Thursday, April 30, 2009

The Great Escape: Business Travel

Currently, I'm on my third international business trip of 2009. On average, I do five or six international trips per year but it's hard to predict when they will happen. Sometimes they come in bunches. Sometimes they are spread out. They usually last one or two weeks but I try to keep them to one week whenever possible.

I've been asked if it would be better for our situation if I didn't travel as much or nearly as far or if I had a more normal job. The short answer is: No.

In Fox Searchlight's hilarious movie Thank You For Smoking, tobacco lobbyist Nick Naylor (played by Aaron Eckhart) is asked how he can perform such an unethical job. His answer? "Everyone's got to pay the mortgage." My reasoning isn't as cynical as Naylor's nor do I think my job is in anyway unethical, but the logic isn't a long way from his. The job I do is what I do best. It is the best way for me to pay the mortgage. But there are also some hidden benefits that would not be available to me in a normal job.

On the downside, in my job, when I'm gone...I'm gone. I'm not in the next town over or the next county over or even the next timezone over. I'm usually a continent away. Currently, I'm in Korea and was in Singapore earlier in the week. Last month, I spent a week in China. This puts a lot of added pressure on Joy in dealing with the kids, especially Robbie. I know that she'd rather have me home at night when things are tough. I'm "escaping" the challenges while she is facing them alone. I don't like to admit this but if I'm given the choice between enduring a 13-hour flight or dealing with a sensory-induced temper tantrum, I'll take the flight any day. The flight only erodes my strength not my spirit.

In addition, I think my travel played a big role in my denial of the situation with Robbie. Since I wasn't around a lot, I didn't notice or appreciate the subtle changes that were affecting his behavior. I also didn't want to see them - which was easy to do when I was away or suffering from jet lag.

On the other hand, when I'm home...I'm home. I work from a home office. While my job can be fairly demanding on my time, including late into the night to support activities here in Asia, my office situation adds certain benefits. When I'm home, I'm available to help Joy. I can help in the mornings when things are getting rough or Robbie is experiencing a tough transition. I also get the opportunity to spend more time with the kids. For example, I go with Joy to drop the kids off at school nearly every day. It takes no more than ten minutes but I find it to be an important opportunity to be with them at a critical time. If I worked in a normal office, I'd be on the road at that time, likely sitting in traffic during my forty-five minute commute.

I'm also available for ARD meetings or other school meetings or anything required to help Robbie of any kind. If there's an issue and Joy is unavailable, I can take care of it. Since the school is less than two minutes from our house, anything required of me there represents a minor interruption to my day at most. Every once in a while, I'll even pick the kids up from school. The time is no longer than what it takes to have a cup of coffee in a normal office. I don't think I could do any of this in a normal office. Except for the most critical events, these things would require a commitment of well over an hour just in travel time to show up -- something I couldn't do very often.

At this point in my life, I think this work environment works perfectly for me. I'm fortunate that I work for a great company and have a fantastic boss who's sympathetic to our situation. It's certainly not something I abuse. I'm trading potential time at home during the evenings against the ability to be available at any time - just not when I'm 7000 miles away. I think that's a worthwhile trade.

Thursday, April 23, 2009

The Look: Is There One?

I enjoyed this blog post by John Elder Robison on the Psychology Today website about the look of autism. Many of life's transforming events make us attuned to new realities, such as the newlywed who notices couples everywhere or the new parents who begins to see babies everywhere. The same can happen to the parents of a newly diagnosed child: We begin to see autism everywhere.

It's probably not a good idea to sit around and trying to diagnose people on the street but sometimes we can't help noticing things that make us wonder. Fortunately, John's article gives credibility to the idea. I don't have the confidence he may have in identifying people on the spectrum but his article makes me feel a little bit less crazy about the topic.

I especially enjoy that he discusses the idea of autistic children being beautiful. I'd heard this discussed before, at the Autism & Asperger's Conference at Southfork Ranch in 2008. At first, this sounded like typical parent-bragging but I've started to wonder about it. As Robison's mentions:

Judy Miles, a geneticist, said something fascinating to me. "In the 1940s, Kanner wrote about beautiful children with autism." Later readers have taken that as a metaphor, but what if he meant it literally? As she says, there are some kids with profound autism who are also have beautifully sculpted faces. Could there be a connection?

Click here to read the rest.

If you haven't read John's book Look Me in the Eye: My Life With Asperger's, go buy it. It's a great read and surprisingly funny.

Monday, April 20, 2009

The Classroom Update: Still a Winner

I meant to post this last Friday but a last minute decision to go to the Notre Dame Blue & Gold game in South Bend overshadowed the post.

It's been over a month since Robbie moved into a new first grade classroom and it's hard to call it anything other than a complete success. Today was yet another flawless launch. The two most important measures are: a) his ability to get up and go to school; and b) his ability to perform the work required of him during the day. Again, the scores on both accounts are sky high. As for a), we've had only one very bad day in the morning since the change. We've had several days where he's pleasantly woken up, gotten dressed, gotten into the car, gotten out of the car and made it into his classroom without a fight or tantrum at any point along the way. Prior to the change, getting through all of those gates pleasantly was close to impossible. As for b), his new teacher sends home daily progress reports and he's doing more work in the classroom than ever.

At times like this, I enjoy admitting when I'm wrong.

Wednesday, April 15, 2009

The Numbers: What do they mean?

We love numbers. We're a society of statistics. We use statistics for a variety of reasons. The autism community is no different. We love statistics, too. Many of us can recite some of the numbers about autism off the top of our heads. For example, autism will affect:

1 in 150 children
1 in 94 boys

What some might not know is that according to a study by Cambridge University released last month, those ratios in Britain are:

1 in 60 children
1 in 38 boys

Without debating the specifics of the numbers, what these mean to me is that there is a very good chance everybody knows at least one family dealing with autism -- even if they don't realize it. That's why I like the idea of "Autism Understanding" month.

One figure that seems to get a lot of attention in the autism community (and the special needs community in general) is the divorce rate. According to Autism Speaks, the divorce rate is around 80% for parents of autistic children. I've heard 75%. I've heard 85%. Whatever the number, it appears to be high.

According to a study released by the Easter Seals in December 2008, however, the rate of divorce for parents of autistic children is actually less than the rate for parents without special needs children (30% vs. 39%). Ignoring the fact that our only interface with Easter Seals nearly led Joy to violence, their study is about as convincing as the Autism Speaks number.

Whether it's 30% or 80%, frankly, I'm starting to find the number to be meaningless because underlying the discussion of divorce is the level of stress autism puts on a marriage. While many of us like to put a happy face on our situation, what goes on behind the curtain is often harder than we lead on.

That same study released by the Easter Seals revealed many statistics about parents of autism that some of us dealing with it deemed as obvious at best or useless at worst. I know I laughed when I first read it but when I looked at the study through the prism of someone who doesn't know much about autism (which is what we're asking of them during "Autism Understanding" month -- see things through our prism), I realize some of this information might not be all that obvious.

Here are a few of the statistics from the Easter Seals study I found interesting (my concerns are in bold):

The percentage of parents of children living with autism who feel their children will be able to:
    • Make his or her own life decisions (14% compared to 65% of parents with typically developing children)
    • Have friends in the community (17% compared to 57% of typical parents)
    • Have a spouse or life partner (9% compared to 51% of typical parents)
    • Be valued by their community (18% compared to 50% of typical parents)
    • Participate in recreational activities (20% compared to 50% of typical parents)
In addition:
  • Seventy-four percent of parents of children with autism fear their children will not have enough financial support after they (the parents) die, while only 18% of typical parents share this fear.

    They also express extreme financial strains and costs associated with caring for a child with autism, with more than half stating that the cost of caring for my child:
    • Drains my family’s current financial resources (52% compared to 13% of typical parents)
    • Will drain my family’s future finances (50% compared to 10% of typical parents)
    • Will cause me to fall short of cash during retirement (54% compared to 13% of typical parents)
  • 76% of parents of children with autism are concerned about their child’s future employment, when only 35% of typical parents share this fear.
What the study doesn't mention is the intensity of these fears. All parents worry about their children's future. For me, however, these concerns are more like full blown panic attacks. They keep me awake at night. The concern I have about future employment isn't about what type of job Robbie will get but whether he can hold one down at all. That panic has subsided over the past few years but it still remains strong. Some parents are so worried about their children's financial future, they simply state "I can never die" and, to a degree, mean it.

Some will interpret this discussion as whining or a search for self pity. The very first time I mentioned something like this, I was met with both of those reactions. Others will want me to hurry up and get to the happy part of the story. I can only point to the discussion and say, "that's the way it is". All marriages are hard. Marriages with children are harder. Autism (and special needs in general) adds several other layers of stress to a marriage. This is going on whether or not the divorce rate is 80% among us or 30%.

Is that whining? I don't know. I'll let you be the judge. I can tell you that many parents of autistic children want you to know about it but few want to say it out loud. To my knowledge, I've never shared this type of information in a conversation. It's much easier to do in a blog, an email or even a book. Discussing it live does sound whiny.

I recall the advice of former Notre Dame Football Head Coach, Lou Holtz: "Don't tell your problems to people: eighty percent don't care; and the other 20% are glad you have them." There's probably an element of truth to that. If you've read this far, you're probably a parent of 1 of the 150 children diagnosed with autism and you have the same problems. If you're not, you must be a pretty special person -- someone we say "gets it". But that's a discussion for another day.

Wednesday, April 8, 2009

The Tantrums: Don't Be Afraid

Below, I've linked a blog post from Autismspot founder, Kent Potter, about what others can do when a child is having a tantrum. He discusses the topic far more soberly than I do in Kicking and Screaming and manages to do it without swearing.

A public tantrum is a recurring nightmare scenario for parents of an autistic child. It happens frequently and when it doesn't, parents are still worried that it might at any moment. It makes it hard to enjoy a meal at a restaurant or popcorn at a movie or a power play at a hockey game when you know you could be heading for the exit without any warning. It's also a large contributor to turning parents of autistic children into shut-ins.

As I said in a previous post, I'd much rather have "Autism Awareness" transform into "Autism Understanding". There's very little the public can do in the name of causes and therapies. Given the passion that goes into these discussions, I know I'd steer clear of them if I wasn't on this side of the fence. Making the public aware of these debates and discussions adds very little practical value to the situation. I'd like to see the focus directed in areas where the public can make a difference and Kent's post is a wonderful example of that.

The scenario that Kent describes is where "the rubber meets the road" in terms of understanding. Children with high functioning autism or Asperger's Syndrome offer no outward clues about their condition and as a result, their tantrums are interpreted as behavior problems and bad parenting. If people understood what might be happening during these situations, the stress on parents would reduce dramatically. Posts like Kent's are valuable in this part of the battle.

“Please don’t be afraid. He’s just a little boy.”

It’s devastating to try and mange through tantrums that can occur with a child who has Autism....When the community is unaware, uneducated, and unwilling to recognize that because a child doesn’t “look” different, does not mean that something more is going on than just a child “misbehaving”. I can’t tell you how many times I heard the whispers, “That boy just needs a good spanking.”, “What horrible parents. They can’t even control their baby.”, “I bet they wish they had the receipt so they can return that one.”...

Click here to read the rest:

I invite you to check out the rest of the Autismspot site. It's a treasure trove of information provided by those on the front lines of this. I particularly like the videos by James Williams about growing up with Asperger's Syndrome, though all of the blogs and videos are excellent.

Sunday, April 5, 2009

The Beauty School Dropout: Became the Queen of Denial

Traveling over the weekend for my parents' 50th Anniversary, I missed this article in my mailbox (thanks, Mike). It's a commentary by Didi Conn, best known for her role as Frenchie in the movie "Grease". In the article, Conn discusses her reaction to her son Danny's autism diagnosis and her efforts to help him. Many parents with a child on the spectrum will find parts of their own story in this one:

(CNN) -- When anything is wrong with your child, your first instinct is to make it better. Diagnose the situation, find the answer to the problem and take your child's pain away. But with autism, that takes quite a lot of doing.

Right after our son Danny celebrated his second birthday, he started to have increasingly lengthy and violent tantrums, usually initiated by his extraordinary sensitivity to sound. At the slightest provocation -- telephone ring, doorbell, a blow dryer, blender -- he would begin to scream, hold his ears and throw himself down on the ground.

We went right to our pediatrician, who was not alarmed, gave him a routine hearing test, and basically said, "He's 2, you've heard of the "terrible 2s."

Click here for the rest of the article.

Wednesday, April 1, 2009

The Month of April: Autism Awareness

April is "Autism Awareness Month". Ironically, I was not aware of that. I learned it from Kim Stagliano on the Age of Autism site, where she is the managing editor. Here's Kim's introduction:

So here it is, April 1st. The kickoff of "Autism Awareness" month. I'm going to do my best to never refer to these 30 days as being about awareness. If I am "aware" that a child is drowning in my pool and do nothing I'm off to jail for negligence, right?

I agree with Kim. The idea of "awareness" seems silly to me. I'm not even sure that awareness is an issue anymore. Is there anyone left out there who's not "aware" of autism? Ignorance, however, is another story. What percentage of the people who are aware of autism actually understand it? I'd be all for "Autism Understanding" month. I could have used that a few years (months? days? minutes?) ago. As long as: a) there's someone out there who believes there's even the smallest element of truth to Dennis Leary's stupid rant about autism, b) "Rain Man" continues to be the "picture" of autism, and c) some people still think "those kids just need a bit more discipline", we've got a long way to go on the "understanding" front.

Update: I was pleased to see this from the Autism Society of America. This is far more useful than wrist bands and bumper stickers. I'd like to see a lot more of this type of information disseminated about autism than things that merely promote "awareness". This is useful, practical information. This helps create understanding.

Some of you might be thinking that I only made this post as an excuse to link that awesome picture at the top from Kim's site. If you're cynical to believe that, probably know me pretty well.