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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August 11, 2014
Today is a milestone of sorts for me. No, not the fun marriage kind, or a celebration of my kids’ births, or a more somber reckoning of someone who’s died. Today I’m recognizing an achievenement of mine that in the early days of writing this blog I wasn’t certain would come to pass.
Today I’m posting for the 500th time.
I remember clearly four years ago when I still thought that “blogosphere” was a made-up word. Frankly I wasn’t certain I’d have that much to write about, or that anyone would care. After all there were already a zillion autism bloggers out there, and I often wondered if I’d have anything novel to contribute. Couple that with trying to keep the two autistic kids alive and I wasn’t certain I’d make it to this milestone, or even past a few weeks.
Well, it’s four-and-a-half years later, and I’m still here.
I fully admit I started writing in part as a means to vent (and when appropriate, to brag) and in part because I wanted to help other people with special needs kids navigate the often choppy waters of autism. I’ve met some fantastic people along the way, and am so grateful for those who’ve taken time to comment of Patch and on my blog, many of whom have shown me so much support.
It turns out I needn’t have worried about finding things to write about- there is always something going on here, and that holds for the larger autism world too. I hope to keep writing here through Justin’s adulthood, as I believe there will be a lot for me to say on this topic (I’m hoping in ten years the majority of it will be good.)
Before I end this post I just want to say thank you again to my readers for all their support. It means the world to me when someone tells me they enjoyed a post, or particularly that it helped them get through a tough spot. That’s the whole point of my carving out the time to do this, and it is a thrill to hear that I’ve helped someone.
Thank you again!
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August 4, 2014
Happily, today I have wonderful news to share.
This past week saw our Senate unanimously pass the Autism CARES Act of 2014, meaning that bill S. 2449 is on its way to President Obama, where he will sign it into law. The Autism CARES Act reauthorizes the Combating Autism Act of 2006, which dedicates $260 million a year in federal funding for autism services over the next half decade.
I’m proud to thank New Jersey’s own Senator Robert Menendez and Congressman Chris Smith for their tireless work on this legislation. This bill when signed into law extends already existing federal programs through 2019, programs which include education and support services, as well as a focus on autism research. It will require that a report be written focusing on the needs of young adults on the autistic spectrum and what they require when transitioning from school-based services to services they will require in adulthood. The goal is the findings from this report will serve as a blueprint to help families achieve long-term success for their autistic loved ones.
I want to say a special thank-you to Senator Menendez and Congressman Smith for their advocacy and dedication in seeing this bill pass once again. Justin will be leaving school in ten short years, and my deepest hope is that there will be safe and viable options for him in terms of residential placement and employment. The Autism CARES Act is one more step in the right direction for those dreams of mine to come true.
Thanks again to our Congressmen!
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July 28, 2014
“Come here Justin” I say quietly, and as always my towel-clad boy obeys, happily sliding into my lap for his post-bath cuddle. We have a routine for our bed-time ritual that we adhere to religiously, and I can tell my son enjoys the familiarity, smiling at each step in our path to bed. Tonight however I’ve decided to deviate just slightly from our norm, as I want to try something different within our usual arsenal of me saying the coveted nineteen words he’s so recently acquired, then waiting eagerly for his response.
Tonight I simply hold up the word list, and wait.
He looks at my mouth curiously, waiting for those hard-won words to spill forth, but for once I just point at the list. Justin regards my outstretched finger for a good thirty seconds, then I swear I see a slight grin slide across his face as I listen in amazement.
Ten years ago we were told if he didn’t speak by the age of seven he probably never would.
We heard his first coherent utterances at ten.
He takes a deep breath and shifts slightly on my lap, then forges on.
Ten years ago we were told there was a good chance he’d never read.
We watched him master his first sight words at three.
Justin seems to gear himself up for his finale, not the slightest bit daunted by the fact he’s facing new words he’s just learned this week.
“Bed” (a favorite)
I can feel his focus shift as his eyes slide away from the paper I’m clutching. As I balance my boy I sense the display of his newfound skill is over, and I see him eyeing his toothbrush as he scoots off my lap. It’s a momentous moment this, one I want to savor as I think of all the “can’ts” and “nevers” I was told or read about a decade ago, many that sent me hurtling toward despair. Justin may never have conversational language, may never even use a technological device to solicit more than his basic wants and needs.
But no matter what, he has this. He can read to his mama out loud.
And I have a reminder to always push him to be his best self.
July 21, 2014
I am, as they say, just a tad overwhelmed.
I always promised myself I’d “tell it like it is” here, and I’m doing so today. We’re into week six of summer chez McCafferty, and both kids have been experiencing some rather daunting issues. Justin’s stomach has been plaguing him off and on for over a month, forcing us to consider diet changes and reinstitute scheduled potty breaks we haven’t had to do for years. We’ve also had to witness tremors that aren’t seizure-related halt him in mid-stride, which are agonizing to watch. His “people” are on the situation, and we’re exploring med changes and have had tests done to see if we can figure out what’s going on.
The truth is sometimes he’s suffering, and I hate it.
After a six-week stretch with Zach this spring that made me eternally grateful for the invention of wine we finally struck gold with a new medication, only to have it render him an insomniac and throw us back to the drawing board, which is where we now dwell. Considering how boring I am in my need to sleep more than a few hours a night things have been challenging (and mommy has been very, very grumpy.)
And yet, it’s the little things that get me through.
In the midst of the chaos there is this. My youngest son completed two weeks of acting camp with only one brief meltdown, enabling him to perform as a dinosaur, a dad, a cat and a “guido” respectively to a deeply appreciative audience. He crawled into a hotel bed with my mom after their flight to Kentucky had been cancelled, and told her “it doesn’t get better than this,” accepting the drastic change in their itinerary with ease.
He’s mad at me if I don’t schedule multiple playdates for him a week.
Yesterday my eldest son got spruced up in his “fancy clothes” and performed in a horseback riding show with the air of an old pro, which was fabulous in and of itself. Even more wonderful was the huge smile breaking out on his face as my mom and step-mom pulled into the space next to us, and his obvious pride afterwards as he gently held up his ribbon and beamed into the camera. At our celebratory trip to Great Adventure afterwards he made it through a rainstorm and a twenty-five minute wait for a burger (just two more minutes Ma’am, really) with nary a complaint.
He kisses me at least a dozen times a day for no reason.
It’s so easy to get completely bogged down by the big things, the ones that claim a hold on your heart with a grip like a vise that will never let go. I get tangled up in the detritus of their need, enmeshed in their suffering, and at times I lose the light.
But if I remember to look, there is almost always the light.
Sometimes it’s big and messy and glorious.
Sometimes it’s in the little things, the ones that tap gently on your shoulder that can be so easily missed.
I am so grateful there is still light here.
Grateful, as always, for the little things.
July 14, 2014
Today I’m going to share with you a tidbit about me that will surprise no one who actually knows me.
I am a worrier (and a warrior too in case you read that quickly, but mostly a worrier.)
As my mother says I come by my anxiety issues honestly (four generations worth,) and even in my youth although I wasn’t plagued with worries, no one would have mistaken me for a bohemian.
Hippy was not in my genetic legacy.
I would have to say anxiety did not become an issue for me however until after my first son was diagnosed with severe autism, after which said anxiety reared its ugly head on a daily basis and made mine its permanent residence. In the early days of Justin’s diagnosis it raised such questions as “Will my son ever talk?” (yes). “Will I ever sleep again?” (eventually and sometimes). “Will he ever stop crying and become what I believe to be his true, happy self?” (Yes, yes, a grateful and resounding yes).
These worries were also coupled with fears that he would never go to college, be fully employed, or live independently, and those fears have been realized. Justin won’t go to college. He won’t hold a full-time job. He will never live without full-time assistance.
I spent hours every day for years agonizing that those fears would come true. They have. He’s still okay. Our family is okay. In fact, on many days, Justin’s the happiest one in our house.
Recently, a friend sent me an article which I actually read (generally these helpful pieces from friends sadly languish in my inbox waiting for me to peruse them,) and I found it so helpful I have to share. The article was on the “Empowering Parents” website and was about “futurizing.”
Futurizing is described as “taking a present action or behavior and imagining a much worse outcome in the future,” and it describes me to a “t.” I do this constantly. Zach will have a meltdown and I immediately leave my happy place and imagine he’ll never have friends/hate me/never go to college/get bad grades, etc. Justin will have a tantrum or get a bad report from school and I envision a return to months of pinches and crankiness, a place we have dwelled many times but have not fully visited (thankfully) for years. It’s like a switch goes off in my brain- anything bad portends a terrible future.
And when I do this, when I allow myself to go there, I am robbing myself and my child of the chance to make a plan and create a better situation.
The article goes on to talk about remembering that kids change, and promoted meditation and mindfulness as ways to keep calm when dealing with our children, and I found the suggestions listed there very helpful. What struck me most however was the realization that every time I “futurize” I cheat myself and my child of any chance to reconcile the situation and create a better outcome.
So, yesterday I got the opportunity to practice what I preach.
Justin came off the bus in a “mood,” was crying as he entered the house and flung himself onto the couch, which is not his normal entrance. I brought him his iPad in the hopes he’d tell me what he wanted, but he just pushed it away. So after offering him hugs, juice and popcorn and woefully striking out on all of his “faves” I took a deep breath, removed myself from the room, and thought.
His teacher had emailed me that part of his lunch had fallen on the floor and had to be scrapped, and although obviously not full he had refused all snacks as compensation. I knew he was hungry, and defeating that low blood sugar moment was my goal. I told myself to think.
And then I remembered the glories of the gluten-free bagel.
We’d recently had a rough few days with Zach not sleeping well, and I had dragged myself to the store Sunday morning to find him the GF bagel he was requesting, as I thought that would help us get through the day. I remembered that Justin had eyed it curiously, but I had hidden it quickly as his therapist was coming, and I wanted to delay his mid-morning snack until her arrival.
Somehow, in my sleep-deprived brain, this memory surfaced.
I quickly took a bagel from the fridge and presented it to him. Justin sat up, tears still streaming down his face, and looked at it longingly. I asked him if he wanted it. He shook his head yes (I’m still so grateful he can do this now.) I hugged him, and made a beeline for the toaster.
If I hadn’t cleared my mind and remained in the present I never would have thought of that fabulous carb.
Trust me, this will take practice on my part. I’ve got almost fifty years of futurizing under my belt, so this tendency won’t be eradicated overnight (although I’m certain my husband wishes it could be.) It will take work, patience, and on some days a herculean effort to remain in the now.
But I’m up to the challenge.
I’m listing the link to the website below in case any of you want to take a look, and if you do, I hope it helps. I have a feeling I’ll have many more opportunities to put this new strategy into play, and my wish is that over time employing it becomes easier.
And in the meantime, I sincerely hope that things become easier for you and your family too.
July 7, 2014
I love (almost) nothing more than being able to tell you I’ve got a safe, fun, and inexpensive activity to share with you that meets the needs of autistic children.
Okay, maybe I love chocolate and wine more, but you get my gist.
I am always looking for ways to get out of my house (have been that way since I could walk, don’t think it’s going to change any time soon,) but have found that goal to be more difficult at times (understatement of the year) since having two autistic children, one on the severe end of the spectrum.
I believe my kids’ issues with going places often stemmed from sensory overload, which I’d try to ameliorate as best I could. Often (especially with my oldest) I’m convinced Justin simply didn’t want to leave the house, which is fine once in a while, but not every single day. Slowly but surely over the years I’ve learned how best to take my kids places, and the world has opened up to us.
I won’t lie when I tell you it’s been hard work.
Traditionally however there’s been one place that always worked for Justin, and that’s been places like House of Bounce and BounceU. Fortunately we live in close proximity to both, and have taken advantage of “open bounces” periodically throughout the years. I’ve found he often wants to leave after half an hour however, a time period I’ve felt is not commensurate with the amount of energy and packing up I had to do to get him there. At times I’ve wondered if it’s just too much sensory overload for him, and have always dreamed of a bounce session more tailored to autistic children just to give it a try.
And now, that dream has come true.
BounceU of Eatontown is launching a new Sensory Rebound Bounce, great for autistic children. BounceU was originated with a primary goal of providing all children with special needs a safe, fun place to have open play and/or host their birthday parties. Sensory Rebound bounce is limited to children with special needs and is hosted in a vast indoor environment, giving children and their family members plenty of room to bounce & play safely. Eventually the goal of BounceU is to get this sensory rebound session to include an occupational therapist. My friend Francine Banick is helping run it and has asked for my input to make it the best it can be, and I’m looking forward to checking it out in the next few weeks.
Trust me, this is a woman who will make sure it fits our needs.
Sensory Rebound starts in Eatontown on Wednesday July 2nd at 3:30-4:30 and will run bi-weekly for only $9 per bouncer. Marlboro location starts Wednesday, July 9th at 3:30-4:30 and will run bi-weekly throughout the summer as well. Parents bounce for free & siblings may also bounce for only $9.
Reservations are recommended, so call (732) 935-0010 for the Eatontown location, and (732) 972-6862 for the Marlboro location.
I’ll be checking it out soon, hope to see you there, and have a safe and fun summer!