Thursday, August 20, 2009

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.


Sunday, August 2, 2009

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