Celebrate the Spectrum Finale

Autism Awareness Month is behind us now; the conference speakers have packed up their projectors, the empty bottles have all been counted, volunteers have all gone home and we get to take a little break for a couple months. But all in all our Celebrate the Spectrum was a wonderful success; we look so forward to next year.

And Same Child, Different Day took the spotlight the final evening. But what was to mostly be a night of me reading from the booklet turned into a wonderful sharing session. Heidi spoke at length about her son Eli, and the pictures she provided were a wondeful touch. Jen shared a poem she wrote which made everyone cry. My Mom shared a newspaper article with a very positive outlook. Mike gave an anecdote that was also quite inspiring. And several others joined in the converation as well.

That's what it's about, after all: the sharing and support we all give each other as loved ones experiencing the same "different" days. Sure, all our kids are at different places on the spectrum. Some of us embrace the public and can't wait to enlighten others. Then there are those families however, who have decided that home is the best place to stay; and maybe these events didn't change that way of thinking at all. We're hopeful that they did, but if not, our number one goal was to show you that we're in this together.

No two ASD kids are alike, and it's those differences that bring us together. If all we showed our new friends is that they have someone to turn to, then the entire month was worth it.

Either way, see you next April!

~ Jon

Same Child, Different Day: The Unknown

Autism is an unknown. My good friend Heidi, whom I've mentioned before, has a great saying: "If you've seen one child with autism...you've seen --- one child with autism". No two are alike, yet its the differences that join them.

The chapter of Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis entitled "The Unknown" is similar to "Bedtime" in that it's a short by informative chapter. It talks about those differences and many more: like what causes our son's meltdowns, won't be what causes your child's. Yet, it's those meltdowns that make them so similar.

And the cause of autism is yet to be proven; which makes it difficult to find the right mix of therapies that will work for you and yours. But what works for you, though it will differ from us and the rest of the world, will be what works for you. It's as simple as that.

There's the connection: It's all these differences that bind us. And that's what this chapter tries to share.

If you'd like to read more of Same Child, Different Day, you can buy a copy (or several for your organization). Just click the PayPal link in the sidebar.

~ Jon

"Same Child, Different Day" Goes Global

I'm very excited that Same Child, Different Day has reached around to the other side of the world. I was contacted recently by a group in South Africa asking about our little booklet. To our new-found friends, thanks for your support and welcome to Same Child, Different Day; if it helps even one family, then "Misson Accomplished". To all the rest who have supported us so far, I have to tell you that none of this would be possible without you!

Our New Web Page

Here's just a short note to ask you to please check out the new web page for Exceptional Parents of Exceptional Children (EPEC), www.geocities.com/rutlandepec or you can click here!

Jenny McCarthy...again!

Jenny McCarthy. Jenny McCarthy. Jenny McCarthy. I'm guilty to admit that if I keep hearing the name Jenny McCarthy every time a news or Hollywood outlet mentions autism, I'm going to have a melt-down of my own.

I promised when I started this blog, that it would only be about Same Child, Different Day and anything that promotes, supports or supplements it. And I swore to myself I this wouldn't be a rant blog. I've had bad luck with that in the past so let's just say, I'll try to make this the only one of it's kind.

Jenny McCarthy has a son with autism; granted and my prayers to her. And she's found what she believes is a treatment that seems to have cured him, in her eyes; hallelujah and praise God. If it's true, nothing aside from the same happening to my own child would make me happier. But, for all the reporting outlets to have dubbed her the end-all and know-all when it comes to autism is finally getting to me. She purports herself to be a self-appointed autism advocate for parents, but I don't recall asking her to be my self-righteous martyr.

First and foremost, there are countless fantastic families and individuals who have done as much if not more where the diagnosis has touched them. But you don't hear about them because, unlike Ms. McCarty, they don't have piles of cash, unlimited free time or the benefit of celebrity to thrust them into the limelight. On the contrary: many have given up jobs and homes, to move in with family and devote all their time and money into caring for their child, because their state, insurance company or community won't or simply can't help them otherwise.

Also, Ms. McCarty has found apparent success with her son's particular issues. However, as my good friend Heidi is fond of saying: if you've seen one kid with autism, you've seen one kid with autism. What works for Jenny McCarty didn't work in our specific situation, and it may or may not work for you. But the celebrity community-at-large has embraced Jenny, and have chosen to utilize her as a resource for all things autism. That's an unhealthy route to take, when you consider she does have a specific agenda she's pushing, and knowing that not all of those affected by autism share the same beliefs.

Yet, Jenny McCarthy is called upon time and time again to answer every question that could be asked regarding autism. I'm not claiming that any other person would be better versed on the subject, especially not a school-trained stranger not living the autism maze. But there are other families experiencing this condition, parents who don't hold a narrow-minded focus or agenda. It's the way of our society: popularity is the biggest factor we use in determining the most qualified authority. Just once I'd like to see the news media call on a regular family with a typical laundry list of daily tasks, a reasonable income and no axe to grind.

Anyhow, I said I wouldn't rant, and I don't want to get all irrational and thoughtless. And I surely don't want to invalidate the struggle I'm sure Jenny goes through on a daily basis. No matter the degree, autism is a challenging, life-changing diagnosis. I just wish society had chosen a more appropriate representative.

~ 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

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