October 27, 2014
Given that my youngest son (who has high-functioning autism) literally has more energy than any human being on earth, I am always in search of outlets for that energy. As luck would have it Zach’s case manager happened to mention Paul Prendergast Karate to me two years ago, and I decided to give them a call.
I explained Zach’s dual diagnosis of ADHD/autism and launched into a litany of his strengths and weaknesses, a monologue which I’m certain lasted for at least ten minutes. At the end I finally took a breath, remembered the concept that a conversation is generally two-sided, and waited.
The words “bring him in we can’t wait to meet him” were music to my ears.
I decided to interview Master Paul recently because I like to promote people and businesses whom I deem “autism-friendly” whenever possible. Master Paul shared with me that he was a self-described “lazy kid” who took to karate with gusto after his first lesson, an enthusiasm he summoned later in life when he acknowledged the hospitality business was not for him. He realized he truly wanted to work with kids, help them to be their best selves, and facilitate their realizing their dreams.
And out of that desire, Paul Prendergast Karate was born.
During the course of the interview Master Paul told me that he had been a “terrible student who probably has undiagnosed ADD,” a situation he felt was never handled well by his teachers. He recalled an incident in which a teacher called him “retarded” for not understanding a biology concept, and remembers the sting of it to this day.
But instead of letting this episode destroy him, in typical PPK fashion he has instead allowed it to shape how he wants his special needs students to be treated.
And that philosophy translates to making certain he and all his instructors treat those with special needs (and those without) with compassion and respect, and has engendered a neverending quest to solicit their best from them.
The key to the success of this philosophy is of course communication, both between staff members and between staff and family. Families are encouraged to share victories with the instructors so the students can be recognized in class; they are also encouraged to share any difficulties transpiring in their lives so staff can be sensitive to their needs.
There are weekly staff meetings to discuss students’ progress, where Master Paul encourages his instructors to “know their students; if they’re not getting it, figure out why.” Feeling that every child is an individual means the instruction is tailored to the students’ needs. Master Paul shared with me that he likes to be “proactive and not have to put out fires”- he encourages his staff to find the successes in each session, then use praise and reward to help children achieve their goals. His catch phrase is “behavior recognized and rewarded is often repeated.”
Amen to that.
I personally feel that karate has aided Zach immensely, from helping him focus to emphasizing the importance of respect (plus it tires him out, which I especially love.) Although it hasn’t helped him learn to clean his room (they’ll work on that with you if you want) I’ve come to see a more confident child emerge over the last two years, and I credit PPK with contributing to this growth. I don’t know how long Zach will wish to pursue karate, but at the moment he’s happy, his mom is thrilled, and my kid gets to feel good about what he’s doing several times per week.
In the end, there’s not much more you can ask for from an after-school activity.
Brick location: (732) 477-8451
Toms River location: (732) 255-0563
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October 21, 2014
My eldest son breezed through the trick-or-treating partitions at Great Adventure, slowing down only to snap up a bag of candy he will forego and his mother will sample later. We’ve been participants in this activity for several years now, and in general my son has just tolerated the event, rushing past the Looney Tunes characters as if they were so yesterday, whipping by hands outstretched for high-fives or arms elongated for hugs.
Today however he slows down slightly at Foghorn Leghorn, waits patiently for a family to acquire their photo op, and approaches the costumed employee. He stops, stares into his “eyes,” takes a tentative hand and strokes Foghorn’s bill, never breaking eye contact with his newfound friend.
And as I stand and witness his newfound interest, I just can’t help but wonder what’s going through his head.
When Justin was diagnosed almost a decade ago with autism, the pronouncements for his life trajectory were very dour, often completely devoid of hope. Back when he first earned the autistic label I spent hours trolling the internet to acquire any information that might help alleviate the symptoms that seemed to cause him so much distress, and in my research I came upon many of these sites and blogs.
I found them so depressing I soon avoided them altogether, instead devoting my time to ABA manuals and some memoirs which helped shape my perspective on my son’s future, books which enabled me to entertain the possibility that we could indeed be a happy family even with autism in our midst.
No matter where I turned however much of the literature I read harped upon the autistic person’s lack of imagination, their avoidance of any type of pretend play. I can actually remember questioning whether or not we should take Justin to see Santa, balancing the sensory onslaught that so plagued my son when he was younger against the opportunity to visit with this childhood icon.
The childhood icon always won, and most of the time my son seemed to enjoy the event. As Jeff and I would snap away I always spent a few seconds wondering what he thought of sitting on a big bearded man’s lap- did he connect mall Santa with Christmas and toys, or was this just one more crazy thing his mother insisted he try to see if he liked it.
Trust me, back in the day when I was desperate for any activity with which to entice my boy, there were plenty of those events too.
Justin’s much older now than that perpetually cranky toddler, far more apt to accept and even embrace his mother’s outings, some of which I often wonder if he tolerates simply because he loves me. I cut my musings short and watch as my son lays both hands on his new friend’s face, gently angling it down to his eye level, then regard his giant grin. In that moment, I wish I could ask him what he feels. I want to ask him if he understands this is just make-believe, that there’s probably a hungry teenager in that costume.
I want to know if he’s truly having fun.
Soon the eye-gazing concludes, and the offer of a hug is rebuffed by Justin, as is his right. My son affords me the merest flicker of eye contact, then brushes by me in a fast-paced attempt at egress. The truth is, I probably will never get to have a conversation with him where I can ascertain his understanding of the imaginary, of the land of make-believe. He may not think that way, or he may, and I might never know it.
But as I catch up to him at barrier’s end he stops and pulls me into a brief embrace, squeezed my elbows as he is wont to do, and gives me his luminous smile. And in that moment it is irrelevant if he understands the nuances of the fabled, the contrived. At the end of the day only one thing matters- that he’s happy with the life he’s been given.
And at this moment, as he grabs my hand to propel me once again onto his path, I can gratefully say he is.
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October 13, 2014
I pull Zach in close to me as we lean back into our pew, letting the sounds of the organ cascade around us as my son reads a book about Noah. There is the usual chatter of people finding their seats for the service, but as I relax even more I hear the unmistakable sounds of vocal stimming from a few rows back, and I smile. Soon Zach is called up front for the children’s portion of the service, and out of the corner of my eye I see an elderly man with what I guess is his adult child sitting next to him, rocking slightly. In the flash of a second I see that the sounds are emanating from him, then my hand is tugged as my son wends his way through adults and children to the front of the church.
After dropping my son off in the education center I return to my seat, and listen as the sounds of someone else’s son punctuate the sermon and our singing. All too quickly the homily concludes (I confess I consider church to be part of my “quiet time” and I relish that peace,) and we are dismissed and asked to keep the faith. As I slip from my seat I see the man and his son slide in front of me, and together we go against traffic as we head toward the back exit.
At one point we come to a complete stop, and I am able to lay my hand on his shoulder. He turns his head back to me while never releasing his grip on his son. I say, “I have two boys with autism. He did great today. You’re doing great today too,” and there is enough time for him to return my smile, say a heartfelt “thanks,” and continue on his way. I admit, just that one exchange made it worth the hell of dragging my tired and grumpy boy out of his warm bed for church this morning.
I just wanted him to know somebody saw him, and got it.
I admit, I used to really need people to “get it” about the boys, particularly when our eldest son, Justin, was diagnosed ten years ago. Although there was some awareness then, people still weren’t as cognizant of the struggles and triumphs of autism as they are now. I often found myself challenged to explain how although some of the things we were experiencing with Justin were phases all children go through, many of them were not, nor would 98% of the population endure them for the lifetime of their child.
I soon found I stopped trying to explain our family, and found solace in autism support groups as well as the friendships I made in the autism community. For me, the sticking point was that I could never fully divulge how sad it made me that I would be gone for half of Justin’s life, unable to comfort him, protect him, or just spend time with him after my death.
I came to see that unless you’re in the situation it is impossible to fully comprehend it.
But I did make friends with a number of other autism moms (and dads) and learned the glory of being able to say “he hasn’t really slept for two weeks” and knew they understood I was lamenting the present, but also worried that this was our permanent future. It was an incredible release for me to find these companions, to not have to explain, to receive their unconditional empathy.
I truly hope the gentleman in our church service felt all that with just the touch of my hand.
There’s still so much controversy within the autism community, although I do think we’ve made much progress since the early days of autism, and even since Justin was diagnosed just a decade ago. There are still so many “camps”- neurodiversity, parents searching for a cure, and everyone in between. It can be daunting at times to know where we fit in to this wide ocean of opinion. I know I often float back and forth, take a bit from one side, weave it into my experience with the other.
But no matter where I stand, I know I want to be seen.
When I’m out with Justin and he’s flapping or saying “eee” at the top of his lungs I want people to look me in the eye and smile, to know that my son is fully present in his moment, and happy.
I want to see the parents hearing their son speak for the first time.
I want to see the single mom struggling with an adult autistic son whom she’s worried might hurt her, or her other children.
I want to see the child who had their first successful outing without behaviors and loved every minute of it.
I want to see the parents anxious out of their minds with the child engaging in self-injurious behaviors.
I want to see all autistic people and their families. I want them to be seen, to be heard in whatever glorious manner they’re capable of being heard.
I want us all to see one other, to offer each other comfort, companionship, and strength.
I don’t know if I’ll see the gentleman from church again, but I hope he knows he’s found a safe haven in our services. He was seen, his son was heard, they both were welcomed.
In the end, that’s what all of us deserve.
October 7, 2014
Today’s post should come with a warning- it’s messy, there are no pretty vocabulary words, just truth.
My boy is struggling, and by extension his family is too.
Today, I’m just done.
Zach’s been plagued by insomnia for the better part of four months now, and since sleeplessness with a child is a family affair, his mom and dad have experienced it too. We were on top of it from the start- I enrolled him in a sleep study through the Autism Treatment Network/ Autism Speaks at CHOP (the nurse made house calls, it was fabulous.) We cut off technology after 7:00 PM.
We made his room as dark as he could stand it. We’ve upped melatonin, given warmer baths, used massage, yoga and breathing techniques to relax (all of which have worked to make me sleepy, not him.) In an act of desperation I even tried aromatherapy, which sadly my boy finds disgusting (but hell, at least I like it.)
Truly, we have left no stone unturned (and I know because I’m the one turning them.)
And I’m trying not to go to my dark place (it’s where the awful thing is PERMANENT AND WILL NEVER GO AWAY, anybody else ever visited there in their autism journey?) as it’s obviously counterproductive. Hopefully, it’s not true either. Today, as I hauled my tired middle-aged ass out of bed at an ungodly hour to deal with a tangled blanket I reminded myself that we kicked this demon once this summer, enjoyed a two month respite from seeing our child 24/7.
Today I am really up for a respite repeat.
Short of that I’m going to remind myself that so much that happens with autism is cyclical, that we’ve been through periods of aggression and insomnia and extreme OCD with Justin and have come out the other side. We will with Zachary too.
At least I’m telling myself this, because I’ve already eaten three days worth of chocolate to “wake up,” and the situation’s getting serious. The holidays are approaching after all.
The truth is I just feel so badly for him, because he’s a wreck after these nights, and I know his little body wants and needs the sleep. And since the “sleep spell” I made up for him no longer seems to be working, I’m throwing this out to the universe.
Let this boy sleep. Let his mom and dad sleep too.
And hurry up about it because I’m running out of chocolate.
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September 29, 2014
A few weeks ago I had the honor of speaking at the kickoff for the Autism Speaks Philadelphia walk, and I thought I’d share my words from that evening with all of you. It was a great night and I met many amazing families. Thanks and enjoy!
Good evening, my name is Kimberlee McCafferty and I’m so honored Autism Speaks invited me to talk to you tonight. As a teacher I’m used to speaking to classrooms of ten-year-olds, so if I seem a bit nervous, please bear with me.
My husband Jeff and I are parents to two beautiful boys, both of whom have autism. Our youngest, Zachary, is seven and has informed me he’d like to be president one day, so please vote for him around 2048. Our oldest, Justin, is eleven and has just started speaking his first words, and forgive me for bragging, but his is one of the most affectionate souls to ever grace this earth, plus he gives the best hugs ever. Jeff and I consider ourselves the luckiest parents on the planet.
Our autism odyssey officially began in Washington DC ten years ago when Justin was diagnosed at seventeen months, but I feel it truly began when he was half a year old and started spinning everything he could get his hands upon. We were initially told his language delays just mirrored those of his father and frankly every male relative he has on both sides of his family tree, but in my soul I knew there was more.
I knew he was different. Different, but never less.
Eventually my concerns were realized when our pediatrician informed me my child had a neurological disorder by thrusting several miscopied articles with “autism” in the title into my shaking hands, then ushered me out of the room with a grim “good luck” and a hastily scrawled phone number for a developmental pediatrician.
I went home, put my son in his exersaucer, called my husband and mother, and cried. Over the next few months I shelved my grief for the “typical life” I thought we’d lead and began to embrace the one we have today.
To say this was both the most difficult and most important choice of my life would be the understatement of the last century.
Even though I’d been a teacher for a dozen years I knew very little about autism, so I did what most parents do in our situation. I went on the internet.
The internet, and chat groups, told me a lot of things about autism. At the time, the concensus among many parents, professionals, and autism organizations was that if my son didn’t speak by age seven he never would. They told me my second son’s regressive autism would likely end up more severe than my first son’s type. The web told me my youngest might never regain the light in his eyes that seemed permanently extinguished following two back-to-back illnesses which seemed to claim his soul at twenty months. I was told I was only a good mother if I searched exhaustively for a cure. I was told I was only a good mother if I completely accepted my child for who he was and didn’t try to change a thing. The internet spoke of isolation, of the loss of friends. It regaled me with stories of tantrums and insomnia.
Okay, over the past decade we have battled with those last two.
Finally, stubborn woman that I am, I decided I no longer wanted to be told anything, that instead I wanted to learn.
And since ABA was not provided under Virginia’s Early Intervention program in 2004 I got trained to deliver thirty hours a week of therapy to my son for eighteen months.
By the way, I do not recommend being your child’s primary therapist if you want him to like you or you wish to retain any last vestiges of your sanity.
But far more than the dance of reward and demand of ABA, I learned how to reframe my life.
I learned, perhaps most importantly, to take care of myself and to thank God for Grandma’s babysitting stints which kept my marriage alive (hi honey!).
I learned the web was right about losing some friends; I also learned to shamelessly replace them by making friends with all of my sons’ therapists.
I learned to revel in the timbre of Justin’s “EEE” resounding throughout his school when he sees me on days I pick him up early.
I learned to overcome my kitchen phobia to make gluten-free chicken nuggets from scratch (and hated every minute of it).
I learned Zach’s bravery has no bounds, for when his dad and I told him he and a lot of very famous and bright people had autism he simply jumped up and down and was so proud to be autistic.
Then he asked for more Cheetos.
I learned that autistic people not feeling empathy is, well, crap, as evidenced by Zach wanting to save every bug no matter how small that lands in our pool.
I learned that not only were the professionals wrong about Justin not talking, but that my eldest, severely autistic son would be reading aloud his first words to me at eleven (and he’s so proud of himself).
I learned that my beautiful, brilliant often messy children shatter my expectations of them daily.
I learned never to give up trying to give them the best lives, of their own unique design, possible.
I learned, and this one was a big one for me, how to ask for help. Autism Speaks has personally played a huge role in assisting my family. They’ve helped get legislation passed in our state for autism services so Jeff and I wouldn’t go broke, and I’ve often turned to their wonderful tool kits in moments of semi or full desperation.
My two favorite ways they’ve assisted us are how we found a developmental pediatrician through the Autism Speaks/Autism Treatment Network at CHOP who could finally help us with medications, and my personal favorite, the nurse who made house calls in the study we enrolled in through the ATN to help quell Zach’s insomnia.
Did I mention that last one was my favorite?
My husband, and by extension my boys, are so grateful Autism Speaks exists. In an effort to give back tonight I’ll be donating 100% of the money raised from sales of my memoir, Raising Autism, a book about the boys and our life together. Even if you don’t want to buy the book, please stop by and say hi. We have bookmarks and they’re free.
Finally, our family, initially forged in fire, has come to a place of acceptance, and gratitude. We truly love our lives. I want to thank you for your time tonight, and wish all of you and yours happiness and peace, and a successful walk on November 2nd.
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September 24, 2014
The phone is ringing as I make a mad dash through the front door from getting the mail, but try as I might my middle-aged body just can’t reach the kitchen in time. I have a moment to see that the caller is my eldest son’s school before my cell starts ringing, and I head for my purse hoping all is okay with Justin because his bus should be here soon.
I pick it up on the third ring and hear the happy voice of his speech therapist, and immediately I relax. It seems she’s calling with good news, will be working with Justin’s teacher to create a book using the words my son has recently acquired. It’s an idea I had after Justin mastered about thirty or so spoken words, a skill he’s worked on for the better part of a decade.
Honestly, it’s much more than an idea of mine. It’s a dream.
When Justin was little tantrums and behaviors dominated his days, and only two things seemed to quell his rage- Baby Einstein videos and books. No matter how upset he became I found a cuddle and an Eric Carle story could often calm his tears, and I lived in fear one day he’d outgrow these distractions before I could find a replacement.
At eleven these are still two of his favorites.
Back then I learned to relinquish what I thought would be the “norms” of most kids’ childhoods- the playdates, the “mommy and me” classes, and if I’m honest, my personal favorites, the mommy playdates I’d anticipated having at Starbucks. I let a lot go and learned to focus on what we could do together- our long strolls through the trails of northern Virginia, our power walks through the mall where Justin was always strangely happy, and most importantly, our coveted reading time. Even as a baby my boy loved books. Since stories have been a staple of my life since childhood, I became determined my non-speaking son would read.
And when he was three-and-a-half years old, we discovered not only that he could, but that words on a page or a computer screen helped him make sense of his world.
It’s been eight years since the momentous day one of Justin’s therapists asked him to pick out sight words from an ever-growing field of two, then four, then ten words. Since then he’s answered reading comprehension questions on his computer program, and he still loves to have his momma read to him. I’ve been thrilled with his progress.
Until recently however his reading has been a silent affair. Now his teachers are putting together a book of his acquired words. They will ask him to read it aloud to them, and will query him with follow-up questions to check comprehension.
I know they’ll send a copy of this book home. We’ll sit, me and my boy, and cuddle post-bath in the rocker I can’t bear to be rid of, and he’ll read me a tale. It will be a basic story, a construct with few twists and turns, a simple plot.
But to me it will sound like a door opening to a world of greater possibilities.
I hang up the phone in anticipation of his arrival, already eager to lay my hands upon his latest triumph. I smile, and head toward the door.
I can’t wait for this new chapter to begin.
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September 17, 2014
For me, last night was a little bit of magic.
Not Disney magic, or those fabulous nights when both my children sleep through the night until dawn, but magic just the same.
Last night I got to speak to autistic people and families of autistic children about my experiences with the boys, plus I got to use my book as a fundraising vehicle, which is pretty much why I wrote the thing in the first place.
Okay, the other reason was it was a cheaper catharsis than shopping, but that’s beside the point.
Last evening I had the honor of speaking at the Philadelphia kick-off for the Autism Speaks walk. About three hundred people were in attendance (since I’m used to speaking to about thirty kids at a time I frankly was in a cold sweat prior to “performing,” but I got through it), including people with autism, their families, and individuals just out to support the upcoming walk.
Melissa Zavorksi was my contact for the event, and the night ran seamlessly. Participants moved from informative station to informative station, and ultimately the night culminated in free food (yay!) and several speeches by parents and Autism Speaks employees. They were all moving and eloquent, and I was struck once again by the magnitude of Autism Speak’s commitment to the autism community, their dedication and drive to help families realize their best lives. I enjoyed every single minute of their stories.
But the person who stole the show was without question Sam, an autistic adult.
I listened, captivated by the story of Cathy Kanefsky, Vice President of Chapter Development and most importantly (according to her) mother of adult autistic twins. She shared her journey eloquently, one I felt was a great deal more difficult than mine as her sons are twelve years older than Justin, and I believe the autism landscape to have been a bleak and inhospitable place almost a quarter century ago. Cathy spoke with pride of her boys, and was able to have her son Sam come up and talk a little bit about his excitement for the upcoming walk (I’ll share with you there was some “roof raising” involved.)
It was so powerful to witness his enthusiasm, to watch him connect with the audience, to hear him speak with such grace.
And trust me, the audience loved him back.
I have to admit the best part of the evening for me was connecting with the families, hearing them share their stories about their children, and having them ask questions of me regarding mine. If I’m being totally honest my favorite encounter was with my new best friend Lakisha, who informed me “I didn’t look like I’d been through what I’d been through,” which I chalk up to a great wrinkle cream and even better genes inherited from my mother’s side.
Between her kind commentary and seeing Sam speak my night was made.
After talking at two different sessions the night wrapped up, and as my husband Jeff and I collected our gear I had a moment before sneaking one last pig in a blanket to reflect on the evening. I am so honored to have been a participant, to have contributed my story and some funding to this organization. What struck me as I met all the employees involved in putting this event together was both their zeal to better the lives of all autistic individuals and their families, and the magnitude with which Autism Speaks has accomplished just that. I am proud to have been just a tiny part of their efforts, and confident that with time they will realize their goals.
And I know this truth- than when things get tough with my eldest son, I’ll think about Sam. Sam, who connected with his peers, who has a job he’s paid for, who quite obviously delights in every aspect of his life.
This one’s for you Sam. Thank you.
September 9, 2014
I hate writing these types of posts.
In the last few weeks the news in the autism world has been searing, overwhelming, impossible to process.
An autistic teen in Ohio has a bucket of feces and urine thrown on him in a cruel prank.
Another autistic teen in Florida is invited to a party where is is beaten and then collapses. He thought they were his friends.
That part gets to me almost as much as what happened to him.
I am sickened when I read these accounts. I recoil from their graphic images imprinted upon my brain, pictures that take immersing myself in my childrens’ worlds to momentarily eradicate them.
These stories summon up my deepest fears, my intermittent nightmares that someone will hurt my boys.
For Zach the fears are a frequent and unwelcome companion. I hold my breath each morning as I shuttle him to school and send my bargaining pleas to the universe to let the children be kind to him. I hope that seven-year-olds will respect his differences, perhaps like him the better for them.
My concerns for Justin extend into later life. His is a cocooned world in which no interaction at present is unsupervised, but I know this won’t last forever. There remains the gaping maw of those forty years after my death which I can’t fill with my presence, the void I try to escape in my thoughts because it is just too damn painful.
Daily my last conscious thoughts are let me live a really, really, long time, and let the world be kind to my sons.
I can’t remain in this land forever however. There is homework to oversee, stories to hear, small wounds that thankfully I can at present bandage with love and care.
When I feel the weight of these events threatening to enfold me, I have to shift my thoughts. I have to choose to remain in the present.
Fortunately where we now dwell as a family is a land where without fail my boys are treated the way they deserve to be treated.
My deepest sympathies go out to those two teenagers and their families, and my most profound scorn is reserved for the perpetrators of these horrible crimes.
I mourn for them and mourn for how differently these events could have turned out. If only the boys’ differences were valued and respected, not reviled.
But I cannot remain here. Instead I choose to think of the myriad kindnesses bestowed upon my boys recently. The aide who bought my eldest boy a toy so he could occupy himself on the bus. The librarians who revel in Zach’s enthusiasm for books and make an effort to direct him to tales which will engross him. The gentle way my friend’s daughter encourages Justin to use the pool. Small acts of kindness that enhance our world, make it work.
They don’t negate the evil. But they help. God, do they help.
My son interrupts my reverie with his latest discovery about Star Wars and I am drawn ever more into the present, where as always he demands and receives my full attention.
And so, my final thoughts are of gratitude. To those who will hopefully bring harsh justice down upon those who acted with much malice in Florida and Ohio. Gratitude for the gentle ways in which so many of the people in my boys’ lives model empathy, kindness, compassion.
Gratitude that I am here to witness all of it.
August 24, 2014
Recently my youngest son told me he wants to lead his own country when he grows up (watch out world, he just might do it.)
I figured in that case, it was time he had a brush with politics.
Zach’s timing couldn’t have been better, as the Autism Cares Act was due to expire on September 30th, and I thought I could tie his newfound love of politics in with a lesson about the impact this legislation has had on millions of US families . We’d been talking a great deal about what this act has meant personally to our family, and the fact that US Representative Chris Smith of New Jersey had been one of the co-authors of the bill.
I’d discussed with him that I hoped it would pass again, and how Autism Speaks had created a campaign to encourage families to visit their Congressman and urge them to vote to pass the bill. When I told him Representative Smith had an office not far from our house he turned to me and said “I want to go thank him in person.” I then had to explain to a seven-year-old how extremely busy our Congressmen are, and how that probably wasn’t in the cards for us.
I will share with you that this initially did not go over well.
I figured out a way to placate him however with a promise of a trip to his office to meet his incredibly patient assistant Jason, a trip which would include a hand-written thank-you note he would personally deliver himself.
I was informed the trip would also include a stop for ice cream. My son has his priorities straight.
So on a cloudy Wednesday morning I packed my son, his note, and enough money for chocolate chip mint ice cream cone into my SUV. We soon headed out 195 to deliver our heartfelt thanks for Representative Smith’s hard work to help authorize the Autism Cares Act, which eventually culminated with President Obama signing it into law.
I think it’s obvious from the photo how Zach felt about the trip.
I’d like to take a moment to thank Senators Menendez and Enzi, as well as Representatives Smith and Doyle for their tireless work to bring this law to fruition, a law which dedicates 1.3 billion in federal funding for autism over the next five years.
And believe me, our families need it.
Special thanks also goes to Congressman Smith’s office for welcoming my son’s “mission,” and for responding so promptly to our calls.
My son is even more inspired to start his own country, or at least help govern this one.
And as I’ve said for years, with this child, with the right supports and help from our government, anything is possible.
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August 18, 2014
“Let’s go to the boardwalk Mom” Justin asks me, and I watch as he casually slings on his tivas and heads toward the door. He is clutching his tattered copy of “the Very Hungry Caterpillar” in one hand, munching on a soft pretzel with the other. In my dream state I feel both elated that he is talking to me in complete sentences, yet confused that this is happening. As I pick up my purse he pulls the front door open and gives me his signature grin. I scrounge around for an errant flip-flop as my alarm goes off, and dreams are done. I lay quietly for a moment trying to recapture the sound of his voice. I find its timber and tone escape me.
I reluctantly rise from the warm cocoon of my bed and begin my day.
I began having this dream a few months after Justin was diagnosed with autism spectrum disorder, back when sleep was fleeting for both of us and dreams were easier to recall. Ten years ago I would often wake up and feel desolate, certain my son would never speak to me in such a complicated fashion. The dream would be difficult to shake as I began my morning, and often I’d find myself hurrying into Justin’s bedroom to get my “fix” as nothing could chase away the blues more than the sight of my son. I used to have it frequently, but over the years its prevalence has faded, much as my initial despair at my son having severe autism has retreated as well. I’ve noticed it’s come back to visit me over the past year as we’ve been eliciting more words from Justin.
I’ve also noticed the dream no longer makes me sad.
I had a number of conscious dreams for my son even prior to his birth, goals I’m certain the majority of parents wish for their progeny. Back when I’d feel him swivel what would turn out to be his lanky limbs in my ever-burgeoning stomach, I’d smile and imagine he might have his father’s height, would perhaps shoot hoops one day with me cheering from the sidelines. I also hoped he’d have my love of literature, that we could share my favorites from childhood, and discover new works together. To be honest, I completely took for granted he’d achieve the biggest goals I had for him- college, career, friends, and independence. I barely gave them a moment’s thought.
For years, their elusive nature would haunt me. Now, for the most part, they no longer do.
It took me years to relinquish my dreams for Justin, almost a decade to comprehend that these were my dreams for my boy, not his. It took me almost ten years to understand that he did not have to follow my life trajectory to be happy- that his daily desires were commensurate in worth to mine.
Despite severe autism Justin is having a wonderful childhood, is mostly a happy boy, engaged at school and in activities he adores. He loves to play on the computer, stims on a segment of a DVD over and over, and craves his carbs. I’m not inside his head, but I imagine his dreams embrace these realities, that they bring him joy. My goals for him are not better than his. They are simply different.
And acknowledging, accepting and embracing this realization has brought me peace.
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