May 29, 2012
Camps/Resources for Children with Autism
It’s almost summertime, a season which conjures up for me a childhood including vast swatches of unfettered time, staying out late, and one or two bad sunburns which I would always deeply regret attaining. Summer was clearly my unabashed favorite, filled with months of limited responsibilities, freedom, and the luxury of sleeping in without the clarion call of an alarm clock reminding me I had a bus to catch.
Clearly, all of this transpired before I had children.
While summer is still my “Cinderella at the ball”, I now have two little kids to care for during the course of its eleven week stay, and with my particular children, those long days can be challenging. While my boys are wonderful (I have to do a bit of mom bragging here), their particular brand of autism includes a great deal of impulsivity, which has made it difficult for me or any other adult to take them out of the house simultaneously.
My goal (at least for a few more years) is never to have to make the “Sophie’s Choice” of deciding whether to address my eldest’s son’s strong desire to leave a venue in under an hour, or choose to rein in my youngest from whatever event or fun-looking toy might be within his reach. I plan on putting two healthy, and hopefully exhausted, little boys to bed every single night of their childhoods.
I still have goals.
My eldest son is fortunate enough to have an eight-week stretch of summer school included in his IEP, and I know how incredibly lucky that makes both me as a parent, and him as a student. Those extra two months of academics and behavioral routines truly help prevent him from regressing during those hot months, a fact for which I am very grateful. While his program does span most of the summer, we always end up having two or three weeks to fill.
Given that Justin generally doesn’t like to remain anywhere longer than the amount of time it takes to watch a sit-com without commercials, filling that void for him has been a challenge. I’ve found over trial and error that he actually prefers to attend a summer camp rather than hang out with his mother all day (he is nine after all). I’ve been fortunate in that I’ve not only found a few that fit his needs, I’ve also located several resources that have assisted us not only in locating those programs, but have provided a stipend as well.
Trust me, many camps for autistic children don’t come cheap.
I can unequivocally recommend two camps in particular, one designed for neurotypical children but who also accepted my boys as participants, and one created to specifically cater to children with disabilities. The first is Olde Riverside School and Day Camp, located on Herbertsville Road in Brick, NJ. Both of my children have attended this program with their “shadows” (helpers our family has paid to accompany them), and had a wonderful experience.
Olde Riverside’s program harkens back to a simpler time- there aren’t any frills to speak of, just good old-fashioned fun. One of the biggest perks of this camp is their swimming program, complete with certified lifeguard/instructors who teach the children their strokes and water safety on a daily basis. Zachary, my youngest, made great strides in their pool (he liked to make the pretty lifeguards proud of him), and I truly saw his confidence as a swimmer grow by leaps and bounds.
While not a huge fan of the swimming program, my eldest child did enter the water every day and enjoyed the routine of camp, where the activities ranged from crafts to read-aloud, and games that changed about every half-hour. Due to his autism diagnosis he was also required to attend with his shadow, and for five summers he truly enjoyed being a camper.
My boy doesn’t like a lot of things, so this is truly a compliment to the staff.
The second camp I can wholeheartedly recommend is Camp Bridge, located in Wall Township on Herbertsville Road, and housed at the Camp Zehnder YMCA. Camp Bridge is specifically geared toward children with disabilities, and has successfully entertained kids with ADHD and ASD (autism spectrum disorders) for many summers. The camp runs from 8:30 to 3:00 which is convenient to parents, and includes a multitude of different activities to draw in the children. Since it’s located at Camp Zehnder Justin also had access to their pool, a welcome diversion for him during those hot days.
The camp’s owners, Bethanie Raichle (a Board Certified Behavior Analyst who works for several local school districts in Monmouth and Ocean counties), and Cyndee Policastro-Smith (a teacher for Toms River School’s autism program) provide a number of activities for the campers. These range from “morning circle” (which helps maintain the school routine) to arts and crafts, plus one field trip per week.
Another bonus is that I felt Justin required a one-on-one aide to participate, and Camp Bridge was able to supply that individual for me, with an extra fee. My eldest has attended the camp for two summers, and will be happily returning this year for a third. Bethanie and Cyndee truly “get” children with autism, and I always felt as if I was leaving Justin in safe and competent hands.
Of course, camps cost money (what doesn’t), and to that end I have found the DDD (Division of Developmental Disabilities) to be a great resource. A month or two after we relocated to New Jersey when Justin was two I applied to this organization for respite care, and eventually I was granted twenty hours a month. Our provider under this agency is the ARC, and through the assistance of my case manager we have had several wonderful individuals over the years who have truly bonded with my boys (some we’ve found on our own, some were suggested to us through the ARC).
There are several programs for respite under the DDD, and the one we’ve chosen pays our helpers directly. In this way we were able to use our monthly hours to send our helpers to camp with the boys to act as their shadows, which really helped offset the cost.
Another way to underwrite the tuition for camp is to contact the DDD directly, and ask for a list of camps that are “DDD-approved” (this is of course only applicable to families who have applied and have already been accepted for services by the agency). I’m told that every year the list of accepted camps continues to grow.
Finally, when my son’s horse-back riding camp had to close due to financial restraints, I wanted to make sure I left no stone overturned in procuring a new location for him. I contacted the Family Support Center of New Jersey (located in Manasquan), and spent about fifteen minutes on the phone with a wonderful employee who conducted a comprehensive search of therapeutic horse-back riding sites in Monmouth and Ocean Counties. She came up with about a half dozen options, one of which will end up hosting Justin this summer. We’ve been out to see it, and although I can’t recommend it because he has not yet attended, the facilities look beautiful, and the instructors could not have been more welcoming.
I see a post “part two” in my future.
I’ll list phone numbers and websites below, and I hope this piece will be informative to any readers with autistic children, or children with other disabilities who reside in central Jersey. Most of this information I happened to stumble upon from other parents who wanted to share their knowledge, and I feel compelled to pass on these opportunities to others. I’ve felt so fortunate in the connections I’ve been able to make for my children, in knowing that the memories they’ve formed from these experiences will reside with them for a lifetime. I wish you best of luck in that endeavor as well.
Here’s to a great summer.
Department of Human Services/Division of Developmental Disabilities
(732) 863-4500 or (609) 588-2727
Camp Bridge
(732) 580-6212
Old Riverside
(732) 458-1135
Family Support Center of New Jersey
(732) 528-8080
May 23, 2012
Go Fish
Zach barrels through the front door, whips off his shoes, and runs pell-mell into our rec room, intent on making sure all of his transformers are exactly where he left them before we went to the park. My husband is there to greet us, and as Jeff says a “hi Zach” to the blur rushing by, I look up and see a solemn expression on my spouse’s face. That look is unusual enough these days for me to stop my attempts to slough off my sneakers, and instead I focus on him. “What happened?” I ask, holding my breath a bit that whatever has transpired is only a mini-tragedy, and short-lived. “Sarah went to goldfish heaven” Jeff responds, and we both look at each other with resignation, because we’re anticipating the drama that is about to unfold.
It will be Zach’s first brush with “personal death”. I’m pretty sure he is not going to like it.
Ironically, the first time I recall losing anyone or anything in my life also had to do with a gilled entity, specifically one named Grace, whom my mom one day found floating unceremoniously at the top of our tank. I do remember some minor histrionics on my part (which is not unusual for me, Zach comes by his drama honestly), and a proper burial replete with popsicle stick bearing her name in our own backyard. If I remember correctly I insisted on placing her under what I considered “my tree”, and was quite emotional about the entire ordeal. Two days later I trampled her grave marker into the dirt, having completely forgotten the location of her eternal resting place.
Ah, the cruelty of small children.
We remind Zach that we had explained to him that goldfish don’t live very long, and told him gently that Sarah had gone to her final swimming hole. We both brace ourselves for tears, weeping, and an overload of grief. Instead, Zach asks us quickly if Louie, her companion, is still on earth, and we assure him he is. He asks if he can see Sarah, and I look up at my husband hoping that he hasn’t disposed of the body yet, and he looks down at my son and says “sure”. The three of us trudge upstairs together, and Zach enters the guest bathroom quietly, regarding Sarah thoughtfully as he views her laid out on her coffin of Kleenex.
Jeff asks Zach if he’d like to either bury her in the backyard or flush her down the toilet to play with Nemo (that’s how we got him to pee in the proper place, don’t knock that strategy), and he chooses the latter. I tell Zach that when someone dies we usually say some nice things about the person (fish), and tell them what they meant to us. He says Sarah was a “good fish”, and he listens as Jeff and I mumble something about friendship and loss and good times that probably went completely over the head of our five-year-old. Finally, it’s time to send her on her way, and Jeff leans down to my small son and asks him if he’d like to say anything else, or has any questions. He hesitates for a moment, then looks up at Jeff earnestly and asks only one thing.
“Can we eat her?”
Clearly, drama averted.
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.
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!
March 14, 2012
Brick SEPTA Easter Egg Hunt
I hear a triumphant “Got one!” shouted from behind me, but I am in pursuit of my eight-year-old son with moderate autism, and can’t stop to behold the treasure a pre-schooler has found. I’ve attempted to bring Justin to the annual Brick SEPTA (Special Education PTA) Easter Egg Hunt at Windward Beach, and he’s let me know in no uncertain terms that he wants no part of it. I make a mental note to skip this part of our Easter traditions with him next year, realizing he may just have outgrown rooting around on the ground for colored plastic cylinders. As I chase him down a hill toward the river, I look back over my shoulder one more time to take a brief glance at the festivities.
To my delight, at least fifty special needs children are gleefully participating in the event that Justin has decided he is way too cool to attend.
This is just one of many events that our wonderful local Special Education PTA has hosted over the years. There’s the annual Halloweenfest, where special needs children can paint pumpkins, participate in a hayride, and down large amounts of free buttery popcorn, which has always been my son’s favorite part.
For the first time this year SEPTA, in conjunction with the Lake Riviera Middle School and the Brick Challenger Program, hosted a dance for special needs children and their siblings, an event which was a resounding success. All these efforts are an attempt to make certain that kids who may be seen as “different” have the opportunity to participate in the same childhood staples that most of their parents have attended in the past.
This is why, despite my son’s disdain for this particular event, that I love the SEPTA Easter Egg Hunt.
I’ve taken my other child to local hunts over the years, but due to his tender age, he was often crowded out of the chance to collect his coveted prizes. On occasion I’ve had to literally cover eggs with my feet just to make certain my boy would walk away with one plastic concoction.
The great thing about the SEPTA Easter Egg Hunt is the abundance of eggs placed strategically in open view so that every child can claim at least a few for his or her own, and can truly participate in a traditional holiday ritual. There’s also a guaranteed visit from the Easter bunny himself, which after I concluded chasing my son back up the hill I was gratified to see that his presence brought joy to a number of children. Every kid who wanted to greet him was able to get a turn, and in a timely fashion.
All in all, it was clear that every child participated fully in a timeless, and fun, tradition.
I’ll most likely be taking my youngest child to scour the earth for pastel eggs this year, and I’m certain he’ll revel in discovery and acquisition, much as his mother did many, many, many decades ago. If you are a member of the Brick SEPTA and would like to participate, please see the link below:
http://www.facebook.com/events/185215351587371/
Saturday, March 31st, 11:00 AM, Windward Beach
See you there, and don’t forget your Easter basket!
March 12, 2012
Break a Leg
I step out onto the stage, the theater manager trailing slightly behind me. We’ve attained these heights by walking through a labyrinth of hallways in the underbelly of the building, all of which eventually converge into one slim stairwell, which has brought us here. I tentatively approach the edge, am rewarded with the sight of hundreds of empty seats waiting upon my words, an old but working venue with a real balcony to boot.
My young guide starts to tell me about microphone amps and soundboards, but I momentarily tune him out as I think about what else has brought me to this exact spot. I think about how the words of my play, Raising Autism, will be performed here in a month, and I am exhilarated. I remind myself that I will be one of the actresses saying these words, and I am momentarily terrified. The entire enterprise of writing, acting, directing and producing a play is an unprecedented stretch for me.
Then I recall that some of the simplest aspects of daily life are an almost Herculean stretch for my eldest son, a boy with moderate autism. I take a deep breath, and take one more step.
I never actually intended to write a play about autism, had frankly never entertained the possibility that I could write fiction. In a dual effort to share my story of living with two children on the spectrum, and to attract publishers for my memoir about those experiences, I began a blog two years ago. I quickly found myself quite content to remain within the confines of the non-fiction genre. The idea to write a play about different families’ experiences was actually born out of frustration, and came to me while driving in my car, where it seems most of my decent ideas still originate.
My mom and I had recently pitched the idea for our educational non-profit to a local school district, a program whose central tenet is pairing typical and non-typical peers (with a strong dose of anti-bullying thrown into the mix), and we hadn’t had any takers. My inquiries sent to other districts in the area had been met with either silence, or an interested but polite decline. I remember thinking that I had to do something to get my name out there to attract attention for it, and if possible, I also wanted to make this venture philanthropic in nature.
As I waited for the light to turn I thought about the amazing stories I’d read on various blogs about autism over the past few years, and the riveting memoirs I’d discovered as well. I considered the fact that there might be a few tales left to tell, that in a state like New Jersey, where one in ninety-four children is affected with autism, I was potentially surrounded by a community of people who might be interested in those stories.
I thought about how POAC (Parents of Autistic Children), which is literally around the corner from me, had done so many wonderful things for families in the autistic community residing in the Garden State. I figured if anyone actually showed up for this fundraising event, I might be able to contribute slightly to their efforts. These efforts range from educating parents, professionals, and law enforcement about autism to my personal favorite, providing a range of activities for families where their children with autism are welcome, and safe.
Then the light changed to green, my son gently kicked me in the back to remind me to drive, and the concept for a play was born.
I knew it would be impossible to encompass every type of child on the spectrum (as well as the parents who raise them), so I brainstormed characteristics of various children I’d read about or met over the years, and slowly four distinct individuals began to form. There are a myriad of issues surrounding the raising of a child with autism, and although I certainly couldn’t include them all, I attempted to select those which had affected many families with whom I’d spoken since my first son was diagnosed in 2004. Finally, I sat down to flesh out the women who would tell these stories, because I wanted the play to come from a mother’s perspective, which I felt I knew best.
And like old and trusted friends, those characters were already there, just waiting to be given a voice.
All of the women are quite different from one another, both in temperament and in background, and all three are reading from their “diaries”. One of the characters is a young mom with a newly diagnosed son. She is struggling with the label given her child, her fractured marriage, and the fact that she has recently discovered she’s pregnant again. The second is a single mom faced with the challenge of almost sole care of her brilliant but challenging pre-teen daughter with autism, a woman who is able to channel faith to give her the strength to persevere in what seems to her like almost insurmountable odds. The last character is a college professor discussing her experiences raising adopted teen-aged twins with her partner, sharing both the challenges they face now, and the struggles of having two children diagnosed on the spectrum well before autism was a household word.
I have to admit, I really like these women. If they were real, they’d be my friends.
My reverie is slightly broken as the enthusiastic manager begins to educate me as to the merits of a spotlight versus more traditional lighting techniques, and I realize I’d better pay some serious attention to the information he’s sharing with me. For the moment I put aside my desire that this play will garner POAC a veritable boatload of funds. I shelve my intent to offer the script up for free when I’ve finished performing it for my “pet autism orgs”, because really anyone with a living room, three chairs, and a few literate women could easily put this play on as a fundraiser.
I stop thinking about how fearful I am that my middle-aged brain will forget a crucial detail in the production of this piece, like advertising it, or wearing deodorant the nights we perform. For the moment, I ignore the fact that when I hit this stage I might be overwhelmed by the sheer weight of what has brought me to this place, the suffering I’ve witnessed in both my children, coupled with their multitude of triumphs. I fear I might have difficulty forming the sentences from a script that in many ways serves as a backdrop for my life.
Then once again I remember how often my son struggles just to say the word “mom”, and I know I can do it. I owe this to him.
I barely miss tripping over wires that would have landed me perilously close to the stage’s edge, and make a mental note to avoid tumbling to the floor for dramatic effect on performance night. I turn to the young man whose grandfather has so graciously reduced the price of this rental due to its philanthropic bent, and give him my full attention as we discuss whether our chairs should be placed in front of or behind the scarlet curtain.
I shake off my worries and concerns as I’ve done hundreds of times in the past eight years, and try to live in the moment. Through the graciousness of POAC, in a few months I will get to share an amalgamation of so many mothers’ stories to a live (and hopefully receptive), audience.
I will have the chance to honor my sons.
And as I carefully back over the slim strands of the wires which will carry my words throughout this elegant room, I allow myself one last extraneous thought.
Break a leg, Kimberlee. Break a leg.
For more information about POAC Autism Services or tickets for the play, please visit POAC at:
February 18, 2012
New Territory
“Oh no, we passed it!” my youngest yells from the back seat of our SUV, and as I look into the rearview mirror I see him contort himself so he can search for his desired destination once more. I respond with “it’s okay Zach, we just have to go through the circle and turn around”, and I watch my Pennsylvania-bred husband make a face at the word “circle” (a shape which symbolizes Jersey for him), and I laugh. “We’ll be there in a few minutes Zachy” I reassure my son, and he smiles, bouncing up and down in his seat as far as the seatbelt restraints will permit.
“Mom, it’s my birthday party for friends!” he yells, and I smile back because he’s right, and because the gymnastics venue which is hosting us is now mere seconds away. Zach lets out a loud “WAHOO!!” as we turn into the as yet empty parking lot, and I have to admit, I’m not sure who’s more excited, me or my boy.
Today is the first “kids birthday party” we’ve ever held in the almost nine years I’ve been a mom.
To be perfectly honest, we’ve had birthday bashes in Virginia in which our eldest child, Justin, technically had friends present. These child guests were generally the offspring of what we liked to call our “faux family”, and not Justin’s friends in the true sense of the word. During these fetes there was a lot of interaction going on between the adults with whom we spent many hours socializing on weekends, and not a great deal of interaction between our boy and other kids.
Since our return to New Jersey Justin has spent most of his years in out-of-district placements, both of which drew children from various locales in the state. Between the kids living far away, and the difficult nature of many of the families’ lives, we didn’t feel comfortable planning a party for Justin knowing that most of the guests might not show up. This year his school has offered to let us throw him a party on school time, which will guarantee a good crowd.
I’ll definitely be writing about that event too.
But today is about Zach, and I’m so excited that this is working out for him, thrilled that he showed an interest this year in a party, ecstatic that almost everyone responded positively. His behavior at his friends’ birthday celebrations has definitely improved in recent months, as he’s learned to reign in that “over-exuberance” a bit so he can listen to instructions and really participate in these events. I’m so proud, literally and figuratively, that he’s made it to this place. Frankly, I’m also excited for myself and the other adults, as we will be the beneficiaries of an entire hour in which our parenting will be limited to watching our kids tumble and spin in a room in which we’re not allowed entry.
If I’m completely honest, this will be one of the highlights of my day.
I snap out of my train of thought as I hear the ‘click’ of the seatbelt restraint as it releases its charge, and I remind Zach to stay in his booster until we’re ready to get him out. There will be a brief skirmish with an over-zealous balloon as we schlep six tons of party accoutrements into the waiting area, and a moment where my son’s small form is hidden behind a post and I’ll be convinced I’ve lost him. Otherwise, the afternoon will unfold with my happy boy and twelve of his buddies immersed in ball pits, and later, the consumption of a gluten-free/casein-free cake that tastes almost like the real thing.
For once, a McCafferty event will transpire with almost no drama whatsoever.
On our way home there will be discussions about where the celebration should take place when he turns six (Disney will be suggested and quickly turned down). My son will talk about how much he loves his friends, how he was so happy they came. I will respond to him that I am so happy too. Without any prompting he’ll thank us, then launch into a narrative debating the merits between herbivorous and carnivorous dinosaurs. The party will be put to rest.
And I’ll sneak another piece of chocolate out of his goody bag, sit back, and smile.
February 9, 2012
Special Needs Dance for “Teens and Tweens”, Lake Riviera Middle School, Brick NJ
The door will open, and the hypnotic pulse of Madonna or Culture Club will envelop the prospective guest, a pre-adolescent who might just see familiar chaperones sporting parachute pants, or big hair. The dance floor will be populated with kids rocking out to 80’s tunes, and when they need a break from the relentless demands of the “Material Girl”, the plentiful refreshments in the gym will serve to quench their thirst. Just to be clear, I’m not writing a retrospective of my own pre-teen days. No, this is simply an invitation to participate in a wonderful event. It won’t make the news. It won’t be picked up by Entertainment Tonight. After all, it’s just a dance (albeit one covering the music of the BEST DECADE EVER).
As I said, it’s just a dance. But it’s events like these that can change peoples’ perspectives on the world of disability, and make an indelible difference in our children’s lives forever.
The mixer, which will be hosted by Brick SEPTA (Special Education PTA), in conjunction with the LRMS NJHS (Lake Riviera Middle School National Junior Honor Society), is also being supported by the Brick Township Challenger Program, a local organization well-known as champions of children with disabilities. The idea was conceived by Mary Tara Wurmser (Brick SEPTA president) in conjunction with the SEPTA executive board, who when searching for a venue quickly found a willing ear in Kyle Oliveira, President of the Lake Riviera National Junior Honor Society.
As many of Brick SEPTA’S activities seem to focus on the younger crowd, the organization was hoping to facilitate an event that included older children, their siblings, and their neurotypical peers. They approached Kyle with the concept, and as he was searching for a new service project for the NJHS, the idea gave him a forum with which to fulfill the NJHS’s needs. When asked if he had a difficult time soliciting assistance for the evening, Kyle responded, “all of our student members are dedicated and kind-hearted. We have fun doing things that help others so it’s our pleasure, no one has to think twice before signing up”.
To the mother of two children who themselves have special needs, that attitude is 80’s music to my ears.
When pressed further as to why this event meant so much to him, Kyle shared with me that he believes this dance will have important ramifications in several ways. He hopes the opportunity “will help students with special needs by broadening their horizon with the outside world, giving them a sense of accomplishment and acceptance”. When asked how he felt the evening might change the perspective of his own neurotypical classmates, he responded that the event might “help us be more comfortable to socialize with kids that may be different from us, and (help us) not view them that way”.
And that’s the crux of everything right there. Being different from someone else, in the end, is irrelevant. When a sentiment like that comes out of the mouth of a teen-ager, it gives me a great deal of hope.
Of course no event that involves a budding teen-ager would be complete without some great music. That’s where “Grease Lightning”, the DJ group whose members include Matt Reinhold, Ryan Stamberger, Nick Wickberg, and Jonathan Stamberger, come into the picture. Matt Reinhold, a founding member of the group since 2005, shared strong feelings about the mission of Grease Lightning, and what it means to him. On a personal level, as an individual with special needs himself, being able to perform for an audience “makes us feel good about ourselves, (and) sort of special”. In regards to children with disabilities, he shared with me that perhaps because of this night, “maybe the kids at Lake Riviera will become friends with the special ed kids, and help them when they are in high school.”
And to that I say a resounding “yes!”.
I am sure this evening will not simply be an excuse for middle-aged parents to search eBay for those elusive parachute pants, or for the female chaperones to raid the depths of their closets for leg warmers and shoulder pads. I am confident that in the end, a “mixer” between neurotypical peers and those with special needs will just be one more opportunity for tomorrow’s adults to see that the common bonds we share transcend our differences. We all need a chance to have fun. We all need the opportunity for friendship to grace our lives. We all need respect.
And to the National Junior Honor Society at Lake Riviera Middle School, I extend my gratitude for this event that is not just a dance, and for helping change perspectives, one child at a time.
The event is open to teens and “tweens” with special needs and their siblings, ages ten and older. It will be held on Saturday, March 3rd at the Brick Civic Plaza Rec Gym (provided by Brick Township Challenger Program), from 7:00 to 9:00 PM, and is open to Brick residents only. Admission is $3, and will cover the costs of the refreshments, door prizes, and the DJ. Please RSVP to Brick SEPTA at btsepta@gmail.com, or call (732) 903-5840. For further information, please visit: http://bricksepta.org/pdfs/Septadanceparty.pdf
February 5, 2012
My Birthday Boy
Dear Zachary,
This morning, as I sat with your half-slumbering five-year-old body in our glider chair, I had to smile, because I know my days of waking you up this way are numbered. It won’t be that many years before the mere thought of needing a hug from me to cajole you into consciousness might make you retch slightly (five years, four years, perhaps one?), so I know I’d better enjoy this now. I wish I had pictures of these pretty little moments (maybe when Mommy completely learns how to use her Smart phone, I will), the ones that make that forty-pound weight gain while gestating you completely worthwhile.
You remember the moments I’m talking about, right? Like spontaneously telling me I’m your best friend (Justin was so five minutes ago). Announcing to fifty people at your pajama book fair that “This is my Mom!”, and expecting all of them to be as dazzled as you were. Begging me to “be with you” instead of Justin, which means rejecting the far-more-fun twenty-one year old sitter so you can spend the afternoon with me. You know, those brief moments in time where hanging out with your mother was actually cool.
In my mind, I envision future Zachary shuddering, complete with formidable eye roll.
I am aware, because I saw this happen all too often with my students and their parents during my teaching career, that in the near future I will know less than nothing. Not too long from now our days of snuggling under the “picnic blanket”, me making up stories in which you are invariably the hero, you changing the endings because you get bored, will soon cease. Down the road, upon learning I will be going out for the evening I will barely earn your guttural goodbye, rather than the teary scenario that usually ensues (the one giving that funeral scene in “Steel Magnolias” a run for its money).
In a few years, I will merely exist to serve.
You will prefer to spend time with your friends, or alone, or anyplace in the house where your father and I are not. I am certain you will think we are too old to understand anything (and perhaps, given my current memory lapses, you’ll be justified in that thought). You will not take kindly to my suggestions of how much you once liked us, will regard with great disdain any photos I may have figured out how to take, or anecdotes I’ll use to remind you of your early childhood. After this rejection I will retreat with my remembrance arsenal and eat more chocolate (and drink more wine) than usual, securing my mementos away to be brought out as evidence another time.
Perhaps, for fun, that time will coincide with the arrival of your prom date.
No, my days as “Mommy-Goddess” are limited, which is a new phenomenon for me, because I’m pretty certain I’ll still be “Justin’s girl” when I’m eighty. It’s a bittersweet knowing, tinged with regret that this time will recede so quickly, and relief that eventually, your days of mommy- worship will disappear. Your brother’s life will have a different trajectory than your own, one which I will try my damndest to infuse with as much happiness as possible. You, my sweet boy, will have choices that your brother will not.
I hope you will occasionally make the wrong ones (as long as they don’t involve jail time, we’re good). I wish that you will struggle sometimes, because it toughens the soul, which is a good thing, because sometimes life is a bitch. And as I inevitably watch you wield your charms on your love interests, please remember to treat those girls with respect, because if you don’t, you are so grounded.
Forever.
You’re starting kindergarten this year, and I’m told the time from now to graduation feels like a blink of an eye more often than it does an eternity, so for now, in this moment, I’ll gather you to me. I’ll whisper in your ear to remember to love yourself, and I mean all of yourself, because that’s the only way you’ll ever truly love another. I’ll quietly remind you that a great GPA is nice, but you’ll make me most proud if you’re known as a boy who’s kind to others. I’ll sweetly suggest that when you grow up you should remember your mother, the one who wiped your butt, disciplined you even when she didn’t feel like it, and nourished you not only with mediocre cooking, but with all the love in her considerable soul.
In a few minutes you’ll invariably start to whine that you’re tired and I’m mean for waking you, and the magic moment will be pierced through with our daily reality. I will beg you to get dressed as you flop yourself on the floor, and eventually, as I bribe you with reminders of your friends waiting for you at school, you will comply. I’ll feel that soporific sweetness start to slip away, and as we busy ourselves with our daily routine, only one thought will remain.
Happy 5th Birthday, my big and little boy. I love you.
January 4, 2012
Dear Diary…
Dear Diary…
That’s how each segment of my play starts, a script I wrote this summer when I was able to summon the maturity to ignore my pool and whatever Game of Thrones novel I was reading at the time. It’s the story of three mothers and their experiences with their autistic children, all of whom hail from extremely diverse backgrounds, and all of whom are raising children with autism who reside on various parts of the spectrum. One woman is a young mother struggling with her marriage as well as her son’s diagnosis; one is a rather devout Jew and single parent; and one is a college professor raising adopted autistic twins with her life partner.
I’ll confess, the lesbian is my favorite. She’s quite sassy.
I’ll also divulge to you that this past summer nobody was more surprised than me that I could write fiction. My last foray into this genre was a rather pathetic short story penned so long ago (the 80’s) that it is most assuredly residing in a landfill rather than a recycling bin. The truth is, the idea to write the play at all was in part born out of a desire to create a fundraiser for Parents of Autistic Children (POAC), a local and fabulous autism organization, and in part to promote another endeavor I’ll be speaking about at a later time. Frankly, I was simply thrilled I could do it, and equally honored that POAC agreed to let me produce it for them.
I’ll be announcing dates soon, and there may be multiple venues (as to my non-faux-humble surprise a few “real” theaters actually seem to be interested) but I’ll wait to formally announce until everything’s set in stone. I’m hoping to put on a few shows here in Jersey, and a night or two in DC, the city I consider my second home. Of course, when Tina Fey and Amy Poehler beg me to be a part of such a monumental event, I’ll graciously concede, and I’m certain Broadway will open its arms to me as well.
Tina and Amy might have a small part in that too.
When the “tour” is over, if it turns out that someone other than my husband liked my play, I plan on making my script available to anyone who’d like to use it as a fundraiser as well. There will be some rules (it’s a play about autism, of course there will be rules). Any individual interested will have to show proof of where the money’s going (I don’t want to find out down the road my writing contributed to someone’s granite kitchen countertops). Said individual will have to promise to read my words as written (if you have some differing opinions to express, write your own play). Although this isn’t a deal-breaker, it would also be lovely if whomever appropriates the script mentions I wrote the thing, and informs me as to how much money they banked for their organization.
And if you’re thinking you don’t have time to put on a play to support your favorite autism organization, trust me, this little theatrical contraption couldn’t be easier to produce. There’s no memorization, no dialogue, and no sets. Hell, there’s really no movement required at all. If you have a living room, a few chairs, and three women who can read, you’ll have yourself a free fundraiser.
Coupled with my goal of relaxing more in 2012 is my desire to throw things out to the universe a bit more, and I’m so excited to give “the theater” a try. I’ve already begun to learn about important things like building permits, fire codes, and soundboards. I’ve acquired my fabulous autism-mom/actresses, Dr. Robyn Leitner, and Babette Zschiegner from Peace with Autism. Most importantly, I’ve begun shortlisting songs for us to walk onstage to (most of my husband’s suggestions were inappropriate, I sense a contest on Facebook in the imminent future). So join me in April (dates TBA), and support POAC, a wonderful autism organization.
I promise, you’ll laugh a little, and you’ll cry a little. Thanks in advance for your support!
