'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

Same Child, Different Day and 'Celebrate the Spectrum'

This booklet has proven to be a worthy resource in more than one way. For example, I was given the offer to speak in front of an autism support group because of the info I present in Same Child, Different Day. However, that turned into co-chairing that same group; Rutland, Vermont's 'Exceptional Parents of Exceptional Children' (EPEC).

And EPEC was once a small, little-known group until I had the good fortune to meet Heidi Corcoran Wener. Once we put our heads together, we were able to quickly turn what was formerly a monthly support group into the area's leading source for autism information and personal knowledge. And April will kick off "Celebrate the Spectrum", a month-long series of activities and events for folks living with autism, their families and the community-at-large.

"Celebrate the Spectrum" itself began life as merely a book reading, and has now turned into almost two dozen activities, presentations, events and celebrations of everything autism. If we could make Rutland, VT the premier go-to location for autism events (I say I'd like to make Rutland the Sturgis of Autism), then what a response from a little 50-page booklet.

The reading of Same Child, Different Day will still be the signature event of "Celebrate the Spectrum", but how exciting that it has grown to be so much larger than itself! And all in a few short months.

~Jon

Bed Time (Dread Time)

The shortest chapter in the booklet Same Child, Different Day deals with bedtime; a time of the day we have affectionately referred to as dread-time. Though it's the shortest chapter, it deals with what for us has become the most frustrating part of the day.

The chapter offers some suggestions and insight, and shares an anecdote aptly titled Dread Time. I even talk about melatonin, a product that we have had success with in getting Nolan to sleep, though your results will most likely be different. We always recommend you speak with your medical professionals before undertaking any medicine or supplement. And just a note: the melatonin helps him get to sleep, but does not necessarily keep him that way!

~ Jon

Now, About Those Lifestyle Changes

It's been some time since I've posted; I have been working on a few projects to promote Same Child, Different Day, and the Blog got overlooked. Back to it for you...

And for you, the next chapter in the booklet is titled "Now, About Those Lifestyle Changes"; it's no coincidence that this is the longest chapter in the guide. In this section I try to describe to you the scope of what we mean when we say "same child, different day". But I could only begin to give you a feeing for what you can come to expect. Your 'different days' will not mirror ours and to bequite honest, they won't mimic each other from one to the next.

As a matter of fact, the days of certainty and predictability will be replaced by unexpected adventure and learning. I feel confident when I say that I can think of no neuro-typical family who experiences or learns from their days quite as much as that of an autistic child. Just try to keep in mind that anything you are experiencing barely scratches the skin of what your youngster is going through.

In this chapter I also introduce the signature anecdote, simply titled "The Mall Incident". It vividly shares the often times embarrassing public meltdown, and provides a snapshot of what it's like to be on display for the world.

That's not to say you should shutter out the world, nor willingly hide behind walls. The stares and comments are aggravating, but you and your youngster with autism have the same restaurant, mall and hotel privilages as anyone not on the spectrum. Though convincing yourself of that will be harder that trying to enlighten strangers; even when their ignorance about autism may seem unbelievable.

Most frustrating and surprising though, can be the reaction toward your child from the very people who should be helping him. Even trained health professionals can be callous and insensitive. I share a story of one such encounter when we visited the office of Nolan's eye doctor. One staff member made us rethink a follow-up visit to that particular clinic.

To lessen the daily burden however, a short list of helpful tips is included in this section. Most of them are common sense and you may do many of them anyhow. But if not, (or even if you look at this list as a tiny reminder), we hope they'll prepare you a little better and make each day a little less different.

~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

We're Now Using GoodSearch as Our Personal Search Engine

Here's a new easy way to raise money for your favorite cause. Just start using Yahoo! powered GoodSearch.com as your search engine and they'll donate a penny to your favorite cause every time you do a search!

In addition, do all of your shopping through their online shopping mall, GoodShop.com, where you can shop at more than 900 top online retailers and a percentage of your purchases will go to the charity or school of your choice. You pay the same price as you normally would, but a donation goes to your cause!

Here's the web site — http://www.goodsearch.com/. You can also read about GoodSearch in the NY Times, Oprah Magazine, CNN, ABC News and the Wall Street Journal.

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

Now That You Have an Autism Diagnosis

At the point you're told your loved one is autistic, your first reaction is likely extreme fear, absolute confusion, uncontrollable anger or overwhelming guilt. More likely, you're feeling each of these simultaneously, along with emotions I have yet to, can't or prefer not to mention. Once you're able to get a handle on what you are feeling (we'll talk about that in an upcoming chapter), it will be important to think about your (and more specifically your child's) needs.

The Same Child, Different Day chapter entitled "Now That You Have a Diagnosis" shares a brief but practical road map of sorts, a kind of information booth with suggestions about where to start looking for services. I didn't go into great detail about any of the services available, as you'll likely want to start looking for assistance at your state level. But you are provided with key phrases to use in your search, information about local (voluntary) autism databases and a story about a single-mother friend who took the time to make sure her son is protected when she can't be available.

As always, if you want someone to talk to who's on the front lines, (we aren't doctors or professionals; just loving parents) please contact me. You can also email jongilbert@rocketmail.com if you'd like to order booklets for your group or organization.

We wish you all the best.

~Jon

(Next chapter: "Now, About Those Lifestyle Changes")

Denis Leary's Autism Comments

I'm taking a little diversion from talking about the booklet so I can share with you a concern. There's been a little gap since my last post because I've been working on an article for Associated Content, and the subject matter may interest you.

Apparently, Denis Leary of Rescue Me, and the voice of the saber-tooth tiger Diego in the Ice Age movies, has released a new book (Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid), and it's causing some stir. Most specifically, Chapter 6 entitled "Autism Schmautism" has raised the ire of the autism community, and autism advocates like Jenny McCarthy and Holly Robinson Peete.

Since the October, 2008 release of quotes from his book, Leary has said the quotes were taken out of context but has apologized. Sort of. I won't get into the commentary here, but you can read my article over at Associated Content.

There. I feel better now.

~Jon

Autism Realities

There's no one way to deal with, understand or treat autism. In the second chapter "The Realities", I try to show that this affliction is only a part of your child. We don't believe that autism is their definition any more than big feet or blonde hair would be. Is your daughter a red-haired girl, or is she really just a girl who happens to have red hair? You may not think there's a difference, but when it comes down to it, hair color is just one aspect. She probably has some odd quirks too, but you wouldn't call her "our odd daughter" (alright, maybe you would; I don't know you). But really: I hope you can see what I mean.

Regardless, you will find people who look at Autistics (big "A") as a culture; a group of neuro-diversity advocates who strive to encourage society to accept them or their family members for who they are. These are generally higher functioning autistics who do not seek treatment or a cure; rather, they live for inclusion of autistics the way they are. That's not to in any way say this group is wrong. Instead, this is another facet of the condition for you to research and consider.

In this chapter the anecdote "Same Child, Different Day" explains how we came to the decision that, not only is Nolan the same child he was the day before his diagnosis, but that we were not going to treat him differently either. As the last sentence of the short story says: "We refuse to let his condition cripple him and decided not long ago that he will graduate from high school; in that way, he's no different from his siblings."

One thing though: we didn't want this booklet to be clinical or dry. On the contrary; I try to keep you entertained throughout. But as with any good self-help manual, it's nice to have a glossary of terms; something to explain some of the concepts you just might come in contact with. What a coincidence: I included that here as well!

In the most formal part of the booklet, I have listed a few definitions for many terms you may encounter. From ABA (Applied Behavioral Analysis) to Thiomersal (or Thimerisal), there are explanations to nearly 30 of these concepts, and I hope they shed some light.

In fact, I hope you find that the entire booklet sheds some light for you. But if you still have questions or to order bulk copies, please email me.

~Jon