Spread the word to end the r-word

Today is an event to raise awareness of the r-word--retard--that people tend to use callously and unconsciously. I wince every time I hear someone say it, especially when kids say it. There are better words to use, words that don't hurt people with cognitive impairments and differences.
This website can tell you more.

New year, new look

Decided to apply a new template for the blog. Maybe this will make me more inclined to post, the way that buying new workout clothes is supposed to make one more inclined to exercise. We shall see.

A post, a post!

January 2010--hard to believe we're already here. Once again, it has been six months since my last post, so the guilt finally caught up with me. I will post a highlights of 2009 letter within the week. For tonight, let me just say that I am very happy that today was the last day of Christmas break, and big H goes back to school tomorrow. Taking care of my two kids makes paid work look like a walk in the park. Which is one of the big reasons I still work, albeit only about 10 hours each week.

Everybody have a great week. More soon.

Mozart and the Whale

One of the things I'm going to do to generate book content is write up some reviews of books I've read recently on autism and related topics. Here's my first.

Mozart and the Whale: An Asperger's Love Story
By Jerry Newport, Mary Newport, Johnny Dodd
Simon & Schuster, 2007

This autobiography is written from the separate perspectives of Jerry and Mary Newport, two individuals with Asperger's Syndrome, who met in their middle years, fell in love, separated, and reunited. The book goes much farther back in both their lives, though, giving readers a glimpse into the lives that shaped these two people.

This book is valuable reading for parents of children with autism for at least one reason: your children will not always be children. They will grow up into adults, and as such they will be dealing with the desires and demands of the adult world. The Newports, especially Jerry, are unflinchingly honest about their romantic and sexual experiences. It's a valuable examination of the subject of sexuality and disability. It's an understatement to say that this subject is underexamined; most of the time it is ignored completely.

For anyone else, this book is just good reading. The stories Jerry and Mary share range from funny to uplifting to tragic to downright terrifying. Jerry's stories resonate with me because I know that my son will face many of the same kinds of frustrations and anxieties that Jerry experienced. Mary's stories simply amaze me. This woman ran away to Haight-Ashbury at the age of 15. Her parents placed her in the custody of a religious cult that eventually abandoned her and her newborn baby in Europe. And that's really just the beginning of her stories. It's amazing that she lived through it, and her unique perspectives are equally amazing--sometimes shocking.

Their story was made into a movie in 2005--I'm going to have to add that to my Netflix.

Update on, well, everything

I thought for sure I hadn't posted anything in almost a year--turns out it has only been six months! Yay for me. I figured I should provide a little update on what's going on in our lives, autism-wise and otherwise, so here's a short summary.

• We're all healthy, no more or less wealthy, and surprisingly wise.
• Cassie has recently been assessed as having "mild autistic symptoms." That's nothing to be alarmed about--basically, she has a speech delay and she gets really focused on what she's doing (and really irritated when she has to stop). She has already been receiving some services, and she's on the waiting list for a couple of preschool programs.
• Wilder is wrapping up the year at Carmen B. Pingree preschool. He has completed the Level 1 attending program and--cross your fingers--appears to be getting the idea of toilet training! He will start preschool at Carmen B. Pingree this fall.
• I am trying to figure out what I am going to do with Wilder for the next 8 weeks until kindergarten starts.
• I am also working on a book for parents of children with developmental disorders. It's a survival guide to caring for yourself, your family, and your child. The outline in flux, but I am working on producing content and I'll fix up the shape later.

That's the short version. As part of my book effort, I'm going to try to write blog posts more often to help me generate content.

The last word on vaccines ... for a while

OK, I'm running the risk of beating a dead horse here, but I just stumbled across the best summary I've seen on why the vaccine debate is a non-debate. I don't know a lot about the writer of A Free Man blog, but the post is extensively hyperlinked to original news stories. The piece he found showing that Dr. Anderw Wakefield, the scientist who first touched off this powderkeg, received payment from a law firm who represented the subjects of his study, is news to me, and shakes the already-wobbly foundations of the vaccines-cause-autism argument.

Folks, this mistaken belief is leading to a public health crisis. But it appears that American children and adults will have to start dying from measles before opinions on this topic change. And for that reason, I'm not ashamed to beat this dead horse.

I couldn't say it better myself

Another post from Autism Vox, this one on the vaccine controversy that is, as she says, "a false controversy":

2008 saw the publication of more studies refuting a link, and yet there’s been a call for more studies—-among the $1 billion in research initiatives noted in the Strategic Plan of the IACC is an item about the “different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups”—so it’s not as if this particular topic is going to go away.

I know there are folks who read my blog that are in the anti-vaccine camp, so it must be frustrating to always see me take up the other side. I feel obliged to continue, though, because science has a hard time arguing against emotion, and it seems like the argument for a vaccine-autism link is based on emotions. More from Kristina Chew:

Of the 3,393 or so posts I’ve written here, hundreds and hundreds and hundreds have been on vaccines. In the course of writing those posts, and reading about vaccines, about autism, about vaccines and autism, and about what people think about vaccines and autism and about why people think there’s a connection between their child becoming autistic and vaccines, the one thing I’ve mostly been left with is a sense of need—-a sense of needing to know—-of searching for the one answer about why and how this happened—-of needing to do the right thing. In an age when every single step of child rearing ... is not only scrutinized—-is written about in books, magazines, and websites galore, parents seem more and more haunted by the need to get it right.

The autism diagnosis is so devastating that parents are always going to look for something to blame. Vaccines have become an easy target. The same thing happens with other diseases that have often-mysterious causes: cancer, SIDS, Alzheimer's disease.

One place where I will disagree with Dr. Chew is in the area of good parenting. Parents with disabled kids are, for the most part, awesome parents. They don't have a choice. I have more patience with my children than I ever believed I could possibly have. The nature of raising a child with a disability made me go back to my reservoir of patience, dig it out and expand it, and let it fill up even more. There are people who can't handle it--the stories of abuse and murder of autistic children prove it--but those of us who get up every morning (and in the middle of the night) and keep providing love and care for children with very challenging demands are great parents. We need to give ourselves that affirmation every day.