Tuesday, May 29, 2007

Hacking My Child's Brain - Update

Here's a progress report from Mark Woodman, who wrote a series of articles in Wired magazine about treatment for his son's sensory processing disorder.
"Despite the encouraging results, the program isn't a quick fix for sensory processing disorder. Proprioceptive awareness is still pretty tough for Caleb. His brain may be getting the right information now, but he still has to learn how to use it for the first time. We hope that he now has the neurological wiring needed to eventually catch up with his peers in social areas. The intriguing aspect of this whole experiment is to see evidence that my son's brain continues to reorganize itself around the sensory information. Caleb is experiencing the world in new ways, and only time will tell what comes of it. "

Monday, May 21, 2007

Autism and Race

Kathleen Megan of the Hartford Courant reports on the 18 month lag time in diagnosis for an African American child with autism.

" Wendy Fournier, president of the National Autism Association based in Nixa, Mo., said the issue is "actually driving us crazy. ... I think there are probably a lot of kids with autism in the minority community who are going undiagnosed."Fournier said her group is establishing a committee to reach out to minority communities. "At conferences we go to, there are no black people there, no minorities. It's kind of freaky. It's very, very noticeable.' "

"[David] Mandell, assistant professor at the University of Pennsylvania School of Medicine, studied children on Medicaid in an attempt to eliminate income as a factor in quality of care. He found that white kids were diagnosed at 6.3 years old, compared with 7.9 years for African American kids. This late age for diagnosis is "not good for anybody," said Mandell."

"Mandell's study also showed that African American children were less likely - by 2.6 times - to receive an autism diagnosis on their first visit to a specialty care office and more likely to be misdiagnosed with conduct disorder and adjustment disorder."

Sunday, May 20, 2007

When a Child Outgrows the Safety Net

UPDATE: I neglected to include the essay's author in my initial post. It's Lisa Romeo. My apologies.

The New York Times publishes some wonderful essays on the weekends. I have really liked what I have found in their "Modern Love" weekly in the Sunday Styles section. The "New Jersey/NY Region" section also has some really good pieces.

This one appeared on Mother's Day in the NJ section, under a heading that said "Generations". I don't know how much longer it will be available for free online. But I thought it was worth sharing. A few excerpts:

"How does a mother keep from continually moving the net? Am I done with all that because Sean no longer arranges toys in straight lines or needs listening exercises? Because he can focus on a tennis ball in play, calmly enter new classrooms sans rehearsal? He is no longer so different, but is there still a special need? Something he still needs, from me? Maybe knowing, but not revealing, where his molted skins lie?

What do I know anyway? That it took 136 vision therapy sessions for his eyes not to hurt when the TV picture rolls or the sun glints off the pool? That his toddler habit of repeating every sentence I said was not cute but a sign of neurocognitive miswiring?

Sean may not be so different now, but I will always be a different mother, with painful memories of what could have been ordinary moments...

...I cherish the cheerful, dimpled adolescent with the amazing vocabulary, but he comes packaged with the recovered child of a thousand traumas. And the mother-advocate is a role difficult to relinquish. I was good at it. I got him through..."

This essay is adapted from “Special Gifts: Women Writers on the Heartache, Happiness and Hope in Raising a Special Needs Child,” to be published by Wyatt-MacKenzie in June.

Wednesday, May 09, 2007

We Just Got a Diagnosis, What Do We Do?

This brief article has some good tips.

I would add to it "Visit Your Library." Most of the library's books on autism have been selected because they have gone through the publishing process, which usually involves some sort of fact checking, and they have received good reviews from reliable professional resources. (Our library uses Booklist and Library Journal, along with catalogs from specialized publishers.)

A staff member at our library is also creating a collection of worthwhile web sites that will soon be posted on our library's home page. As soon as it is up I will link to it from the blog.

Friday, May 04, 2007

Jenny McCarthy Goes Public About Son with Autism

"I did want to acknowledge and confirm the fact that my son does, indeed, have an autism diagnosis," McCarthy, 34, said on Thursday's edition of ABC's The View, on which she served as guest cohost.

McCarthy's book on the subject, Louder Than Words, is scheduled to published in September.

"I just want moms ... who have children out there with autism ... to know that I am coming back in a few months with this book, and I am planning on using my big, giant, controversial mouth to blow the lid off a lot of things related to autism to give moms hope," she said. "It is so needed."

People.com story here.

Tuesday, May 01, 2007

Garage Door Cakes

"When he turned three years old, I brought out my inner “Martha Stewart” and baked a birthday cake that I knew no one else would ever imagine — a cake in the shape of a garage door."

Just another day in the life of a parent of a child with autism!

"It is never my intention to have him labeled ... I just want to have him understood."

"...I didn’t want to write this commentary to draw attention to my child. I just think it’s important for everyone to be aware that all too often there’s “more than meets the eye”. Before I had my son, I admit to judging a parent’s skills if the child misbehaved. But now I’m aware that we don’t know the whole story. I’m still learning patience and know that there is hope for each child diagnosed with austim, wherever they fall on the spectrum."