Wednesday, July 29, 2009

The Getaway: Alaska

Last weekend, Joy and I headed up to Alaska for a long weekend to celebrate her birthday. It was our first vacation together without the children in nearly five years and the first post-diagnosis (excluding an overnight in NY together for a work function last year that doesn't quite count).

That's too long. Way too long.

Parents, especially parents of special needs kids, need time away alone together. To quote the University of Notre Dame's President Emeritus, Rev. Theodore Hesburgh, "the most important thing a father can do for his children is to love their mother." Not give them toys. Or take them to McDonalds. Love their mother.

The intensity of dealing with special needs (or even children in general) focuses so much attention on the child that other relationships suffer. It almost has to. There's only so much attention available in a day and a special needs child takes up a lot of it. That's just the way it is. I mentioned the importance of addressing the needs of the siblings in the review of The Black Balloon below (because I think those needs are widely overlooked). It's also important, if not more important, to address the needs of the marriage. The marriage has to be the priority, even ahead of the children.

We need a break. We have to get away from it all. Vacations, dates, and even long lunches alone are all necessary. Joy and I are fortunate that I was able to amass enough frequent-flyer miles and hotel points to nearly cover the entire cost of the trip. If not for that, we would still have to do something; even stay someplace ten minutes from our house.

The "where" is rarely the problem. It's the "how" and "who"? How can we leave our children for so long? Who will take care of them when we're away? These questions can easily derail any attempt to get away. I know. It's been five years. My advice is make answering them a top priority, even if it only means a day or two away. It's an important investment - one too valuable not to make.

(NOTE: I've turned off the comment control for now. Apparently, Google doesn't much care for posts without comments so feel free to let them fly, especially on any past posts - wink, wink, nudge, nudge)

Tuesday, July 21, 2009

The Conflict: Why Can't We All Get Along?

I think John Elder Robison knocked this one out of the park. His post on Psychology Today addresses one of the most frustrating things I confront in the autism community - the infighting. From John:

Why can't we all get along? The many faces of autism. Why do we fight?

Just this morning I was reading a post on Autism's Gadfly, and it made me think about the tremendously different wants and needs of people at various points on the autism spectrum.

His motto is, We don't want no stinkin neurodiversity! We need a cure.

In my writing, I have said, I don't need a cure; I just want compassion and understanding.

Those statements seem pretty opposite to me. Yet we are both adults with autism. How can our views be so different? That is the essence of the problem. We have the same diagnosis, but we are impacted very differently. (Click here to read the rest).

Saturday, July 18, 2009

The Research: Water is Wet

According to a study by the University of Washington:

Mothers of children with autism have higher parental stress, psychological distress

Researchers at the University of Washington's Autism Center asked mothers about their experiences and found that moms of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children's problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in mothers of children with autism. (Click here to read the UW press release).

My post's title refers to the press release's headline more than the study. It was an unfortunate choice of words. Many picked up on the obviousness of the statement, including the New York Times. It shouldn't be news that mothers of children with autism have more stress than mothers of children who are neurotypical (though, I am sure there are cases where that is absolutely not true). I think it's safe to say, however, that the degree of increase of stress is not widely known.

Another comment I've read in regard to the study has been, "What about fathers' stress?" Again, the release's shortcomings come into play. They probably should have at least addressed the topic. And, again, the New York Times picked up on it. They asked Annette Estes, the director of UW's Autism Center directly about the absence of any mention about fathers. According to Ms. Estes:

"We did try to study dads. When we started this study, the dads were not as likely to fill out the questionnaires. (And in other news, the sky is blue).

Ms. Estes went to say that although they didn't have enough of sample from the fathers; the dads were "really similar to the moms".

This absence of a sample from fathers is at the core of why I wrote Kicking and Screaming. Fathers don't like to talk about autism. I know I didn't - at least, not until I could discuss it with someone who "got it" (e.g. a fellow member of the club). Frankly, I still don't. Don't let the blog and the book fool you. As a friend once commented, "I bet this is an easier topic to read and write than to say and hear". This silence should be fertile ground for researchers like UW's Autism Center and others - if they could get any fathers to participate.

The key observation of the UW study was that the behavior problems associated with autism were the cause of increase of parental-related stress in mothers of autistic children than mothers of children with development delays. As a result, the researchers now believe that when choosing early intervention programs, those that address behavior problems should be a priority.

Bingo. I agree completely. Joy and I and several other parents we know have come to the same conclusion. We all wish we had addressed the social skills much earlier in the process.

Another conclusion of the study, one that the researchers found counterintuitive, is that no link was found "between a child's decreased daily living skills (such as dressing or toilet training) and increased parental stress and psychological stress".

I agree. I find that counterintuitive as well. I imagine there might be a difference between what is "hard" and what is "stressful". With behavior problems, fear is always lurking around just below the surface. A telephone call during the school day is a source of trepidation. Interactions with other children can be a roll of the dice. A simple request like, "let's go out to eat", will very likely be met with a tantrum. If you enter your child into a situation that you're not sure he or she can handle, you're on guard for that outburst to occur. You know if it does, everyone around you will be focused on you and your child and, as most of us know, they are usually not sympathetic eyes. Just judging ones. This doesn't even take into account the number of situations you avoid with the child because you are certain they cannot handle it.

I have one concern about the study. I'm not a fan of "Who Has it Harder?" contests. As hard as I think our situation with Robbie has been, I get no comfort from knowing "at least he's not (some awful thing worse than high functioning autism)". The hardest challenge any parent faces is their hardest challenge. I doubt any parent engaged in a parental struggle feels better by the knowledge, "at least our child's not autistic". Nonetheless, the lack of knowledge and understanding about autism creates a strong case for the need to educate the public about the issues and challenges everyone dealing with it has to face. It just doesn't have to occur at the expense of anyone else.

UW's study is an interesting one that probably created as many questions as it answered.

Welcome to Autism World.

Thursday, July 16, 2009

The Movie: The Black Balloon

During my 13-hour flight from Chicago to Seoul the other day, I had ample opportunity to watch several movies. The airline had over twenty recent movie releases available. Not great movies. Just movies. Some of the classics included The Echelon Conspiracy, The International, and Good. I hadn't heard of any of them, but The International seemed familiar. All three helped kill a combined five hours of flight time. But when I broke down and watched 17 Again, starring Matthew Perry and Zac Efron, I knew I'd just given up. It was a cry for help.

Actually, I wasn't just giving up. I was avoiding something: A special movie called The Black Balloon.

The Black Balloon
is an Australian movie whose cast includes Toni Collette. Collette is known for her work in many movies including The Sixth Sense, Little Miss Sunshine and the funniest chick movie I've ever seen, Muriel's Wedding. She is also one of the movie's executive producers.

The movie's brief description was enough reason for me to want to avoid it (from Wikipedia):

When Thomas and his family move to a new home and he has to start at a new school, all he wants is to fit in. When his pregnant mother has to take it easy, he is put in charge of his (severely) autistic older brother Charlie . Thomas with the help of his new girlfriend Jackie faces his biggest challenge yet. Charlie’s unusual antics take Thomas on an emotional journey that cause his pent-up frustrations about his brother to pour out.

To be blunt, when I'm on a 13-hour flight I really want a break from autism. To research Kicking and Screaming, I read plenty of wonderful stories about autism and while I learned a lot from all of them, they were rough emotional journeys. However, if I was going to stoop low enough to watch a movie starring Zac Efron (without being badgered by the kids to do so), I figured I should probably give Black Balloon a spin. As I expected, it was a very rough emotional journey.

I simultaneously liked and hated this movie. It was the first time that I'd experienced simultaneous conflicting emotions like that since reading John Elder Robison's Look Me in the Eye (where I laughed and cried at many scenes). There's something about autism that can combine humor and sorrow at the same time. Sometimes you really have to laugh at some of the most awful things. In that vein, Black Balloon has some very funny moments.

I liked and hated that it presented autism is all it's brutality. While I don't have direct experience with severe autism, I've read or heard firsthand stories similar to many of the scenes portrayed in the movie. I've also experienced most of the events firsthand but at a much lower magnitude (eg. the difference between severe and high functioning autism). This was very uncomfortable.

I liked and hated that it demonstrated the physicality of autism. We're a society that's become unaccustomed to parents being physical with their children for many good reasons. With autism, even high functioning autism, PDD-NOS or Asperger's Syndrome, being physical can be a requirement to restrain or even calm the child when he or she is having an outburst. The movie painfully demonstrates other's discomfort with the physicality. In the movie, Charlie is a big powerful teenager and he presents a physical challenge for his family as they try to manage his outbursts. Robbie is a small seven-year old and he often presents a physical challenge to us as we try to manage his outbursts. This is not a small concern for when Robbie gets bigger.

I liked and hated that it demonstrated the human capacity for some people to act like despicable f**king a**holes: rotten kids (especially teenagers); ignorant and vindictive neighbors; and judging, yet useless onlookers. I often wonder, "If I wasn't experiencing this, would I be one of them? Was I ever?"

I liked (but did not hate) that it was a realistic portrayal of autism. There were no happy miracles or major breakthroughs. I assume this is because it was made in Australia and not Hollywood. I don't think Hollywood has the discipline to make a film like this. They couldn't resist making the movie about the character of the most famous actor (Toni Collette) or having it focus on some sweeping unrealistic (or rare) turn of events. (As a tangent, the first movie where this aspect of Hollywood struck me was when I saw the Canadian film, Waking Walter: The Walter Gretzky Story. I thought, "there is no way that Hollywood could make a film about the Gretzky family and have the discipline to allow Wayne to be a bit character - far behind his father, mother, sister and his father's physical therapist." But I digress.)

I loved that the story was not about the autistic child or the parents. It was about the sibling, Thomas. I'm not shy about my belief that that I think the real people who get the shaft in the special needs world are the siblings. It's very hard on the children with the condition and it's very hard on the parents. But for siblings, it's a whole 'nother ballgame. The movie's portrayal of Thomas does justice to the fact of just how unfair a situation like this can be for a sibling. I liked that the movie allowed him to express real, yet very uncomfortable emotions. He's angry. He's embarrassed. He's crushed. He's humiliated.

I liked that it was Thomas's - and only Thomas's character to any real degree - that arced greatly in the movie (for you screenwriter wannabe's, I'm answering Richard Krevolin's question number 5 from How to Adapt Anything to a Screenplay - How do the characters change throughout the movie?). The story is basically Thomas's journey from anger to acceptance, even loving, with the help of his girlfriend, Jackie. She's the catalyst for his transformation. She's that very unique person who doesn't apparently have a tie to the special needs world but "gets it".

As a side note, if you want to read a great (yet challenging) book about siblings, I recommend Being the Other One: Growing Up with a Brother or Sister with Special Needs by Kate Strohm - also an Australian (what is it about the Aussies? They seem to really get this).

I can't recommend that everyone run to Blockbuster or Amazon or Netflix and rent/buy The Black Balloon. I found it hard to watch. In fact if it came on television and Joy was in the room, I'd change the channel. I think it would be far too difficult for her to watch.

But it's accurate. The movie's writer/director, Elissa Down, grew up with two autistic brothers and Charlie is based on one of them. Down "gets it", especially from the sibling perspective. If you want to watch a movie that paints a realistic portrait and finds a silver lining amidst all that can be ugly about autism, The Black Balloon does the trick. Here's the trailer:

Monday, July 6, 2009

The Vote: All Politics is Local

As a person interested in national politics, I find myself very interested in national issues such as foreign policy and fiscal policy. However, as a member of the special needs community I'm only beginning to realize I need to shift some of my focus locally.

For the first time that I can recall, a law has been passed that directly addresses a specific problem that we've had and made it go away.

Problem -> Law Passed -> Problem goes away.

That simple.

The hardest part to getting Robbie certain therapies is the availability of time. Unsurprisingly, the after school hours are quite booked. Last year, when we asked Robbie's school if we could schedule some of his Occupational Therapy sessions during school time, we were denied. Apparently, it was against the law (which seemed absurd to me). After a long wait, we were finally able to get him into an Occupational Therapy session. Considering other therapies has been impossible to do given the lack of available time.

Less than three weeks ago, with the help of our State Senator, Florence Shapiro, Texas Governor Rick Perry signed into law (HB 192) changes regarding truancy in Texas as amended with the following (b-3 added):

(b) school district shall excuse a student from attending school for:

(1) the following purposes, including travel for those purposes:
(A) observing religious holy days; [or]
(B) attending a required court appearance;
(C) appearing at a governmental office to complete paperwork required in connection with the student ’s application for United States citizenship; or
(D) taking part in a United States naturalization oath ceremony; or

(2) a temporary absence resulting from health care professionals if that student commences classes or returns to school on the same day of the appointment.
-> (b-3) temporary absence for purposes of Subsection (b)(2) includes the temporary absence of a student diagnosed with autism spectrum disorder on the day of the student ’s appointment with health care practitioner, as described by Section 1355.015(b), Insurance Code, to receive a generally recognized service for persons with autism spectrum disorder, including applied behavioral analysis, speech therapy, and occupational therapy.


It was Senator Shapiro of Collin County who got this portion of the bill amended with this language just in time to be passed by the Texas Senate. That's pretty damn cool. Everyone, including parents, children and the schools themselves, will benefit from this law.

Thank you, Senator Shapiro. I think you've solidified my vote for a long, long time.

Thursday, July 2, 2009

The Essay: Part Three - The Parody

If something's good, it's a good enough to parody. If a parody is good enough, it's going to ring a little true itself. "Welcome to Holland" is no different.

I've learned that people in the Special Needs community have developed a pretty good sense of humor. Like many exclusive groups where membership is involuntary, there are rules about the humor. The most important rule is: If you're in the group, you can tell jokes. If you're not, you can't. President Obama learned this the hard way on Leno. He also committed the sin of telling a joke that wasn't even funny...but I digress.

Tanya Nielson of Australia is a member of the group. She wrote one of the funniest parodies I've read in a while called "Welcome to Somalia". For those parents who find it hard to grapple with the "very lovely things" of Holland", you'll feel right at home in Somalia.

Holland seems like such a nice place:

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.

Somalia? Not so much:

It's a scary, truly unpleasant and very different place. It's far more exhausting than Italy, more life-threatening than Italy. But after you've been there for a while and have managed to escape from the plane and are fighting for your survival you stop to breath, you look around... and are scared witless by the violence, degradation and lack of human rights. You learn to fight for things you always took for granted: education, support, understanding.

Rembrandt's? Really?

My favorite part is the last line, where she replaced:

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


But... as you spend your life mourning the fact that you didn't get to Italy, you will never fully relate to others the trauma and emotional scarring, despondency, desperation, solitude and terrifying loneliness of Somalia.

This is what it is like bringing up a child with Autism Spectrum Disorder.

So next time you see a child having a meltdown in a shopping centre, or your kid is lashed out at by a SN child in their class, or you witness a mother is sitting on a bench crying as she struggles to restrain her raging 8 year old who is kicking, biting and screaming "I f**king hate you ", you can say to them:

SH!T - is that what Somalia is like? I had no idea.

God knows where this Holland is, because I sure as hell don't!

As I said in the last post, I'm glad to be in Holland because I'm crazy about Robbie just the way he is. That being said, I relate to Somalia a helluva lot more than Holland. I only have go all the way back to two Mondays ago to recall hearing "I hate you! I hate you!" as I brought Robbie into his first day of summer school - feeling the eyes of every other student, parent and teacher bear down on me as I passed through the crowd with him in my arms, kicking and screaming. I got him all the way into the classroom, only to see him bolt out of it and repeat the verbal assault on the teacher.

Some of you probably didn't find "Welcome to Somalia" all that funny. In fact, you might think it's a little cynical. All I can say is, like most inside jokes, you had to be there.