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!
July 1, 2014
Zach smiles up and me and gifts me his typical “I love you Mom” before he boards the bus, and I smile too and return the words in kind. I walk up to his window and blow him a kiss (another part of our daily routine,) and he quickly sends one my way as he buckles himself in and his driver resumes his route. I take a deep breath and send my wishes out to the universe, as Zach has some big challenges coming up, and I wish with all my heart he’ll be up to the tasks ahead.
I’ll know in one hundred hours.
It’s been a stressful two months with my youngest chez McCafferty. In respect for his privacy I won’t go into great detail, but he’s been affected across the board, at home, at school and in after-school activities as well. In typical fashion I’ve thrown all our resources at trying to help him, and just within the last week I’ve felt a shift back to the honeymoon days of September to April, have finally let myself relax a bit as my happy Zach returned. It’s been awful to watch him suffer, to feel that I’ve exhausted my bag of tricks and know that in the end his return to “happyland” will be up to him.
Truly, for all children with or without autism, dwelling in “happy” is ultimately up to them.
I remember to be grateful for this respite, while silently hoping our peaceful oasis remains for the duration. I think about the important events he has ahead of him this weekend- a crucial karate class, a Cub Scout “crossover” which will likely include a great deal of down time, two parties, and a performance in front of the entire congregation at church on Sunday.
Nothing like ending the school year with a bang.
We walk a fine line with Zach, encouraging him to be his wonderful autistic self let allowing him to engage in activities with mostly neurotypical peers, and most of the time he handles things beautifully. It’s when the hiccups occur that I begin to doubt my choices, have to remind myself that these are things he’s asked me to do, and has subsequently reveled in his participation. When things were at their roughest I had asked him if he wanted to quit anything and his answer had been a resounding “no,” and I’ve honored his desires. At the same time however I want him to be successful at his activities, to be a full participant, to feel good about himself.
And despite a harrowing eight weeks preceding this weekend he sails through every event with flying colors. He’s happy, but trust me, his mother is thrilled.
As I listen to him recite his speech perfectly before the congregation on Sunday I literally feel relief wash over my entire body, feel a sigh escape me as I watch my boy head back to his appointed pew. I realize I’ve been metaphorically holding my breath for two months, but something was different this time. There was a subtle shift in my perspective, nothing anyone would notice, but a shift nonetheless that has become glaringly apparent to me. You see, this time I let myself believe that everything would be okay.
And it was.
I look at the back of my son’s blond head far ahead of me and think of his progress this year, how his karate teachers have praised him, the growth his church school teachers have seen in him since the beginning of kindergarten. But as I sit and let our minister’s words wash over me I think of my progress too, how even six months ago I would have been a complete mess anticipating the events of this weekend following his crisis period, how I might have chosen to keep him from attending some or all of them.
Despite the difficulties that autism often presents us I’ve learned to take more risks with Zach, to let him stretch his wings, even to let him learn how to fail. I’ve learned to take more chances with harboring hope as well, to have faith that one bad patch doesn’t mean a permanent path of bad. I’ve also learned that at least in our house, challenges are cyclical. At least right now we’re on an upswing, and by God I’m going to enjoy it, not just for my boys, but for me too.
One hundred hours. It’s a victory, and I couldn’t be more proud of my boy.
June 22, 2014
I’d like to take a moment to thank my readers for their responses to last week’s piece, “The View From Here,” about the closing of two New Jersey developmental centers for disabled adults. I’ve had many inquiries as to how to help, so I am posting a link below from the VOR. It is time sensitive and action must be taken by Monday, June 23rd. If you have a few moments and can write or call your legislators regarding New Jersey Assembly Bill A1110 or New Jersey Senate Bill S2198, I would greatly appreciate your help. These two bills will slow the proposed closures of the Woodbridge and North Jersey Developmental Centers and the transition of disabled individuals back to New Jersey who now live in specialized out-of-state settings.
Thank you so much for your time, I truly appreciate it!
June 16, 2014
I didn’t want to write about this today. I’ve been following the story for months, and truth be told it makes me feel raw. It hits too close to home, takes me out of my comfort zone.
Which is why I have to write about it.
In the past few months two men with severe mental and physical disabilities died from choking after their transfer from the North Jersey Developmental Center in Totowa New Jersey to privately run group homes. The move is part of a massive restructuring of care for disabled adults.
Their names were Richard Fornarotto, 54, and Steven Cortes, 65.
The state is closing the North Jersey Developmental Center and the Woodbridge Developmental Center in an effort to help improve the lives of thousands of disabled adults because this will help integrate them into their communitities. Advocates for the disabled say the plans will unnecessarily disrupt lives, and many of the families are fighting the closures.
Nicole Brossoie, a spokeswoman for the State Department of Human Services, was quoted in an article by Stephanie Akin in NorthJersey.com as saying “there was no causal connection between deaths of residents and transfers from community centers.” She also is quoted as saying that “the administration firmly believes that all individuals deserve to be cared for in the least restrictive environment available.”
Richard Fornarotto and Steven Cortes were under the care of state-appointed guardians as they had no living relatives to handle their affairs. The two men had lived in state institutions since they were children.
They were two of the 639 residents in the centers scheduled to be moved from these centers to privately run group homes.
Cortes had lived in developmental centers since he was eight. His care was supposed to include ground up food and constant supervision. He choked on a sandwich while sitting alone in an office. By the time paramedics were summoned to the scene and discovered food lodged in his throat, it was too late.
Mr. Cortes died on May 17th.
Fornarotto grabbed a cupcake at Shoprite from a shelf and shoved it in his mouth while on an excursion. When he started choking the group home staff members ran to get water and asked the store customers to watch him. State law requires staff must immediately perform CPR and call 911.
Mr. Fornarotto died on February 19th.
I didn’t want to write about all this today because the subject plays to my deepest fear- that for the thirty to forty years Justin will grace this earth without me something terrible will happen to him, and neither his father nor I will be there to help.
The quote that struck me the most from the article was from my friend Geoff Dubrowsky, a member of the New Jersey Council on Developmental Disabilities and a guardian of three people with disabilities, who said “These deaths sadden me but they do not shock me.” He also commented that “When you move somebody from a facility where they have been most of their lives, surrounded by the people who know what kind of care they need, these results must be expected.”
He was saddened, not shocked. That alone is horrifying in and of itself.
I wish I had the answers to the state budget issues and a way to ensure each autistic individual’s personal care requirements. I don’t. But it strikes me that when contemplating closures of this magnitude each person must be looked at on a case-by-case basis, with strict precautions put in place to prevent injury and deaths such as these if they are relocated.
I am left with questions.
Why did Cortes have access to solid food?
Why was he alone?
Why did staff members not perform CPR on Fornarotto in the store?
Why was he left unattended even for a brief time with total strangers?
My son with severe autism graduates in ten years. Just a decade to go until Justin’s parents, who will be pushing sixty, have some difficult decisions to make.
As usual, I want to remain hopeful.
I admit however, when I contemplate his post-twenty-one future, the view from here leaves me scared.
Scared on a good day.
To both men and any remaining family members, I am so, so sorry.
Link to article in NorthJersey.com: