April 1, 2013
A few months ago a study from the University of Connecticut came out stating that some children who are accurately diagnosed with autism in their early years can grow out of it. The study, spearheaded by Deborah Fein and published in the Journal of Child Psychology and Psychiatry, looked at thirty-four adults between the ages of eight and twenty-one. All were diagnosed with autism spectrum disorder before the age of five, and all no longer showed any remaining signs of the disorder. In fact, the study showed no difference in their performance on standard tests when compared with a control group who had never been diagnosed with autism.
Just to keep this in perspective, current statistics show that only one in twenty children given the autistic label in early childhood will outgrow the symptoms.
When I read studies like this I am immediately brought back to my early days with Justin, who was diagnosed in 2004 at seventeen months, before Jenny McCarthy and autism were household words. Back then having a child diagnosed before the age of two was a rarity, and I recall that I held onto this fact tenaciously in those first few months. I enveloped myself in the comfort that at eighteen months of age Justin was in a thirty to thirty-five hour a week ABA program (mostly conducted by his mother), in some cases a year or more before most children were enrolled. His instruction was my solace in a time of chaos.
Quite frankly, I’ll admit that in that first year of therapy I was desperate. At that point I’d had exactly one interaction with a severely autistic person, the sibling of one of my former students. She was a pre-teen by the time I met her, very challenging behaviorally, and often quite unhappy. I remembered how extremely tired her parents looked, and how her younger sister, my charge, seemed wise beyond her years.
That experience stuck with me over the years, permeated my thoughts about what the future held for my firstborn. What terrified me for Justin was not that he had a label, or was different than most of us. Some of my favorite students were quite “different” from the mainstream, some with Downs Syndrome, some with severe ADHD, some just marching to the beat of a different drummer. Most of the time they were happy; in fact, I often felt they were happier with themselves than most of us truly are.
What horrified me about Justin’s diagnosis and the apparent severity of the disorder’s presentation in him was that most of the time he was unhappy too. Not cranky. Not irritable. No, my boy was predominantly, seemingly irrevocably miserable (and with his constant lack of sleep, reflux, and diarrhea, who wouldn’t be). In those first tenuous months of instruction all I thought about was “curing” him, rendering him indistinguishable from his peers. Sure, I wanted to hear his elusive laughter more frequently too, but mostly I wanted to strip his autism from his soul, render him more “typical”.
I wanted him to be like me.
My feelings have changed dramatically since those dark days almost nine years ago, but I stand by how I felt then, feel a tenderness toward that first-time, terrified, mother. My baby was undeniably suffering. I would have done anything to make it stop.
And now, thank God, I can truly say he isn’t suffering any more.
Justin’s life trajectory will not follow a traditional path, or at least the road my family has generally traveled, one which includes higher education, a life partner, friends. I’ve accepted this, and also accepted that part of me will always mourn that he won’t have the trappings of an existence that have so enhanced mine. What’s come in the wake of this acceptance is the dawning realization that my son adores his life, his routines, the few sacred persons whom he loves, and by whom he is loved in return. He is, most of the time, perfectly happy.
At this point, it’s just me who sometimes struggles.
He will not “recover”. There will be no magic pill for him, no concoction which makes him speak, no sloughing off of the characteristics that comprise his particular type of autism. I will forever chase off my fears of his future life without his parents, what will unfold for him when we are no longer here to protect him, respect him, love him for who he is. I’ve accepted this part of his path too, that I will worry until my last sentient thought dissolves into nothingness, and I am no longer of this world.
Yet he will still be here. And so I continue to work toward a world for him which includes a job that enables him to contribute to society, and a cadre of people who recognize his inherent worth. I continue to reach toward a world which extends past accepting his differences to celebrating them. I continue to hope that his world, whether I’m here or not, will remain filled with love.
Somewhere out there a child will be diagnosed today. A mother or father will be bombarded with information, avenues of therapy, promises of cures. It will all appear overwhelming, impossible, fraught with misery. There will seem to be only one solution to eradicate the sadness, one path to offer a child a fulfilling and meaningful life. There is more than one. There are many.
And to anyone embarking on this journey today, I hope my son’s story will help you to a place of peace.
November 16, 2011
I’ve mentioned before that I’m a proud member of the Brick SEPTA (Special Education PTA), an organization that under Mary Tara Wurmser’s leadership has shown tremendous growth over the past few years. The SEPTA board, including Nicole Barresi, Janet Bixenman, Dina Crepaldi, Vinnie Muti and Sherry Doyle, have worked tirelessly to provide fun events for children with special needs. They have frequently invited expert speakers to come enlighten us on topics ranging from transition planning to understanding Down’s Syndrome, and have also recently added recycling to their list of projects, an effort which remains near and dear to my heart.
Heck, they had me at the chocolate donuts.
The board and members of SEPTA have been making a concerted effort to “go green” by using social media to convey their news, but have recently decided to take things a step further. They are also attempting to raise funds and earn assistive technology (i.e. iPads), with the express hope of donating several to our local EEC (Educational Enrichment Center), the building which houses our town’s pre-school autism programs. I’ve seen firsthand how this technology has opened up worlds for Justin, who didn’t have the opportunity to employ such an elaborate communicative device until he was seven. I can only imagine how access to iPads might enhance the education of a three-year-old.
And knowing the Brick SEPTA board, I’m certain the EEC will soon find out.
The vehicle through which such donations can be made is called the “Funding Factory”, and is an ongoing free fundraiser and recycling/Go Green program. SEPTA can accept ink cartridges, laser cartridges, cell phones, electronics, and laptops, then send them to the Funding Factory. Drop-off is simple- individuals can leave their items in a drop box at the EEC, or if the item is too large for such a container, a pick-up can easily be arranged.
Other organizations can also come on board and raise funds for their own projects by listing SEPTA as the referrer (Group ID # 275622). Companies can sponsor SEPTA as well by donating their cash or points from the program directly to SEPTA. There are no shipping costs, as Funding Factory takes financial responsibility for that issue, and they make sending in the materials very simple. For more information, please see:
Finally, there is one last option for helping out SEPTA this season. The Funding Factory is partners with Maxback, a website which individuals can use to get cash-back for unwanted smartphones, tablets, ipods, and video games. Maxback pays senders directly through Paypal, check, or Amazon gift certificates, but the bonus is, they will match each contribution with a 10% donation to SEPTA. You’ll need to establish a free account on Maxback and designate SEPTA as the recipient (Mary Tara assures me even I could figure out how to do it, it’s that simple). For more information, please check out this link:
Given how much we’re all watching our wallets stay closed these days, these are some easy ways to contribute without emptying a bank account. Thanks in advance for your participation, and hope to see you at our next SEPTA meeting on January 9th!
October 11, 2011
Justin opens his mouth in a wordless “o” of half-terror, half-excitement, then plunges a body length toward the boardwalk, as usual enraptured by his favorite ride. I smile and enact my “usual”, which is to capture that moment of abject fright coupled with fun on film, because he’ll enjoy it later when I play these moments back for him on camera. The ride has just begun, so I allow myself the luxury of relaxing just a bit, knowing he’ll be engaged for several minutes, as the amusements at this particular boardwalk are actually worth the wait.
I take a step backwards and feel my sneaker crunch what can only be someone else’s toes, and I quickly turn to offer my apologies. Thankfully, my victim is also wearing sneakers rather than more traditional summer fare, and she simply smiles and says “Don’t worry about it.” I see her hesitate for a second which intrigues me, so I keep my torso turned in her direction, and she follows up with a second question. “Is that your boy on the end?” she asks. I say yes, and she responds with “mine’s on the other end”. I turn back to where my son is being flung around like a jack-hammer, and see a little boy with Down’s Syndrome four seats down from Justin, clearly as immersed in the excitement as my boy.
I consider anyone with a child who’s differently-abled to be part of my “tribe”, so I take a step back and strike up a conversation with her. I tell her her son is beautiful, and she kindly returns the compliment. With only a minute or two left in the ride we conduct a typical abbreviated dialogue- diagnosis, residence, how our school districts are providing for our kids, and sibling status. It turns out she has an older daughter who adores her son and is a big helper, and I share with her that I have a younger son who is also on the autism spectrum, but mildly so.
She looks at me, this woman with her own Herculean challenges, and says quietly, “Two? Wow. I have my hands full with just one. I don’t know how you do it”. I reply that wine and getting out of the house once in a while are my biggest helpers, and she laughs as we both watch the blurred row of seats begin its final descent. Justin can lift himself off now independently, so I say good-bye to my newfound friend, wish her luck, and grab my son’s hand before he’s en route to his next thrill-filled destination. It appears our subsequent adventure will be the tilt-o-whirl, which is wonderful for Justin, and not so good for his mommy. I am already regretting having eaten prior to coming here.
We successfully survive what I’ve lovingly come to call “the twirling cups of queasiness”, and Justin lets me know that he’s done for the day by yanking on my hand and striking out in the direction of his waiting stroller. He’s certain he’ll be the imminent recipient of a salty pretzel within minutes, so his grip is strong, and relentless. Within seconds we’re back at our staging area, the carousel, and he is soon sitting calmly in his own personal ride. We acquire our carbohydrates, his doughy, twisted bread and my staple of soft-serve, and then continue with our tradition, which includes a stroll down to the end of the boardwalk and back.
I love these walks, because along with rides in the car they seem to be one of the few moments in my life where I get time to truly process anything. I let my mind wander back to my conversation with my “tribe-member”, and her heart-felt query as to how I make it through the day. My comment involving the merits of alcohol and frequent bouts of “Mommy-time” was somewhat glib, but also true, particularly the latter remedy. We all need to take care of ourselves so we can take care of our kids, and for me, that includes time alone, even if it’s just running errands. Some of my best ideas have been born from those moments of sanity, where nobody is stretching out my shirt-sleeve with their wants. I admit, to me, it’s precious.
I also admit there are other reasons why I’m usually able to do more than just get through the day, although I’m grateful for that ability too. If I’d had more time, I’d have told this woman that my eldest son’s bravery when he attempts to talk continues to take my breath away. I’d explain to her that my youngest son’s compassion for his sibling’s struggles at communication makes my heart overflow with pride. I’d share with her that my sons’ collective courage in all of their endeavors is a tremendous inspiration to me, that their spirit makes me strive to do better for them, to parent them to the best of my capacity. I’d regale her with all of these examples, and they’d be true. There’s one other important reason I might leave out however, because you really need a visual for it, and it’s something Justin won’t produce on command.
I call it, lovingly, the thin red line.
The thin red line is his special smile, the one he saves for particularly spectacular days, the ones that exceed even his exceedingly high expectations. Its appearance is rare, and therefore even more coveted. It is usually preceded by a mighty hug and kiss of thanks from my boy, includes perfect eye contact, and looks like this:
Those perfectly pursed lips signify a blessed absence of angst, a true sign that fun is interwoven indelibly throughout his days. That look on his face indicates that despite some limitations, he is thoroughly enjoying his childhood. It means that all those years we struggled, both independently and together, have ultimately resolved themselves into his predominantly peaceful, and happy, existence.
It is a smile of utter satisfaction with his life.
A slight smile graces my own lips as I ponder these truths, and for the millionth time, I thank the universe we’ve come to this point. I am well aware there are other parents who have worked just as hard as me and my husband, parents who have not been rewarded with similar results. My boys, and perhaps this boy in particular, continually make me want to do more for them, and do more for others as well. Justin’s contentment, that emotion we’ve worked so hard to elicit, will remain that catalyst that does far more than get me out of bed in the morning. It will be a continual reminder of how fortunate this family truly has become.
Lucky, in fact, to be graced with the thin red line.