student 5 1/2 years ago for a couple of months (when we had a really bad experience in Kindergarten) said that she remembered Buddy Boy. Buddy Boy turned to look at her, addressed her by name, and told her he remembered making a "pinch pot" with her. It's amazing the things he remembers sometimes. Another teacher related how when they were covering a unit on caves, that she learned new things from Buddy Boy that she had not known about caves before.

Liz and I both agree that many there were probably surprised that Buddy Boy considers his autism a "gift". He admits that it causes difficulties sometimes, but he definitely sees the upside of being autistic. He came to this all on his own, without us trying to push him in any particular direction. I think it's great that they see such a perspective, so that perhaps some of them will also see the upside of being autistic, and not pigeonhole students with negative assumptions. I also think it's great that Dr. D. sets such a great example to her teachers and staff. She really gets the message out that she wants ALL of her kids to succeed.

I just think it's great that I can write a post regarding school and a meeting, and feel good about it.

Joe

"If That"

Good News! Buddy Boy has decided that he likes the clarinet, and wants to play in the school band. For 5th grade music, students have a choice of either taking a "normal" music class, or participating in the band. Buddy Boy chose the band. He wanted to do this when school started, and he wants to do this now.

Bad News! We came home to find this letter:

"Buddy Boy" is not finding much success in band. He is able to play alone when we do solos, but when the whole group plays, he is not able to focus on what we are doing and participate. He is often taking apart and putting together his clarinet. When he does play with the group, he is overblowing and squeaking quite often. He is probably trying to play louder so he can hear himself, but this causes him to have a poor tone and squeak. "Buddy Boy's" behavior during class has improved and having "Mr. Jones" with him has been helpful.

Our interactions with Buddy Boy's present school have been pretty straightforward, with only a few bumps in the road. Most of the time, his teachers have liked him (the most important thing you can look for, IMO), and have approached any problems with an attitude of wanting to find a successful solution for him.

I suspected band was going to be a problem. The band teacher is a district wide teacher. Not only is she the teacher for the grammar school (up through 5th grade), but also for the middle school and high school. So we're stuck with her for the duration. 5th grade band is (as I stated above) offered as an alternative class for music, not as an elective after school activity. Students attend during regular class hours. When he expressed his wish to join the band, Liz took him to the band leader, to see what she recommended as an instrument. She looked dubiously at him, and stated something to the effect of "I think he'll be able to possibly play the clarinet, if that". We were hoping that Buddy Boy's determination and charm would slowly win her over, but that appears not to be happening.

About four weeks in we got a call that Buddy Boy's behavior was unacceptable. Liz asked if the leader had discussed this with his regular or special ed teacher (she had not). I think she expected us to say "Oh, well, we'll just withdraw him from band." As he really likes it, we're not going to do that. Like most kids on the spectrum, he takes a while to "get" new situations. With a little guidance (and yes, some forbearance on the part of others) he eventually settles in, and does reasonably well. After that conversation, "Mr. Jones" was added as an aide during the class, to help him not be disruptive. No mention ever has been made regarding Buddy Boy's ability to play.

For our part, we took him for some private lessons over the summer, knowing he wanted to play. He didn't learn much music, but started to get a grip on some of the basics (how to put it together, where to put his fingers, how to play scales). We thought he was doing OK. I'm sure he's not the star of the band. But he practices 3-4 times a week, and seems to do reasonably well (he can play several of the songs sent home with him). When I work with him, in addition to having him play at his own pace, I either count or hum, to simulate the rest of the group playing, and get him accustomed to playing on a group rhythm. Most of the other kids have not played before, so it's not like the rest of the group is filled with virtuosos. We can't take him for private lessons during the year. He has about an hour after school where he will pay attention, and that time is used every day by Liz keeping him current with homework and stuff he didn't finish in school. Saturday mornings he takes part in the only regular physical activity that he'll still do, ice skating lessons. We don't want to discontinue that.

In the US, we have laws like the ADA (Americans with Disabilities Act) and IDEA (Individuals with Disabilities Education Act) which theoretically ensure that each individual will be treated fairly, and not discriminated against. But the law is one thing, and attitudes another. And when individuals decide that they don't like your kid, and don't want to "deal" with him, then it's an uphill battle. Many studies have shown that teacher's preconceived notions of a child's intelligence determine whether that child will be successful in their classroom. And it just appears to me that this particular teacher decided up front that our kid just wasn't going to be successful.

I'm not sure how we're going to proceed on this. I don't think they have to keep him in band (they could say he's not working out, he has to take the "regular" music class). So calling an IEP and making demands for them to make it work might indeed backfire. So I suspect we'll talk to his other teachers, and possibly the principal (who has mostly been supportive and understanding), and see what we can do. Somehow I doubt that we'll change the band teacher's attitude, but I'd at least like to see Buddy Boy be able to stay in band this year.

------------------------

Apologies for not posting more often. Things have been busy. School continues (I should finish in May!), work is busy, and home has been hectic. Life goes on.

Joe

Turning the Disability Tide

One of the complaints that I have often seen in regards to how autism is treated by society is that autism is approached from a medical oriented/disease based perspective, and not a social model.

In a recent JAMA (Journal of the American Medical Association, Vol. 299 No. 3, Jan. 23, 2008) journal there is a commentary written by Lisa Iezzoni, M.D. (Institute for Health Policy, Massachusetts General Hospital and Harvard Medical School, Boston) and Vicki Freedman, Ph.D. (Department of Health Systems and Policy, School of Public Health, University of Medicine and Dentistry of New Jersey, Newark). The article is entitled "Turning the Disability Tide: The Importance of Definitions". Unfortunately the entire article is only available online if you (or the institution you work for) has a subscription to JAMA. Requests for reprints can be made to the corresponding author, Dr. Iezzoni, at liezzoni@partners.org . JAMA can also be found at most public libraries.

Both Dr.'s Iezzoni and Freedman served on the Institute of Medicine's Committee on Disability in America, so one can presume (both from that affiliation as well as publication in JAMA) that their opinions are valued in the medical community on this subject.

The authors start with a brief overview of disability in America:

Forty million to 50 million individuals in the United States now live with potentially disabling conditions. According to the Institute of Medicine (IOM), this number will likely increase substantially in coming decades. Aging baby boomers will fuel much of this growth as this enormous cohort enters age ranges with the greatest disease and disability risks. Although rates of some serious limitations among elderly individuals have declined, sobering reports warn of higher rates of potentially impairing conditions among children and working-age adults. ...

...As have others, we argue that devising strategies to confront disability must first start by defining disability. Definitions implicitly connote goals, which in turn suggest potential solutions and targets for action. When it comes to preventing or deterring disability, this definition matters.

The authors then describe a brief history of disability definitions, detailing how by the early 1800's physicians had been designated as impartial arbiters of disability, and how increases in technology that allowed them to obtain objective data only solidified that role. Moving on, the article describes how:

Decades later, social changes upended medicalized notions of disability. Confluent forces, including the independent living movement, self-help initiatives, consumerism, deinstitutionalization, and civil rights campaigns for racial and ethnic minorities and women, catalyzed an incipient disability rights movement. By the 1970s, a new paradigm held that "problems lie not within the persons with disabilities but in the environment that fails to accommodate persons with disabilities and in the negative attitude of people without disabilities." Disability is "imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society." This new "social" model of disability diverged importantly from medical model tenets. "The social model . . . views the issue mainly as a socially created problem and basically as a matter of the full integration of individuals into society. Disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment." The issue is therefore an attitudinal or ideological one requiring social change, which at the political level becomes a question of human rights.

Finally, the authors remark about the importance of the International Classification of Functioning, Disability and Health (ICF) which was published by the World Health Organization (WHO) initially in 1980, later revised in the 1990's, and unanimously approved by 190 member countries in 2001. The authors support the fact that the ICF integrates the medical and social models of disability.

Explicitly recognizing the role of external forces (physical, social, and attitudinal) in precipitating or mitigating disability represents one of the major contributions of the ICF. Equally noteworthy, the ICF introduced participation in daily and community life as an explicit component of health. This concept shifted the emphasis from strict prevention to maximizing functioning and well-being—perspectives consonant with public health goals in an aging society. By presenting disability as a continuum, the ICF emphasized the universality of disability and stressed its "relevan[ce] to the lives of all people to different degrees and at different times in their lives."

My opinion (as I've stated before) is that doctors, for the most part, are not the initiators of the oppression that the medical model places on those with disabilities. Rather, they reflect the predominant societal thinking at a particular time and place in history. This commentary, then, is important because it means that societal perceptions and goals are changing.

While I think it important that physicians lead when possible, I think that for the most part this commentary reflects an emerging trend within society, and not just the views of two isolated individuals. Getting definitions right will help society to fashion laws and policy that lead towards a more inclusive society. And that is something I can feel good about while I contemplate what the future holds for my autistic son.

Today's saying

Every day at work one of my co-workers puts a saying on the "white board". I walked in today to find this up there. Needless to say, I had a smile on all day.

Wizards and a More Colorful Kansas

In "The Wizard of Oz", Dorothy is transported to a strange place, where every thing is the same, but different. This place is exciting and colorful, but also somewhat scary to her. She wants to get back home (to normalcy-represented by a dreary black and white Kansas) but doesn't know how to get there. In her quest to get back home, she is directed to a wizard, who doesn't initially think she has any way of getting back to Kansas, but he doesn't want to disappoint her.

The wizard puts on a big pyrotechnics display to show how great he is, gets angry at Dorothy when she questions him at all, and promises her if she just does X (get the wicked witch's broom) then Y (getting to go back to normalcy) will happen. Wanting desperately to go home, Dorothy does as the wizard says.

While it's not a perfect analogy, I often think of autism in terms of this movie. When parents first find out that there kid is "different", they don't stop to look at all the wonderful ways that that difference can be good. They don't look at all the ways that their child is essentially the same as all other kids, just different. And so they focus on a quest to "get back to normalcy". In doing so they are guided by a lot of wizards who give false hope to them. These wizards may or may not believe in their false magic, but promise parents that if "they only do X" then they will get back to their precious normalcy.

When the magic doesn't work, they are scorned if they question the wizard. If they do get back to some sense of normalcy, then the magic was obviously responsible.

But once in a while a good witch comes along. One who can show you that you had the capacity to "go back home" all along. All you had to do was look inside yourself to find the person you were, and look at your child and see the person they are. The good witch helps you to see that Kansas doesn't necessarily have to be a dreary black and white place. Kansas can be colorful. There's room in Kansas for all types of people, and if you had looked hard before, you would have seen some of them.

Kevin Leitch is one of those people that have helped to show me that Kansas can be a colorful place, and that we are all the better for it. He has provided a place for all types of people to congregate, and has helped to show that acceptance and inclusion are the keys to a better society for all of us. And I will always be grateful to him for what he has done.

And all the flying monkeys in the world can't change my mind.

She's So Beautiful

These are the words that come out of 4 out of 5 people's mouths when they first meet our daughter, and it's been bugging Liz and I. It's not something that we think about every minute of every day, it's just one of those little things that bug us.

Why, you ask?

Well, we've asked ourselves the same question. Why does this comment rankle us and just not feel right? It's not that she's an ugly kid. In fact, she is very cute (you'll have to take my word for it, as I'm not going to post pics here that would fully identify her). She has a smile that lights up a room, and enough social skills that she could compete with a politician in working a room. And we don't dress her like she's in a beauty pageant. So what's so wrong about pointing out that she's a good looking kid?

Well, for one thing she's only 5 years old. And people have been saying this for at least the last 2 years. And I just don't think it's appropriate to talk about really young girls as "beautiful". At least not when you first lay eyes on them. There's something in the comment that just sexualizes this young child by referring to her as beautiful. I mean, isn't there anything else that you might say? Like "She has a nice smile", "My, she's well behaved", or just "Hi, Sweet Pea!". OK, so most days they'd be stretching the truth if they said she was well behaved, but we wouldn't mind.

Unfortunately, we think that that the base reason that people say this probably doesn't have to do with people purposely trying to make her a sexual object, but it's just as bad. We've come to the conclusion that people do this because we are white and Sweet Pea isn't (we are a family thru adoption-both of our kids are bi-racial African-American/Caucasian). So when people first encounter Sweet Pea being introduced as our daughter, they're naturally a bit taken back. I get that. She doesn't exactly look like us. So while they're feeling awkward they feel the need to say something nice, and so come out with the "She's so beautiful" comment.

While I don't really think people are trying to be malicious, I wonder why this particular comment comes out. I suspect that it might have to do with the "unofficial racial preference rank order for adoption", which places relatively more value (in decreasing order) on kids that are white, asian, hispanic, and finally African-American. Being of mixed race (with half being Caucasian) bumps you up a half notch. So I think a big part of this comment thing is just people feeling sorry for us that we adopted kids that were of "lower preference", and wanting to say something to make us feel better.

Thus far Liz and I just usually mumble something non-committal, and go on from there. We don't think that people are consciously being rude, so don't make a big deal out of it. We sometimes think that maybe we're just being overly sensitive, but the comment just has never felt right. So, dear readers, let me know what you think. And if you ever happen to meet us on the street, you now know what not to say.

(Non)Sense and Sensibility

This week, in a move that can only be described as "Out of this world", the lawyer for Lisa Nowak (the former astronaut who stalked and assaulted the girlfriend of a fellow astronaut) is laying the grounds for an insanity defense because she:

...suffered from major depression, obsessive-compulsive disorder, insomnia and "brief psychotic disorder with marked stressors," defense attorney Donald Lykkebak wrote. ...

In the court document, Lykkebak also indicates that Nowak may suffer from Asperger's Disorder. ...

Of course this is not the first time that some form of autism has been linked with criminal behavior. The Virginia shootings a year ago were a classic example. One wonders when "autistic bashing" will fall out of favor, but I guess we should expect it when there is a vocal minority in families affected by autism that uses derogatory language when referring to autistics.


Meanwhile, much more down to earth (in oh so many ways) was a story recounting how a brother of an autistic person and some of his friends just finished roller blading from Florida to Maine in the U.S. (2000 miles/3200 km) to raise funds and awareness about autism. Their group they formed is called "Rolling for Autism".

Dan Tatar (whose brother Ben is autistic) and four friends from Union College in Schenectady, N.Y. made some comments at the finish line of their journey:

..."It's not a disease; it's not an illness. It's something that a lot of people have. They're interesting people; they're great people. The support network of their families and friends is incredible. That's why these people are so successful," he said, as his brother Ben hollered "Yeah!" to the crowd. ...

One of the above stories will be picked up by major news outlets, and the other, while it had significant support from a number of individuals and groups, is likely destined to be seen by a much smaller audience. I encourage all to check out the Rolling for Autism website, and drop them (or your favorite pro-autism group) a donation. Positive voices need to be heard and supported.

Sensory Issues

3 days ago Ang dropped by my blog and commented on my vacation travelogue:

Enjoyed reading about your vacation. We kicked around a Colorado road trip this summer as well, but were concerned about the sensory stuff associated with elevation changes. (Ended up going to St. Louis instead). I'd be interested in knowing if Buddy Boy had any problems? Or does he generally not have sensory issues anyway?

I almost replied that "No, Buddy Boy doesn's have any sensory issues." Then after a bit I thought, well no, he doesn't really have any sensory issues, if you don't count things like when he orders grits and sausage (one of the few restaurant foods he'll eat) the grits have to be the right consistency. Or the fact that when he gets stressed a bit, he reverts to chewing on things (something that he doesn't do nearly as much as he used to. Or that the sun bothers him when it's too bright, the music's too loud when he doesn't like it, too soft when he does, and yeah, he's not wild about clearing his ears to equalize at altitude.

But a couple of things stand out. One, that all of these things are worlds easier to manage (both for himself as well as us) than they used to be. And two, that we really don't notice them much anymore. They're just part of who he is, and how he is. And accomodating him and what sensitivities he does have is not that big a deal, and comes naturally.

We plan ahead and let him pick which of his stuffed toys to take with him as a comfort item. I always carry a few extra McDonald's straws in the car (they're thicker and heavier than other restaurant's straws, and hold up better for chewing). His soft sweatshirt jacket is left in the open in the car, so that he can lay on it as need be (or escape under it). Although we give him gum to chew as we climb in the mountains, the first time his ears are about to pop he gets anxious. We've talked about it ahead of time, though, and subsequent times are weathered quite well by him.

So I guess the bottom line is, Buddy Boy is not nearly as sensitive as he used to be, he's gotten better at figuring out ways to help himself and communicating to us how to help him, and we've gotten better at anticipating things that might need amelioration.

So there aren't any issues, after all. I was right to begin with.

L'Arche-An Interesting concept in community

So we're on vacation (holiday) this week, and today found us driving from Limon, Colorado to Durango, Colorado. Much of the trip is a rising and falling two lane highway thru the high plains of rural Colorado. As the road rose and fell, it became difficult to receive any radio stations for more than 5-7 miles. I cycled the car radio from Jimmy Buffet to Spanish folk songs to preachers to (I kid you not) Spanish rap music (I was heretofore unaware of the genre).

Finally we reached a place where there was only one public radio station that had any reception. Fortunately, we were able to receive this station for about an hour. The show "Speaking of Faith" was on, which is often fairly interesting, as it has in depth discussions of a wide variety of topics of both general and religious interest. Today the show was a look at a L'Arche community in Clinton, Iowa.

I had never heard of L'Arche before today. After hearing of it today, I must admit it sounds intriguing. I have an instant and intense revulsion to anything that smacks of institutionalizing individuals. And even "group homes" have a somewhat patronizing feel to me. But in listening to the discussion today, I have to admit that at least the people interviewed at L'Arche are talking the talk, and may be walking the walk as well.

The L'Arche movement was started by philosopher Jean Vanier in 1964, when Vanier invited two men with mental handicaps to live with him in a home in Trosly-Breuil, France. From this humble beginning, the movement has spread to include 120 communities worldwide, with 16 being located in the US.

The members of each community that have mental handicaps are referred to as "core members", while those that live with them are referred to simply as "assistants". Some communities are based in Catholicism (as the original community was), some are Christian of mixed denomination, and others are multi-religious. The communities are based on four principles:

The recognition of the unique value of persons with a developmental disability to reveal that human suffering and joy can lead to growth, healing and unity. When their gift is received, individual, social and ecclesial change occurs;

Life sharing where persons with a mental disability and those who assist them live, work and pray together, creating a home;

Relationships of mutuality in which people give and receive love;

Christian community that welcomes people from all faiths, based on the Gospel and dependent upon the Spirit of God where faithful relationships, forgiveness and celebration reveal God's personal presence and love.

The website and the above principles don't do justice to what I listened to. The people that were interviewed that were assistants at the Iowa L'Arche community provided many examples of how the people that they lived and worked with became their friends and of how they recognized that their communities were not a solution for society, but rather a signal to society that they needed to find a way to respect all of those in our midst and find ways to integrate them into society.

Some also reflected on how all of us in society are handicapped in some way, and of how we need to value each and every person in society, and recognize what they can contribute. Of perhaps greater import, the people interviewed recognized that not everything was worked out in their communities, problems existed, and that everyone in the community needed to work together to solve them.

The program is available for listening or downloading online here. Krista Tippet, the radio journalist, really did an excellent job with this. Her treatment is far superior to what I write here today.

Although I hope and expect that my son will be able to live either independently or semi-independently, it is possible that this will not be feasible. If he were to choose to live in some type of communal arrangement, I can think of far worse places than a L'Arche community for him to live in.

Out of the Mouths of Babes...

photo credit- Shaun.numb

So, Liz was walking thru the local mall the other day, and they passed the central fountain (which has always been a big hit with Buddy Boy since he was at least 6 months old-even after sitting there watching it for 30 minutes he would scream when we left it). On this day the fountain was spewing pink water (which was just fine with Sweet Pea, as she loves anything pink).

The pink water was a marketing thing for the Susan G. Komen race for the cure event that is coming to our town soon. In explaining the event to Buddy Boy, she explained that everyone doesn't always run, and that many walk, much like the "Autism Walk" that we have taken part in in the past. Well Buddy Boy put together the notions of "curing breast cancer" and "autism walk" together in his brain right away, and even though Liz never said anything about curing autism, he said,

"I don't want to be cured. I'm not sick."

He then seemed to infer that the Autism Walk money might be used to "cure" autism, because he stated,

"If we go on the Autism Walk again, we can just take their money. I am not sick."

Later, when Liz was in the car with the kids, listening to the same National Public Radio (NPR) story on autism that Autism Diva was, one of the participants referred to autism as a disease. Immediately Buddy Boy piped up from the back seat,

"It's not a disease!"

Liz agreed, saying that autism is actually a disorder, to which Buddy Boy responded,

"It's not a disorder, either! Autism makes me special!"

To which Liz could only agree.

Now I know that what a 7 year old puts forth as his opinion cannot be reliably said to be his opinion alone. Certainly a lot of what he says are just things he's heard. But while we certainly try to keep a positive spin on autism, we don't usually discuss autism politics or controversies in front of him (we're much more focused on discussing things like the proper channeling of aggression). So when I heard this I was glad that Buddy Boy had what I considered a very healthy view of things, and seemed to be integrating his own feelings on the subject with things he's heard from us and others. On top of that, all I can say is,

"That's my boy!"

In Praise of Peers

In the world of autism, we often look to a small army of people with titles and training for assistance-SLP's, PT's, OT's, social workers, psychiatrists, teachers, autism specialists, aides, etc. All of these people are great, and I'm glad that they exist. They all have helped Buddy Boy at one time or another.

But something that happened today reminded me of a whole other group of people that are often overlooked, but no less important. Peers. Sometimes just as much assistance (if not more) is provided by occasional individuals with no training, no title, and no pay.

We had a great day today. I was off work. The whole family went to a local cave where noted outlaw Jesse James once holed up. The kids loved walking thru the cave and looking at the stalagtites, stalagmites, and the underground river (although Sweet Pea complained the 40 minutes or so tour was "too long"). Both kids got a souvenir (Sweet Pea got a little unicorn, and Buddy Boy got a flashlight that could project pictures of dinosaurs on the walls). After going out to lunch we still had some time left, so I dropped Liz off and took the kids to our local park.

Who should we run into but Anna, who dedicated readers may remember as the blond girl from Kindergarten who befriended Buddy Boy almost two years ago now. When Buddy Boy was on the fringes and not participating at all, she would approach him and try to talk him into joining the group. She was low key, patient, and persistent. When other typical kids in his class were turned off by his either seeming to ignore them or shrieking at them, she continued to interact with him. And she ended up being one of the better things to happen to Buddy Boy during an otherwise difficult year.

Buddy Boy never got together with Anna outside of school, and when he went to two different schools this past year during first grade, one of our regrets was the loss of Anna as a friendly face for him to see in school.

When we got to the park today Buddy Boy first attempted to climb a crabapple tree that he sometimes likes to climb. Then he ran over to the playground equipment. I was assisting Sweet Pea climb the tree (if Buddy Boy does something, she just has to follow suit). It was then that I noticed the two of them talking. I thought it was Anna from across the playground, but I had only seen her a couple of times, and none recently. They were talking at the top of one of the slides, and I heard Buddy Boy shrieking, which he sometimes does when he gets excited. Usually this is somewhat frightening to most kids, but when this girl didn't run off it confirmed to me that it must have been her.

He followed her and they played on a couple of pieces of equipment. Then Sweet Pea insisted that she wanted to go over and play with them. Sweet Pea went over and quickly convinced them to play "Troll". Playing "Troll" at the playground involves yours truly being the troll who chases the other players and tries to catch and eat them. The troll chases but usually doesn't catch them, except maybe to tag them. Twenty minutes of this left me fairly worn out, but of course the kids could have gone on all afternoon. The kids continued to play a little more after that, then we had to get going.

It was great that Anna remembered Buddy Boy, and even better that she still accepted him as he was. There was a part of me that was afraid that she would have "matured" and been socialized in the last year and a half to reject those who are out of the ordinary. I'm not sure what it was that made her reach out to Buddy Boy when they were in school together, but I'm really happy she did. Sometimes I think it's the non-structured, spontaneous interactions that help Buddy Boy the most.

Here's hoping this is the start of a great Summer.

----------------------------------------------

Random funny thing overheard today (during minor spat between Buddy Boy and Sweet Pea):

"You're lucky that I'm not the kind of brother that would throw his sister into an active volcano that was still filling up with magma."

Par-tee!

photo credit-Aroid

Well, this last weekend marked a momentous occasion for Buddy Boy.

He went to a birthday party!!!!!

I was beginning to think he'd never get invited to one again. The last time he was invited to a party was over 2 years ago. When he was 4 he was on the edge of "the parents just invite whoever is in the class, even if they don't know them" stage. He then entered into the "Buddy Boy's the oddball kid who throws tantrums" stage of recognition (by peers and parents) and I thought that his days of going to parties (he had only attended a few, with only limited success) were over.

But one of his classmates from his regular classroom invited him to a birthday party. It was a bowling party, which was a good thing. Bowling used to be something that was definitely sensory overloading. One of the parties that he had gone to a couple years ago was a bowling party, and although he had wanted to go to it, he had a meltdown that was probably sensory in origin (can you think of a place much more loud and echo-ey?).

But last summer he was involved in a summer camp thru Giant Steps, which for those who don't know is a private school that specializes in autism. They had tons of field trips, including a weekly trip to a bowling alley. The long and short of it is that Buddy Boy loved going bowling, to the point of it becoming incorporated into his OCD behaviors. He perseverated for a long time on acquiring a bowling ball. He asked my sister, the chemist, if she could make him one. He googled "free bowling ball" on the web and found dozens of bowling ball sites-"Look dad, I don't think this one costs that much!"

So I was glad that it was a bowling party. It was something he liked, and it had a structure that he would understand, and foster some limited interaction with the other kids.

As it turned out, Liz took him instead of me. I'm usually the designated escort for both kids to parties, but I was involved with taking down a 40 foot pine tree in the back yard, and was up against having not enough time to finish the job.

Liz reported that he did reasonably well. We had written out and reviewed various things with Buddy Boy ahead of time, which we think helps. Buddy Boy didn't have any meltdowns, didn't interact much but remained basically socially appropriate, and said he had a good time. In my mind, a roaring success!

I only hope we have the opportunity to do it again.

Et tu, Brute?

photo credit- SeraphimC

What could be worse than making an ignorant statement regarding someone with a disability? Why, to make it on Blogging Against Disablism day, on your blog, while blogging against disablism!

Two days ago I wrote about my fears regarding when societal attitudes regarding race intersect with ingrained reactions of police when they encounter citizens with autism. And, as Tokah pointed out, while talking about how autism is an invisible disability, I said,

"...You're not confined to a wheelchair, you don't need a cane, and your body moves just fine. ..."

Tokah rightly (and kindly) pointed out that a chair is an instrument that facilitates mobility, and not one of confinement.

At first, I couldn't believe I had actually said what I did. I didn't remember saying that, and had to go back and check the text to see that I had. I mean, I'm in the middle of blogging about attitudes about the disabled, and then I say something totally ignorant. Especially considering I spent almost a year (I said a year in my reply to Tokah, but it was really only 11 months) in a chair when I was young. One would think that having gone thru that experience, I would be a little more careful in my language. But evidently I subconciously incorporated that time as being "confined" to a wheelchair, even though I've always felt that that experience gave me special insight into the lives of those who always need to depend on a chair to get around.

When I was 13 I had an operation on my legs. When I started high school, I was in the chair for all but the last month of my first year. In retrospect, it was a little unusual, as new people I met initially assumed I was permanently disabled. I got a lot of that "poor you" pity thing, where I could tell people felt sorry for me because of the chair. I also felt that a lot of people never saw past the chair, and for them, that was how I was defined.

I don't know if my thought process of thinking of myself as being "confined" to a wheelchair was a thought that I developed myself, or whether it was the attitudes of those around me that I incorporated. I've changed a lot since those days, and consider myself to be relatively enlightened when it comes to disablism, but my writing that two days ago indicates that there are places inside me that I didn't really know existed.

I am not a high quality wordsmith like many who blog. But I do realize the importance of language. How we name things and talk about things does matter. And while I am a firm believer in free speech and don't feel that the whole world has to be "PC", I am also a firm believer in courtesy and respect for other individuals. So for any others that noticed my gaffe, I apologize, and I'll try to do better.

---------------------------------------------------
I'll be out of town for a little R and R and probably offline until late Monday. See y'all when I get back!

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)

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.

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