Autism Behavior: The Best of Luck

It's nice to see that our autism family support blog has some loyal followers! Same Child, Different Day wouldn't be such a success without all of you, as well as the shy readers who choose to stop by casually, but aren't official followers. I'm happy to have any and all of you stop by, and most of all to provide your wonderful comments.

There are some people however who choose to make comments and ask questions outside of the Same Child, Different Day blog. For instance, a friend saw us in a restaurant the other day and asked how it was that our autistic son was behaving so well.

Before I get to how we answered the question, let me first tell you that Nolan was really behaving well. Our restaurant moments are catch-as-catch-can; many times he can be overwhelmingly impatient for his food to arrive; a typical reaction of those with autism. The chant's of "no, no, no" to every attempt at preoccupation and the drumming of all the flatware simultaneously can be stressing to the most stony nerve.

So the fact that Nolan was giggling softly and drumming only his fork was for us a wonderful time. Couple this with the mom across from us who was having a heck of a time with her two presumably neuro-typical youngsters, and we were practically in Restaurant Heaven.

I think what helped us with Nolan may simply have been that we hadn't waited until the last minute, until he was truly melt-down hungry, to set out to eat. Another thing that has worked immensely for us is a portable DVD player. Now, I'm not a big proponent of TV-babysitting, but in the world of special needs parenting, we don't always want what's right, we sometimes want what's quiet! And when the numbers, letters, shapes and puzzle pieces fail to hold their attention, there are times when an electronic device is just the ticket.

With an autistic child, being prepared before you strike out is your best weapon. And only trial and error (and time) will tell you just what you need for your own preparedness. Sometimes a special blanket will be all you'll need. Other days, a DVD player, coins, a bag of blocks, three puzzles, an old sock, two packages of crackers, a handful of Gummi Bears and Horton hatching an egg won't be enough to ward off the ruckus.

So in a nutshell, luck was the big player in Nolan's well-mannered behavior. And as they say, luck favors those who are best prepared. Now, I know that isn't the flashy, deep, awe-inspiring solution you may have been thinking I would have come up with. It isn't a Dear Abby-esqe answer, even. Maybe I just wasn't prepared for the question.

If you have a comment or suggestion related to your own preparedness with your kiddos, please share with the rest of us. And feel free to offer any sage words of wisdom. I won't mind. And if you'd like to pose a question --- if there's something on your mind related to your kiddo and you'd like an outsider's uneducated opinion --- I'd be glad to take a stab at it.

Just jot me an email, and I'll do my best to post a thought-provoking (or even sarcastically mocking --- I have those, too) answer.

~Jon

Same Child, Different day celebrates ONE YEAR!

Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis has been published and distributed for one year this month! What a great thing to be able to say. So much has happened and so many people have been touched by this family autism resource. It has travelled across the USA, from Massachusetts to Washington state. It has reached the souls of folks from Alberta, Canada to Durban, South Africa. You are the ones who have made it all possible.

For those not yet familiar with this autism booklet and some of the results from it, let me share with you a few of the highlights that may be of interest.

• The booklet is a nice, compact manual that shares some of my family's anecdotes of what has happened during our son's first year after he was diagnosed with autism. So much more has happened since that first year, but our initial experiences are the focus of this booklet
• The chapters deal with everything from bed time to taking time for yourself. It also includes a section with concepts and terms as well as a short but handy reference section
• This autism reference booklet lead to the start of Rutland, Vermont's now-annual "Celebrate the Spectrum", a month-long series of events throughout April, which you may know is National Autism Awareness Month --- which in turn lead to the enhancement of Rutland's Exceptional Parents of Exceptional Children (EPEC), our own local autism support and awareness organization
• The manual is included in Autism Speaks' resource listings (Manuals & Toolkits) which brought the booklet into the hands of friends in Canada and South Africa
• Jon Gilbert, the author of the booklet, is available to speak to your autism awareness group, ASD class or any facilitated gathering. He can speak for an hour or a day; in his local New England area or with your group on the west coast --- just send an email by clicking here
• And there is so much more!

Please, pick up your copy today by clicking on the PayPal button in the sidebar. Please tell anyone you know who could use a copy (or a group that hasn't purchased booklets yet) so we can let them in on everything, too.

Let me know if I left anything out, if you'd like me to include you site's web link on our pages.

All the best and thanks for the great year!

~ Jon

Autism: The things some people say

There's no end to the idiotic things people not living with autism say to those of us dealing with the condition every day. From the lunch counter girl ensuring "how hard could it be" to the medical professional saying she'll take the day off during my son's next appointment, one thing's for sure: if I don't need an outsider's unsolicited advice, commentary or opinion, I'll get it. Only those living the autism maze can truly understand the world we share with our loved ones.

For that reason I have said in the past that we can forgive ourselves if, every once in a while, we say we wish our kids were "normal" (labeled "nero-typical" for political correctness). We can forgive ourselves for the thought slipping through every so often that we wish things were different. I'm not saying that we want our kids to be anyone other than who they are today; instead that it's okay if we think about what might have been, if just every once in a while.

Today Nolan was having an especially hard day. He had been whining for much of the morning and afternoon. Later, when he woke from a nap, he was crying incessantly and without reason --- that is, without a reason we could conjure up. No amount of DVD or computer time seemed to help.

I hope its just because I was frustrated for him not at him, but I actually uttered a phrase I have yet even so much as thought up to this point. Without mulling it over for the briefest of seconds, I said aloud to my son, "Can't you just NOT have autism?"

The sound froze in my ears. I mean, I wasn't making a true wish, no rubbing of lamps or upon falling stars. I didn't even expect a magical, glittery transformation or the crescendo of a chorus. But I honestly doubt at that moment that I had spoken the words as a prayer for my son's relief. Instead, I'm positive that at that specific juncture in the space-time continuum, right then and there, I was honestly speaking for my own selfish desire. I meant the utterance for my own satisfaction, a request bourne solely for my own need and want.

I don't know that it was okay for me to say it, to say that sequence of words strung together that ended up forming an impossible plea. I will have to be the one to battle with the appriopriateness of that sentence.

In retrospect, I am not the one battling with the unwanted sentence in the first place.

~ Jon

Autism: Fighting the battles you can win

I started today's post as a rant, which I said in April I wouldn't do again. A couple of people had said some idiotic things that tripped my trigger, and I was going to go off on how insensitive and unthinking people can be. But then I realized that these people don't have a clue about autism, so I decided, what's the point?

Instead, I thought I'd share with you another autism anecdote, something that happened to us just this morning and that typifies what we go through every day.

When getting the kids together in the morning, I admit that either a SpongeBob Squarepants, Dora the Explorer or Blues Clues DVD will be playing in the background. It's a battle we've decided is better "lost" than challenged while trying to give meds, brush teeth and everything else involved in trying to get a couple of high maintenance kids together for school. Anything we can to to make the process as emotionless as possible --- for us --- is a good thing.

This morning we were on an episode of the square sponge of which Nolan is not especially fond. He knows about "skipping" the episodes and ran to grab the remote. Practiced as we are at this game, it was a no-brainer what he was asking, and we attempted to move the episode along. Several presses of the remote met with no results, and Nolan became visibly upset.

He began to whine and repeated "skip, skip" in his own pronunciation. We thought to change the batteries, hoping that would do the trick.

We've just moved and our house is still yet to be fully unpacked. So, finding a set of small triple-A batteries hidden amongst the boxes labeled "Kitchen", "Kids Stuff" and "Your Guess is as Good as Mine" was a near impossibility. We were fortunate however and snuck some out of a small, light-up fan we had just bought him.

By now he was melting down, giving a crying fit that no parent wants a child to suffer before school. But he's yet to learn patience or the limitations of something that's broken. It has worked every other time without incident, so why not today, People?

We opened the remote and realized right away that no amount of changed batteries would do anything to help the situation. Tipping the remote upside-down, a small amount of moisture/water/some unknown liquid trickled from the hand held and onto the entertainment center. Oh happy day! We tried, but the batteries just ended up getting wet.

Nolan's meltdown now in high gear, we realized the only remedy would be another DVD, and fast. We popped out SpongeBob and slipped in a Looney Toons collection. It worked, and fortunately the bus was less than two episodes away. Nolan calmed down and all was quiet on the homefront.

It would be better if we could get the mornings going without movies altogether. But we're willing to accept that there are other places we can put our collective foot down. Morning just isn't that place.

~ Jon

Autism Spectrum Disorders: Calling all storytellers!

Phase two of the marketing test for Same Child, Different Day elicits your help once again. As many of you are aware, this family autism support resource is full of our own anecdotes and stories of how Nolan's autism has affected our family directly. But I've realized with the latest promotion that our experiences are only one small part of the story that is autism. Time and again people commented, "When I read your booklet, it was refreshing to see we aren't alone," or "I'm guilty of feeling justified that you experience the same meltdowns we do," and "Thank you for making me realize it's OK to laugh about this condition every once in a while."

You, too have experienced so much in dealing with ASD's, that I would love to hear from you, as well. And I'd love for you to share your thoughts and experiences with all of us, with the ultimate goal of telling the world what we have to say.

If you are comfortable with it, and in your "spare" time, please feel free to comment below or email me with your own "Spectrum" stories. Not as an invasion of privacy or morbid voyeurism; rather this is a chance to celebrate your loved ones and show them off in front of the world! Parents love to brag about their kids and now's your chance.

Share something funny, something frustrating, something prideful or something quirky. Did you have an awkward but amusing run-in in public? Maybe we did, too! Does your loved one living with autism have a funny trait? No need to be embarrassed or devastated by it; brag about it now! Here's your chance to tell everyone how frustrating that stim is, while at the same time admitting that you have laughed about it behind closed doors. I am not asking any of us to make fun of our loved ones --- oh goodness, no! Instead this is an opportunity to include them in mainstream life --- a chance to show off the fact that, just as they are as different as chocolate and vanilla, they are equally just like everyone else.

And if sharing your name is an awkward proposition, no worries! If you ask me to, I'll honor your request for confidentiality and anonymity. Just keep in mind that the final intent is to present your snippets in print.

I have a saying: "Doctors keep people alive, but storytellers keep CIVILIZATIONS alive." I think there's a message there somewhere. Anyhow...

...thanks a lot and Happy Storytelling.

~Jon

Autism Support Booklet: Thanks for the critiques

The requests for Same Child, Different Day over the last month were exciting. Granted, I gave the autism family support resources away, but that was the point for this 'promotion'. Now I'd really like to hear from those of you who got a free copy of the booklet; time to keep your end of the bargain.

I look forward to your honest critiques and comments. You can email me privately at jongilbert@rocketmail.com, or you can post a comment below. Either way --- and as long as you let us --- your opinions will be shared with the other readers.

But I have a deeper purpose than just comments on a blog: this is one leg of a multi-faceted marketing survey. I have bigger intentions for the booklet, and you my friends (and of course, your helpful words) are one piece to that plan.

So, if you've gotten the free autism support guide Same Child, Different Day, then I'm calling in your chips, as it were. Please email me or comment below when you can. I'm looking for honest opinions, suggestions, things you were satisfied with, something there should be more of, whatever there may have been too much of, or things that made you laugh or cry. I'll read all your comments and emails, then decide next which direction to take the resource.

If you haven't received a copy of Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis, you can still get one by ordering from the sidebar to the right. As before, first select from the drop-down the pricing based on the quantity you desire. You'll be able to select an exact amount when you get to the order page --- the price is $4.95 per copy or less, depending on the number you request.

Of course, if you order at the right, please email me explaining that you've placed an order with PayPal. Oh yeah, and don't forget to let me know how you stumbled across this little world.

Please let me know if I missed anything else.

~Jon

Free Autism Family Support Services Booklet

Hello all: I'd like to elicit some help from my wonderful friends, families and readers. I'm calling out especially to those families who are beyond the first year after the autism diagnosis.

From Monday June 15 through Sunday, July 12 I'm offering free copies of Same Child, Different Day: One Family's experiences during the first year after a child's autism diagnosis. In return, I'd like your sincere evaluation of this autism booklet and your suggestions as to where it can be changed or improved. I'd like your supportive comments on how I can improve or grow the booklet. Over the past 10 months I've gotten some great feedback from families seeking autism support services, and I could use more.

I'm a glutton for constructive criticism, and would appreciate your honest, thoughtful, supportive input. In the end, I'll be able to decide what direction to take the third printing of the manual.

So for the next month, if you'd like to order single copies of Same Child, Different Day, please send an email to: jongilbert@rocketmail.com, and be sure to include all your contact information. Again, this is one copy of this autism booklet per household, and understand that I'll be nagging you for your feedback. Please keep in mind that if you are looking for more than one copy per mailing address, you'll still need to order from the sidebar to the right.

Also, so that I can keep this post at the top, I won't be adding another until after the 12th of July. Until then, send me an email for more information.

~Jon

Same Child, Different Day: A Little Something for You

The last official chapter in this autism support booklet is "A Little Something For You". The entire point of this final labeled section is: 'Never loose contact with yourself.'

Your time as the parent of a child with special needs --- in this case, autism --- will mostly be devoid of "me time". So when you get free moments, take full advantage of them. It sounds so simple, yet it gets forgotten so easily. You can not take care of your child if you can't take care of you first.

You will feel guilty about it too; that's inevitable. But this chapter briefly lets you know that forgiveness of yourself above all others is paramount.

It's also useless to blame yourself for this sudden life-altering circumstance as well. Instead, celebrate the successes as they come. And remember, we're all here for you --- you are not alone and always have someone you can turn to. Always.

~ Jon

When Ordering Same Child, Different Day

I'd like to thank all who have ordered Same Child, Different Day and hope that you're finding it helpful, informative and enlightening. When you order the booklet, if you could leave me a comment here somewhere, it would be truly appreciated.

Let me know how you came upon the blog site for Same Child, Different Day; it's always fun to find out.

Also, I'm interested to know where you're from. It's interesting finding out what corners of the world our words are filling.

Finally, come back later and let me know what you think of the booklet; let others know as well. I'll take your words of encouragement and your critiques. Since Same Child, Different Day is for you, I can only make it better by hearing from you. And you'll be sharing your honest opinions with other readers. Besides, your opinions are less biased than mine.

Keep in mind that when you order, there is a drop-down for the price break-outs; select from the correct price group and you'll be given the opportunity to enter an exact quantity later. All the prices are in $US at this point - I don't have any way right now to accept foreign payments or convert foreign exchange. At this time I prefer and exclusively use PayPal. If you aren't comfortable ordering directly online (which is actually the most secure way you can go), PayPal provides a mountain of purchase options.

Anyhow, please keep reading and commenting and I'll keep trying to support you and make a difference in the lives of our special kids.

~ Jon

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