January 9, 2017
He stands hesitantly at the door, my littlest love, watching as Justin and I rock gently back and forth on the glider that serves as our throne as I read his teenaged brother one of his beloved Eric Carle books. I see him mid-sentence, and figuring he wants more pretzels or juice or something consumable I pause and ask him what he wants. “I want to say goodnight to Justin” he says and enters the room, insinuating himself on my one available thigh. My heart both clutches and expands, and I read on about the miraculous Mr. Seahorse as he gestates what looks to be like a thousand eggs for his wife.
I’ve always loved Eric Carle.
As Zach settles on my lap I look swiftly at Justin to see how he’s taken this alteration in his routine, and a huge smile graces his face, and I relax. I want this to go well because, well, they’re brothers, and although I’ve tried hard over the years to forge a closeness between them it’s been difficult as they don’t share the same interests, and in later years Zach hasn’t really wanted to try.
When the boys were very little, before Zach’s regression, my youngest spent a great deal of time trying to get his brother’s attention. He was always pulling on Justin’s shirt, calling to him from across the room, and generally trying to get noticed. It was easier to contrive moments of connection back then; I could put both of them in Zach’s crib and Zach would always take Justin’s hand (and Justin would let him), and I know that satisfied Zach’s desire to be seen.
Then in the space of a few weeks our baby lost most of his speech, developed a rash all over his body, and the light disappeared from his eyes. I can tell you I wasn’t worried at that point about sibling relations one bit.
Over the course of the next few months we changed Zach’s diet and started Early Intervention services as we had with his brother, and slowly our son emerged, altered, but once again speaking, and most importantly, happy. As we navigated our way a second time through his current services and prepared for the myriad of hoops we’d have to jump through to get him a special education placement I put brotherly bonding on the back burner, but never pushed it entirely from my mind.
Years passed, and Justin became more and more restricted in his interests to the same degree that Zach’s world continued to widen, and I saw more and more that opportunities for them to interact became fewer and far between. Justin liked movies on his DVD player, but only the same thirty seconds over and over to Zach’s desire for a full length feature. Beach excursions became work as I battled to engage Justin’s interest so we could last an hour, and eventually I stopped taking them together as leaving early didn’t seem fair to my youngest beach bum. My eldest wasn’t interested in any of the computer games that so enthralled our youngest, and eventually I let this dream go as I focused on getting them both to sleep, eat anything other than carbs, and most importantly, (thank God!) potty train.
When it comes to autism, I have my priorities.
Over the years Zach would occasionally say he wished he could play with his brother (then in the same breath would ask for a younger sibling, at which point I would emphatically tell him the store was closed). Zach made friends both within and without his school, and his desire for an in-residence playmate waned. He was okay with helping out with Justin on occasion, but that desire for connection seemed to have disappeared.
Then last night he told me he wanted to start saying goodnight to Justin, and the window opened again.
My eldest son can read, and in the past year or so has been gracing us with words here and there. In an attempt to elicit more speech from him I’ve been letting him fill in the last word on every page of our night’s literature, and asking him to fill in the last word of the three songs we share together every evening; “Silent Night”, “Over the Rainbow” and his “special song”, which I made up in desperation to get him to stop crying when he was six weeks old.
It didn’t work, but the song stuck.
We went through our routine, and Justin loved the change. He’d giggle every time we pointed at him to speak, and gave his brother complete and uninterrupted eye contact the entire time. Zach ate it up too, chastising me when I forgot to leave off a word in one line of lyric, reveling in his brother’s attentions. As the last notes of “Silent Night” drifted off I stood up and Zach slipped into my space, and as I went to return our book to his father’s study something stopped me, and I turned around.
All on his own, my son who initiates affection only with me and his father, leaned in close to Zach so he could get his “forehead kiss”. Then he clasped Zach’s hands with his, and gently grazed them with his lips.
Justin immediately began his maneuvers around the room with a delighted smile, and Zach gazed at me in wonder. “He loves you, Zach” I said and my youngest gave me the briefest of nods, a kiss on the shoulder, and bounded out of the room for his pretzels.
My son has his priorities too.
There are heartbreaking moments with autism. My son’s dual diagnosis of OCD can be overwhelming at times, and although I believe we’ve finally found a remedy the memories of the past two years are always with us, both our son’s struggles, and ours. There are times we can’t understand him even when he uses his device, and his frustration and my feeling of failure can be difficult to bear. I can never reconcile with the fact I’ll leave Justin on this earth for forty years without me, knowing I’ll have to trust in his little brother to oversee his health, safety, and hopefully, his continued happiness.
But there are these moments with autism, even severe autism, moments of such stunning clarity and grace that I know I have to push myself to be present so I don’t miss even one. My youngest is taking an interest in his brother again, and I know I will build on this moment, stretch it as far as it will go, hope for their bond to be strengthened and unbreakable as the years and decades pass. It is up to me to grab these opportunities as they emerge, but truly it is up to them to forge what they will, and ultimately I have to accept that too.
But in the meantime, there is a song, a story, and a kiss. There is a moment of profound love.
And for once, I am at peace.
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October 31, 2016
Twelve years ago this month I walked into our pediatrician’s office with my then seventeen-month-old son in tow hoping for a prescription for reflux; I walked out shaking, crushed by our doctor’s callousness, and clutching four misstapled and badly copied articles about autism in my trembling hands. Our pediatrician never uttered the word himself, just told me to call a developmental pediatrician, thrust some numbers on a stickie into my hand, and left the room.
He wasn’t our pediatrician much longer.
I remember being in shock as I left the office, as we’d just been in four weeks prior and our insensitive doctor had not seemed that concerned with the delays our toddler was demonstrating. I also remember as I made my way to the pharmacy to fill that prescription which would at least let me help him with something that I called upon my experience with the few autistic children I’d had as a teacher in my homeroom and classroom, thinking those few encounters would give me a leg up on raising my own autistic child. Boy, was I wrong.
As they say on “Game of Thrones,” I knew nothing Kim McCafferty.
The year was 2004, when Jenny McCarthy and “recovery” were hot in autism land. While navigating doctors appointments and the murky and ultimately deeply disappointing world of what passed for Early Intervention in northern Virginia, I spent any time I wasn’t interacting with my son researching autism on the internet, and God was it confusing.
There were parents claiming the only positive outcome of this diagnosis could be a cure that led to recovery.
There were autistic advocates and parents of autistic children claiming an alternative neurology cannot, nor should not, be cured.
There were professionals informing me that studies showed that sign language gave kids an edge over learning to talk, and should always be employed.
There were professionals informing me that alternative methods should always be explored, matching the child’s strengths to the appropriate communication system.
There were parents telling me not to vaccinate.
There were physicians telling me I’d better vaccinate.
There were parents explaining to me that a public school program was the way to go for their opportunities for mainstreaming, which should be my ultimate goal.
There were teachers sharing with me that despite the push for it mainstreaming might not be the most important goal regarding my son’s future education.
As I look over my list, I realize not all that much has changed in a dozen years.
I did my best by Justin in those early and isolated years, reading and attending workshops whenever possible. I often felt the two of us were drowning back then, combating my son’s insomnia, aggression, gastrointestinal disorders, and his religious adherence to having things a certain way that would ultimately earn him a dual diagnosis of OCD and autism. My husband worked, our families were three hours away, and all my friends either had careers or were busy raising babies of their own. I often felt adrift at sea, anchorless.
Ultimately what I clung to to get through it all were my choices regarding Justin’s treatment, usually based on articles I’d read, clutching their information to me as tightly as I had clutched those initial articles which had in one instant completely altered my world.
I displayed my own rigid behavior regarding that information. According to studies I’d read sign language more often gave way to words, in my opinion a must for my boy even though his fine and gross motor abilities were severely delayed. I was told that he should absolutely attend a public school program both for the chance he’d mainstream, and so he’d make friends with neurotypical peers.
And if it weren’t for professionals who gently offered me alternatives to both of these choices and asked me to keep an open mind, despite my best intentions I would have done my son far more harm than good.
After we moved to New Jersey and actually received appropriate Early Intervention services (yay the Garden State!) I clearly recall one of the therapists from Rutgers gently pointing out to me that after more than a year of working with my son he only had a handful of signs, and some of those were used sporadically at best. I remember initially feeling that using the PECS system meant giving up on words, instead of focusing on the fact that my then twenty-two-month old might actually end up with a way to communicate his needs other than by mostly crying.
If I hadn’t listened, he might have spent many more months often frustrated by his mother’s inability to read his mind.
I had that same rigid mindset originally as from Virginia we attempted to find the most fantastical, amazing, perfect autism program in the perfect NJ town (oy!) because I wanted my son in the public schools for the mainstreaming opportunities, and I didn’t want him sent out of district. At the tender age of three I wanted him to have opportunities to engage with neurotypical peers because I wanted him to have friends, to interact with others. This was the most important goal in my life, more than losing that last seven “baby weight” pounds or consuming large amounts of chocolate every day.
Okay, that last is still an important goal.
After four years in two different public school districts it became apparent that the only one who cared about his interactions with neurotypical peers was me, and that his home school district really didn’t have an appropriate program for him anymore. I remember my mom, a special educator with three decades of experience gently telling me to look at the big picture for Justin, that perhaps him having friends was not the most important issue now, that in fact Justin really didn’t seem to care about his peers. I recall making the mental shift to becoming open to sending him to a private autism school where educators could help him focus on the academics he loved so much, where down the road he would have better access to job programs and adult programs, and hell, even a swimming pool he’d frequent daily during his eight week summer program.
I know, we’re spoiled.
I’m still learning how to make the shift from wanting for Justin what I think he should need to what he really needs (it remains a learning curve for me), and by keeping an open mind I know my choices for him have contributed to the thriving, happy teenager who loves school and loves his life. I still struggle to do this with both my boys (what parent doesn’t), often employing a “what would Zach/Justin do” mentality when considering my options.
And I still make mistakes. I am still sometimes slow to recognize a shift in need, still working on ridding myself of “what should be.”
But as with many things in life I’m still a work in progress, and keeping an open mind is one goal I plan to keep.
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April 6, 2015
Eleven years ago, my eldest son Justin was diagnosed with moderate to severe autism. At the time I didn’t know any other families with autistic children other than the ones I’d had in my homeroom as a teacher, and those children were much older than my son. I didn’t know who to turn to for help in supplementing the scant eight hours of services Justin was receiving each month from Virginia’s Early Intervention. I had so many questions regarding the gluten-free diet, yet didn’t know whom to ask for advice. I knew I needed a place to vent, but wasn’t sure I’d find a support group to fit into, as several had turned me away because my son was not high-functioning. Even months after Justin’s developmental pediatrician told us the news, I was still scared at what the future held, overwhelmed, and alone.
It finally hit me one day that I used to be someone who helped others, but now for my son’s sake I needed to ask for help. Fortunately I turned to the autism community, and found a wealth of support, advice and resources.
Sometimes, the people I met even provided me with a much needed laugh (and wine.)
The autism community both online and in your “own backyard” can be instrumental in helping you surmount challenges, in giving you ideas, and in being a place where you can feel surrounded by people who “get it.” Here are some of my favorite ways to integrate into the community, because we all need a place where we feel we belong:
1) If you’re fortunate enough to live in a state which provides ample Early Intervention therapy hours for your child, reach out to your child’s therapists with any questions you have. I have two children on the spectrum, and their therapists have given me suggestions on developmental pediatricians, support groups, and much more. I often asked them to question their other clients for me regarding resources, and in doing so they provided me with a wealth of information. I found that even if they couldn’t answer my question, they knew who to ask.
2) If you’re looking for Applied Behavioral Analysis (ABA) providers for your child, try your local colleges or universities. Talk to the secretaries in the education department and ask if you can put up a flier, or have the professors mention the opportunity to their students. We acquired several of our therapists that way, and it was a win-win for all of us.
3) If you’re just beginning your journey with autism ask your Early Intervention coordinator about programs, services, and camps. We found out about several local autism organizations that way, as well as about a number of camps that turned out to be wonderful for our son.
4) If your child is already in school join your local SEPTA, or Special Education PTA. The parents in mine have been extremely helpful, plus they’ve provided an important sounding board for me over the years (and I’ve made friends!)
5) Check out the Autism Speaks website and Facebook page. Just their tool kits alone have helped me overcome many challenges with my kids both at home and in the community.
6) Reach out to different autism organizations and attend as many workshops as you can. Many are free, and along with the information provided you might make some great contacts.
7) Join a local support group. Reach out to local autism organizations and even to your child’s doctors to find one. They can be a great place (if the fit is right) to vent, celebrate your child’s accomplishments, and learn.
8) If you are looking for a social skills group for your child, try nearby psychologists and psychiatrists as well as local hospitals for suggestions.
9) If your child is still young ask your Early Intervention providers if they can recommend other moms with autistic children to whom they’ve delivered services in the past. I’m still friends with many of my kids’ providers (we spent so much time together after all,) and I’ve helped out a few parents over the years. I also met a few wonderful moms who were farther along than I was who turned out to be a great help.
10) You will undoubtedly have a number of people try to “set you up” with other autism parents, and I used to roll my eyes at times at peoples’ matchmaking. However, one of my dearest “autism mommy friends” is from my son’s hairdresser who wouldn’t let me leave her establishment until I’d spoken on the phone to her client. You just never know!
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September 16, 2013
It came in the post today, bound in bubble wrap, so tightly encased it almost defied my interventions to release it. I almost missed it amongst the other packages (we are an “order online” family), came close to passing it over in the rush to get dinner on the table, make lunches, and organize my kids for the next day’s events. Once I realized what it was I took the tie to free it from its confines, and couldn’t help but smile at the weight of it in my hands, both physical and metaphorical.
Today I unwrapped the final proof of my autism memoir about my boys. I must tell you that I am more than a wee bit excited I’m so near to publishing it.
Those of my readers in the autism community (and that’s most of you) may well be thinking, “for the love of God, not another autism- mommy –memoir,” and as there are literally hundreds of them in existence, I hear your angst. Amazon and even the Barnes and Noble bookshelves are rife with this type of writing, and truly, some of them are wonderful reads (I’ve listed a few of my faves at the back of mine).
So why, you may rightly ask, is it necessary to unleash yet another autism memoir upon the world? Well, I’ll share with you that mine is somewhat unique in that it centers around raising not one but two young children on the spectrum, one who is non-verbal and considered severely affected, and one who is more verbal than most and considered high-functioning (there’s a little something for every family here).
Our story spans two states, Virginia and New Jersey, and begins ten years ago, when autism was just beginning to take such precedence in the news and become somewhat of a household word. It describes what it’s like to do thirty hours a week solo with your own autistic toddler without losing your sanity (or at least appearing not to). I share every strategy I’ve used to help my kids acclimate to the world, so there’s a practicality to the memoir as well.
Finally, and just as important as the above reasons itself, it is not a weeper. I’ve allowed my own rather sarcastic humor to shine through, the same humor that was my saving grace while conducting those thirty weekly hours of therapy with my boy. I promise, it will make you laugh.
And even if you’re immune to my humorous charms, by purchasing it you will have contributed to an autism organization, and helped a child.
I’m proud of this book for several reasons (okay, mostly just proud I managed to write one while raising the two autistic kids, but there are other reasons as well). Nine years ago when Justin was diagnosed it became immediately apparent to me that I would have to make my leave-of-absence from teaching a permanent hiatus, as frankly no day care nor nanny would have been willing to care for my son. His behavior was truly that difficult back then, and since principals seem to frown upon their teachers not showing up for work, I knew after his diagnosis it was time to “retire. ”
I also knew resigning my position might effectively end my career, as even back then jobs were hard to come by, and I might not get another opportunity to work. Given that I loved my career and was fairly uncertain as to how being my son’s primary therapist was going to float with him, it was a real time of uncertainty for me. I did feel incredibly fortunate I could stay home with him and help him, since Virginia’s Early Intervention program was, quite honestly, pathetic, affording me eight hours a month of services when my son required at least eighty, if not more.
But despite feeling lucky about our circumstances I realized I still needed something of my own, even if I had to put that dream on hold for a while. I decided that once Justin was in school I would write our story, and use it as a fundraising vehicle. I got a bit delayed by a surprise pregnancy (trust me, a welcome but BIG surprise), and then by my youngest son’s regression (it makes the book longer, you’ll get your money’s worth). Finally, however, I finished it (hurrah!) and will be proud to donate all the profits “from here to eternity” to four different autism organizations- namely Autism Speaks, Parents of Autistic Children (POAC), Someone Special Needs You (SSNY), and my eldest son’s autism school.
I’m really hoping I get to write some big fat checks.
As the publishing date gets closer (I anticipate about 4-6 weeks from now) I’ll be happy to share more about my book Raising Autism: Surviving the Early Years and more information about the organizations I’ll be supporting. Right now however I’m going to go get that manuscript and attempt my final edit(!) while my kids are in school, so wish me luck.
And, as always, thank you for reading and for your wonderful comments!
July 6, 2013
Nine years ago this fall, after several lovely Virginia Early Intervention providers had assessed my small son, I sat down with my mother at my dining room table and eagerly awaited their verdict on how many hours and types of therapies my recently diagnosed autistic toddler would soon receive at their hands.
After half an hour of regaling me with just how developmentally delayed my child was in all areas, they gave me their verdict on how much help I could expect, help I was happy to pay for, help I was desperate to accept.
The lovely women who had worked with my son for the better part of an afternoon offered me eight hours a month. Every autism expert in the nation recommended at least eighty. They held out an olive branch of six hours of occupational therapy, and two hours of speech.
ABA, or Applied Behavioral Analysis, which addresses the core deficits of autism and is exactly what my son so desperately required, was not on the table. Unlike New Jersey, in 2004 Virginia’s Early Intervention agency did not recognize a specific diagnosis of autism in their clients, and as such was not required to provide the instruction my son so dearly required.
I remember clear as day looking at my stunned mother across the table, putting my head in my hands, and wishing with all my heart I could just cry my guts out.
In that moment I knew my entire world had changed. Reality hit me like a tidal wave- I would have to get trained in the core therapies of autism, and deliver thirty to thirty-five hours a week of said therapy to my own autistic toddler. My husband’s insurance provided no respite from the costs, and even with me acting as his primary therapist we still needed a Board Certified Behavior Analyst to oversee his program and train me and any other therapists we hired, an out-of-pocket expense of over $2,000 per month.
Although Fairfax County Public Schools generously took autistic students the fall after they turned two I’d begun to hear unsettling things about my son’s future program, namely that he’d have no hope of ever having a one-to-one aide, an aspect of his education I felt strongly would be integral to his ever being an academic child. In my heart I wasn’t certain Justin should start before he was three-and-a-half in that environment, or if he should begin there at all.
I recall realizing even if I could master the intricacies of ABA and deliver excellent services to my son that I might not be able to keep up that pace for two years, and that he might receive even less intense instruction than he did at home when he finally entered a school program. I realized I would have to make my temporary leave of absence from teaching permanent, would have to perhaps forever put on hold my dreams of eventually becoming a school administrator.
I understood that despite having built a great life in this Washington, DC suburb over the past decade-and-a-half that our family would have to move, that our adopted state could not meet our child’s needs in either the short or the long run. I swallowed, and accepted that my current life, as I knew it, was over.
I also knew I was damn lucky I could teach him, and that we had the extravagant luxury of being able to relocate. I am certain most families do not.
I’ve never forgotten that day, both being distraught over the lack of services that were offered to me, and my even greater despair at the fact that our insurance would not cover us at all if we sought private providers for therapy. I’ve continued to follow Virginia’s journey over the last almost decade since we moved back to New Jersey, and was so grateful to see that Governor Bob McDonnell signed into HB-1106 into law, a bill which assures that providers of Applied Behavior Analysis (ABA) are covered under the law.
Even if Early Intervention services have not improved since then, this document will bring much needed relief to thousands of families, many of whom may not be as lucky as ours was. My heart rejoiced for them, even as my tired soul remembered those long days, weeks, months when I was my son’s primary provider, hoping every day I was giving him what he needed, both as his mom, and as his teacher.
I look at the mostly happy boy he is almost a decade later, and I believe I played a part in this outcome. I also believe no parent should ever have to do this for their own child.
According to the National Conference of State Legislatures, thirty-seven states and the District of Columbia now have laws related to autism and insurance coverage. This is a vast improvement from the dark ages of autism of sixty years ago, even a major improvement since we began our personal journey a decade past. Yet, thirteen states in our union have yet to ease the burden for families whose days are often extremely burdened by the disorder.
Children in thirteen states may still be denied required therapies because their parents can’t afford to hire outside providers to deliver core services their sons and daughters may require to communicate, to quell their behaviors, or simply to be happy and productive in a world which they must invariably find incredibly challenging. My heart goes out to all families still struggling to cover the often astronomical costs of autism, every single one.
Thirteen states. It is far too many. To those advocates fighting every day to change this statistic, I offer you continued hope, and courage.
May every single one of you win.
June 22, 2013
A while back I read an article on MSN money (truthfully, my husband sent me the link, most of the time I wouldn’t understand a thing on there) about the staggering lifetime costs of having a child with autism. I’m familiar with the statistics by now; that the costs to the country are around 137 billion; that outside therapies can carry a price tag of more than $50,000 out-of-pocket per year; that residential placements can cost $100,000 annually; that the total lifetime price of caring for a child, then an adult with the disorder, can total 3.2 million.
Generally my eyes start to glaze over when I read statistics about anything, but these numbers are personal. Very personal. You see, my eldest son resides in the category of autistic individuals who will require that lifetime care.
I can share with you all that his father and I are a bit short of the 3.2 million.
What the article does not include is all the ancillary costs that often come with the diagnosis, many of which had a direct effect on our family. After Justin was born I had fully anticipated returning to work when he was just over a year old. Just months after his first birthday we received his diagnosis, and our entire world changed in an instant.
A few weeks later, we learned that in Virginia Early Intervention did not provide any therapies that addressed the core deficits of autism, and what they did offer was literally one tenth of the number of hours Justin was supposed to receive to help him.
I realized I’d have to formally quit my job to deliver the thirty weekly therapeutic hours the experts recommended. I also realized going back to work when Justin eventually went to school was an impossible dream. At the time I labored as a Fairfax County VA regular education teacher. On a good week, I put in fifty hours- most weeks, it was closer to sixty.
Justin would need before and after care, and there was literally no one to provide it for him. I loved my boy, but the constant tantrums, the crying, and the bites and pinches bestowed upon anyone who displeased him did not make him an excellent candidate for anyone’s before and after care.
We’d already run through a few babysitters by that point, so that avenue was no guarantee either. We had no family in the area, no relatives able to watch our son mornings and afternoons. I can literally remember the day I sat on my couch in my living room, conflicting emotions racing through me. I was on one hand so grateful we could afford to live on a single salary, and that I had the capacity as a former educator to deliver Justin’s therapy to him.
On the other hand, I also remember the sinking feeling of knowing my administrator’s degree, and all the extra hours I served on committees at school and the leadership positions I’d taken, would most likely be for naught. My dream of following in my mother’s footsteps and having a career as an educational administrator would probably be thwarted by autism.
There was just no way around it- someone had to look after Justin, and that someone had to be one of his parents. Since Jeff made twice as much as his wife, it would have to be me. At least for the unforeseeable future, my working days were done.
Yet I’ll say this again- we were a lucky family to even have the choices we did. Many families, to this day, do not.
I think it’s clear from my essays how much I love my kids, and how proud I am of their collective character every day. I know much of what I write showcases their progress, and hopefully highlights this family’s ability to come to terms with autism and integrate it successfully into our lives. But I want to be careful not to paint a completely rosy picture of how life is for many families struggling just to make ends meet once autism has come knocking on their door.
Autism is often overwhelming. It is almost always very, very expensive. I’m writing this today because we were the fortunate family who received help from friends, from family; through the graciousness of my husband’s employer we were even able to relocate to New Jersey to address Justin’s educational needs, and be closer to family. Despite how insanely challenging the last decade has been, I consider our family to be lucky to have had any choices at all.
The cost of caring for an autistic individual is staggering. Often, the day-to-day challenges seem impossible to conquer, even when things are going well. And for many of us parents who know their child will require lifetime care, many years of which will be delivered when we’re dead, there is a sadness in that knowledge that resides with us always. At least it does for me, even when things are going well.
So please, if you know a family in your church or synagogue, your neighborhood, your child’s school, offer to help if you can. Babysit if you feel you can handle it, bring them a meal, offer a playdate for a sibling to give the mom or dad a break. At the least, when you see them, offer them a smile. As a recipient of several of these acts of kindness in the past I will tell you they mean the world, as all of these gifts helped me to navigate mine.
For whatever you can do, I thank you.
March 23, 2013
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
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
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
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.