August 24, 2014
Recently my youngest son told me he wants to lead his own country when he grows up (watch out world, he just might do it.)
I figured in that case, it was time he had a brush with politics.
Zach’s timing couldn’t have been better, as the Autism Cares Act was due to expire on September 30th, and I thought I could tie his newfound love of politics in with a lesson about the impact this legislation has had on millions of US families . We’d been talking a great deal about what this act has meant personally to our family, and the fact that US Representative Chris Smith of New Jersey had been one of the co-authors of the bill.
I’d discussed with him that I hoped it would pass again, and how Autism Speaks had created a campaign to encourage families to visit their Congressman and urge them to vote to pass the bill. When I told him Representative Smith had an office not far from our house he turned to me and said “I want to go thank him in person.” I then had to explain to a seven-year-old how extremely busy our Congressmen are, and how that probably wasn’t in the cards for us.
I will share with you that this initially did not go over well.
I figured out a way to placate him however with a promise of a trip to his office to meet his incredibly patient assistant Jason, a trip which would include a hand-written thank-you note he would personally deliver himself.
I was informed the trip would also include a stop for ice cream. My son has his priorities straight.
So on a cloudy Wednesday morning I packed my son, his note, and enough money for chocolate chip mint ice cream cone into my SUV. We soon headed out 195 to deliver our heartfelt thanks for Representative Smith’s hard work to help authorize the Autism Cares Act, which eventually culminated with President Obama signing it into law.
I think it’s obvious from the photo how Zach felt about the trip.
I’d like to take a moment to thank Senators Menendez and Enzi, as well as Representatives Smith and Doyle for their tireless work to bring this law to fruition, a law which dedicates 1.3 billion in federal funding for autism over the next five years.
And believe me, our families need it.
Special thanks also goes to Congressman Smith’s office for welcoming my son’s “mission,” and for responding so promptly to our calls.
My son is even more inspired to start his own country, or at least help govern this one.
And as I’ve said for years, with this child, with the right supports and help from our government, anything is possible.
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April 30, 2014
Since I’m continually asking Zach to step out of his comfort zone I recently decided to step out of mine, and so I took my mildly autistic seven-year-old into the wilds this weekend for our first (hopefully) annual McCafferty family camping trip.
Before I go any further, I should mention the camping ground is a ten minute walk to Great Adventure. This is my idea of roughing it.
To be fair however our campsite came replete with, well, nothing, and my son was baptized in the use of port-o-potties, a distinct lack of running water, and a dearth of electricity (save for Sandy he’s been a bit sheltered.) Except for the port-o-potties he thought it all a grand adventure, as did his mom (except for her entirely stiff, aching body the following day, apparently cold hard ground is not acceptable when you’re almost fifty.)
We made it through however with only minor blips in our twenty-four hour excursion, which culminated in his waking and his rather loud declaration to the world that he LOVES CAMPING.
In the future my back is going to hate me.
Frankly there’s not much I won’t do for this kid despite my being such a girlie-girl (yes, my nails were done before the trip,) in part simply because I love him, and in larger part because he tries so hard in every endeavor and deserves to have his mom suck it up for him.
I could write this post today about how he waited patiently in line for over an hour to get into the park because Great Adventure dropped the ball when it came to security checks. I could tell you how he wanted so much to help, and loved being engaged with the other boys. Trust me, I could wildly brag about this kid, but I won’t, because in many ways the weekend wasn’t about him, or about his personal success.
It was about community. Because in our world it doesn’t take a village.
It takes a planet.
It’s the last day of April, which technically brings Autism Awareness Month to a close. With April 30th brings an end to the discussion of how in some ways we should be so beyond simple awareness- that our community needs to be accepted, to be embraced, to be truly and authentically included. I’ve read posts this month by writers wanting to move past mere acceptance, and I get what they’re saying, I truly do. I always want more for my boys, I push for it, demand it. We still have such a long way to go until everyone witnesses the beauty in boys and girls like mine.
But I’ll stand by awareness too, by educating one person at a time to the gifts and challenges of autism, because awareness is what made this weekend a triumph for Zachary and for me.
We would never have pulled this off even a few years ago without the support and understanding of his den and pack leaders, many of whom have taken it upon themselves to learn about autism and its many manifestations.
We would never have survived our stay without the compassion and patience of all his educators and school staff, individuals who have gone out of their way to celebrate his differences, and encourage his unique world view.
We would never have reigned victorious in the “wilds” of Jackson save for the kindness and respect of his karate instructors, his baseball coaches, his church school teachers, or the understanding of his autism sibling support group instructors.
Honestly, without their interventions, after our first look at the port-o-potty we would have been hoofing it home.
My son had a wonderful time entirely out of his comfort zone this weekend because for the past six years the people in his community, his world, have gone out of their way to do far more than accept or tolerate him. Instead, they have consistently, purposefully, enthusiastically gone out of their way to embrace him.
We didn’t just survive this weekend. We “thrived” it.
As as “our month” draws to a close, my hope is that this awareness, acceptance, or celebration, whatever you choose to call it, continues to spread like the warm blanket I cocooned Zach in Saturday night, enmeshing us all in the realization that it is our differences that make us all the glorious individuals we are.
Despite how divided our community can be I will tell you I now have hope, drawn from the well of individual acts of kindness my son has been the blessed beneficiary of all these long years. So I will end this piece with a thank you to all who have contributed to enabling us to reach this place, to every person who fueled my hope when many times the fires were dim.
March 18, 2013
“Mom, I lost my tooth!” my youngest son cries with wonder, a shout coupled with excitement and tinged with a bit of disgust. I run over to the kitchen table and respond “Let me see!”, and indeed, when he carefully unfurls his fingers, it appears the tiny white object nestled in his palm is one that formerly resided in his mouth.
He smiles up at me with his new toothless grin, which I know I’ll come to adore as long as it lasts, and asks me if we can put it under the pillow tonight. I respond with an emphatic yes, and ask him what he’d like the tooth fairy to bring to him. He looks me straight in the eye and answers he wants to go to China.
That’s my boy. No pedestrian quarters for him.
I tell him that although the tooth fairy is quite efficient in her prize dispensing that unfortunately travel agent is not part of her job description, and he begrudgingly knocks his request down to a Phineas and Ferb book, a desire his mother actually can fulfill. He then runs to the bathroom to see the gap where his tooth once resided, touches it gingerly with his finger to see if it hurts.
It doesn’t. Satisfied, he runs back to his seat for lunch, already asking me if we can go somewhere today as his mother simultaneously figures out how she’ll escape to Barnes and Noble before nightfall. Soon he is focused entirely on consuming his lunch, tooth loss forgotten as he regales me with his day in the fast-paced world of kindergarten.
We’ve entered the arena of lost body parts. My little boy is growing up.
There are signs of it everywhere. I see his growth in the way he’d rather struggle to put on his gloves by himself than deign to ask for help. I witness his independence when he pushes his father and me out of the room at bedtime so he can read his last story alone. I acknowledge his progress when he clamors for privacy in the bathroom, an enclave which previously required adult attendance for him at all times. My not-so-little one is intent on figuring it all out for himself, and that’s as it should be.
He’s fine with it all. It’s just his mother who has to learn to adjust.
It’s not that Justin doesn’t strive for independence too. In the past year my eldest son has acquired so many new and important milestones, from completely dressing and undressing himself without prompts, to helping clean up at dinner which requires a number of prompts (I can’t blame him, I don’t like to do it either).
He no longer shadows us constantly, prefers to be with us but not on top of us in a room unless he’s hungry, then all bets are off. Justin’s making his way in the world too, at a different pace and trajectory than the rest of us, but his way nonetheless.
It’s simply hit me that while on some level my firstborn will always need our care, his little brother will not.
I realize that relief is welling in me, threatening to make this an emotional rather than a triumphant moment, and I push it back for later contemplation so I can be here, in the now, with Zach. I can’t stop my mind however from briefly returning to those dark days when he stopped speaking, playing with toys, or interacting with those he loved in any comprehensible way.
He has come so far from that painful abyss, the one in which he resided for such a seemingly endless time. My boy will have choices, although I no longer feel his life will necessarily be more fulfilling than his brother’s.
Zach is forging his own path, one that won’t always include us. To the core of my soul, I am eternally grateful.
He finishes his lunch with zeal and asks to go upstairs and place his tooth next to his brother’s, in the small silver receptacle I received at Justin’s birth. I take it down from its resting place and note that it needs a good polishing (and also note that this probably won’t happen). Zach takes off the lid dramatically, declaring with wide-eyed wonder that his deposit is bloodier than his brother’s, a fact which apparently is quite cool. He places his treasure inside and bounds from the room, already on to his next quest, to best me in yet another light saber duel.
I bet you can guess who will win.
On tippy-toe I replace the tiny teddy bear in its sacred spot, then prepare myself for a battle which will invariably include several stung knuckles. I realize I will have to practice this slow attrition of need, of always being central to his life. It is both a glorious and difficult path.
And one I will gladly walk with him.
December 17, 2012
It’s 5:15 on Saturday morning, and I know there’s not a chance in hell I’ll fall back asleep. I throw on my robe and make my way to my keyboard and wait for the blinking cursor to arrive, that pulsing strobe I know will mock me as I struggle for words.
For once, I don’t even know where to begin.
This won’t be a post about autism, although I will remind everyone reading this that whether or not Adam Lanza had Asperger’s or not, autism did not incite him to his murderous rampage. Mental illness did. The fact that he may have been on the spectrum is no more important than the color of his eyes, or the fact that he was male, or white. Autism, in all its many forms, is not a mental illness.
Hopefully, I am preaching to the choir.
Like many people I try to make some sense of this tragedy by comparing it to others in the past, and by seeing it through the lens of many different roles, specifically those of child, parent and teacher. As I weeded my way through various media commentary on Friday afternoon I couldn’t help but think of Columbine. I can remember my reactions to the event; disbelief, horror, and eventually just a deep sadness which remained for the children, parents, and school staff who endured such terror. When Columbine occurred I was not yet a mother, and could only imagine the devastation that Eric Harris and Dylan Klebold wreaked on that terrible day. Now I am a mother, one whose youngest child turns six in a few short weeks, just like many of those lost to us forever.
Trust me, like many of you, the “what- ifs” running around my head regarding my children are without doubt my early morning wake-up culprits, and I don’t imagine they’re going anywhere very soon.
As I sit here in the wee hours of the morn I find I can’t stop thinking about those kids, yet I can’t write about them either. Perhaps it’s too close, too soon, but I can see them through the lenses of both mother and teacher, and it’s just too much. I am so, so sorry for their parents, grandparents, and siblings. I am so sorry for that entire community, who will be permanently marked by this loss, who can never fully recover from such a tragedy. I am even deeply sorry for those children who survived, because they are not only old enough to remember the horrific events of this infamous day, they are also old enough to understand what happened. Their innocence has been robbed. Their childhoods have been stolen.
And yet, that’s nothing compared to all of those little lives lost.
No, as I sit here struggling with what to say that hasn’t already been said I know I’ll focus on the teachers, because although I’m no longer “practicing”, I’ll always be an educator. I hope I would have acquitted myself with the smarts and grace of the teachers and staff of Sandy Hook Elementary, but I don’t think any of us can ever know how we’ll behave in a situation where the world has been turned upside down, where any semblance of sanity no longer exists. I do know that the teachers and administrators who perished on Friday were the absolute heart of education. Each one demonstrated undeniable heroism, from the teacher who shielded her students with her own body, to the teacher who told her students she loved them in case those were the last words they ever heard, to the no-nonsense principal and school psychologist who rushed a madman with a gun.
I will be so bold as to say perhaps they wouldn’t even see themselves that way, because to many of us, their actions were just part of the job, a sacred trust. It’s one in which these days we are constantly called upon to protect the hearts and minds of our charges, thankfully in a setting usually not rife with violence. On Friday, December 14th, that sacred trust was put into the extreme for six staff members who honored that covenant: Rachel Davino, Dawn Hocksprung, Anne Marie Murphy, Lauren Russeau, Mary Sherlach, and Victoria Soto. They were selfless. They willingly made the ultimate sacrifice.
They were heroes.
From me and my family, to their families and those who loved them, we send our prayers, and our love.
And one last thought for those who have fallen.
November 18, 2012
It’s day fourteen post-Sandy, and my house is calm, warm and finally clean. As I come back from my run I pick up the morning’s debris pre-school bus, mostly books scattered around the front door as Zach likes a good story before he begins his day. I finish cleaning up, and I realize there will be almost no noise or demands made on me for the next four consecutive hours, and I break into a huge grin.
School, glorious school.
At chez McCafferty we got power back in the middle of last week, and the luxuries of consistent phone, cable and internet use this weekend. We were one of the lucky families, merely inconvenienced, no tragedy accompanying our storm. As of this Saturday things really started to get back to normal here, which makes me both happy for my own brood who truly crave routine, and simultaneously anxious. There are still hundreds of families in my own town without homes. As time passes and all of our routines are reestablished, I just want to make sure we don’t forget those still in need.
Zach’s kindergarten teacher kindly called us over the weekend, attempting to locate all of her charges and make sure they were okay. She shared with me that it is very likely that some of the students in my son’s school, perhaps in his class, have been displaced. She also told me that in an act of typical largesse Brick is accepting students from surrounding towns as well. It is sobering to imagine a five-year-old boy like Zach losing so much and having to start over in a new school as well. I can only imagine the added degree of difficulty if the child has special needs.
I can imagine it, but it’s not a pretty picture.
I’m hoping when the dust clears a little we can get a handle on who is still in need, and what exactly they require at this point. It may be the simple staples of food, clothing, and batteries. Perhaps families will be at a point where gift cards would serve them best.
We won’t know unless we ask. And we have to keep asking, even as more fortunate families like my own move on with their lives.
I like the idea of matching individual families with donations, and as I hear of situations such as this I will be posting them here. Please feel free to comment, particularly if you or your company is offering specific items to people. The important thing now is to make connections, and continue to let those whose lives were literally uprooted by Hurricane Sandy know that we still care.
And from what I’ve seen of the generosity of not only this town, the Jersey shore, and the entire state, I know we can truly help.
Places to make donations to families in need are as follows:
1) Primary Learning Center
224-260 Chambers Bridge Road
Brick NJ 08723
Need: gift cards to Target, Walmart, Loews, etc.
Contact info: (732) 262-2590
Cindy Dornacker ext. 1527
Magda Diaz ext. 1528
The PLC cannot provide receipts
2) POAC (Parents of Autistic Children)
1999 Route 88
Brick, NJ 08724
Need: Gift cards to Target, Walmart, Loews, etc.
Drop-off: between 10-2 weekdays
Mail: attention Gary Weitzen/Simone Tellini
POAC will provide a receipt upon request
3) Backpacks for Brick
If Brick students at any of our schools need supplies, they should let their teacher or guidance counselor know. Supplies will be replenished this week.
June 3, 2012
Autismmommytherapist will return the week of 6/11 after a much-needed break. Thanks, and see you then!
May 2, 2012
The wind whips over our clasped hands as we navigate the obstacle course of cars in the parking lot, washing over our windbreaker-sheathed arms like so many ripples on the sea. We’re braving the gusts because my youngest son Zachary, who has mild autism, has begged me to come to the park today. Against my better judgment (because it’s cold as hell out) I’ve conceded, mostly because he asked so nicely, and with such enthusiasm. I glance down at him as we run and ask him what he wants to do first, i.e. the equipment, or just jog around the park and exhaust his mom. He smiles up at me and says “Mommy, the stage first, and you will tell me a play.”
A story’s not good enough for this kid. He wants action. I’d better deliver.
We approach the tiny amphitheatre quickly, and I watch as my small son takes the stairs two at a time, with his mother following at a more age-appropriate pace. I’ve been conjuring up plots in the few minutes I’ve been afforded to “get creative”, and for some reason Ali Baba is stuck in my mind, and I know I’ll build the story line around him. Zach instructs me where to stand and shows me the place from where he’ll be watching, a random spot too close to the lip of the stage for my comfort. I gain his attention, and ask him to adjust. I begin to spin a story of a brother with six sisters who try fruitlessly to render their sibling more like them, and how our protagonist rebels in protest. An evil crone is thrown into the mix, spells are cast, a renewed sense of appreciation for those who are different is discovered.
I know, it’s a running theme with us. Nothing like a good cross-over tale.
At first Zach is striding pell-mell across unforgiving concrete, straying close enough to the edge to be cause for concern, until I instruct him that the rest of the play mush be conducted while he’s stationary. At one point the plot I’ve constructed no longer requires movement, and we end up reclining within feet of one another, Zach rapt with attention, his mother cold but animated in the telling. Minutes pass, and I realize as I reach our fairy tale’s denouement that my son has inched his small frame ever closer to my larger one. Eventually his arms are draped around my shoulders, his face nestled in the crook of my neck as he leans into me. He is secure in that sacred spot where both of my children always seem to fit, no matter what their age.
I conclude my little spiel, one with heroes forged from frailty, and wickedness banished to the farthest realms of a kingdom. Zach remains still and silent for a few minutes longer, cuddled in my embrace. Although I watch the wind whip up dust in the eyes of moms, toddlers and dogs attempting to traverse the park, we are protected he and I, left undisturbed by this structure meant for performance. It hits me that these afternoon interludes are numbered, as he’ll most likely enter a full-day kindergarten program in the fall.
I pull him a little closer.
It also occurs to me how far he’s come in the almost four years since that terrible autumn, a period in which my husband and I witnessed him losing most of his words, watched his gut become a battleground, saw the spark leave his eyes. I would give anything to be able to go back in time and tell those devastated parents of the leaps and bounds he would make, the milestones that would be conquered. I’d inform them that eventually those coveted words would resume, with “why” predominant among his ever-increasing vocabulary. I’d say that his inner spark for life would return in full force, an undeniable fire that cannot be quenched. I’d share that his creativity continues to astonish us, that there will be hard work for him ahead, but no limits on what he can do. Most importantly, I’d reassure those parents that he’d once again be happy, would revel in his childhood, which is all I’ve ever wanted for my sons.
Then, I’d give both of us a really big hug.
Fairly soon the moment concludes, with my child offering his hands once again to be warmed, his extremities in complete opposition to the content of his heart. Soon we will rise and descend those stairs to unyielding tarmac, but for a few moments more, we are content. My son whispers in my ear “thank you Mommy”, and I squeeze him more tightly, conveying my message with sinew and strength, not words.
Zachary, my love, all the world is your stage.
April 23, 2012
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!).
March 23, 2012
Today’s Gratitude Attitude goes out to my fabulous actresses and friends, Bobbie Gallagher, Babette Zschiegner, and Mary Craig, for a great rehearsal this morning. I can’t believe our first show is in four weeks! Major thanks to everyone who is helping to promote the play, I truly appreciate it!
March 9, 2012
Absolutely ridiculous amounts of gratitude to write about this week…
First, major thanks to Vanessa Ira and the staff at Exceptional Parent Magazine for allowing me to publish an article about my fundraising play, “Raising Autism”, which will be produced for POAC Autism Services. It is an honor, and I am so appreciative!
Second, a note of deep appreciation to the staff at Brick Township High School, as well as to Colleen, my “sound and lights person”. Mr. Biblheimer and Jennifer Roebuck, employees at the school, were instrumental in helping me figure out exactly how we’re going to pull off the first show. It’s just six weeks away, it will go by quickly. Thanks to all for their cooperation!