April 30, 2012
Stage Left
We wrapped up our first run of “Raising Autism” this weekend, and I truly have mixed emotions of both exhilaration and relief as I sit here typing this morning. It was an amazing experience, a good portion of which occurred in tandem with a brutally difficult period with our eldest child. My feelings about both are permanently intertwined with one another, with the outcome being extreme appreciation that Justin has mostly returned to his old self, and gratitude that both shows, in my opinion, went extremely well.
Just in case you’re wondering, there will be no self-inflated post-play ego occurring here. Mere hours before our last performance, both of my progeny were enmeshed in such extravagant tantrums I wasn’t certain their parents would make it out alive. This Sunday morning, after the concluding show and a much-needed celebratory glass of wine, I was awoken by an energetic and enthusiastic child at 6:03 AM (yes, I noted the time), and literally dragged out of bed by his tenacious desire to eat toast. Autism, and children in general, have a way of keeping one humble.
So much for the glamorous life of an actress.
I promise this will be my last post about the play (at least for a while). I can’t thank everyone who came out to support POAC Autism Services enough. I also appreciate the support shown for the three women who shared so many of our community’s stories on stage. I’ve already listed all the “players” in my last Gratitude Attitude. I would be remiss however if I didn’t say one final huge thank-you to Bobbie Gallagher and Babette Zschiegner, my actresses extraordinaire, both of whom brought such humor and heartfelt emotion to my script that it was simply a joy to listen to them on stage.
A special thanks to Mary and Scott Craig, my understudy and “sound man” respectively, as well as to Herb Herbst, Brendan Kelly, Colleen Earp and Abi Gardner, all of whom were instrumental in pulling off this gig in a real theater. Thanks as well to POAC Autism Services for helping to underwrite this endeavor, to all of my volunteers, and to everyone who kept me calm throughout the process of literally taking this show on the road.
Trust me, that was no small endeavor.
I’ve mentioned this before, but I hope this isn’t the “end of the road” so to speak for “Raising Autism”. I am hopeful a few specific autism organizations will take my freely offered script and bring this piece to life again, and am keeping fingers crossed that several theaters in the area will take the play on as a philanthropic production. Both dreams are a longshot, but frankly so was writing a play in the first place, so I figure I’ll go for it.
I also plan on eventually offering “Raising Autism” to any legitimate autism agency anywhere that wants to use it as a fundraiser, and hopefully, some will. As I’ve mentioned before, it’s a very basic production. If you’ve got three chairs and three literate women, you’ve basically got the play down cold. Trust me, I knew enough to create a vehicle where I had the luxury of sitting the entire time, one which required no memorization, dialogue, or movement other than breathing.
I’m middle-aged. I know my strengths.
I’ll see what the universe has in store for me down the road. But if nothing else, we raised a nice little chunk of money for POAC Autism Services, a wonderful autism organization that has truly changed the lives of so many families residing in the Garden State. As a bonus note, I also got out of the house AND had the privilege of acting for four hours, an entirely new experience for this current housewife.
In the last venue we even had our own dressing rooms. Maybe there’s a bit of glamour here after all.
But perhaps most importantly, I had the great fortune to be told directly that my writing touched the audience. I had a lovely “review” from a family experiencing a similar difficult period with their own autistic child, one who shared with me that after hearing my words, for the first time in a long time, they didn’t feel so alone.
And truly, that was the point of doing all this in the first place.
Thanks again to everyone who played a part in bringing “Raising Autism” to two wonderful audiences!
April 25, 2012
No Fear of Flying
It’s 2:00 AM, and through moonlit shadows I see my son standing next to his bed in my mother’s guest room, searching for me in mute appeal. I slide off the window seat that doubles as a sleeping receptacle and walk towards him, with the intent both to comfort him, and to beg him to return to slumber. We do this dance for the next forty-five minutes or so, until sheer exhaustion overtakes him and he clambers back under the sheets, and lets me wrap him cocoon-like in his airplane sleeping bag once more. I slide back into my borrowed bed, knowing sleep may be an elusive fantasy not again realized until many, many hours from now. I resign myself to consciousness, and hope that the airplanes on Justin’s sleeping bag are not the only ones he comes in close contact with in the next twelve hours.
In theory, if we’re very, very lucky, for the first time ever my boy will step foot inside a plane.
My family is hoping to fly to Disney this fall, and I knew that if we had a chance in hell of getting my almost nine-year-old son who has moderate-to-severe autism in the air, we’d better have a practice run. Luckily, my mom had heard that US Air was running a free program with Autism Inclusion Resources out of Philadelphia Airport, one which caters to families with autistic children. The event takes families through every aspect of the travel experience, from checking baggage and security checks, to boarding the plane and baggage claim. Months ago we were able to secure a spot for their spring event (they generally hold it once in the spring, and once in the fall), and at the time I was quite eager to see how Justin held up, and was fairly confident he’d love every aspect of it.
Unfortunately in November he became ill with a garden-variety virus, one that when it released him left behind some unwanted extras. We saw the return of aggressive tendencies which had lain dormant for years, body tics which shook him from head to toe, and a vacant expression that often claimed his countenance for hours at a time. His teachers and home therapists were concerned as well, and after it became apparent these unwelcome afflictions weren’t going to disappear any time soon, we sought help. Four months, three specialists, a debacle of a medicine change, and half a dozen tests later, we were back at square one. We put him on the original medicine that had seemed to improve his life so much, and upped it a bit. Within a few days we saw some improvement.
And as I contemplate that progress on my cushy window seat in the wee hours of the morn, I remind myself we’ve only been dwelling in that more peaceful oasis for a week. Nothing with autism (or life in general), is ever guaranteed.
Eventually strong sunlight banishes the moonbeams from view, and after having caught another hour or two of rest I see my son stretching from across the room, a glorious smile on his face. It’s a good start, and his ebullient mood carries him through breakfast and that semi-harrowing rush hour traffic to Philadelphia International. Thankfully we’ve been well-prepped by Autism Inclusion Resources, the non-profit sponsoring the morning.
I’ve had a phone interview with one of the founders, Becky Jacket, which helped me both envision how the day would unfold, and imparted valuable information to the group as to how to make the day more positive for Justin as well. We’ve been sent a social story, family travel tips (since I fly these days about as frequently as I win the lottery, these were particularly valuable), and a detailed itinerary as to what to expect from the experience. We are as prepared as humanly possible.
But sometimes with Justin, that doesn’t count for much.
I’m questioning my decision to even attempt this excursion about five minutes in, when my son is almost pulling my arm out of my socket in front of baggage check, imploring me to quit this place and return to grandma’s car. I whip pepperoni out of my purse and parcel round slices one by one into his outstretched hand, making him mouth the word “more” after he’s consumed his morsel, hoping it will buy us some time.
It’s his latest favorite snack, and I’m conferring magical properties upon it at the moment, because we’ve made it this far, and it’s suddenly apparent to me how much I want this to work for him. I know, it’s just a family vacation. There are so many families struggling just to pay for services for their autistic kids, and we’re contemplating the Magic Kingdom. I completely comprehend how lucky we are to be in this place.
But honestly, the last four months have been hell. I’m ready for something, anything, just to be simple. And for once, it is.
Cold cuts seem to do the trick for my boy, and he waits patiently as Rick Dempsey, ADA coordinator for Philadelphia Airport, lays out the impending steps for the waiting families and children. There are only a few participants today, one with a child who is similarly affected, and several who are very mild in comparison. Miraculously all of them, including mine, make it through his welcome speech, which is great practice for the multiple waiting periods which occur at any airport. Justin stands calmly next to us as we pretend to check our luggage and acquire our boarding passes (families can actually check their bags, we chose not to), and happily takes my hand as we venture on to security.
This is where I anticipate the most problems for my boy. And once again, he simply blows me away with his compliance.
We sail through the checkpoint, Justin standing calmly at our sides as we reclaim shoes, his iPad, and multiple electronic devices devised to keep him entertained on our journey. I have a bonding moment with an airport volunteer who praises Justin for his behavior, and shares his own story of his son’s autism. I feel my heart-rate slow a bit, my pulse begin to settle for the first time since that middle-of–the-night awakening. My boy waits patiently for the entire group to finish, and eagerly walks beside me to the boarding area, where once again he is required to wait for approximately twenty minutes.
Generally, Justin wants to leave even the most reinforcing destinations after twenty minutes. The fact that we’re still here, pepperoni not withstanding, is a miracle.
Finally, we’re called to board the plane (destination Philadelphia), and my son revels in it all. He wears his seatbelt the entire “trip”. He excitedly consumes the pretzels the kind airline attendants offer to him. Justin and I even take a jaunt to the bathroom when the line clears a bit, and I discover he’s an old pro at navigating that slim space with his mom. I even have the opportunity to thank some staff and tell them how much this opportunity means to us, how grateful we are that they’ve volunteered their time.
They share with me that they feel the same. I am inordinately proud I manage not to bawl all over them in the back of an airplane. Eventually we “land”, and make our way to baggage claim. I walk my son around the corner from my mom and ask her to heave our suitcases onto the carousel, and I show Justin how we relocate our luggage (of course, that is when his mother recognizes it). Our leader thanks us for coming, when it should be us thanking him and AIR.
Every single participant involved, from the volunteers at Autism Inclusion Resources and participants from the Department of Transportation in Washington, DC, to the employee/volunteers from Philadelphia International Airport to the United Airlines crew and the pilot in particular (who flew in on his day off to help), have been wonderful. None of them could have been more professional, or more prepared. Our family is forever indebted.
Finally, the experience concludes. But the ramifications for Justin, the doors this day has thrown wide for him for future opportunities to travel, are just beginning to open. From the McCafferty family, to all those who participated in the making of this day, we thank you from the bottom of our hearts.
Look out Disney. Here we come.
To learn more about the program, check out the Philadelphia International Airport website at: http://www.phl.org/ada.html/, and scroll down to the section entitled “Airport Autism Accessibility Program”
Email address for the AAAP: accessibility@phl.org
Email contact for Autism Inclusion Resources (Wendy Ross) wendyrossmd@gmail.com
Email contact for TSA(Technical Services Representative) at PIA (Lisa Bailey) lisa.bailey@phl.org
April 23, 2012
The Show Must Go On- “Raising Autism”
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.
Gratitude Attitude
Today, I just want to extend my gratitude to everyone who came out Saturday night to support both my play “Raising Autism”, and POAC Autism Services as well. POAC is one of the largest service providers for autism in the Garden State, and an organization consisting of some of the most determined and dedicated parents I’ve ever encountered. Special kudos go to Scott Craig, for working with the antiquated sound system of a high school auditorium, and bringing our words to life. Thanks to Abi Gardner and Colleen Earp for “giving us light”, and more importantly, talking me down from the ledge of “everything that can go wrong”. Major appreciation goes to Brick Township High School’s drama teacher Paul Bibelheimer, for setting up the stage and summoning the patience to explain “audio feed” to an ex-elementary school teacher. Thank-you to Duke Clement, our fabulous videographer who donated his professional services as a favor to a friend.
My appreciation goes to the Brick Township Board of Education both for approving and donating the space (thank you!), and to principal Dennis Filippone for hosting us. Major thanks to our “crew”, Tom, Sean and Al, who managed to make a high school stage look semi-professional. I thank Kerri Licini, Maureen Martino, and Kristin Maurer for handling the door, and for the kind words prior to our performance. Much love to my brother Erik Rutan for providing his lyrical notes, and some much-needed support. My respect and gratitude to all of POAC Autism Services, particularly Gary Weitzen and Simone Tellini, for their help, time and patience as I went over the details “just one more time”.
My most heartfelt appreciation to all of my actresses, Babette Zschiegner, Bobbie Gallagher, and Mary Craig. From figuring out the logistics of how to attend rehearsals, to pouring out everything you have onto that stage, I am so grateful. I literally (!) couldn’t have done it without you!
Finally, my love and appreciation to my husband Jeff, the “real theater guy”, and my boys, Justin and Zachary. Thanks for your love (and patience!).
April 16, 2012
Easter Blessings
“Mom, is it okay if I run?” my youngest asks me innocently, even though he’s just heard our SEPTA president (Special Education PTA) tell all the kids not to barrel through each other during the Easter Egg Hunt. I ask him to repeat what she just said, and he looks at me and responds dejectedly, “no running”. He then proceeds to strike a perfect runner’s pose, teetering on an imaginary line keeping him from conquering hundreds of half-hidden, brightly-colored ovals.
I fear this will be a losing battle.
Sure enough, on the count of “three” over a hundred special needs kids, their siblings, and my son make a break for their treasure, skirting every copse of trees in this sparsely- populated wooded area that is hosting the event. We’ve been asked to limit our take to twenty, and as me and my sister-in-law trail behind Zach I ask him to count his pile, which he dutifully does. When we reach the magic number I gently remind him we’re done, and for once there are no “but Mom!” protests. We head back toward our point of origin, a parcel of land now hosting the Easter Bunny, which of course makes me eager for a photo opportunity. I ask Zach if he’ll pose with him, and he smiles shyly and says “yes”, for which my scrapbook is eternally grateful.
I have my priorities.
I treat Easter as I do my birthday, which means it is a holiday meriting multiple celebrations. Next weekend there will be two more such excursions, one taking place in my own backyard, and one in my mother’s (they are guaranteed a good crop at either venue). If we’re feeling brave Jeff and I will attempt to take the boys on the Easter train at Allaire State Park, an activity which will require patience on Justin’s part, so we’ll play it by ear. Of course the grand denouement will involve elaborate Easter baskets which I love to create, particularly given the fact I’m not sure how much longer Zach will think this is cool.
Given his newfound burst of maturity, our days with this activity might be limited.
Zach bounds back over to me after I’ve clicked a half-dozen shots just in case, and asks if he can play on the equipment. I nod yes after checking my watch, then call after him to remind my son not to bowl over several toddlers standing between him and a soggy slide a few hundred yards away. We have a little bit of time left before we return home and relieve Justin’s home therapist from her duties, and I smile, because this outing, unlike last year, has been a resounding success.
A little over a year ago Jeff and I split up with the boys on a frigid Saturday, my husband taking Zach to an Elks Easter party, and me escorting Justin to this very spot. He had seemed excited when I lead him to the car with basket in tow, making his energetic “eee” sounds all the way to the park. I’ve learned how to time things so he’s there neither too early nor too late, and last year we made it with five minutes to spare. After freeing him from the car I grabbed his hand and inserted a pastel-colored handle into it, and we made our way over to the starting point.
I had enough time to greet the SEPTA Executive Board before Justin was off like a shot toward the water, pumping arms and legs steadily to reach the pier, often a coveted destination. I remember my friends calls to him were echoing mine, even as I knew it was a losing battle. Once Justin makes up his mind that something else is more rewarding for him, there’s no reversing that decision.
Can’t imagine from where he acquired that amount of stubbornness.
I recall feeling a fleeting stab of disappointment as I trailed after him, felt sad he wouldn’t be participating in such a lovely and meticulously planned event, sorry for me that I would neither get to witness it nor record it for posterity. Then, with our feet sunk in sand as we trudged our way toward brackish water, it hit me. He’s almost eight years old. Even if he didn’t have autism, he might not want to score pastel-colored cylinders. He’s perfectly thrilled to do his usual routine here.
Nobody’s sad but me.
I felt a weight lift off of me then, a void where guilt sometimes resides when I don’t attempt certain activities with him, even though I know in my mother’s soul that just because Justin “should” like them doesn’t mean he will. We continued our trajectory out onto the dock, my eldest running back and forth, entranced with the ripple of waves on river. He was perfectly content with our adapted activity.
As my youngest son is before me, right now.
I snap back into the moment, as I’m trying to do more often, and know that both boys are safe. Both of my sons are happy. Both children are living in their respective moments, one at home with his therapist, one outside and immersed in play. The two of them are exactly where they’re supposed to be.
And for once, so am I.
April 11, 2012
POAC Autism Services Walk-a-thon 2012
Yup. It’s that time of year again where I hit up people for money.
I know. I’m already asking people to come to my play to support POAC Autism Services, and really, I should just shut up now. The truth is however, while I hope my little artistic endeavor generates a veritable boatload of money for my favorite autism organization, there are a number of fundraising walk-a-thons coming up which traditionally provide the lion’s share of their income. Since POAC receives absolutely no state or federal grants, they rely predominantly on this handful of events so that they can continue to offer training, services, and recreational events at little or no cost to the autism community.
And even if you have no connection to anyone with a child with autism, it’s still a great way to exercise.
Due to the fact that I’m producing, directing and acting in a play I wrote just weeks before our local event (yup, insert second shameless plug here) I will not be putting together my own team this year. My lack of initiative to form one is also due to the fact that since we moved back to New Jersey, pretty much everyone we know has their own child with autism, and will be walking for him or her on their own team.
So this year I’m glomming onto the team of my friends Mary and Scott Craig, both of whom work tirelessly to support the efforts of POAC. Mary serves on the POAC Board, and both husband and wife spend tremendous amounts of time helping to put together fundraisers to keep the organization going. It’s an honor to walk with them, and for their son Will.
Plus, I just like them.
So, if you’re looking to make a donation to a fantastic organization, or wish to honor a child or family dealing with autism, please see the link below to my walk-a-thon web page. I’ll be participating in the Lakewood BlueClaws event on May 5th with Zach and my friend Cindy, who has also generously offered her time this year. And if contributing is not an option, please consider coming out to any of the five walks listed on the POAC website, and simply show your support.
Trust me, autism on any level is not an easy road. We’d really appreciate it.
I’ll get off my soapbox now, and go feed my hungry kids. Before I go I’d like to share one final thought- that POAC Autism Services has had a direct and profound influence on my children’s education, leisure time, and their happiness. They have done the same for numerous families throughout New Jersey as well. I am truly grateful for their existence, and for all the services they provide.
And for anyone who makes a contribution of any kind, I’d like to extend my heartfelt thanks and gratitude
April 8, 2012
“Raising Autism”- a POAC Autism Services Fundraiser
Last week some staggering statistics were made public in a report from the Centers for Disease Control and Prevention (CDC), a report that discussed findings regarding the prevalence of autism in fourteen states, as well as nationally. The national reports showed an increase in autism diagnosis of 78% when comparing a 2012 study to one conducted just five years before in 2007, a fact which is overwhelming in and of itself. What concerned me even more however, were the statistics for the Garden State.
According to the data, one in forty-nine children are affected in New Jersey.
For girls, one in one hundred and seventy-two are on the spectrum.
For boys, it’s one in twenty-nine.
Yes, I said one in twenty-nine.
There are a myriad of debates raging in the autism community, ranging from such topics as causes and treatments, to whether or not this increase is real, or just a result of pediatricians having access to better diagnostic tools. It may take decades to solve the more complicated puzzles. Some questions regarding the disorder may never be solved at all. But to me, one issue is perfectly clear.
All of us who love someone with an autism spectrum disorder have to do our part to help if we can.
There are hundreds of autism organizations now in existence, all of which contribute to the community at large, many with their own special niche. One that happens to be in our backyard, and has made an indelible difference in the lives of teachers, law enforcement officers, and so many Garden State families (including my own), is POAC Autism Services. POAC is located in Brick, but offers free trainings and workshops all over the state, educating those who love and/or work with individuals with autism on how best to serve them. They’re a phenomenal organization headed up by Gary Weitzen, Executive Director, and for over a decade have been responsible for improving the lives of many children and adults with autism.
Two of those lives include my own kids.
In a few weeks I will be producing my play, “Raising Autism”, which will act as a fundraiser for this wonderful agency (yes, this is a shameless plug to get my readers to buy tickets, but they’re only $10, it’s a cheap evening out). For the past few months I’ve been harassing relatives and friends, and come close to approaching strangers on the street (I’ve stopped short of that) in order to get a good turn-out. I’m hoping we are able to raise a couple of thousand dollars for POAC, enough to facilitate a few more trainings. I also hope there’s some money left over to create those all-important weekend activities for families, activities which function as a safe haven for our kids, a place where they can be who they are with beautiful abandon.
Those events are a haven where their parents can feel free to be who they are as well.
The play chronicles the lives of three very different women raising four children with autism between them, kids who fall on every part of the spectrum themselves. At times (at least I’m told), it’s a humorous look at some very difficult situations. I’ve also been told (with sodden tissues as evidence) that it will break your heart a bit, because it’s an honest look at the challenges many of us face with our children on a daily basis.
In other words, in “Raising Autism”, I say it like it is.
While I hope the play brings in a lovely chunk of money for POAC, I also hope it delivers more than just a nice bundle of funding for their endeavors. Of course I also wish it will act as a vehicle through which awareness is raised, which to me is just as important as soliciting donations. Last, I have one final wish for the play as well. To all of those attending, I hope hearing these women’s words will be both cathartic, and serve as validation for our children’s struggles, as well as our own.
It was definitely cathartic for the woman who wrote it.
“Raising Autism” debuts April 21st at Brick Township High School, and on April 28th at the Jersey Shore Arts Center. For more information please see POAC’s website at: www.poac.net
Thank you for reading this, and hope to see you there!
April 4, 2012
“Traveling with your Autistic Child”
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:
Best of luck to you, and happy travels!
April 1, 2012
Autism Awareness Month
“Mommy, can you have a little autism?” my youngest son asks, all while sitting at our kitchen table twirling a giant plastic T-Rex around by its tail, a toy I am certain will soon end up landing on my face. I think quickly about how I want to respond to this, and I say “Sure honey, some people with autism can talk just like you do”, because the issue Zach keeps coming back to over and over is ‘will Justin ever talk’. Apparently this satisfies my boy, because he forgets I’ve just asked him not to fling that huge, disturbingly life-like creature in my general direction. This time, however, the outcome for his “pet” is not so wonderful.
Clearly, just like in the Jurassic Period, tyrannosaurus rex still can’t fly.
After I’ve rescued his friend from the floor (and applied no less than two Elmo band-aids to his “wounds”), Zach gets down from his seat, and decides to build a fort for his dinosaur family in the living room. I begin washing up the detritus of ham and gluten-free/dairy-free oreos, and as so often happens, my mind begins to wander (so far, it’s always returned). As soapy suds wash away the evidence of a meal consumed, I think about how far Zach has come in his own understanding of autism.
Initially, our inquiries as to what he thought about it were met with complete silence. Now, he talks about it all the time, from discussing Justin’s actions with replaying the same scene over and over on his DVD (“that’s the autism, mom”), to the fact that he said “thank you” to Zachary the other day on his iPad (“Justin DOES talk!”). My boy is truly aware of autism in his smaller world, and within the larger confines of the world around us.
And as I look around, at least within the community in which we live, everybody else seems to be aware as well.
I have to say however that most of what I see around us transcends awareness, has in fact moved past even simple “tolerance”, has even begun to dabble in the waters of true acceptance. I see evidence of this evolution at the movie theater, where a mom with six young girls in tow graciously let me jump ahead of her in the popcorn line, because she could see how anxious Justin was for his carb fix. I witness this acceptance in the children of my neighbors, all of whom always emit a warm greeting for my eldest son, and some of whom continue to ask if he’d like to shoot a basket with them (Justin will eternally decline).
I’ve had a broad view of our little corner of the world’s take on autism as I’ve handed out fliers for my play, with every single store-owner registering only kindness as I’ve described my family, and explained my desire to support POAC Autism Services with my writing. Most importantly, I’ve registered this acceptance of Justin’s differences by his neurotypical peers, during our trips to stores, bowling alleys (he’s quite good now), and of course, his perennial favorite, our local boardwalk. I will admit, sometimes his loud vocalizations and somewhat staggered gait are met with averted eyes. More often than not however, he receives a genuine smile, one which usually is shared with me as well. Sometimes, I even get a heartfelt teen-age comment of “he’s so cute!”.
Which of course, he is.
I feel the world has evolved so much since the dark days of Justin’s diagnosis almost eight years ago, yet of course, we have new roads to forge, more prejudices to destroy. What I continue to see however, the critical point that stirs up so much hope for me, is the constant commitment by those in the autism community to put aside our differences, and instead do our part in raising awareness about our incredible kids. From requests on Facebook to look past our conflicts, to illuminating our homes in blue for the fifth World Autism Awareness Day on April 2nd, to fighting and demanding legislation be put through for the next generation, I see everyone doing their part. And I watch gratefully as our community conducts these actions in far more harmony than I’ve ever witnessed before.
Finally, most importantly perhaps, I see so many people not directly touched by autism trying to lift our lives just a little bit, and do their part by displaying compassion, not condescension.
April is Autism Awareness Month. My husband and I will be turning our porchlight blue, in honor of the commemorated day, the month, and of course, our beautiful and unique children. Acquiring a light bulb sporting a filament that will bathe our home in blue is an easy act, a quick trip to Walmart or Target, a simple twist of a wrist to install. If you’d like to show your support, it’s a wonderful way to let our community know that you care.
And of course, where my kids are concerned, I’ll always gladly accept those smiles too.
As always, thank you for your support!
