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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

Autism, From One Parent to Another

The first chapter of our little booklet Same Child Different Day: One family's experiences during the first year after a child's autism diagnosis, shares with you our thanks that you chose to pick us up in the first place. If you were to Google "autism books", there are almost 6.5 million results to scroll through. And in that pile, many entries contain even longer lists of top-rated autism books. Then when you consider all the manifestations autism can take, the research for which is the right book for you and your family is virtually never-ending.

And you are only at the beginning of the autism journey!

So we've tried to consolidate for you within 50 pages some of what you might need, like to know, or encounter. In writing it, I tried not to make the adventure seem scary; because autism isn't and shouldn't be scary. But I did include a few anecdotes, some little glimpses into our life and how our world has been turned upside down. Keep in mind though that what we've had to deal with may not (and probably won't) resemble your life and changes.

I have to be honest about the anecdotes, though. While it is true that our lifestyle has veered off our once-expected path, it has now become "what we know". In other words, while someone may be used to obedient kids, "typical days" and soccer schedules, we've become accustomed to meltdowns, "routine pandemonium" and therapies.

But that is in no way a bad thing; it's our thing. And you'll find your thing too. As long as you never lose sight of the fact that your kid is still the same squeezable little proginy as always --- that you didn't cause this "autism" thing (and your kiddo can't control it either), then you'll be doing alright.

If you'd like to read the first chapter, find where you can get your hands on a copy of the whole Same Child, Different Day booklet, or just talk some more, please send me an email.

~Jon

Same Child, Different Day Content

I purposely started out Same Child, Different Day (SCDD) as a booklet. There are plenty of wonderful books on the subject of autism, and you should read them when you get the chance. But I wanted to create something that is thorough yet concise, that wouldn't be overwhelming while at the same time would provide enough information to be useful. Hopefully that's what I achieved.

Here's what I touched on in 8 chapters:

• From One Parent to Another: In this chapter you'll find a brief introduction and a short anecdote. Two points are touched on that make up the foundation for the manual; that this in no way is representative of what you will encounter --- I only try to give you our experiences as an example of what you might run into; and that, though you can expect changes every day, your child is not one of them --- hence the title Same Child, Different Day. The brief anecdote is titled The Hair Cut, and is an experience that's representative of our every day
• The Realities: Again, changes are the focus of this chapter. I also provide you with a list of almost 30 concepts and terms, a list that just scratches the surface, but you should find helpful. There's also an anecdote entitled Same Child, Different Day (you get the picture)
• In Now That You Have a Diagnosis, I try to explain what the label means (and what it doesn't). I share with you some practical information and include an excerpt entitled The Database that you should find useful
• Now, About Those Lifestyle Changes is a more in-depth look at what you might expect or even encounter. I try to provide you with some coping suggestions and share with you: The Mall Incident (quite funny, if I do say so myself), The Run-in (about people who are full of wonderful suggestions for you), The Comment (sometimes people just don't understand) and She Said That? (even professionals can say the darnedest things)
• Bed Time is self-explanatory and includes an anecdote called Dread Time
• The Unknown: This could easily have been the title of the booklet itself. I share with you the World of Random and a story about The First Meltdown
• You can't forget to take a little time out for YOU. A Little Something for You tries to explain that it's okay to forgive yourself while being yourself
• There's even a References section with book suggestions and website & mailing addresses to just a few of the most helpful places

This is an overview of SCDD --- I hope it's enough to entice you into a few copies for your group or organization.

Let me know.

~Jon

Help for a Recent Autism Diagnosis

We live in central Vermont, in an area that's easily an hour away in any direction from the nearest Interstate highway. Our small state is only pierced by two of these international thruways and, unlike many of our neighbors, rest stops are few and far between. As a matter of fact, on these limited access highways, there are only a couple of manned information points and to miss one can literally mean you've missed them all.

There are information booths in most of our picturesque our towns, and many businesses support racks of free giveaway guides. But sometimes you have to travel miles off the beaten path to find the kiosks or get good directions. And sadly, Vermont probably coined the phrase "You cain't get they'uh from hea'yuh". More sadly: while you're looking to find where you're going, you can miss a lot of the beauty that's right beside you.

What does that have to do with anything? Well, it's true that this blog is about our autism booklet Same Child, Different Day. But I also want you to know that we are available to you as a resource. For those just hearing that your little one has autism can be utterly overwhelming. We want to be your Welcome Center rest stop on this mapless, sign-free highway.

You have hundreds of questions, and hundreds of places to look for answers. There's such an overload, you may even find that you need to pull over to the side of the road and cry. But if you pull in right now and ask for directions, we can give you the insight of a family living the difference. Slip off the information superhighway and send us an email (jongilbert@rocketmail.com); we'll answer your questions --- and if you'd prefer to talk as opposed to electronic words, we can make arrangements for that.

We don't want you to feel that this is the end of the beginning, or the beginning of the end. You are at the beginning of the beginning: the Welcome Center. The autism journey is a crooked road rife with hair-pin curves, dead ends, forks, cliffs, hills and valleys. Hardest of all, most of us don't even know exacly where we're going.

Let us know if you'd like to carpool.

~Jon

Same Child, Different Day: Special Recognition

I talk like I created this booklet completely on my own. And while I did write, publish and print it pretty much solo, I couldn't have put a clean, finished product together without the invaluable help of some truly gracious people. Page 5 pays tribute to those special folks.

~My family has been terribly supportive, sometimes to the point of their own frustration. I stayed up for hours on end to get this completed, and sometimes took precious time from their own days. In the end, their patience made for a wonderful completed project.

~Heather Todd and Joannah Cornell of Kids on the Move (Rutland, VT) provided invaluable guidance in making the booklet an accurate read. They, along with several others and KOTM, have also been instrumental in helping Nolan cruise more smoothly along his path. They are directly responsible for his success and the success of this manual.

~Jenn gave me great proofreading assistance; Dean saw enough value in this project and let me have free use of the super-copier; Gwen provided invaluable tutoring on how to use said copier; and Vicky gets special credit for sharing her life with Corey. Thanks to all of you!

~And Finally, a special dedication goes out to Nolan: for years I've been writing without direction. Though I should and could have done something like this long ago, you inspired me to make it a reality. This booklet is for you, buddy.

~Jon (aka: Dad)

Welcome to Same Child, Different Day

Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis is a 50-page booklet that was written by the father and family of a child with autism.

The title refers to the essence of the experience: Though your life and lifestyle will be an ever-changing journey, nothing about your child is any different, simply because of an autism diagnosis. The manual is meant to provide some insight into what you might experience during this first confusing year. It in no way shows what will definitely happen to your family or your child or suggest what you are bound to experience; but it does share with you some of what we encountered. Of course, your results will vary.

In Same Child, Different Day you'll find:
[] Casual, entertaining (and sometimes even humorous) anecdotes
[] Practical information from parents dealing with autism every day
[] Useful concepts and terms you are likely to encounter
[] Encouraging suggestions to help you get through each day
[] A starter list of useful references you should find helpful
[] And much more

If you're part of a group or organization serving families of autistic childern --- or you simply have more questions about this informative booklet, please send an email to: jongilbert@rocketmail.com for answers, pricing and bulk ordering information.