Some December Tidbits from "Same Child, Different Day"

I just realized that this must have been a busy month. I haven't posted anything in almost 4 weeks which, no matter what has been going on, is a rarity for me! There has been much ado in both our autism and non-autism worlds, and I guess time just got away from me. I mean, holy cow! Can you believe another Christmas has come and gone? Here's where we were last year with this blog: Same Child, Different Day Content - I was still describing the chapters of the booklet and was only on the 4th post! This is the 45th post, and so many people say they have been helped by both this blog and the booklet "Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis": Review, Reader Critiques, Global Reach, Radio Interview.

I wish I could write more often; I should write more often. But I can only do what I can do. As I have done once before (and am sure I will do again), here are a few tidbits from the past few weeks, both related and unrelated to our autism work --- because it all relates, doesn't it?

• Our new business is forming nicely! I'm just waiting for the VT tax department to get back with me on a couple questions, and I need to finish designing one form on my end. I have a meeting with BROC Micro-business --- a free, community-based service in our city which helps new entrepreneurs --- on January 7. If this all works out (and it has to), in the end it will mean much more time to spend with the family. God knows, Lori could use the help! How do you manage work and therapies?
• Speaking of Lori, she'll be starting college in the summer. She'll attend the Community College of Vermont and is looking to concentrate on Pediatric Physical Therapy. Has dealing with autism inspired you in any way?
• I published an article on Associated Content in opposition to our state Medicaid department making the unilateral decision to reduce Nolan's coverage. Since our local papers wouldn't print it, I took it online. One reader was prolific in her comments, and feels that my opposition is counter to the best interests of Nolan. I tried to explain the crux of the article regards the state agency making an unqualified reduction. The commenter implied that, regardless of the entity making the decision, we are using our therapists as a crutch. Please slide over to the article and post your comments. I value your opinions.
• We wrote a 4-page letter to the state, requesting they reconsider the above decision. Surprisingly, a week later they wrote back that they had, and his services are once-again covered to an acceptable level. Tell us if you have ever had to battle with state agencies.
• Then, we found out from our private insurance company that they (the insurance company) should not have been covering Nolan's services based on his diagnosis. So, to make an already-frustrating situation even worse, I'll have to battle with them, along with my illiterate state legislature that doesn't believe autism should be covered by insurance. Does your state require insurance companies to cover autism therapy services?
• (Downer Alert!) We found Christmas to be tough this year. As far as I'm concerned, Christmas in our house is about the kids. Lori and I like to give each other gifts, too. But as long as the kids get taken care of, and are excited Christmas morning, our job is done. Well this year we were looking for a great reaction from Nolan, based on some of the strides he has recently made. We'd hoped, anyhow. Instead, while his sisters eagerly tore open gifts and screeched happily, Nolan paced the house, covering his ears and making noises akin to Taz of Looney Tunes fame. He did play for hours with one of the toys we bought for him (an inflatable ball pit with a tower and "ball" waterfall), but somehow, it just wasn't the same. My good friend Deanna, who is always the most wonderful voice of support, encouraged on Twitter, "you may have a long way to go, but remember the journey is worth it. Sometimes hard to do, I know...". You can say that again, Deanna! Tell us about times the frustrastration that can be associated with autism has affected your family and how you have coped.

~Jon

'Celebrate the Spectrum' Radio Interviews

April 1st marks the beginning of National Autism Awareness Month. Begun in the early 1970's by the Autism Society of America, the nation now recognizes April as a special opportunity for everyone to educate the public about autism and issues within the autism community. Along with that, my own local support organization, Exceptional Parents of Exceptional Children (EPEC) is pleased to roll out 'Celebrate the Spectrum': a month-long series of events, activities and talks aimed at sharing our lives with our community.

To make folks aware of this month's activities, my EPEC co-chair (Heidi) and I set out on two radio interviews: one locally with our most popular radio station (Mix 98.1/WJJR) and a smaller, independent station in our queen city of Burlington (105.9/The Radiator). On separate occasions Heidi and I have both been on the program (The Next Frontier) with the host Anne Barbano, who also produced a wonderful video called "Living the Autism Maze" (check it out here).

To listen to our talk about 'Celebrate the Spectrum' and also how Heidi's National Guard duty affects her relationship with her son, please click on this link (interview). The page takes about a minute or so to load, so please be patient. Of course, I talk about Same Child, Different Day, too!

~ Jon

Autism Radio Interview

I mentioned a while ago that we were supposed to present Same Child, Different Day during a radio show last month. Anne Barbano is a director, writer and producer of a presentation called Living the Autism Maze, and is the host of a local radio talk show. She headlines 105.9 - The Radiator's "The Next Frontier", an autism-focused program that "strive[s] to educate, inform and create opportunity for a community that may not always have access to inclusionary experiences."

However, our January 14, 2009 show to talk about the booklet did not record; can you believe it? Anne was nice enough to put a little blurb about it, with a link to this site, but it would have been wonderful to be able to provide you with the listening link here.

No matter, if you'd like to talk about the show, writing booklets, or anything autism-related, please drop me a line.

~ Jon

Autism Radio Interview and Buying Copies of "Same Child, Different Day"

Just two short notes for now:

~ 1) I had a radio interview today to talk about Same Child, Different Day. When the stream is up on the host's website, I'll post the link and details from the show. But for now, you can click here to get more info about the host Anne Barbano and "Living the Autism Maze", and check out the eclectic little commercial-free Vermont community radio station here: 105.9 = The Radiator.

~ 2) I've posted a place in the sidebar where you can buy copies of Same Child, Different Day through PayPal.

~ Jon