February 29, 2012
After a ten day stomach flu hiatus, I giddily place two happy kids on their respective busses, wave to them, and head back to the house. This was a particularly virulent strain of the winter virus, pretending to disappear at certain points, then once again rearing its ugly head when we least expected it. Jeff and I made bets as to which of us would get it first, but somehow we managed to dodge that bullet (no character in Macbeth had anything on us this week when it came to hand-washing and Purell).
I’ve accomplished absolutely nothing of a personal nature, but on the bright side, every linen in my house has been washed three times, and we’ve discovered the most fabulous rug cleaner EVER (it’s called Kids ‘N’ Pets, and it’s MAGIC). After one last wave to Justin on his yellow chariot I step over the threshold into our foyer, survey the land, and take a deep breath. It is so very, very, quiet.
How I love the sound of freedom.
I have never been very good with large swaths of unfettered time spent hanging out in my abode, so the last week-and-a-half has been fairly torturous for me. I’ve always liked taking the kids places, even insisted on it in the “dark days” when convincing Justin that leaving the house wouldn’t summon the Apocalypse. I was that crazy teacher who actually enjoyed field trips, and loved to travel in my personal time when finances would permit. This last chunk of time, spent mostly following Justin from floor to floor making sure we wouldn’t witness the return of his last meal, was wearing for me.
I started a half-dozen projects I never finished because Justin would leave the room and I’d follow, which meant my visual cue was gone, and I’d forget why I went there in the first place. Other than keeping the two kids alive (which clearly is important), I didn’t feel like I had a purpose. That “down time” is when I start contemplating my kids’ futures, and mine.
And some of those visual images are not so pretty.
Recently I read an article on NorthJersey.com regarding adults with autism and their care, and I was reminded that no matter how difficult some of our days here seem to us, at least both of my children have a safe and stimulating place to go most days of the week. The daily reality for families in New Jersey with adult children on the spectrum is not nearly so bright. My native state is currently experiencing a serious gap between the amount of adult services available, and the number of adults with autism looking to join these programs. One of the largest issues that stymies would-be providers is, of course, funding.
Somehow, everything always comes down to money.
According to the author of the article, Mr. Harvey Lipman, it seems that although the Division of Developmental Disabilities (DDD) does provide some funding for each individual, the truth is the cost of caring for that person far exceeds the monies provided. Since non-profits are only allowed to make up the difference through charitable fund-raising, a group’s ability to create new programs to meet the burgeoning need for them is often stopped in its tracks due to lack of funds.
In a further twist that makes providing opportunities more difficult, the DDD will no longer fund the agencies directly to initiate programs. Instead, funds will be placed directly in the hands of the families themselves. While technically this enables parents to pick and choose among existing programs, the reality is that the current programs may not meet their adult child’s needs.
If that is the case, families are then put in the position of signing up for a program that does not yet exist, hoping that other families will do the same, and then waiting for that program to come to fruition. In some cases, this has meant a year or more where a parent is required to be home with their adult child, day in and day out, with no guarantee that the situation will improve any time soon.
For any adult with autism (or their parent) who wants to get out of the house as much as we do here, this situation is untenable.
There are many divisions remaining within the autism community, although I see the gaps between different factions have lessened over the years, which is encouraging. My kids remain in single digits, but I’m beginning to watch my friends with teen-agers start to contemplate some really difficult decisions, which puts them on one side of the divide, while I remain on the other.
Over the past few years I’ve listened as friends and acquaintances have thrown out these queries to the world: Where will my child live? Will he have anything to do all day other than stream videos on his iPad? Will we have adequate child-care for my adult daughter, and one day be able to attend our parents’ funerals? Will I spend the rest of my life as a permanent caretaker?
Contemplating these issues definitely puts having two kids with the stomach flu into perspective.
Everyone keeps talking about the tsunami, the tidal wave that’s burgeoning now and will continue over the next decade, where my eldest son will one day join the fray. To me however, the concept of a tsunami conjures up images of great noise and chaos, a very public display of uncontrollable destruction wreaked. I think the reality for many families will be no less damaging, but perhaps a lot quieter.
Careers will be relinquished far earlier than desirable so that parents can babysit their adult child. Events will be missed due to lack of child-care, perhaps a wedding here or there, or a seminal event like taking a son or daughter to college for the first time. Worst of all, families may watch their offspring’s skills erode as boredom and malaise set in, and might witness the undesirable return of aggressive or self-injurious tendencies. Perhaps within the walls of families lacking viable options of productive engagement for their adult children, chaos will reign as well.
Or perhaps, it will just be very, very quiet, without the freedom.
To read the entire article, please see the URL below:
February 27, 2012
“Elmo should go back to Sesame Street, Mommy”, said my youngest child as he hunched down in his stroller, trying hard to avoid the wind whipping mercilessly around Lakewood BlueClaws stadium on that early April morning last year. Zach thought the lifesize Elmo running around greeting kids was lost, and wanted to help him find his way home. It took some explaining for me and my mom to convince him that Elmo was fine, and we were indeed going to stay for the first of several POAC Autism Services walk-a-thons. After we calmed him down I had the opportunity to look around, and was excited to see that thousands of people from around the state were donating their money and their time, walking for a cause that perhaps has completely infiltrated their lives, and their hearts.
I know it has done so with mine.
As my little family of three wove its way through the crowds I spent a few moments taking it all in, the people ensconced in boldly colored t-shirts proclaiming their love for someone on the spectrum, the vendors and sponsors with their brochures and enticing crafts for little hands. I could only imagine how much planning it took to create this day, what combined effort and expertise went into an event of such magnitude. Every face I walked by seemed cheerful, from those hawking autism “accessories”, to those preventing an unhappy child from a meltdown in the stands. There was a palpable aura of peace here, of parents stripping away the confines of a sometimes harrowing existence, and simply reveling in a day, worldwide, about us.
In what seemed to be no time at all Zach conquered three moon bounces, a playground, and a multitude of crafts, and it was time for the exercise portion of the day to commence. Gary Weitzen, executive director of POAC, descended to the bottom of the stadium to address the crowds, and it seemed as if even those children and adults who were vocally stimming quieted a little, were loathe to miss a word. He spoke of his gratitude to everyone who contributed both physically and financially today, to those who continue to underwrite an organization which is the largest provider of free autism trainings in the entire state. Gary cheerfully reminded the crowds of all that POAC Autism Services does for families who might otherwise have limited recourse to recreational activities, always for no cost. At the conclusion of his speech we were free to walk, to continue to take steps in the right direction to help our children, our community, and our hearts.
I paused for another moment before we began the sole loop my family would participate in that day (a four-year-old has his limits with philanthropy), and as the sun slipped over an awning that had previously provided shade I was required to squint to take it all in, to view the masses moving in quiet solidarity around the circumference of the field. There were open spaces of course, but as I remained still, I noticed that slowly, steadily, they were being filled, as some teams lagged behind, and others proceeded at a quicker pace. I knew if I stood there long enough I’d behold one great, cohesive circle of commitment, seamless in its synchronicity of volunteers, parents, children, teachers and therapists, all striving mightily to fill the gaps.
And filling the gaps is exactly what POAC has done so beautifully for well over a decade now, and I’m certain will continue to do so for many more to come.
Zach looked up at me impatiently, imploring me to return to the relative warmth of my car and take him home for lunch, and I conceded to his desires. I took one last look back from the threshold of the stadium, and was rewarded by a thinning of space, of the blankness between what has been offered to our children, and what should be provided to them. I am so grateful this organization has stepped up to help erase those voids, so appreciative of all those who made it possible to be here today. Once again, we found ourselves a part of a community who cares. And I was reminded anew of what Gary had so eloquently communicated to us all at the POAC Gala, a few weeks before, in his welcoming speech.
We are family, indeed.
If you would like to contribute or participate in any of the five POAC Autism Services walk-a-thons, please see the link below:
February 23, 2012
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 21, 2012
I check my watch for the fifth time, and my timepiece tells me in no uncertain terms that one of my children is indeed entering his second hour of testing without either of his parents present. I have to smile, because this would never have transpired if it was Justin’s appointment. Through this gift of time it appears I may even have mastered the equally daunting tasks of learning how to text AND delete emails on my new smart phone, so the minutes without child have been well-spent.
My husband is just about to go in search of snacks when we hear the double-doors on the far side of the waiting area crash open, and a bundle of energy over three feet high runs the expanse of the room and crashes onto my lap. “Mommy, I’m here!” he announces to the sparsely-filled room, and the three adults surrounding him grin, certain that everyone currently inhabiting CHOP (Children’s Hospital of Philadelphia) is aware that he is indeed in residence.
“He did really well” our kindly psychologist, Dr. Iadarola, informs us, and Jeff and I begin to gather the twelve bags that consist of either boy’s entourage when we take them on doctor’s visits. Zach is soon badgering us for snacks and juice, and we promise him he’ll have access to both when we return to the examination room. We’re about a third of the way through our initial visit at CHOP’s Autism Treatment Network (ATN), a program we found out about from the Autism Speaks website.
We’ve taken him here today in part because he’ll be entering kindergarten in the fall, and we thought he should have a comprehensive examination prior to that hallmark event. We’ve also chosen this program in part because the allure of having him evaluated by a cadre of professionals whose expertise is actually in the diagnosis and treatment of autism spectrum disorders is too great to resist.
As I’ve mentioned before, it doesn’t take much these days to make me happy.
Now that Zach has concluded the “exam portion” of the visit, which included an administration of two tools created to assess his level of involvement on the spectrum and his IQ, it’s time for his parents to be interviewed. He’ll spend over an hour out of the room with the lovely ATN receptionist, who will learn more about dinosaurs than she ever wanted to know in one lifetime.
The document which will be employed by the psychologist is called the Vineland, a diagnostic tool with which I am so familiar I offer jokingly both to ask and answer the questions if it will save us all time. Jeff and I dutifully (and humorously) respond to queries about his development, self-help skills (fabulous except when it comes to chores), and desire for social engagement (no issues there). At the end, the psychologist says this was one of the best “Vineland interviews” she’s ever had.
Gold stars are distributed to both me and Jeff.
At the conclusion of the interview a slightly weary receptionist returns our completely wound-up child to us. After a small interlude, in which our psychologist and nurse practitioner for the day will inform our developmental pediatrician of their findings, the final portion of the appointment commences. During the last hour of our visit Zach will be poked and prodded a bit by the nurse practitioner, an event which he will not take to with great zeal. A magic marker will be thrown to the floor in protest, and after half a dozen firm requests and a bit of “protest-flopping” on the cold tile of the exam room, the offending writing tool will finally be returned to its rightful adult owner.
A dozen different dinosaur pictures will be drawn, the last of which Zach will utilize that errant marker to poke our developmental pediatrician in the face, just to make sure she takes in the entirety of its glory. For this last portion of our day he was, in the words of my late grandma, “quite a pill”, and his parents couldn’t be happier, because that behavior is exactly why we’re here in the first place. We’re pretty certain Zach is exhibiting some symptoms of ADHD on top of his mild autism, and we’re here to see if the professionals view him that way too.
Dr. Amanda Bennett, our developmental pediatrician that afternoon, asks us if this is the type of behavior we sometimes see at home, and we respond in the affirmative. She knows that variations on this theme are sometimes acted out in school because his teacher has filled out a Vanderbilt ADHD Diganostic Teacher Rating Scale on his behavior, a form which was really helpful to her in preparing for our visit.
We inform her of behavioral strategies employed both at home and in the classroom, techniques I used with my own students that I could recite in my sleep. I tell her that at our fairly recent parent-teacher conference I had shared with his beloved educator that in many respects, any atypical behavior Zach was exhibiting was more reminiscent of a child with ADHD. I had said to her that although the signs of autism still existed, I felt they were far less prominent that his impulsivity. I admit I’d wondered if she would think I was delusional, but thankfully, our opinions on my boy seemed to coincide.
It’s lovely when that happens.
Once Zach is again buoyed down with pretzels and liquids, Dr. Bennett and Dr. Iadarola go on to share their findings with us, as Jeff and I listen raptly. As expected they still find him to be on the spectrum, but admit they were on the fence about it. They shared with us that being privy to his past history of regression, added to his being the sibling of a child with autism, were the two facts that pushed them over that proverbial fence. Our team of professionals goes on to state that they concur with our thoughts that he does indeed have a co-morbid disorder of ADHD (approximately 60% of children with autism have another disorder as well).
They also inform us they feel his parents and his school already have appropriate behavioral strategies in place (yay for us!). Dr. Bennett closes with mentioning studies that suggest that the most effective over-all strategy to address ADHD is to combine behavioral techniques with medication, and mentions there are a myriad of said medications available if we choose to go that route.
While it’s not exactly our dream to medicate our child, it’s so refreshing to know there’s choices available if we one day need them.
Dr. Bennett promises us a list of recommendations once their computer program allows her entry again, and the next day we’ll find her good to her word. Our visit is concluded, and I realize we’ve been within the confines of CHOP for almost five consecutive hours. None of us (particularly me) has cried, and every member of the team has appeared exceedingly knowledgeable, and treated us with courtesy, and respect.
After a few horrific encounters with “professionals” over the years, I insist on the latter.
All in all, Jeff and I were very pleased with our experience at the ATN at CHOP, and will definitely have Zachary continue with the program. Of course most of the reason our expectations were met was due to the particular professionals who were on duty that day, so I can’t promise every encounter would go as smoothly, or be as helpful as this afternoon was to us. If any parents out there are looking for kind and compassionate professionals to conduct a thorough evaluation of a child they suspect may be on the autism spectrum, or are just looking for a change of practitioners, I couldn’t recommend this route more highly.
And to all our wonderful practitioners, a grateful parent once again says thanks.
February 18, 2012
“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 14, 2012
Justin rushes in the door, stops for several seconds to ditch his sneakers so my cry of “shoes!” won’t follow him down the hallway, and heads for the refrigerator. Since recovering from the nasty flu that I’m certain made him lose a clothing size he’s been ravenous, and I tend to get out of the way and just let him fulfill his needs. After almost tripping over his coat that I’ll remind him to hang up for the millionth time (in some ways, all kids are the same), I walk into the kitchen with his backpack to check on his progress. He’s already done a refill of the container holding his favorite snack, and is accompanying his meal with his preferred segment of “Up”. I take the moment to reach into his backpack for his iPad and any goodies hidden within, and my hand brushes construction paper bundled in with his softest gloves. I extract it from its warm nest, and smile.
It’s my valentine.
The boys’ teachers have always been great about finding the time in school for the kids to create their exquisite constructions. Over the last few years Zach has presented me with hearts of multiple shapes and sizes, with loving inscriptions proclaiming his feelings for me, and brightly colored drawings to accompany the sentiments. He has proudly proclaimed “he did this!” every single year since he started pre-school, and has made a point of bestowing his gift upon me with great gusto. Zach completely understands the ritual, has hounded my husband two years straight to make sure he got Mommy “something”.
I love this child.
Justin, however, has been a different story. Every year he’s come home with his own version of valentine’s treasure, but try as I might, he’s shown no interest in watching me open it. I’ve tried at mealtimes when he’s more focused. I’ve attempted to have him hand his original creation to me, but to no avail. The giving of gifts has been a non-event to him (receiving being far more fun in his opinion), so I’ve let the Valentine’s exchange go.
Except this year, I don’t have to.
As my son’s rectangular message escapes its confines I see Justin’s head whip around, and the whisper of a smile graces his mouth. He abandons his much-preferred DVD to walk the few steps across the kitchen to me, and gently takes his masterpiece from my fingers. He closes it along the crease, smiles, looks me straight in the eyes, and returns it to my grasp. I open it and exclaim over both its beauty and the message within, the “I love you Mom” I can see he’s had assistance scribing, but has still been wrought by his own hand. Justin throws his arms around me, inclines his head for the “forehead kiss” he sometimes prefers to the real thing, and retreats to his favorite film. Connection made, moment concluded.
Happy Valentines Day to me.
February 13, 2012
I open the back door of our SUV, and instead of receiving a hug from my usually happy and active post-horseback-riding boy, I view instead a morose, still child, with tears brimming from his eyes. I release Justin from his constraints and he slides quickly out of the car, agitated, and heads toward the street. This is the opposite of his Saturday routine, where he generally runs toward the house excitedly, throwing himself across the threshold in pursuit of snacks. Today I have to block him as it looks like he’s trying for tarmac, but just at the lip where street and sidewalk meet, he stops. He puts both hands on my shoulders, gives me a look more of hurt than of anger, and buries his head in my chest.
We make it back to the house, he sliding along reluctantly as I lug boy and bag back to safety, his mother simultaneously trying to puzzle this one out. Even though my eldest can’t talk, and at times there are no icons for what he desires on his iPad, I generally (and thankfully) often comprehend his needs. As the door bangs open I watch him run a few feet into the foyer, stop dead in his tracks, and regard the archway that divides living and dining room. Jeff comes into the room, and we hear a slight sob emanate from my son.
We then witness him run behind the couch, lift up a “sedated” helium balloon held captive by its plastic bag, the one we bought for his brother’s “kid party” that we’re hoping lasts for the family fete too. He sinks onto the sofa in despair, and I whip out his communicative device, cajole him into enough of an upright position to access it, and wait. Justin runs his hands over wet eyes, gives me one last forlorn look, and hits several icons. The rather flat, atonal voice of the iPad queen blurts out “I want. My birthday is. May 12, 2003”. My husband and I look at each other as Justin buries his head once more into our accent pillows.
Justin had seen the balloon before we left. Upon returning, he noted the dearth of cars on the street which would signify his guests’ arrival. The absence of the banner strung along the width of our home, the one always heralding an impending celebration, was the last straw.
My boy thought today we’d be hosting his family birthday party.
Truth be told, numerous thoughts fight for purchase in my tired mind at that moment. I think about how this kid just used visual clues he hasn’t witnessed in a year to make an assumption about this day. I consider how he’s clearly distraught, but hasn’t gone after either of his parents to protest the fact that his birthday will not be celebrated this Saturday. Finally, I mull over how truly unpleasant the rest of our afternoon might be.
I admit, that last one gets a lot of attention.
Despite the fact that the rest of our day may be spent in what I like to call “survival mode”, I have to say, I’m impressed. He didn’t miss a trick. He communicated his needs. And as I watch him take a juice box from my husband’s hand, it even appears he’ll be rising above the insult that his parents won’t be celebrating his birthday three months early.
We always assume comprehension with Justin. But sometimes I think he understands even more than we think he does.
Soon, my boy is responding gleefully to tickles from his beloved dad, and I watch as he lurches off the couch, grasping his father’s outstretched hand. They’ll be heading upstairs to computer games only Jeff knows how to command with any aptitude whatsoever, and it seems that our “gaffe” will be forgiven. As they ascend the staircase my spouse throws me the “we dodged that one” look, and I smile, because to Justin’s credit, we did.
I think back years ago to some really dark days when my youngest was a toddler, and I wasn’t certain he’d ever communicate in any way other than screams and sobs. My mantra for that period was “he understands more than you think, he’ll get through this, together you’ll find a way”. It took a long, long time, and there were more than a few bumps in the proverbial communication road.
But finally, it does appear that my son is finding his way.
February 9, 2012
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 email@example.com, or call (732) 903-5840. For further information, please visit: http://bricksepta.org/pdfs/Septadanceparty.pdf
February 8, 2012
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:
February 5, 2012
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.
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.