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

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

Happy 6th Birthday Nolan

As I get into my adult years, I like to think of my birthday as more about my Mom than about me. I mean honestly, do I want to keep counting them anyhow? I've had enough birthdays to see the inaugurations of ten presidents (and participate in votes for half of them), see the start and end of America's space shuttle program, watch as personal computers grew by shrinking (from the TRS-80 to the iPad), and to be called "people your age". So, to say that I no longer experience the same thrill from each new birthday as I once did would understate the truth.

The same goes for the first few birthdays as a new parent. For me, at least, the little ones were still young enough that they didn't feel the full thrill behind the streamers, crepe paper, pastel cakes, gift wrap and party hats. Those first couple of celebrations (maybe numbers one and two) were for us, the Parents. Admit it. Even you found some gratification (and maybe a little selfish pride) from the attention doted on you, Mom and Dad, in the name of your precious little angel.

But at a certain age, that doting turns toward the kids, which is as it should be. They acknowledge the gifts they receive with smiles by the pound. Their laughter, the screeches --- all approval for of a job well done. At that time, its all about the kid. Or, at least, it should be.

Not in our house; not with Nolan. Today is Nolan's birthday, and for us it was simply the day after yesterday. There were no giggles after tearing into a package. Last night we heard no sound of anticipation; no "Daddy, tomorrow's my birthday" or "what did you get me, Mom?". He can't tell us what he wants, so he doesn't screech in excitement when he gets it.

We tried to liven up tonight with a trip to Applebee's --- mainly because they sing that familiar birthday cadence (the one that only the people embarrassing the birthday-ee enjoy). Instead of smiling from ear-to-ear, he covered them with his hands. Not the reaction we were hoping for.

A friend told me today that he's adorable, and the fact that he doesn't get the same emotion from birthdays as other kids doesn't matter; that he loves and respects us anyhow. I know she was trying to help; I really do. But its little comfort to parents who want their children to experience joy; parents on this side of the fence. Birthdays, Christmas, even Easter Egg Hunts.

Nolan's sisters and his cousins traipsed the yard outside Grandma's house this past weekend looking for hidden plastic eggs. But to get Nolan to do so meant breaking him away from SpongeBob. He took five minutes to find twelve eggs; then he was back in his pineapple under the sea.

Maybe that explains why no one --- not anyone --- called him for his birthday, either. It was probably figured he wouldn't understand the reason for the call, anyhow. Maybe not. But I would have known.

Not that it matters, since at that age it's about the kids anyhow.

~Jon