Special Occasions: Who's Expectation is it, Anyway?

I've mentioned before about the difficulty with holidays and special occasions where our son Nolan is concerned.  He wears the label of “classic autism”, if one can even be described as such.  There are times when he is the “stimmy”, “routine-y”, “bouncy”, “no-eye-contact” template of the definition.  Other days, he won’t stop hugging us or stop talking (granted, the “talking” is generally a constant repeat of a three-line section from a SpongeBob episode, which I guess would be back to the routine and stimming).  But, rarely does he get excited in anticipation of anything other than returning home to fire up the iPad.

His sister Madison dons a PDD-NOS diagnosis (which she will relinquish when the bright, shiny, new DSM-V hits newsstands), and on a good day would easily be mistaken for one of her neurotypical peers.  Tell her there’s a birthday coming up (hers or a friend’s), or that Santa is even weeks away, and she glows with anticipation.

When any big day is upon us, Mad is as excited as a Chihuahua is to a doorbell.  She salivates at the thought of a new doll, an art set, a picture drawn in crayon.  To her, opening gifts is an event to be savored.  And no matter what is inside, no matter how trivial it may appear to an outsider, to Madison, it is keys to Cinderella’s castle.

Nolan, on the other hand, remains stoic and resolute.  No, sir --- no silly gifts will loosen his resolve to stay glued to whichever electronic device we forgot to put away the night before.  It isn't in him to get excited about what’s inside the red, green, uninteresting paper.  Oh, he has little problem responding in one way or another to the product inside, but unlike Mad, his reaction is never what a parent expects or wishes for their child.

This Christmas wasn't much different, though it was better (for us) than holidays in the past.  He was a little more excited; slightly more animated when he opened his gifts.  It could have been the electronic nature of them, or he could have genuinely been energized.  Either way, his eyes seemed to shine a little brighter (if that could even be possible), and his smile was more genuine.

I don’t know if it really matters either way.  I mean, to us as parents, we want him to be happy, and excited, and to look forward to his birthday.  But if he doesn't get that way, is that on him, or on us?  What if he’s satisfied with whatever emotion he is feeling?  He doesn't have any idea he is missing out on anything…because, to him, he isn't.

The rest of the year, the word “normal” frustrates us to aggravation or tears, depending on the situation.  Yet, when a special event rolls around, our hearts are broken that our kiddos don’t have a “normal” reaction to the occasion.

Sometimes it isn't our kids who have the difficulty. 

~Jon

Myth: Individuals with Autism are a Danger to Society

There is a misconception --- likely fomented by the media and a susceptible public --- that children with autism spectrum disorders are somehow dangerous, or begin to exhibit dangerous behaviors, as they get older.  While this may hold true for some individuals living with autism, the same can be said for any neurotypical person.

In fact, with early and intense intervention, symptoms of children on the spectrum tend to improve rather than worsen.  While autism can never be cured, and a child certainly doesn’t grow out of it, with proper treatment, individuals can learn ways to cope with their condition.  Many, in fact, go on to lead successful, productive lives.

It is very rare to find a person with autism who is outwardly violent or who purposefully commits acts of hatred.  When someone on the spectrum is involved in aggressive incidents, they are usually instigated by frustration, sensory overload, and physical excess or similar stimuli.  Of course, as with anyone, there are exceptions to this, and other medical, mental, or behavioral factors may be evident as well.

If you’ve had other experiences or have anything you would like to add, please comment below.  I encourage thoughtful, stimulating conversation, regardless of your viewpoint.

~Jon

Same Child Different Day, Back from a Break and New Information

I’m sad that it has been 10½ months since my last post.  There was a point in time when I was able to commit day and night to this blog.  I was sharing what you wanted to hear, and you made it successful.  However, as it often does, life slid in behind the wheel and steered us down a different road.

The bad news started with losing my 9-to-5 in January, which by itself can stifle one’s enthusiasm.  However, I immediately signed up for college courses, working toward my Bachelor’s Degree in Communications, and I began looking for another job.  Along with meeting the requirements of the Department of Labor, the college courses have been research and writing intensive, so I have appropriated much of my authoring time to that.

Since then, I was also fortunate to have been invited to co-develop an autism resource center (ARCTIC: Autism Recognition Care Training and Information Center) at our local Vermont Achievement Center (VAC).  Creating the proposal, cultivation of the facility and duties as the Coordinator of Autism Resources has added to my list of chores.  I also host the blog for the autism support group (Celebrate the Autism Spectrum) at VAC, and the organization offered me a position as an Education Instruction Assistant in their school for children with autism.  So, I have been deeply immersed in self-enrichment as well as continuing advocacy and education projects.

In reality I have only taken a break from the duties of "Same Child, Different Day" for a short while.  While I’m not completely happy with that, at least I have been in front of continuing to help folks.  In the end, that’s what’s most important to me.

If you would still like to order a copy of the booklet Same Child, Different Day, or to email me personally, click here.  If you or someone you know would like to more information about our Rutland, VT area autism resource center, the school, the support group or our other blog, please click on this link.

Thanks and welcome back!

~Jon

Autism and Carly Fleischmann, in her own words (literally)

Check out the video below; this girl is amazing!

http://www.bigdandbubba.com/pages/archive2012.html?feed=447152&article=9637873

Thank you to Big D & Bubba for the link!

~Jon

Autism: A Family Affair

I don’t mention it much here; heck, I’ve gone back through my posts and don’t see that I’ve ever mentioned it once.  Nolan isn’t our only one on the spectrum.  His older sister Madison was diagnosed a little over a year ago when she was almost seven.  I don’t think to ever mention her autism for a few reasons.

First of all, she is lucky to even be alive.  She was scheduled to be born January 29, 2004 (today would be her 8^th birthday), but she couldn’t wait.  She came to us instead in November, 2003 – three months early at 27 weeks plus five days.  She was 14 inches long, and tipped the scales at a meager 2 pounds four ounces (sugar is heavier, but not nearly as sweet).  For her first two years we were fully focused on keeping her alive.

Since then, aside from some minor medical concerns and a demure size that belies her energy level, she’s progressed at a fairly steady rate.  She’s scarily intelligent and (as far as the rest of the World knows) is the happiest of all Earth’s creatures.  But, there have been things that caused us to worry about her.

She hand flaps like she’s trying to take off; she has trouble with the appropriateness of some of her conversations; Mad is friends with other kids, but gets lost when she’s pressed to understand social cues; she repeats, repeats, repeats; she can’t recall the “morning drill” on her own from day to day; she is literally distracted by shiny things (woe unto the mirror hanging on our bathroom door)…and the list goes on.

A couple years ago, we had her tested by the same folks who ran the series on Nolan.  While Mad’s level of autism barely mirrors her brother’s, we never doubted our concerns.  Not that we want even one on the spectrum, let alone two.  Nevertheless, her diagnosis has helped us out when it came time to get her some therapies she has since benefitted from.

Still, it’s tough from day to day to think that she is even autistic (or has autism or whatever you prefer to read).  But, she has been diagnosed and she is.  I don’t know why I felt the need to bring that up, other than today is January 29 and it got me thinking…

~Jon