December 17, 2012
Thank- you to the Staff of Sandy Hook Elementary School
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.
Thank you.
November 18, 2012
Storm Stories
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
(732) 785-1099
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
Time-out…
Autismmommytherapist will return the week of 6/11 after a much-needed break. Thanks, and see you then!
May 2, 2012
All the World is His Stage
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
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!).
March 23, 2012
“Raising Autism”- Gratitude Attitude
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
Exceptional Parent Magazine and Brick Township High School/Gratitude Attitude
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!
March 5, 2012
Robin Sims Trailblazer Award
(Billy and Bobbie Gallagher)
Music from “The Godfather” serenaded us as me and my husband secured our seats, wending our way through brightly decorated tables which were filled by the attendees from this year’s annual POAC Autism Services Gala. The theme this year was the roaring 20’s, and amidst zoot suits and faux furs, feathers and fedoras, the guests not only showed their support for children and adults with autism by their attendance, but many enjoyed a much-needed night out as well. This is my second year participating in this event, and while Gary Weitzen’s (Executive Director of POAC) welcoming speech is as usual filled with gratitude, there was a bit of a twist this year, an emphasis on an integral issue those of us with children on the autism spectrum must always remember.
All of us owe an enormous debt to those parents who came before us.
It’s a sentiment I write and think about often, as I reside firmly in the younger generation of children with the disorder, being the mother of two boys whose ages remain in single digits. I’ve always said that although my family’s journey has been arduous to say the least, the difference between our path and that of families with offspring at least ten years older than mine cannot compare. A decade or more before my eldest son was born, parents and others advocating for autism services both in government and in the schools had little or no support. In effect, they were starting from scratch so their children could receive even the bare minimum of assistance in terms of education, insurance coverage, and employment and residential opportunities when they reached adulthood.
Despite the difficulties of the challenges laid before them, many of the parents of children with autism who preceded me fought long and diligently to improve all areas of their children’s lives, including changing society’s perspectives on what individuals with autism can contribute to the world at large. They were trailblazers of the highest order, and every time I put my sons on their school busses, attend a recreational activity provided by POAC, or receive reimbursement for necessary therapies from our insurance provider, I try to remember to take a moment to mentally thank the individuals who eased my boys’ way with their efforts.
And Saturday evening, Gary Weitzen and POAC took the time to thank two individuals who exemplify exceptional advocacy.
This year, several of POAC’s board members created the Robin Sims Trailblazer Award to honor a relentless autism advocate, who was herself the mother of two children on the autism spectrum. Robin served for over a decade on the board of the VOR (the only national organization to advocate for a full range of quality residential options and services), and as their Board President until she passed. She also served as a member of the NJCDD, the New Jersey Council for Developmental Disabilities, which is the governing council for the Division of Developmental Disabilities. Robin fought relentlessly to ensure that families, regardless of their respective ethnic and financial statuses, remained an integral part of the decision-making process regarding the fate of their adult children with disabilities.
She was a force to be reckoned with and an inspiration to all who knew her, and a beloved sister, daughter, wife, and mother. Literally days before her death, members of Congress made time to meet with her regarding the Developmental Disabilities Assistance and Bill of Rights Act, listening to her impassioned pleas as she traversed the halls of the Capitol in her wheelchair. Tragically, she lost her fight to cancer seven months ago, leaving a void both within her family and within the autism community that will never be completely eradicated. She was utterly devoted to her two adult children with autism, and will be mourned by all who knew her.
Despite her myriad contributions, when it came time to select the first honoree for the Robin Sims Trailblazer Award, the choice was obvious. Bobbie Gallagher, an Ocean County resident and herself a mother of three, two of whom have autism, was the individual who most represented the same caliber of commitment and constancy in fighting for the rights of all individuals touched by autism spectrum disorders.
Our honoree, who by her own admission could not have accomplished all that she has without the help of her husband Billy Gallagher, has been working toward improving the lives of individuals with autism since her own daughter was diagnosed in the early nineties. She and her spouse were instrumental in soliciting the CDC to investigate a seeming cluster of children diagnosed with autism residing in Brick, NJ. While the study was inconclusive, it was the genesis for other vital studies that have assisted those with autism in the Garden State.
Bobbie’s work and alliance with United States Congressman Chris Smith, himself a tireless autism advocate, helped bring about CARA (the Combating Autism Reauthorization Act), which was passed by Congress in 2006, and H.R. 2005, a bill created to reauthorize the initial CARA act. She is a BCBA (Board Certified Behavior Analyst) who has offered many hours of her time to conduct trainings for parents and professionals through POAC Autism Services, as well as other autism organizations. For several decades, she has made an indelible contribution to our community.
In addition to all the “serious stuff”, she’s also a great mom, tough as nails, and a lot of fun.
I have it on good authority that Robin Sims, were she still with us, would have been thrilled by the selection of this particular individual. As I watched Bobbie receive her award at the Gala Saturday night, an honor capped off by the knowledge that the American flag had been flown over the Capitol in both of their names, I reflected on the torch that will soon be passed to my generation. We have to continue to make whatever contributions we can, both minute and monumental. It is imperative that we forge ahead on the path that has been set before us, one created by a labor of love.
And at the conclusion of Bobbie’s moving speech, as an entire room stood to honor both women in gratitude, I reminded myself it was one of those moments to say “thank you”, just this time out loud.
February 23, 2012
Gratitude Attitude
My Gratitude Attitude this week goes to both of my sons’ teachers, and their in-class aides as well. There have been a number of challenges tackled with both kids recently, and everyone has pitched in and done their part. We are so appreciative, thank you!
February 8, 2012
Gratitude Attitude
This week’s Gratitude Attitude goes out to Gary Weitzen, Executive Director, and Simone Tellini, Training Coordinator, of POAC Autism Services. Both have been instrumental in helping me get my play, “Raising Autism”, off the ground. All proceeds from the play will go directly to POAC Autism Services. Thanks to both of them, and for further information, go to their website at:
