Wednesday, July 30, 2008

Caution or Catastrophizing? On knowing when to dial down the blogosphere

As we moms get older, do we "catastrophize" more or less? And what role does the internet play in egging us on in our fear? By catastrophizing I mean taking an issue that requires caution and planning and turning it into a disaster waiting to happen.

After I wrote my post about my upcoming airplane flight with Sayer, I scouting around the internet and found the blogosphere has been burning up about an incident where a mother and her son with autism were kicked off a plane before take-off. Talk about your worst case scenario. But, really, how much do articles like this one really help us in the trenches? They can spur us to advocacy but they can also create ulcers!

Instead, I prefer to look for positives on the internet, like this article "Don't avoid traveling with special needs kids." And I prefer to share resources I have found that are actually useful in mitigating the potential for a melt-down.

One great toolI found is a simple "slide show" about airplane travel that can be downloaded on your computer. It has photos of airports, plane and waiting, and includes short videos with sound - including the roar of take-off. It even shows how you have to take off your shoes at security. It is one of many found at - Learning Software for Children. The site also includes slide shows on going to the doctor, going to the movies, and so on.

How about you? How do you balance the worst that can happen with what you can control to make it less likely to happen? Any tips or ideas? Well, the timer is counting down until it goes off, when I will help Sayer with a marble maze so I gotta run.

Friday, July 25, 2008

Fear of Flying? Seeking tips on "special needs" air travel

This article on the perils of airplane travel with children who have autism has me a bit wary. Next Friday Sayer and I are travelling to the San Jose area to visit my sister and her family. Sayer has not flow in about five years, since a disastrous trip to LA .

Talk about karma - a woman on the flight down asked me to have Sayer stop playing with a toy cell phone; apparently the noise was bothering some of the passengers. I turned it off, reluctantly, since it was the only thing that somewhat calmed him down - this was before the term "stimming" was even in my vocabulary. The same woman was on our return flight, right behind us, when Sayer cried non-stop - which made an annoying toy phone seems like Beethoven in comparison.

I have been reading his a social story book from his last airplane ride, plus a few kids books on airports and flying. He has been to the Portland airport before, although he mainly associates it with eating lunch at Panda Express.

I have taken the suggestion of bringing music, and Jacob downloaded three Raffi CDs onto my Ipod - not great for shuffle mode when I'm working out but I'll appreciate it in the air. I also got a new game for Sayer's Leapster.

Any other suggestions from about flying with children who have special needs. Should we opt to board early, or get on as close to take-off as possible? How do I deal with people sitting near us?

Tuesday, July 22, 2008

So Michael Savage thinks we're faking it for all those autism perks

My dear friend "J" from New York City alerted me to this story, which is burning up the online autism community. On July 16th, conservative talk radio host Michael Savage ranted about autism, saying that 99% of the children with autism are brats that should just cut it out. Naturally, parents are mostly to blame to this, according to the guy. He manages to disparage asthma and autism as "diseases du jour" that parents use to gather public funds. Right. Just check out this New York Times story, which has an audio clip link.

This LA Times article about the response has a quote that says it better than I can:

"Areva Martin, Los Angeles autism activist and co-founder with Donna Ross-Jones of Special Needs Network, a group whose mission is to educate parents of the rights their children have to an appropriate education, has a lot to say about Savage's comments:

"It would be easy to dismiss Mr. Savage's statements as the antics of a radical, ratings-seeking talk show host. However, Mr. Savage has over 8 million listeners, many of whom rely on his show for reliable information. His insidious and baseless statements give credence to the type of pervasive ignorance that families face on a daily basis. Such statements foster discrimination against not only the disabled, but also against people of color. To suggest that minority families feign a diagnosis of autism to receive welfare benefits is absurd and reflective of the entrenched racism that continues to rear its ugly head.

If good old-fashioned discipline was a cure for autism, families across this nation would pull out their switches and get to work. Unfortunately, autism is real and there is no cure -- yelling, screaming, hitting and even the most archaic forms of discipline cannot cure what renowned scientists from around the world recognize as a complex disorder that now impacts one in every 150 children, that lasts a lifetime and impacts every aspect of an individual's development. As a parent of a child with autism, a children's rights activist and attorney, I know both personally and professionally that no one would feign autism for the sake of collecting some amorphous government benefit -- it simply isn't worth it. Thousands of hours of therapy, lifelong care, isolation, grief and isolation are too high a price to pay.

The rapid response of the autism community hopefully will send a loud and clear message that issues of autism impact people of all socioeconomic groups and that issues involving the disabled are matters of human rights."

Not surprisingly, parents and supporters are protesting the WOR-FM station that sponsor's Savage's show, and others are encouraged to tell local stations their feelings. One station has already cancelled his show - somewhat ironically in Mississippi, not often considered an advocacy front-runner. Also, Aflac insurance company has withdrawn advertising from Savage's "Savage Nation" radio show.

Here is the Media Matters link to protest at your local station.

What do you think of all this?

Thursday, July 17, 2008

Society Standards of Normal: Listen to the Music Within

Can a person be arrested for being “ugly?” According to the movie Music Within, this could and did happen in 1971 when there were “ugly laws” in about 20 other cities which stated that a person could be asked to leave a public place if they were deemed “too ugly.”

I have not seen Music Within yet but a reader, P, recommended it as a great story of how the Americans with Disabilities Act was created and passed. According to P, “
In the movie, and in real life, a man with cerebral palsy wanting to order a pancake breakfast in honor of his birthday was asked with his friend, a man with hearing impairment, to leave and both were put in jail overnight. The movie has great music of the 70s and lots of humor. If you check it out be sure to listen to the real Richard Pimental speak in the special features section.” The movie is available on Netflix, and the Richard Pimental character is played by Ron Livingston (the office drone star in the cult classic Office Space).

The whole idea of being arrested for being “ugly” is fascinating yet disturbing. Who defines “ugly”? Who sets and maintains society standards for “fitting in”? And do these standards vary by class, rural vs. urban or economic factors (uh oh, sociology alert!)?

In our own experience, in general we have encountered more tolerance, acceptance and welcoming among so called "working class" and "rural" folks than among so called "urban professionals." I know I feel less tense about Sayer fitting in and not being ostracized at a small-town county fair than I would at a concert at a children’s museum.

Indeed, the worst offenders I have encountered are the Portland hip parents – you know the organic baby food and hemp onsie set. One such mom at Ben & Jerry's on Hawthorne Ave. ("hippy-ville" as Jacob calls it) got downright nasty when Sayer got a bit too close to her crying toddler. And I was "right on it" - telling him it was not his job to help the boy, that is the mom or dad’s job, and so on.

In situations like that I'm not sure what to do or say. I know that families can order business cards that explain that their child has autism and briefly describes its symptoms. They can hand out these cards in public in situations like the one at Ben & Jerry’s.

But I have resisted that idea, maybe because it defines “normal” as not having autism and thus having autism as “abnormal.” I think that such a clean-cut dichotomy over-simplifies things and enables people to simply say “Oh, that explains it” without contemplating their reactions to “behaviors” or considering the value of tolerance.

On the other hand, I did meet a suburban mom recently who was purposively seeking a day care/pre-school setting that included children with disabilities so that her “typical” kids could learn to play with such children. Maybe what is celebrating diversity to one parent is exposing your child to taboo weirdness to another.

What do others think about society standards of beauty, ugliness and fitting in? Let’s start a discussion.

Tuesday, July 15, 2008

Tips for a Freewheelin' Time without the offspring

It is day two of our child-free stay-catation, while Sayer is at camp and Jacob is visiting relatives. Here are some tips for your stay-cation, should you be so lucky to have one.

1.Take a break from logistics and planning. Until you stop it's hard to realize how much we moms are constantly planning, arranging, organizing, anticipating. I am training my mind to think "I won't make that phone call until Thursday" and "I'll think about setting thus-and-such up later." I'm getting the hang of it and will probably master this feat just when I need to restart the logistics-wagon.

2. Take a break from laundry; don't think "This is a perfect time to do a bunch of loads." Just wear what is clean.

3. If you have a husband/partner do things at a "grown-up" time. Our kids seem to self-destruct if they don't have dinner by 6:00 p.m. so what a treat it was to go work out at 5:00 and -gasp - eat dinner at 8:30. This is also a good time for lamb chops and shrimp.

4. Read a book that has nothing to do with self-help, your professional life, or saving the world. Right now I am reading "A Freewheelin' TimeA Memoir of Greenwich Village in the Sixties," a fascinating memoir by Suze Rotolo, who was Bob Dylan's girl friend in the early sixties. It really capture an era and a sense of place. Oh, but that Bob - such a genius but such a player. Between this book and the Joan Baez song "Diamonds and Rust" you get a pretty good picture.

5. Think about how this would be a perfect time to clean the fridge, clean out drawers and get on top of weeding the yard and so on. Don't do it (see # 2). Instead, take a nap or pop in a DVD.

Friday, July 11, 2008

Our kids need structure while we want to take it as it comes

I was chatting with a neighbor recently about how our kids thrive with schedules but we, the parents, are more "Let's see how it goes." I think it is even more challenging as we get older, and wish that we could ease up on all the scheduling that can go on with parenting.

For me, this is especially true in the summer, when there are no more sports practices, therapy sessions, school meetings and so on. I am ready to "chill" but the lack of structure makes Sayer even more anxious. So, I turn to my handy "Make-A-Schedule" software program. It's really a great product - but one I wish I didn't need! I use it to make schedules for Sayer's day camp, to map out a calendar of the month so he knows when he goes to day camp, when he flies to see his cousins, and so on.

Our latest challenge is programming meal time. If Sayer had his way it would be hamburgers and french fries one night, followed by stir fry with noodles the next night, followed by hamburgers and french fries - detect a pattern? In response, Dan and I will be doing more meal planning and putting the dinners planned for each night on the calendar. No more "I just feel like a tuna sandwich." Sigh.

Sayer is going to his first "sleep away" camp Sunday, to Mt. Hood Kiwanis Camp. There are a series of camps for adults and children with disabilities not too far from Mount Hood. The camp's web web site has a great video about the program. Sayer is going to the Oral Hull camp for people with autism. He is very excited because one of his former teachers, "Mrs. Heather" will also be there.

For the first few days of Sayer's camp, Jacob will be out of town,too, visiting relatives in Virginia. It just turned out that way but we are going with it. Dan and I have our "staycation" all mapped out. Get up when we feel like it. Eat what we feel like, at whatever time we feel like. Almost like Hawaii without the cabana. Can't wait!!