April 23, 2012

The Show Must Go On- “Raising Autism”

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , , , , , , , at 10:06 am by autismmommytherapist

I’m fidgeting, and as I stand in the wings with my actresses, preparing to take the stage for my autism play, I admonish myself to stop (using my own “teacher voice” no less). Gary Weitzen, Executive Director of POAC Autism Services, is wrapping up his introduction, and I’m anxious to be up there and get this show literally on the road. I take a few deep breaths, solicit the last remnants of saliva from their hiding places in my mouth, and attempt to clear my head.

I recall my “performance mantra”, which is SEL (“Slow down Jersey Girl/Emote, woman!/Look at people on occasion”), and feel my uncooperative stomach settle. I remember the trick I’m using to get through the play without bawling continuously, which is to conjure up clips with female comedians to my stressed-out brain. Melissa McCarthy during the bathroom scene in Bridesmaids easily comes to mind. Kristen Wiig holding a raw chicken on Saturday Night Live, and losing it, follows. An Amy Poehler and Tina Fey chaser in, well, anything, concludes my comedic quad.

Gary wraps up his speech, takes his seat, and I hear the strains of my brother’s music emanating from the sound board backstage. We reach the song’s first crescendo, I gently tap my friend in front of me, and we head for the stairs.

Ready or not, it’s showtime.

This past Saturday night, through the graciousness of POAC Autism Services,I had the great fortune to both act in and produce a play I wrote almost a year ago. It’s entitled “Raising Autism”, and its stories are shared through the medium of three mothers reading from faux diaries, laying their experiences with their children bare for the audience, and themselves. I came up with the idea last summer, and thinking that attempting fiction for the first time while entering middle-age might not be a realistic goal, I didn’t take it too seriously. I had a desire to create a fundraiser for POAC that could be easily replicated down the road, and an urge to divert a bit from my path of writing about my daily life with two boys on the autism spectrum, but truthfully, I didn’t really think I could do it. I’d wrench myself away from my pool every morning the boys were in summer school (the horror!) and write an entry or two, then leave it alone for a few days to write for my blog.

About six weeks into the summer I realized I had half a play, and my husband said it was pretty decent. Who knew.

Ten months, a lot of rewrites, (and a profound amount of begging for donated services later), we’re here, and I’m thrilled to say minus a few sound issues (there’s always something, it’s THEATER), the night went beautifully. My friend and mom of two on the spectrum Babette Zschiegner truly threw herself into her part, and got laughs in all the right places. My other friend and actress Bobbie Gallagher, also the mom to two with autism (I know, there’s a theme here) brought a raw emotion to a role I frankly am too chicken to play, and simply dominated the stage. Given the sniffles (and chuckles) I heard in the audience I think my slightly sarcastic college professor was well-received, even down to her anti-religious leanings and the difficulties of raising autistic twins with her partner back in the early nineties. Although I could only see a few legs from the front row (thank God for the black void of extinguished house lights), I’m told the audience was truly invested in the performance, and for that I am eternally grateful.

After all, I gave up a ton of tanning hours for this little production. It’s nice to reap some reward.

There’s one performance left this coming Saturday April 28th, at the Jersey Shore Arts Center in Ocean Grove, 8:00 PM. If you’re interested, you can purchase tickets off the POAC website www.poac.net, or pay in cash at the door (the theater seats 600, I promise you’ll get in). All proceeds go directly to POAC Autism Services. I promise, if you either have or teach a child on the autism spectrum you’ll find something in the play to relate to. If you don’t, I can guarantee you’ll learn something that evening.

And if you make it next weekend, on behalf of POAC and all the families it serves, and this mom/writer as well, we thank you from the bottom of our hearts.

April 4, 2012

“Traveling with your Autistic Child”

Posted in Fun Stuff, My Take on Autism tagged , , , , , , , , , at 9:21 am by autismmommytherapist

It’s been almost six years since the McCafferty clan took a family vacation together. This is in part due to the fact that more than half a decade ago we relocated from Washington, DC back to the Jersey shore, which when not obnoxiously crowded, is a vacation in and of itself. We also eschewed travel because within months of taking up residence in the Garden State, I found myself quite unexpectedly pregnant

For obvious reasons, the prospect of a trip with a young son with moderate autism, coupled with an infant, was terribly unappealing to both me and my spouse. Finally, just as we were beginning to consider leaving the house again our youngest son regressed, losing almost all of his speech and his spark in a matter of weeks.

Let’s just say at that time, travel wasn’t at the top of our priorities.

It’s been a few years now since those wretchedly grim days, and although Justin has chosen to enter a decidedly challenging phase, I’m beginning to feel I must heed the call of Disney. Zach will be almost six this fall, Justin is pushing nine, and I’m beginning to think we have a window in which to attempt this, and it’s starting to slowly close. Given that I’m pretty tired these days, I may not be pushing it open in the near future. It’s time to bite the bullet and give it a go.

So happy they still serve wine on planes.

We’re beginning to gather our resources for the trip, showing Justin ancient VCR tapes from his grown cousins that describe the myriad pleasures of the resort, and most importantly, have a “run-through” planned at a Philadelphia airport (I will write more after it takes place this month). Quite honestly I will discuss the possibility of sedatives for the plane ride (no, sadly, not for me), as there is not a chance in hell we’re all driving to and from Florida together.  If we can pull this off, I intend to fly there and back with the same amount of kids with which I started.

I know. Those extravagant dreams again.

There is one resource that will be an integral component of our trip, what I like to call my “travel-Bible”, a gem-packed list of travel tips for travel with a child on the autism spectrum. It’s called “Traveling with your Autistic Child” by Babette Zschiegner, and I will have this tome practically adhered to my body throughout our entire stay. Yes, in the interest of full disclosure, the author happens to be my friend, is in fact one of the actresses in my play, “Raising Autism”. It’s still a great book, and I anticipate it will be saving my sanity on at least several occasions as we attempt this adventure.

That, and of course, that glorious wine.

There are several wonderful features about her writing. First of all, she’s the mother of two children on the autism spectrum and she’s traveled extensively with both of her sons, so none of her ideas are mere conjecture. Second, she explains in great detail how she and her husband conquered each stumbling block to family fun along the way, generally suggesting more than one solution to each problem that arose. Last, she condenses all her fabulous tips into an easy-to-find guide at the end of the chapter, for those times (and in this household, there are many) where we need a condensed answer, and fast.

Quick is key around here.

The author has broken down her tips into eight easy-to-read chapters, and covers such topics as where to go, what to bring (I will be memorizing this list), and special diets. She even devotes a number of pages to handling a child who wanders, which is a particular concern to many families with children on the  spectrum. My personal favorites however, and the two that convinced me that we should give this travel gig a go, are the two centering on dealing with challenging moments, and sleep.

The latter segment being my personal fave.

In her chapter about handling challenging moments, she reminded me to always have a Plan B in place (sometimes C and D are helpful too), and to remember that there will frequently be difficult moments in life, moments which (hopefully) will eventually end. Perhaps my favorite reminder for “happy travel” came at the conclusion, where the author reminds us all that we can’t control what others think about our child’s behavior, and most importantly (and happily), we will probably never see those people again.

I employed that one a lot in Justin’s early days, and it’s one maxim that continues to ring completely true.

I don’t want to give too much away (no spoiler alerts here), but I recall as I read her work the first time I kept wondering if she’d answer all of my questions, and eventually, she did. Of course there are some strategies that won’t work for either of my children, as all of our offspring are so different. The vast majority will be incredibly helpful however, with some adaptations to be expected.

Trust me, on this trip, “Traveling with your Autistic Child” will remain in my carry-on.

If you’re considering travel with one or more children on the spectrum, I highly recommend Babette Zschiegner’s book. To purchase or read more about it, please see the link below:

http://www.lulu.com/

Best of luck to you, and happy travels!

January 3, 2012

Just Relax

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , at 10:24 am by autismmommytherapist

(Gratuitous photo of my boys.)

Ah, the silence.

There’s nothing quite like getting your kids off to school after a long vacation, then sitting down to write about said vacation (even if your husband is snoring gently in the background because your “office” is in your bedroom). I’m honestly not sure which of us was happiest this morning. It could have been Zach, all afire to tell his teacher about Coco Key, the water resort that is his new favorite place on earth. Maybe it was Justin, who literally took my hands and jumped up and down for joy at 6:00 AM when he saw his backpack lounging casually in the corner of our living room. Perhaps, instead, it was their very tired, but very relieved, mother.

Hell, who are we kidding. It was totally their mother.

Winter break is by far the most challenging of all the vacations we face around here, and even though Justin’s time home has been reduced to about four weeks a year (sending silent blessings right now to the institution of private education), ten consecutive days is a long time to fill. When my eldest looked at me with traces of utter disdain upon realizing I’d brought him to our local arcade for no less than the third trip in a week, I knew it was time for him to return to school. Our family made it through however, despite the fact that Justin’s ramped-up OCD behaviors made life particularly challenging (try shadowing your eight-year-old fourteen hours a day, and you’ll get my meaning), and the devastation of realizing that I ruined Zach’s life by buying him the wrong toy at our local aquarium.

Yet again, good times.

There were some really great (and really interesting) moments however, perhaps not ones to commemorate in my scrapbooks, but ones to remark upon just the same. I actually broke down and cried at our McCafferty family Christmas when both of my progeny decided to engage in particularly crappy behaviors during dinner at exactly the same time, making my sister-in-law respond in kind because she’s never seen me lose it before (yet recovering enough to remember to ask for a piece of cherry pie for the ride home). There was the moment in church where my four-year-old announced his extremely heartfelt “Merry Christmas!” to the entire congregation, a good three minutes after everyone else had committed to the holiday, and well into the minister’s sermon. The decision to leave a fairly agitated older child at home with his father resulted in my being able to sit like a grown-up for four hours at my best friend’s house, silently reveling in the fact that one of my children was in their basement with his cousins, unattended by a parent, and it was FINE. The latkes and brisket were excellent, but the uninterrupted conversation was fabulous.

And last, but not least, there was Coco Key.

My dear friend Babette, future author of a wonderful autism travel book called “Traveling with Your Autistic Child” that I’ll be writing about shortly, and founder of Peace with Autism, planned her eight-year-old son’s birthday party  about an hour away from our home on the Friday night of New Year’s Eve weekend. Typically, my first inclination upon receiving such an invitation would be “not a chance in hell”. First and foremost would be the fact that I’d have to find the resort in the dark at rush hour (and even with a fancy GPS, that’s not always a given). Then there’s the reality that Zach’s most impulsive time of day happens to be at the extended “witching hour”, and the possibility of my losing him in the water park was high. Of course, being forced to wear a bathing suit at the end of a month devoted exclusively to carb consumption really seemed almost too much to bear.

But then I reminded myself this was for my kid, and I should suck it up.

So, we went. Once I realized I could actually tell my child which color water slide to throw himself onto each time because he can talk, I ceased my pre-hyperventilating mode in a heartbeat, and sat back and just thrilled to Zach’s joy. I didn’t speak to a single adult (except the large lifeguard who put my son in time-out for running, which was perhaps the first time I’d seen my son intimidated by a grown-up), and it didn’t matter. I was calm. I didn’t worry about forgetting to shave my legs. I had fun.

In case, you’re not getting the full import of this, I was relaxed with one of my kids.

In general things have eased up around here over the last two years, but perhaps the last person to relinquish learned behaviors may be me. The truth is, I have two young children with autism, and things are always going to be somewhat difficult around here. Justin becomes particularly challenging after illnesses. Zach is literally testing us CONSTANTLY, and sometimes, he’s winning. It will never be easy.

But it’s better.

Usually my New Year’s resolutions are abandoned by January 5th  (or earlier), and include being nicer to my husband (it’s a goal), a repudiation of sugar (not going to happen), and a commitment to carving out more “me time”, which doesn’t occur either. So this year, I’m reducing my future achievements to just one simple word, one I haven’t really engaged in since my eldest was born. It won’t be easy, but I’m certain my elevated blood pressure will be appreciative.

This year, come hell or high water (or both), I’m going to relearn how to relax.