Saturday, December 31, 2011

Flirting with Normal (and having it look back)

Yeah, I know there's no such thing as normal. It's taken me a while to accept that. However, there is the expectation that things look and feel sort of average.

Honestly, I'm not all that familiar with average, either.

All I know is that nine years ago on a sky blue August day my expectations for anything resembling a 'normal' life went out the window with Nic's autism diagnosis. My own and Gabriel's dx'es in 2006 just compounded the fun. I became fluent in jargon to facilitate my understanding of systems. I attended the church of "Throw it against the wall and if it sticks/works, keep it; if not, toss it and move on."

I became a practitioner of 'real life immersion therapy'--that is, dragging both boys everywhere so that they learn what appropriate public behavior looks like. And as a consequence, I've grown a very thick skin. Still, I grit my teeth and moved on, determined that my kids would succeed, and they would receive direct instruction from me on how to do it.

So where are we today? My middle schooler has a peer who dreams about him (and tells him about it). My second grader happily marches to his own tune, has friends, and has even become next month's shining star at his school's after care program. They are both in their home schools, working hard, making friends, and having fun. And they are doing a lot of the same things other kids their ages are doing.

They're happy and healthy kids who also like themselves.

Going out of 2011, I couldn't be happier or more grateful that their hard work is starting to pay off.

And I couldn't be happier that my vision for success for them both is now shared--in a big way--by so many people.

As ever, I am thankful for all the people who believe in them, but more importantly, expect them to toe the same lines other kids toe.

Truly, it is making all the difference. Although we are no where near finished, it's nice to look back at this juncture and see that we are already much, much farther than I expected we'd ever go.....

Tuesday, December 27, 2011

Love and Other Stuff that Keeps Us Going

Right now, the boys and I are reveling in the fact that we don't have to be anywhere.

Yeah, there are things to do and places to go. I've already gone out and taken care of a few things that needed doing. Nic would like to go for a train ride into town. But my little one is still in his pajamas--he's voting with his clothes.

Do I blame him? Not really. We went from packed schedule to packed holidays, culminating in a trip to NYC yesterday--which would have been fine if every family from Baltimore to Boston didn't have the same damned idea.

I think yesterday in Times Square has cured Nic of wanting to be there for New Year's Eve.

Hubby was originally quite bitter about us not spending an overnight there, but I had thought (and stuck to my guns) that a day would be more than enough for these two. And by the time 8 pm rolled around, they were more than ready to collect the van and head out.

(Yay, mom)

Some good things happening in real life--not the least of which was a girl stopping Nic in the hall to tell him that she had a dream about him. He told me about it while I was cooking dinner late last week. Which is cooler, that she had the dream or she told him about it? And what's cooler, her telling him about it, or him telling me about it?

And another real life moment: modeling a gift hubby gave to me, and his very real, very unscripted reaction, his eyes goggling followed by a wonderful smile. It matters not that we've been together nearly two and a half decades, he's still in love, and I love that guy in love. It's all good.

MIL lands later this week, so I'd better get this place cleaned up.

Friday, December 23, 2011

Scenes from a Life

When establishing life's priorities, distractions abound. The phone rings, the Blackberry blinks, Outlook pops up in a corner of the laptop screen, some one sticks his or her head in your office. Sometimes the distraction is an absence; some one who failed to show up or do something or whatever--because those absences are also a source of all the preceding stuff.

I've discovered something new about myself in all this. That I am, in fact, capable of diving into those crevices of quiet and staying there as long as I need to. The means vary, but the end is the same; I do the needful and manage to let the execution of what I need to do stay where it's needed.

I've had a lot shake up my world this week, but the fact that I'm unshaken is something of a revelation. But how do I explain?

Spending time with my younger boy at his class holiday party today opened my eyes to a whole new experience. My years as Nic's room mom were hard. It was hard being in that room, whatever that room was, and seeing how different, how much the outlier, my son was. In a way, that was my distraction.

In G's room, even though, yeah, he's different, he's as much a part of his class as his brother probably was. But he's also a different kid. And watching him, in all his quiet glowing glory, was a pleasure. He cuddled up with me while his teacher read a couple stories at the end of the party. Then he hugged me goodbye and let me go about my business of finishing holiday shopping.

Nic would have balked. Nic has balked. But that's okay, because that's who he is.

I get that, now.

So, speaking of who he is, I sat at a stop light after my shopping trip, and who did I see but my big guy, walking up the hill in search of an elevator adventure. I looked down, thinking he didn't see me. I look up again, and there he is, waving wildly at me and jumping up and down, the biggest, most radiant smile on his face.

His joy at our unexpected encounter choked me up. I smiled and waved at him. He gestured that he was taking a walk and trying to get into the elevators up the hill, and then gave me a big thumbs up. He kept turning around and waving as I drove away.

Suddenly, I was seeing Nic as he was at 18 months or so, on the campus of UDMNJ. It was a sunny late summer afternoon, and he was wearing a red and blue rugby jumper, and a big smile, his curly blond hair waving in the breeze, his big blue eyes sparkling. He was chasing a butterfly, and he turned around every few steps, waving, and would turn and run on......

And so my tween waves and walks on, and turns and waves again. And walks on.

Saturday, December 17, 2011


I'm still waiting for my head to stop spinning from the past week. This morning's run slowed it somewhat, but things continue to rotate a little faster than I'd like.

It all started with a phone call that initiated me into a new sort of elite (if you want to call it that) last Thursday. Meetings ensued. No threats were uttered, only the promise that it wouldn't happen again.

All well and good. But then I attend a training (ironically from the Archdiocesan arm of the agency who contacted me) wherein the trainer stated (and I quote): "in the case of developmental disabilities, you have to wonder which came first, the disability or the abuse."

Yeah. That resulted in a letter from me. I heard from the person who developed the training, but not the trainer. Kind of don't think I am going to hear from that person. Like, ever.

If these were the only things that happened in a week, that would be enough. But then, I also had to break up with G's music teacher (yeah, that's what it turned into--turned out fine, but I could have dispensed with the drama), G getting back on the big bus and coping with all the behaviors that move has generated (and thus thinking about moving within the school district so that the bus and bus stop ceases to be an issue--also, I think hubby would like to just dump the house and run anyway, and this is as good an excuse as any), and trying to repair relationships with the people who were responsible for the phone call in the first place.

Ripped pants may have gone a long way to helping mend some souls.

And so I find myself fixing other things, too. G's pack meeting on Wednesday went phenomenally well, thanks to hubby's contributions and the vision of our fearless leader. The kids had a blast and the adults were pleased at this.

I find myself thinking this morning of the word 'mishpoche,' which is Yiddish for family--particularly extended family (for those who don't know Yiddish). My friends to me are really not so much friends as family--and I don't use the word 'friends' lightly, either. These are people for whom I would move heaven and earth without a second's hesitation, and they would do--and have done--the same for me. I am fortunate enough to work with some of these people at my day job, and with the scouts, and with the parish and the kids who cross my path. I can't believe how fortunate I am to have so many amazing people in my life.

My mishpoches have gotten me through so much this week. Not surprising really, since they laugh with me as much as they do get irate on my behalf and help me figure out my next steps when things go wrong. I really am surrounded by love and support, always. I know it, and I appreciate it and thank God for it every day.

My mishpoches rock.

Saturday, December 10, 2011

Re-imagining what's possible

I called my mom this morning and handed the phone to my older boy, who had an apology to make.

I held the phone for him because I thought it would be a brief exchange. After all, Nic's not all that conversational, at least on the phone.

That's what I thought, anyway. Two minutes later, I'm still standing there holding the phone to his ear. Hubby passes by, shakes his head, puts Nic's hand to the phone, takes mine away, and Nic chatted on with Grandmom for another 3 minutes.

I lost count of how many volleys after 10. The kid's conversational.

Last night, we stopped off at Dave & Buster's to celebrate the end of the week. What I thought would be a 10-minute stop stretched into an hour; Nic met a boy named Kevin, and the two of them hung out together, I guess while his folks were upstairs eating. Foolishly, I didn't get his info, and he didn't get ours. But still, Nic and Kevin more than interacted--they had a great time. Without anyone facilitating it.

At our team meeting last week, Nic got high marks for flexibility. It only took 3 months, but he's settled in.

Are we perfect? Hell, no. We have no shortage of moments I'd rather forget. By the same token, I am awed and amazed that bit by bit, he really is beginning to look like everyone else.