March 23, 2013
Kick the Autism Bucket List
As I approach fifty (more rapidly every day it seems), my mind has naturally begun to ponder what I’d like to see accomplished in the world of autism during the last half(?) of my existence as I shoot for that three-digit lifespan. I have personal goals of course (learn how to use my phone, drop those last baby pounds from 2007), but quite honestly I have my own “autism wish list” as well.
Some of these stem from personal experience, some are garnered from the news, and some, to me, just seem to make perfect sense. In honor of autism awareness month, which is coming in April, I’d like to share a few points from my autism bucket list with you, and invite you to respond with yours as well. As Ms. Clinton said it takes a village (or in our community’s case, a galaxy), and I’d love to know what changes you’d like to see in the autism landscape to come.
1) First, since Virginia didn’t recognize Justin’s autism diagnosis back in the day (which forced me to be his primary therapist thirty hours a week for almost a year-and-a-half), I’d love to see legislation in Virginia which requires that adequate Early Intervention therapies be offered to children under three who are diagnosed with autism.
2) Help introduce legislation requiring every state to require teachers to take an autism certification program prior to teaching children with autism so they are familiar with this population. Duh.
3) Have a viable, appropriate employment opportunity for every differently-abled adult out there who wants one. Amen.
4) Have a viable, appropriate residential opportunity for every differently-abled adult out there who wants one. Double amen.
5) Have Tina Fey and Amy Poehler star in my autism play (okay, this is the fantasy wish, but a girl can dream).
6) See the Autism Speaks Autism Treatment Network sites become the go-to place for autism diagnosis and treatment in our country and Canada.
7) Get my books published and donate fabulous amount of money to Autism Speaks and Parents of Autistic Children (again, a girl can dream BIG).
8) Have Fairfax County Virginia schools adopt my anti-bullying program (and have the opportunity to travel down there to help implement it!).
9) See my beautiful eldest boy reside in a place he loves, and have access to riding those horses he adores.
10) Watch as Zachary is sworn in as President (or becomes a fireman, his newest passion, either way we’re good).
Thanks in advance for your contributions!
January 6, 2013
Cleaning House
This past fall I took a bit of a hiatus from writing as much as I usually do, and instead took a good long look at the state of my house. Topically, it wasn’t in such terrible disarray (that is if you ignored my dining room and kitchen tables, the two Bermuda triangles of my home where papers seem both to congregate and disappear with impunity). On the surface things didn’t look too bad, but really, I knew better.
I’ve been spending most of my free time the last six years writing a book (shameless self-promotion to come), contributing to magazines, concocting my play, and of course penning this blog, and have wantonly ignored the shelves and cupboards of my helpless home as a result. This fall I knew it was time for a colossal “spring cleaning” when my youngest got into one of my bureau drawers and asked if he could color one of Justin’s Christening cards.
I am a bad, bad housewife.
I am also however a girl who loves a good project, and I dove into reclaiming the inner sanctum of my abode with my usual enthusiasm, and found it all quite cathartic. A sushi-making kit from 2002? Disgusting, and gone. NJ Monthly’s Best Eats from 2006? History. Pants I haven’t worn for multiple unpleasant reasons since the first Bush administration? Donated. My kids’ former Halloween costumes? Safely ensconced in their closets.
I am not that heartless.
I saved my bedroom for last, in part because I knew this would be the biggest job, and in part because of potential minefields awaiting me. Until a month ago I had filed and saved perhaps every single piece of paper documenting both boys’ journies with autism, all categorized neatly in manila folders, and organized in my own particular fashion that worked for me.
To be fair to my hoarding predilection these documents were incredibly helpful when I was writing my book, as my memory was pretty shot by the time we left Virginia, and reclaiming my New Jersey territory didn’t seem to jostle it. I used a number of these papers to help me remember those early days of Justin’s pre-diagnosis, and of course everything that happened afterwards. I even used some of them to help construct the “Zachary section”, even though my writing pretty much occurred just after the events at hand.
It sucks getting old.
The truth is the information was invaluable, but I hadn’t looked at those files before my “purge urge” last month, nor have I missed them since. As sentimental as I am, I do not need to retain for posterity every single art project my children have created since birth. Potty training how-to’s can go to the landfill (hallelujah chorus twice for that one). Gluten/casein-free recipes I downloaded from the internet can follow suit (in part because they usually suck, and in part because if I haven’t made them in five years, it’s probably safe to assume it’s never going to happen). Discarding these files was easy, as I employed the McCafferty “year dictate”- that is, if I haven’t opened it since last Halloween, to the rubbish it must go.
And for the most part (except for my friends’ birthday cards, which I am saving for my nineties as a future pick-me-up), I remained faithful to the rule.
Eventually I got to the core folders, the ones documenting Justin’s progress through Early Intervention and school in two different states, and I took a moment to peruse a few of them, all literally as thick as a hardcover George R.R. Martin. Encompassed in manila were all of his progress reports, assessments, and goals for the future. I let my eyes wander down yellow pages formally part of an often official triplicate, checking dates which made me recall where I’d been both emotionally and physically when they’d been filled out.
Some of Justin’s targets revolved around socialization, primarily that he would one day have a friend. Many of the papers outlined strategies to tear him away from his perseverative pursuits, all hoping that he would one day engage in more “typical play” than he did as a toddler. Most of the goals centered around communication, either encouraging him to expand his sign repertoire, or soliciting those coveted vowels and consonants that almost completely disappeared after his first birthday. All were designed to change the core of his behavior, some of the essence of who he is.
I admit, even after eight years of knowing definitively that my child has autism, I had to put those files down for a breather. Chocolate helped.
And it hit me, as I sat surrounded by flimsy cardboard and discarded candy wrappers, that the focus of my goals for Justin have shifted radically over the last decade. The dreams I had for the infant who made me a mom nine years ago are indelibly different from those I long for now.
Most likely Justin will never attend college, have a best friend, or have a conversation with me that doesn’t include his iPad. Those realities still make me sad at times, but I often wonder for whom that sorrow applies. Justin is thrilled with his life. Frankly, my husband and I reflect frequently upon the fact that he is often the happiest member of this household. I have the gift, and it is a gift in the world of autism, of knowing that if I can keep him safe, engaged, and challenged throughout his eighty years, his will be a fulfilled and productive life. At the end of the day, if through luck and hard work I can procure those realities for my son, his will remain a joyful soul. I no longer want to change who he is.
I simply want to enhance his life as much as possible.
I gathered up the files surrounding me, and unceremoniously dumped them into a waiting garbage bag. I no longer have a need to return to the past. It’s time to focus on the future, on acquiring that safe haven for my firstborn son that includes a job he’ll enjoy, and hopefully access to those horses he adores. It’s time to recognize that although we haven’t reached those goals forged so long ago on paper, we’ve been successful with Justin all the same. It’s time to simply revel in him.
It’s time to purge.
December 12, 2012
Autism Treatment Network (ATN) at Children’s Hospital of Philadelphia (CHOP)
At the conclusion of a routine sick visit eight years ago, my son’s pediatrician told me my boy had a severe and lifelong neurological disorder by perfunctorily shoving a batch of miscopied articles into my shaking hands, all of which contained the word “autism” in the titles. He then quickly and summarily left the room.
He wished me an offhanded “good luck” before he departed, leaving me to gather the pieces of my shattered soul along with the detritus that comes with any toddler. This pseudo-diagnosis was delivered to me so thoughtlessly not by any quack, but by a renowned physician in our area, one whose practice was fifteen minutes from the nation’s capital. He was the pediatrician with a waiting list to get in; the one whom everybody loved.
Through my grief and shock, and if I’m honest, my hope now that I knew what Justin’s differences meant, I felt an intense rage at having been informed this way. I vowed someday I’d try to do something about it. Now, it seems, I’ll get to have that chance.
The knowledge that my eldest son’s development wasn’t exactly typical didn’t come as the greatest shock to me back in 2004, as I’d been concerned about some of his behaviors for the previous eleven months. Still, I would have preferred to hear his doctor’s concerns rather than read them with one hand tenuously clutching those damning articles and the other attempting to keep my seventeen-month-old from falling off the examination table. I felt terrified, hollowed out, and numb all at the same time.
The detail that kept me sane was he had written the numbers of several excellent developmental pediatricians on the front page of one of the articles, so at least I wasn’t starting from scratch. Even as I gathered up my boy and his toys I had a partial plan on how to get the official diagnosis, which I knew would lead to the appropriate therapies I had no idea in that moment I’d be mostly conducting solo for the next fifteen months.
The contacts wouldn’t change everything, but they were helpful in that terrible moment. Still, the information was delivered so cruelly, and would lead to so many different referrals both for therapeutic practices and for diagnoses, that the entire experience was exhausting, and completely less than optimal.
When we had finally settled Justin into a routine about a month later I found in my few unfettered moments I would fantasize about a one-stop-shopping experience, one in which my pediatrician would have been able to deliver the diagnosis I had to wait another four months to acquire a state away. I also dreamt of spending my time actually delivering services to my child rather than gracing the waiting rooms of the myriad specialists we were directed to see, all of whom would hopefully ameliorate the co-morbid symptoms that so plagued my son, namely gastrointestinal issues and sleep disorders.
I wished desperately that we’d had a better experience. My heart still broke for the numerous parents whose children would continue to be diagnosed, some in that exact brusque and uncaring manner, many who would have their child’s condition revealed to them in a way that might make my experience look exemplary.
My eldest is almost ten years old now, and it’s been almost a decade since that devastating day, one which continues to haunt me. In the interim I’ve relocated my family to New Jersey for the educational systems and proximity to family, and we’ve had a second child, also diagnosed on the autism spectrum. I never lost hope for the one-stop-shopping experience, so when I heard about the Autism Treatment Network (ATN) at Children’s Hospital of Philadelphia (CHOP) over a year ago, I jumped at the opportunity.
As participants in the program both of my children could be enrolled and have access (if needed) to the services of a nutritionist, a developmental pediatrician, a neurologist and a psychologist all within the same hospital system. Specialists in gastroenterological disorders, metabolic disorders, and sleep disorders are available as well.
We would be asked to make the commitment to schlep to Philadelphia four times in the next three years with each child, but we could pull them from the program at any time. The ATN is primarily funded by Autism Speaks, and has seventeen centers throughout the United States and Canada. Its mission is to provide families of children with autism with state-of-the-art, multi-disciplinary care.
Last week along with several other parents I had the honor of being invited to participate on the first autism-centered Family Partners Program, an initiative dedicated to improving the delivery of services of the ATN to families with children on the spectrum. I was fortunate to spend the evening with Amy Kelly and Amy Kratchman (family advisors for the ATN) who are spearheading the program with the hospital, as well as with two intensely dedicated developmental pediatricians (Amanda Bennett and Susan Levy).
The forum was rounded out by several other parents of children with autism spectrum disorders as well as staff from the hospital and the ATN. While there are many goals the team wishes to accomplish, the main focus of the group is to provide feedback to CHOP and the ATN about programs, initiatives, research, quality and improvement projects that involve families with children on the autism spectrum.
Once the preliminaries (and the food, a definite bonus) were dispensed with, we got down to brass tacks. I’m not certain who first proffered up the idea, but fairly soon into the meeting someone asked the parents these questions: Would you prefer to have your pediatrician be educated and knowledgeable about your child’s co-morbid conditions? Would you like them to be able to treat these conditions? Finally, would you like to see the ATN in better collaboration with pediatric and adult physicians (since children with autism eventually become adults with autism) so that your child could be predominantly treated in-house?
As I reluctantly put down my Caesar salad wrap and looked around the room at moms nodding their heads in emphatic agreement, we all answered with a resounding “yes”.
Frankly, it sounds like paradise to me.
I know that some parents will read this article and be extremely skeptical that any type of collaboration will take place, much less lead to significantly improved delivery of services. The truth is, however, that we have to start somewhere. CHOP has already begun to consider a practice in which to pilot this collaboration, and the ultimate goal is to expand the collaboration to other pediatric practices in the region, with at least one provider in every practice being well-informed and educated about autism.
If you’re wondering why any double-booking appointment physician would be interested in this type of instruction, the ATN at CHOP has worked that piece out too. All pediatricians are required to carry a certain amount of MOC (Maintenance of Certification) credits to maintain their board certification, and this partnership would satisfy some of those requirements.
Given that I’m a “behaviorist” on the side, I was happy to hear that these doctors would not just be intrinsically rewarded. Time is in short supply for all of us. Physicians would not just walk away with an increased knowledge base about their patients- they’d have credits toward retaining their licensure as well.
Throw in a little chocolate, and it would be the perfect experience.
Of course, all of this is a huge undertaking, and its success ultimately resides in multiple practitioners desiring to deliver better services to beleaguered families, which is no small undertaking. I’m aware that educating one physician in every practice in the United States will take some time (perhaps the understatement of the year), but a number of other autism milestones took a great deal of hard work too.
It wasn’t so very long ago that Early Intervention was just a pipe dream, or that offering self-contained classrooms to autistic children who need that confinement was an unheard of practice. I’m certain this process will involve small and laborious steps. I’m also certain the ATN will succeed, and the moment can’t come too soon.
Somewhere out there soon, a baby will be born. In a few years his mom will approach his physician with her concerns, her worries, her fears. She may be told they’re nothing. She may be told to wait.
She may be told she’s right.
And if she is, hopefully she’ll be given the tools to help her child succeed in a compassionate, caring, and informed manner that won’t break her heart.
It all starts with a little hope.
For further information go to http://www.autismspeaks.org
November 30, 2011
Child’s Play
He sways precariously between two monkey bars, sweat teeming down his face, regarding the ground below with mounting trepidation. My youngest tells me to catch him, but I know he can reach the ground without incident, so I move a bit further away and tell him to let go. He regards me with a look that is either scorn or disbelief, but disengages his fingers anyway, letting gravity take over. Zach makes a soft landing on forgiving tarmac, rolls to his feet, and grins. “I was scared, but I jumped!” he shouts loudly, and a few children turn around to see what the commotion is all about. Then he’s up, running at what seems to his middle-aged mother to be lightening speed, off to the next challenge.
Finally, finally, he’s once again excited about the next challenge.
There was a long period of time after Zach regressed that he became a child we hardly recognized. He was so silent, desired mostly to be left alone, was only willing to engage in the safe and familiar regimen of organizing his Thomas trains. Anything novel suggested by his parents, grandma, or Early Intervention therapists was quickly rejected, often viewed with fear. This fright extended from new foods to books, and even toys, no matter how compelling we thought the latter might be to him. There were days I despaired he’d ever try anything new.
Now, he can’t wait.
This is our first time at this particular playground, and Zach is overjoyed to attempt new experiences. There’s the rope ladder he never would have clambered upon even six months ago, which he mounts with ease. I watch as he heads toward the swings, invoking my presence with a wave of his arm to summon me to a seat that used to scare him, but now makes him want to fly. There are his gradually more assertive attempts at friendship, his name, age, and request to play dropped almost casually in conversation, with rejection from older kids (or girls) not appearing to bother him a bit.
Subtle changes. Huge leaps of progress.
His adventurous air has extended itself to school, where he tells me he’s been trying to help his friends more lately, has even once shared a special toy without being asked (!). Practicing his letters so he can write to Santa is now a staple of his Mommy time, rather than a chore no amount of cajoling with demand/reward seemed able to satisfy. Finally, and perhaps most importantly to me, are his repeated tries to engage with Justin, with less and less facilitation by me and his father. This is happening despite the fact that Zach told me recently that “Justin didn’t want to play with him”, which of course crushed me, even as I tried to rally with a strategy that would render Justin momentarily fascinated by Aromadough.
Justin didn’t buy it. But these brothers are slowly making progress in their relationship to one another, and it’s glorious to see.
I end my musings when I see that Zach has stepped away from the giant slide, and is now contemplating sliding down a contraption that strongly resembles a fireman’s pole. My feet close ground quickly as I tell him he can’t imitate the girl in front of him who is most likely in double digits (and as the words come out of my mouth, I have to laugh at the fact I’m telling my child not to imitate someone). Thankfully he listens, turns, and throws himself back onto green plastic, which will take his newly exploratory soul back to earth, and into my arms.
Which despite his adventures, is exactly where he should be.
November 28, 2011
My Autism Play (a.k.a. What I Did Over Summer Vacation)
As I’ve mentioned before on this blog, since 2010 things have been going pretty well chez McCafferty (I had hoped the tide would turn with President Obama’s inauguration, but we had to wait another year). Everyone eats now, and for the most part everyone sleeps through the night as well (except for me). In general, that high-level angst we were enveloped in now seems only in evidence when Zach is not getting what he wants EXACTLY how, and when, he wants it. Fortunately, since I am a veteran teacher, this is a situation I usually feel extremely capable of dealing with on a daily basis.
When handling Zach, the fabulous Tina Fey quote from Prayer for a Daughter, “I will not have that Shit. I will not have it”, often comes to mind.
Even with the impending end of the world (again!), and the fact that scarves are the style and I still can’t figure out how to wear them, we seem to have reached a lovely little détente with autism in this house, an acknowledgment that it still lives and breathes amongst us, but perhaps isn’t the main things we talk about anymore. I believe last Tuesday, for thirty-seven consecutive seconds while I was making dinner, I actually forgot my kids had it.
Then Justin asked me to rearrange his book shelf for the five thousandth time that day, and I remembered.
The truth is, I’ve slowly realized over the past two years that I’m truly enjoying myself and having fun again, which was pretty much my main goal in life for thirty-six years before I became a mother. I’ve had to take some baby steps to return there, fought off a few mild panic attacks after having a good time for more than five minutes, until I realized my progeny were actually happy too. For me at least, it took a while to claw my way out of what Susan Senator so aptly named “siege mode”, a not-so-fun way of life within which the McCaffertys dwelled for a good half decade or so.
Trust me, I am much more pleasant to be around now. Just ask my husband.
Back in what I lovingly refer to as “good times” (or that year-and-a-half in Virginia where I crawled around after my autistic toddler six hours a day trying to get him to sign “ball” because our Early Intervention services sucked), I found myself working side-by-side both with my son, and that famous cycle of grief. I can clearly remember one particularly chill fall day, where I’d spent an hour with Justin building a ball “thingy”, soliciting great signs and extreme enthusiasm from him with ease, a double coup. When we completed our masterpiece Justin went to attach the final ramp to the tippy-top, and when he couldn’t make it click he became immediately distraught. Before I could intervene he simply smashed the whole thing to the ground, looked at me with what I swore was unbridled outrage, and threw himself to the ground in a tantrum I’m certain they could hear at the White House.
Through the caterwauling I recall thinking I’d missed Oprah’s Favorite Things for this. I admit, I was bitter.
I remember, as I tried to scoop up all the tiny plastic pieces I would certainly step on later, that I knew a year into the “therapy wars” that this wasn’t enough for me anymore. It had been twelve months since Justin’s diagnosis, and although he’d actually made a lot of progress in a number of areas, it was clear to me he wouldn’t be one of those kids who “recovered”. I also realized over the course of that year I’d made a mental shift, perhaps out of necessity, or to save my sanity. I was no longer striving to completely eliminate Justin’s layers of autism, banish them from sight.
I simply wanted the kid to find his damn happy place. Was that too much to ask?
So, I returned to that famous grief cycle and struck a bargain with the universe (nothing specific mind you, I like to keep my options open), one I will honestly confess was nothing but a win-win for me, which is how I like things. I made a promise to myself that if my child ever smiled more than he cried I’d move beyond therapy and folding laundry, and actually do something for myself, and the autism community as well. These things included (but are not limited to) writing a book/blog, creating some kind of fundraiser that could easily be schlepped around, and finally, a project me and my mom could implement within the public schools. So far, I’ve accomplished step one (at least five people RAVE about my unpublished “back-story”), and the blog is simply a joy. So, in an effort to keep true to my promise this summer I moved on to step two, and in my “free time”, I wrote an autism play.
Which, in case you weren’t aware, is exactly the next logical step for an ex-French major/housewife with one publishing credit to her name to undertake.
It’s a simple little endeavor, one which requires the actresses just to sit and read a script out loud, because at this point in middle age, I’m pretty certain I’ll never memorize anything again. I’m shooting for putting it on in April during Autism Awareness Month, even if it ends up being in my house (and trust me, that’s a serious possibility). I’ve had the great fortune of finding out last week that POAC, Parents of Autistic Children, has agreed to let me “produce” it for them as a fundraiser. If we can get people other than my mommy to show up to this play (she really liked it!), perhaps we can generate a little revenue for a great organization, and a great cause.
I’ll be writing about this periodically, so for now I’ll be keeping more details under wraps (I know, how will you survive the suspense?), but I look forward to taking you on my journey of securing actresses, begging people to use social media/witchcraft to promote this thing, and finding a venue bigger than my living room. Trust me, I’ll need help with a title (I suck at those), and a great song for us to walk on stage to (thinking “Lady Marmalade” from Moulin Rouge is fun, but perhaps a song about prostitutes might be a wee bit inappropriate). In advance, I am grateful for all the suggestions and support I know you will show me.
But most of all, I’m simply grateful for my sons’ smiles, and for enjoying the absolute luxury of trying to fulfill a bargain.
November 9, 2011
Love Thy Neighbor
I adore Halloween. The truth is, like my birthday, the revelry surrounding this holiday endures for an entire month, and if I could, I’d extend it all year (once again, much like my birthday). The love and reverence I feel for All Saints Day extends all the way back to the early days of my childhood. My devotion was ramped up considerably by my voracious reading about ghosts, goblins, and all manner of haunts, usually conducted with a contraband flashlight in my bedroom. It culminated with the excitement of wearing my mother’s homemade costumes in our town’s Halloween parade, the memory of which shames me, as my kids’ spooky-wear always hails from a plastic bag (thank God I scrapbook, otherwise he guilt would consume me). In short, I’m a groupie.
Last year, I even dubbed myself the Halloqueen. I am that serious.
I don’t think it’s possible for me to devote just one blog entry to this fabulous holiday, so I’m going to give you a bit of a preview here (I know, I’m such a tease), and I promise to regale you with the entire month’s events shortly. Today, I’m just going to focus on the grand denouement of the day itself, and a realization I came to as we paraded throughout our neighborhood, me and my mother, each with a boy in hand.
In addition to loving Halloween (and who doesn’t?!), I really love my neighbors.
It will be six years ago this January that Jeff, Justin and I left Washington, DC for the suburbs of Jersey, and I will say that the relocation did not occur without some trepidation on both of our parts. My husband and I had lived within the shadow of the White House for over fifteen years. Our social lives, and most of our friends, were encapsulated within the confines of the beltway. We’d both gone to grad school there, had taken our first stabs at “real” employment in our nation’s capital. For some odd reason, I never got lost while driving throughout the city (which frankly was another reason I mourned leaving the area). Fortunately, our family had the luxury of choosing where we lived, and Jeff and I both knew moving back to the Garden State would afford Justin more educational opportunities, as well as more access to family. We were grateful we had a choice.
But in some ways, for me, returning to where I grew up felt like a step backwards.
I quickly got over it, in part because I was insanely lucky my spouse could move two hundred miles away and keep his job, and in part because this was the best thing for my kid, and really, it’s supposed to be (at least in part) about him. Our first few days in our new residence were literally spent digging out from the mountain of paper our moving company had wrapped our treasures in (I recall thinking that if Justin hadn’t been at my mother’s, we would have lost him in the house). I’d had ambitious plans of getting out to introduce myself to the neighbors, but there was always another box to unpack, and since our son would be returning to us in seventy-hours, organizing became our priority.
I need not have worried, because our across-the-street neighbors came by with their lovely children and chocolate donuts (I immediately liked them), and the hopes that we had a child close to their kids’ ages. I remember my heart clenching a little as I realized our sons were in the womb at the same time, but knowing that unless my neighbors’ boy liked to spin things, he and Justin probably wouldn’t be playing together. I didn’t divulge our situation then, just thanked them for much-needed carbs, and a promise to visit soon.
Then Justin came back, six therapists from Early Intervention started working with him, and I barely left the house again until February.
It finally occurred to me after a month of hibernation that the families surrounding us might be curious as to why we only came outside to get the mail. One day, when I noticed a few of the locals were gathered across the street, I gathered a bundled Justin up in my arms, grabbed a few brownies from a box I’d managed to throw together, and took the plunge. We walked over hand-in-hand, and I introduced both of us to the gals. I explained that we weren’t in the Witness Protection Program, and that the cars constantly rotating outside our abode were from Early Intervention. I divulged that Justin had autism, and waited to see what their response would be.
Honestly, they couldn’t have been more kind.
The initial precedent that was set has endured for the past six years, and has ultimately included Zachary as well. The women in our corner constantly ask how the boys are doing, and genuinely want to know the answer. I know, without having been told, that the people in closest proximity to us have discussed autism with their kids, and told them to remain respectful to my boys, to always say “hi” when they come int contact with them. I’m also confident that if anyone ever spoke in a derogatory manner about my progeny, these same children would defend them to the hilt. I happen to have the great fortune to live in a community where children are still taught to have compassion.
Believe me, I’m lucky on that front too.
I realized that lately I’ve begun to take this universal compassion a bit for granted, and I shouldn’t. My Mom reminded me of how fortunate we are on Halloween, after running into the neighborhood clan on our trick-or-treat extravaganza, as ballerinas, witches, and monsters paraded past us with the sole intent of satisfying that devilish sugar fix. The woman who had initially welcomed us made a point of stopping, complimenting the boys on their costumes, and wishing them a happy holiday. She made mention of what a good boy Justin was at the last house, looking people in the eye, standing patiently, and taking only one candy when the bowl was proffered. She also noticed how happy he was to participate. These are all things he and I have been working on for years, small goals that have finally come to fruition. The other moms noticed too.
Validation and chocolate, hand-in-hand. Why wouldn’t I love this holiday?
I’ve been extremely lucky these past eight years in terms of Justin’s progress, and the community at large. There haven’t been more than one or two stares or comments directed at my boy, which I attribute to the work of the autism advocates who came before me. That universal acceptance has helped, given me one less burden to bear. The fact that I live on a street where my boys are not only tolerated, but welcomed, has meant the world to me.
And now, as Halloween comes to a close (sigh!), I just want to say thanks.
June 18, 2011
Search Field Day 2011
“Mommy, where’s Justin?” my four-year-old inquires for perhaps the thousandth time, and I suck back my irritation (a technique I perfected during my twelve years teaching in elementary school), and tell him again, “soon”. A minute after imploring him for the millionth time to “please stop kicking my mutilated shin” under the picnic table, Justin indeed makes his glorious entrance. It’s Field Day at his school, and the festivities commence with every class from age three to twenty-one taking a promenade around the front entrance, until it’s finally my son’s turn.
Zach starts waving wildly as Justin’s teacher approaches and salutes him, and I crane my neck to look for my boy, hoping he won’t make a break for us and want me to take him home, as he has been wont to do in the past. Seconds later he comes into view, clutching the hand of his aide, looking mildly confused since he’s never participated in this pageant prior to today. He steps down off the curb and sees me, his grandma, and his little brother across the empty parking lot, and stops dead in his tracks, holding up the entire procession. I hold my breath to see what he’ll do next.
And then, he smiles.
This isn’t just any smile. This is his hundred watt, “I can’t believe three-fourths of the people I love the most are here right now” smile. With mild prompting from his para he waves, then continues on his way, checking back periodically to see if we’re still there.
Trust me, we’re not going anywhere.
Frankly, as I sit on my cold folding chair and watch the students of Search Day School parade by me I am ecstatic, because even a year ago, I would not have been able to remain at this picnic table. Although Justin enjoys parties, in his mind I am generally his primary reinforcer, or the equivalent of Disney. During his early childhood years in his first public school placement, I spent many a desperate hour in his classroom trying to convince him that musical chairs and chips were a far better deal than going home with mommy. There were entire years in our local school district where I didn’t attend any of his parties save the one dedicated to his birthday, which killed his shutter-bug, stay-at-home, mom. It came down to this, as things so often do with autism- my having to choose to participate in a party which made me feel like a good mother, or boycotting the event and letting him have fun. I grudgingly chose the latter most of the time.
But as I look at him now, I realize at these events, I may finally be eligible for front row seats.
The children circle around the entrance way and reenter the building, as classes are staggered for this extravaganza, and it will be a good twenty minutes before we see Justin again. Since that doesn’t meet with King Zachary’s approval I take him on several walks around the premises, craning my neck back periodically to make certain we don’t miss Justin’s second debut. We wend our way back through brightly decorated picnic tables in time to see Justin march to the field for the first of his feats of strength, and I simultaneously watch my youngest commence meltdown mode.
This is completely inconvenient, as I seriously require commemorative photos of this event. Otherwise, my scrapbook will be devastated.
Just as I think I’ll have to do a “Sophie’s Choice” with my children, Jodi Ussuri, administrator extraordinaire, steps in and offers to take him off my hands for a while. Zach deigns to take her hand and walk/skip/hop/jump/run with her, which is not surprising since she has three kids, and is clearly a fun mom. When her babysitting stint is over, the words “bless you” accompany Zach’s tiny paw as it is handed back to me. These are words I frankly should have imparted to her, as the absence of my youngest enabled me to witness my oldest’s glory.
And glory, it was.
Sure, it was lovely that Justin carried an over-sized ball across a field successfully, then bounced on it as his classmates followed suit. Under his watch not one single tennis ball escaped the confines of a waiting barrel, deftly maneuvered for guaranteed capture by school personnell. He navigated a balance beam with relative ease, and at least attempted to sneak under the “luau-esque” wooden rods adjacent to those parallel lengths of wood.
In other words, Justin rocked Field day.
While I was thrilled by how far he’s come within the physical realm of things, happy to see him willingly and successfully participating in events requiring balance, concentration, and manual dexterity, there were a multitude of far subtler reasons I was grateful to regard these activities. Throughout every single request and demand, I witnessed my son’s eager compliance. I watched as he patiently took turns, neither rushing through nor attempting to avoid the task before him. Most importantly, I saw my son search for his family at every single station, executing his dazzling smile at us before switching to serious concentration mode, overjoyed we watched him perform.
Not only did he enjoy the festivities, he was ecstatic his family was there to cheer for him. Trust me, me and my mom are still hoarse.
Eventually, it literally rained on our parade, and students were hustled inside to consume their lunches while the three of us escaped to Panera for soups and salads (what a win-win day!). We returned to take home an excited Justin, a child happy to escape his routine whenever it includes going home early with me. As I walk him back to the car, I reminded myself that it’s not just the efforts of this particular school staff that have brought him to this place. In every moment of desired behavior, every nuance of glorious grin I received from my boy today, is the work of five schools, dozens of aides, teachers, specialists, doctors, Early Intervention workers, the fortitude of two parents, a patient brother, and the stubborn zeal of one determined grandma.
It takes a planet, not a village, to raise a kid like Justin.
We reach our waiting SUV chariot, he sees my mother and his sibling, and it’s like Christmas morning all over again. I strap him into his seat, kiss his forehead and tell him how proud I am of him, activate the GPS (just in case), and head for home.
And as we glide into traffic, I remind myself to live a little in the moment, and just be happy we’re here.
February 2, 2011
Yes Virginia, There Might be a Santa Claus
Back in 2004, when my husband, son and I were residents of the great state of Virginia, our eldest child Justin was diagnosed with Pervasive Developmental Disorder. He was only seventeen months old, which at that time was incredibly early to be identified, a fact which every professional we encountered told us was strongly in his favor. No one was suggesting he’d recover from autism, but the point that was brought home to me on every single one of our myriad doctor’s visits was this: the only thing the multitude of autism professionals can agree upon is that early, and quality, intervention can make a huge difference in the progress these children make throughout their lifespan. I remember even through my despair being thrilled we had figured out his issues so soon in his young life, and being certain that help, indeed, would come. My mom had told me how comprehensive New Jersey’s therapeutic services were for the under three set, and I was certain, since I lived twenty minutes from the seat of our nation’s government, that Virginia would afford us similar assistance.
Soon, it became clear, I was dead wrong.
After our initial consultation with Virginia’s Early Intervention assessment team, we were told the sum total of therapeutic hours we would receive monthly would most likely number six, and if we pushed it, possibly eight. Occupational therapy services were offered, as were speech. Applied Behavioral Analysis hours were not considered, as Virginia’s Early Intervention program does not recognize a diagnosis of autism, even though said therapy addresses the core deficits of the disorder.
Although Fairfax County had made the magnanimous decision to accept children into their pre-school autism program the fall after they turned two, age-wise, Justin wasn’t yet eligible to enroll. Frankly, that meant any type of help he would receive would have to come from me. It meant making my temporary leave of absence from teaching permanent. We had to hire a Board Certified Behavior Analyst to come in twice a month and train me and our therapy team, all to the tune of $1200 monthly, a sum that did not include what we also paid our private therapists. The hours that Early Intervention offered us were a joke. I had a year left until Justin could enroll in school, into a program I was not certain would ultimately be able to meet his needs. My husband’s insurance covered none of our private BCBA’s inordinately expensive, yet necessary, instruction. We were existing on one salary.
In short, we were screwed.
Eventually, the lack of Early Intervention services, coupled with the fact that spending thirty hours a week trying to teach my own child how to sign for “ball” is insane, propelled us to relocate to New Jersey. Within weeks, we were granted almost twenty hours a week of a variety of therapies, including the Applied Behavioral Analysis hours so crucial to his development. I remained present for all of those hours until he began school in the fall, but throughout this period I always had another adult with whom to share the workload with Justin.
Honestly, during those months I felt like I was on vacation. A really good childless, island-hopping, pretty drink-profuse vacation.
Ironically, not too long after we moved back here, some amazing parental advocates convinced New Jersey to pass autism legislation, which has enabled many families to seek relief from their insurance companies. Services such as speech, occupational therapy, physical therapy and those gold-plated ABA hours are now being covered at least in part if you’re a subscriber to certain insurance policies. The legislation hasn’t fixed everything. There are still many families whose insurance providers render them ineligible to this legislation, many of whom are paying for those services anyway, emptying retirement funds and taking out second and third mortgages. Although we are quite fortunate not to fall into the latter category, we still cannot pull from New Jersey’s autism legislation trough. Even though we reside in the Garden State, my husband’s insurance coverage originates in Virginia, and as yet, comprehensive reform has not passed in Richmond.
Until, hopefully, today.
On January 27th, Virginia’s House Labor and Commerce Committees passed HB 2467. Virginia’s Senate Finance Committee is scheduled to hear their already passed version of the senate bill early this month. Today, on February 2, 2011, after many hours of diligent, behind-the-scenes work by politicians, parents, and advocates, Bill 2467 will finally grace the floor of the house as well. Even if this bill is signed into law I’m not certain it will help us financially, although it might assist us in mitigating the costs of Justin’s weekly speech therapy sessions. It will be months before the bill becomes law, and probably many more months before Jeff will be able to weave his way through the morass of his new insurance company’s rules. Ultimately, a pass in both the house and the senate may not benefit us at all.
But there is no doubt it will bring a sigh of relief to a multitude of families residing in what I consider to be my adopted state.
I have to share that I don’t ask the universe for much. I am, however, keeping all appendages crossed that this bill, this long-awaited piece of legislation, will pass. I’m hoping it becomes law, because children with autism are being diagnosed earlier and earlier, sometimes years before their public educational system is required to accommodate them. I’m eager for this legislation to pass in Virginia so that children can have access to services when they need them, not just when they’re deemed eligible for school. For once, I’m actually praying for the words on this bill to transform into law so that no other family will share my experience of those long, isolated fifteen months, endured just minutes from our nation’s capital.
I hope you will join me in thinking positive thoughts, so that for Virginia, there may indeed one day be a Santa Claus.
December 16, 2010
Stand Up
We were running a few minutes late (as usual), but my husband assured me as I frantically attempted to find the intake number for the hospital that we’d make the appointment in time, and of course, he was right. We slid into the parking lot with two minutes to spare, and I barked out orders (again, as usual), telling Jeff to grab the boy while I snapped up the gear and raced to the sign-up desk. There was a little validity to my anxiousness, as I’d been instructed on the phone that the first visit required a myriad of forms and questions prior to seeing the psychiatrist, and it was imperative we be punctual. I sprinted up the stairs of what appeared to be a restored mansion and waited impatiently behind another mom who also appeared to be out of breath, and allowed myself a sigh of relief when I informed the secretary of our appointed hour and not even an eyebrow was raised. I’ve learned, after dozens of such visits with my two boys, that the person at these appointments whom you really want to like you is always the secretary.
We’ve schlepped up to north Jersey on this uncharacteristically cold November day because we’re tentatively shopping for a new psychiatrist for Justin. Jeff and I are hoping to find someone not only to dispense and advise us on medications as our current one does, but we’re also eager to think out of the box a bit, and align ourselves with a practitioner who may even offer to enroll our son in some experimental studies some day. It’s not that we don’t like our current therapist, although we’ve had a few issues in the past that have since been resolved (see Summer Solstice for our mental health professional back-story). I had my hissy after the debacle of the “there’s no waiting area for your autistic son, try the hallway” and the situation has since been resolved, including both a shorter wait-time for our appointments and an enclosed and safe area for us during the interlude between patients. That one particular afternoon made me long to ask our shrink for my own Xanax prescription, but the situation was subsequently addressed to my satisfaction, and I’m a big enough girl to forgive and move on.
Sometimes.
That day did make me think however about alternative practitioners, about the wisdom of not remaining with the “status quo” solely because our patient-doctor relationship was comfortable, and equally importantly, because I knew how to find the psychiatrist’s office. Despite the five thousand other things my husband and I need to accomplish during the day I asked him to conduct a bit of research for me this summer, and in July we placed ourselves on the waiting list for one of the more prominent hospitals, and settled in to wait until November for the call that would let us know the date of our pre-Christmas appointment. Here in Jersey, any professional for autism worth their salt requires approximately a six-month wait, and although neither my husband nor I was really jazzed up about wading through two more seasons of Justin’s penchant for tearing things to shreds or flushing expensive game cartridges down the toilet, we knew we really didn’t have an option. Hell, it seems as if every other kid in the Garden State is on the spectrum, and there’s only so many doctors to go around. Jeff and I accepted we’d have to suck it up and wait.
When Thanksgiving came and went without a call however I urged Jeff to phone them again, and after another week and several messages my husband finally made contact. It appeared that after five months of “patiently” waiting, almost half a year of watching my son (and my toilet) suffer despite our behavioral interventions, that the intake people had forgotten to place our names on the list. They had a record of our call, validated our communication with them in the summer, but wouldn’t honor their mistake. We were now looking at an appointment in March at the earliest, with the possibility of an earlier visit if there was a cancellation. This meant my boy would be waiting at least eight months to see this new doctor through no fault of our own. Since it was now almost December, we knew even if we contacted another organization we wouldn’t be gracing its doorstep until summer. Frankly, unless we wanted to try another state, which was just a wee bit impractical for follow-up visits, they had us over a barrel.
To say the least, mommy was not pleased.
In the distant past I would have let this situation go, particularly if it only involved my physical or mental health, would not have felt inclined to make any waves. But this was my child’s health at stake, his well-being compromised because of simple human error. I was aware I might not be able to alter what had happened, but I also knew I just couldn’t sit by and not voice my complaints (okay, outrage, let’s be honest here). Somebody had made a mistake, and come hell or high water, this doctor was going to find out about it. Heck, maybe she’d even venture to her office on a weekend for us to make nice.
Sadly, these thoughts are what comprise my fantasies these days.
So, I called. I got her assistant’s extension, was placed into voice mail, and considered hanging up and waiting until I could speak to a “real” person. Since our past history with this establishment hadn’t been so stellar with return calls I realized I might be the one required to do the dialing, and given my limited capacity to remember anything these days, I knew this might not be the best choice to make. I waited out the recording, and after five thousand instructions from the well-modulated voice of our psychiatrist’s right-hand “man”, I finally heard the dulcet tone encouraging me to leave a message.
And, I did.
I used my grown-up-but-respectful (believe me, I’ve had to practice it) tone of voice, and let the powers that be know the specifics of our problem, and that the error had been on their side, not ours. I informed them that my child was suffering, that even if we went with another agency we’d never see a professional before the end of the calendar year, and that was on them, not us. I asked the void of voice mail to come up with a solution to the situation, sooner rather than later, and let them know that an appointment at Easter was not an acceptable way to rectify this error. Finally, I told them I expected a return call in a timely fashion.
Believe it or not, I got one the next day.
And with a few minor miscommunications later, one in which for two minutes I contemplated the possibility that Justin had missed an almost an entire day of school just so his mommy could drag him to the wrong facility, we did indeed get to see the good doctor, actually a month before we were originally supposed to be seen. She was lovely, believed in waiting rooms AND toys in her office, and gave us two of the best articles outlining the myriad treatments of autism and its ancillary effects that either Jeff or I had ever seen (and yes, we read a lot of them). She had a sense of humor (bonus!), and was compassionate, and perhaps most importantly had a satellite office located no further from our house than our previous mental health professional. Our new psychiatrist even got us out of there in time for lunch at Applebee’s.
In short, she was a winner.
There is a lot of talk about “gifts” with autism, both for our children and for their families, and far more discussion about whether or not the concept is valid or completely bogus. Believe me, there have been many days (and nights) I’d happily put anyone in a choke-hold who proffered up the idea that any of this was “a positive”. I’ve found however that fighting for my children, navigating the labyrinth of IEP meetings, Early Intervention assessments, after-school programs and numerous autism professionals has been a gift to me, has toughened me up, inspired me to make it right for them whenever I can. I won’t always be able to “fix it”, and I’ve come to a semi-peaceful place with that.
But over the years, for my sons, I have finally found my voice. I know, from meeting so many parents and reading their stories over the years, that so many of you have found yours too. I applaud you, and will only stop clapping long enough to pat myself on the back as well.
And as the year draws to a close, let’s raise our glasses, ones which hopefully contain the good wine, and make a toast to each other in honor of never, ever, shutting up.
November 28, 2010
Providence
I attended my oldest son’s first IEP meeting at his new school yesterday, an event which lasted more than two hours, was conducted with consummate professionalism, and was coupled with a level of conversation which actually made my brain hurt afterwards. Before some of you decide to hate me, please know that not every meeting throughout the course of my child’s educational career has been this pleasant. Trust me, my mom and I have really “worked it” in two different states to get to this point.
I have enough PRISE manuals to wallpaper my bathroom now (and I mean the big one).
Most of the meeting itself was unremarkable, filled with discussions of goals we hope are attainable for Justin, lovely anecdotes of how well he’s fitting into his new placement (I’m a sucker for that stuff), and a very cogent explanation of assessments conducted on him up to this point. Other than my noting not a single behavior was deemed worthy of discussion (which is not to say he doesn’t have them, they’re just not prevalent enough to talk about anymore), there were no tremendous “aha!” moments, no surprise concerns. Between my mom and me, somebody only cried once. It was a good day.
In addition to being an IEP get-together this was also technically a “placement review” meeting, and I’m happy to say they’re keeping him (2010 continues to be a banner year chez McCafferty). We all even came to consensus easily on which augmentative device Justin should be upgraded to, since it’s become clear he’s outgrown his Springboard. Within the next few months my seven-year-old will be getting an iPad, and in seven seconds he will understand it better than I will in seven days.
Even though I’m technologically Amish, that’s still saying something.
My mom and I actually had time to grab lunch post-meeting, a rare treat for us, and as we drove over to my cherished local Panera Bread I had a few minutes to reflect on what had transpired over the last few hours. The entire conversation had simply been so civilized, so respectful, so incredibly knowledgeable. Without a moment’s argument my school district concurred with me and my child’s school that the fairly sophisticated iPad was best for my son, and agreed to fork over close to four figures to purchase it. The meeting concluded with a long-term plan which will hopefully broaden entire communicative worlds for Justin. I was in heaven, even without being the beneficiary of a free meal afterwards.
Then, while driving, I remembered an email I’d received that morning about a fellow blogger, one whose son desperately needed the same device, and whose school district clearly wasn’t going to purchase it. I felt a wave of guilt wash over me (sorry, but my Catholic and Jewish buddies haven’t cornered the market on that emotion entirely), and sent one of my silent vibes to the universe that by the end of the day the lovely fundraiser one of her friends had put together would result in its acquisition. I had read a bit about how a borrowed iPad had been instrumental in helping this little boy, and was hopeful a device which had so eased his way in this world would soon be his permanently.
And it struck me, we talk all the time about how lengthy the spectrum is for our children and adults with autism. We can’t forget how wide it is for the parents who are navigating it either.
There are still families residing in a myriad of states where Early Intervention services afford children only scant resources, much as Virginia did for me in the long fifteen months I was my child’s primary ABA provider. Entire school districts in this country remain inadequately prepared to meet the needs of their autistic populations, and continue to struggle financially to alleviate the situation. Despite progress made on this front, many insurance companies still refuse to pay for science-driven, evidence-based therapies, so families can supplement what their children are not receiving in school. And as for my pet cause, long-term care, it was just last week I was told how in one mid-western state the government was encouraging caregivers who could no longer be responsible for their adult disabled children to simply abandon them.
Clearly, this last suggestion is not a viable solution.
I am well aware Rome cannot be fixed in one day. I just have to share that I was really moved this week by such a coming together of minds and hearts, how a community reached out despite its own disparate struggles to help a family most of us have only seen on the internet, and did so willingly. I’ve written often about how I wish our “clan” could learn to respect one another’s stances (and boy, there are many), and I have to say I’ve felt the tide turning this year, have with eagerness watched a growing tolerance for our community’s various views. I’ve also witnessed an increase in tremendous acts of kindness, many from families experiencing a myriad of difficult situations themselves, yet still willing to reach out to others. I feel that within the past year being a member of this multitude has begun to provide entrance to a kinder, gentler world.
And I just want to say, I’m proud.
