Although it’s been seventeen years since my family began their autism journey, I remember the sense of both relief and panic that assailed me after my eldest son’s diagnosis. There was so much to accomplish. Finding and training therapists because Virginia’s Early Intervention system was a joke for autistic kids; teaching him how to eat; how to sleep; and at the time, our hope we would be able to elicit functional speech. I was so overwhelmed in those early days and months, but I recall that one of his therapists said something to me that stuck even in those sleep-deprived days.
Don’t forget to teach him how to have fun.
I know it sounds ridiculous to have to teach a child to enjoy himself, but with Justin, we did. He could spend hours amusing himself by spinning objects, and he loved his Baby Einstein videos, but that was about all that enticed my son from a pervasive crankiness I was desperate to alleviate. When he was little Justin hated the car (we later had respite from this when we could turn his car seat around), so most of our outings were relegated to the stroller and neighborhood walks. I knew that I would have to encourage Justin to like leaving the house and doing things, both for my sanity, and for his future.
Even then I knew if he ended up living in a group home one day, he’d have to leave it eventually.
Slowly, I taught my son to tolerate the mall by taking longer and longer trips there- eventually, especially after we were able to turn around his car seat, he began to get excited when I put him in the car. We conquered the sounds of the parking lot, elevators (that took a while), and the general noisiness of the mall itself. Later, when we moved to New Jersey, we began taking outings to our local boardwalks, Great Adventure, our pool, and the beach. At all of these venues we had to build up both longevity and tolerance. In the beginning I sometimes bore the marks of his discontent with waiting on line, but in the end it was worth it.
Trust me, it would have been so easy to give up. All of this acclimation took years. Sometimes, it felt hopeless.
But it wasn’t. And now, at seventeen, there are a multitude of places we can take him, including Disney and Universal Studios. And I am convinced he would never have been able to tolerate the plane ride or the parks if we hadn’t accustomed him to venues when he was very young.
Leisure skills inside the home are important too. We are fortunate in that Justin enjoys the computer, his DVDs, and even will occasionally watch a feature movie on tv. We tried many activities over the years; many did not stick. The important thing however is that we tried, so we could cross some things off the list with at least knowing we’d given them a shot.
If you’re just receiving a diagnosis for your child fun is probably the last thing on your mind- there are more immediate needs to attend to. One outlook however that has served me well over the years when I’m confronted with an issue with Justin is to ask myself if this will be a problem for his caregivers when his dad and I are gone. If it’s not, I can drop it. If it is, I do my best to come up with a solution.
The truth is, Justin will reside with caregivers for going on forty years of his life. They will want to leave their group home on occasion; by exposing Justin consistently and repeatedly to experiences outside the home he came to love outings, which will help him later on.
Yes, I’m a planner. But whether I want it to or not that future where I’m not there for him will one day come- my plan is to leave him as happy and accommodating to other people’s plans as humanly possible.
Leisure skills are key. When the dust has settled and more pressing concerns are addressed, give an outing a shot, even if it only lasts five minutes. Try to find that one thing your child is passionate about that can be a sustaining interest for his lifetime.
I realized today while taking my morning walk that I missed my ten year “blogiversary” in March. In my defense we had just entered a global pandemic, so I can forgive myself.
But a milestone like that deserves to be celebrated, so here we go.
I went back and read a few of my early missives, feeling a great tenderness for that girl who had no idea what was coming down the road, but who was a bit seasoned in the autism chronicles as she was raising a seven-year-old and a three-year-old who both had it. I wrote a lot about writing my book (which I’m glad I did ten years ago as I’d never have the energy now), a lot about sleep deprivation (which I still have on occasion but it’s my fault entirely now, and not due to my kids), and an awful lot about acceptance and trying to keep a positive attitude when dealing with the struggles and challenges of raising an autistic kid.
And of the three, I’m still writing about the latter today.
My feelings about autism acceptance have shifted in shape over the years. I’ve read countless blogs from neurodiversity advocates and self-advocates, from parents striving to eradicate most or all signs of autism in their children to relieve their suffering, and everything in between. And the truth is, after seventeen years of living with autism 24/7, I cannot be put entirely into either camp.
Or rather, I refuse to settle down into any one camp.
I have two boys with autism, and they could not be more different, nor could their life trajectories. My youngest has regressive autism, where he developed typically for eighteen months then descended into a hell of losing all his speech and the very light from his eyes. After years of therapy my last son is now fully mainstreamed, has friends, and is taking Algebra 1 in the eighth grade, which mystifies his extremely math-challenged mother. He, like most boys his age, spends a lot of time in his room texting his friends, and is really, really grumpy sometimes when he wakes up.
I know, welcome to the teen-age years Kimberlee.
Despite trying really hard all these years I still to my chagrin can’t predict the future, but I am pretty certain my youngest will attend college, hold a job, have friends and love, and eventually move out. It doesn’t matter to me what university he attends or how lucrative his job is (as long as he can support himself) if he’s happy, safe, and productive. Trust me, I will feel like we won the lottery if he achieves all these things, because the statistics aren’t great, but still I feel he has a fighting chance.
And if he does, it will feel like we won the Megamillions.
My firstborn has had much more of a rocky road. I believe there were signs from him from the get-go, things like his constant aversion to sleep, his difficulty nursing and eating in general, and an all-pervasive crankiness no matter what I did. These things coupled with his penchant for spinning things at six months and his speech delay earned him an autism diagnosis at seventeen months, which was incredibly early back in 2004. Despite constant and quality therapy from seventeen months on, as well as my son has done, he will never live independently, will require life-time care that I’m wondering how I’ll coordinate from beyond the grave (because if I can pull it off, I will). My boy also has OCD, tic disorder, and intellectual disability, all of which have created a myriad of challenges for him and his family over the years. I am thrilled to say he is a mostly happy young man, but one who will need constant support over the decades to come.
And that is the crux of my issue with acceptance right there, because I won’t always be here to give it to him.
Don’t get me wrong. I completely accept that both my boys have autism. The fact that they’re different is not what I take issue with. We’re all different from one another, and that’s what makes a better and far more interesting world.
But I won’t be shoved into either the neurodiversity camp or the “cure camp,” because I have two boys with completely different needs and different projected life outcomes. My oldest can’t protect himself from predators; he literally can’t say the word “no,” nor might know that what someone is trying to do to him is wrong. And that is the bottom line for me, his inability to protect himself for decades to come, that prohibits me from embracing every aspect of his severe autism.
I know my feelings about this will never change no matter how many blog posts I read.
I feel completely differently about my secondborn. His autism presented challenges for him the last thirteen years, but frankly every kid has some challenges, and I firmly believe that some struggle is good for the soul. He has friends, love, is thriving in school and all his activities, and can most likely remain safe in this crazy world. I love his perspective on life- I wouldn’t change a thing.
So here’s what I accept. I accept that difference is beautiful. I accept that my goals for my children will remain obtaining their safety, their happiness, and their independence. I accept that I would change whatever I could to give them those gifts, even if it meant lowering their level of autism, which I believe would have no impact whatsoever on the core of who they are, because that core is love, not autism.
And I accept that I can both love them for who they are, and forever wish their struggles were lessened.
The reality hit me from the email I received from Justin’s case manager yesterday. It included a letter introducing herself to the “newbies” in our town who are sending their children to Justin’s private autism school for the first time, and a reminder to the “oldies” that fortunately she would be sticking around again this year. I almost missed it as my eyes quickly went to the meat of the message to make sure she wasn’t being replaced, but eventually they returned to the top; under “student name” the words “grade 12” were prominently placed.
Grade 12. It is Justin’s senior year.
When I was carrying him, this really isn’t how I thought it would go.
Of course six months ago I didn’t think we’d be embroiled in a world pandemic that would last six months and have no forseeable ending, so maybe my powers of prediction aren’t that strong. I will tell you however that I never thought the child I was carrying would be spending his senior year in an autism school, not contemplating prom nor SAT prep nor driving.
Perhaps I don’t mourn the latter quite so much.
There are people in the community who would berate me for mourning these things almost two decades after his birth, perhaps lamenting that I don’t accept and revel in him as he is. Frankly, I say that is ridiculous. We are so connected, this child of mine who made me a mom. It’s okay to be sad he won’t have those choices, because for me it’s really about the lack of those choices, to love, to learn in college, and to drive to his girlfriend’s house. It is okay to wish he had these options.
I don’t believe it’s okay to be so distraught with grieving seventeen years later that I can’t help him be his best self, or enjoy him for who he is. And I’ve worked really hard over the years to get to that place.
I have shelved those losses, but I admit I haven’t shelved them all. I will never be at peace with the fact that I must likely won’t be here his whole life to love and shelter him, to keep him safe. Will he have a brother and cousins to help him carry out that sacred task? Absolutely. Will it ever be enough to give me peace of mind? Absolutely not.
That ache, that worry and concern, will never fade for me.
I have found over the course of living with autism and all its adventures for seventeen years that probably some of the biggest factors in having a safe, happy and productive autism family are being able to admit fears and concerns, accept your child’s strengths and limitations, and taking small steps constantly to solicit their best selves. If you can do those things while simultaneously being kind to yourself as you work through the myriad of challenges you will face as a family, you have a much better chance at a safe and happy family.
And at the end of the day, that is what I always wish for.
I’ve been reading blogs about autistic kids for going on seventeen years now, and I have seen every opinion and topic covered during that time from potty training to aggression, to the “has autism” “is autistic” debate, to whether bloggers should be writing about their kids at all.
I have read impassioned commentary urging moms and dads to “presume competence” and not write about topics which would embarrass their kids. I have read commentary responding that their kids would never understand about the content of their parents’ missives, and that the readers need to vent to get through the day.
I am a blogger who has written about her severely autistic son for a decade. My boy, whom I love dearly and who loves me, has been aggressive in the past. I have written about some instances, but mostly kept them to myself. I’ve preferred to write about his triumphs and pass on tips to other parents to help them navigate the autism world.
The truth is I have chosen this path in part because it didn’t feel right to me to share that side of him, as it is not representative of who he is at his core, or how he predominantly acts at home, in school, or in the community. I also chose not to share to protect him. Anyone could read my blog posts and have a negative attitude toward my son, and that is the last thing I’ve wanted or would ever want. He is a loving, kind boy, and deserves to be perceived that way.
I have not chosen not to write about his episodes because he might come across them on his internet searches and be shamed by what I wrote.
Justin is severely autistic, non-verbal, and has intellectual disability. This does not mean that he is not intelligent. When my son was three one of his therapists pointed out to me that he was able to read, a claim I met with skepticism. After all, I was a teacher, certainly I would have noticed? He was only three. How could she possibly know this when he couldn’t talk?
She knew because when she put out an array of fifteen index cards and asked him to point to each word, he did so perfectly.
He did this over and over, and over again.
My son has some wonderful splinter skills. His ability to read, which peaked at a first grade level, has enabled him to do some academic work throughout the years. It has also permitted him great facility with Edmark, a reading comprehension program he uses both at home and at school. At a certain point he plateaued at about the level of a six-year-old, and yet I have never been more grateful that we could read young children’s books together, that he could do some work, and most importantly, navigate a computer so that he could do his Google searches to his heart’s content. He is able to play a number of games on the computer, and when we recently had to switch to a new browser with different steps necessary to open it he went with the flow like a champ.
And yet, if I read him one of my blog posts, he would not comprehend it. I am certain of this as his mother, as a veteran educator, and by the work he has done for the last fourteen years he’s been in school.
I know that someone somewhere is thinking “presume competence,” and I would respond that I do. I am, however aware of his limits. I work within them and continually push his boundaries in all developmental domains so that he can be his best self, but I know when to respect who he is.
The fact that he has limitations other neurotypical seventeen-year-olds have does not make him less than them.
What bothers me about saying “presume competence” is that to me it implies that somewhere inside my son is an almost-man who can comprehend writing and complex commands on a “typical” level, and that is just not true. He can’t, and that is okay. It also implies to me that he is somehow lacking if he does not have this advanced comprehension level, that there is something missing within my son.
And this, I can say with absolute certainty, could not be farther from the truth.
As a community, we need to embrace all “autisms”. We need to recognize the child almost indistinguishable from his peers who knows an awful lot about Star Wars. We need to understand and support the adult child and the parents of said adult child who has aggressive meltdowns and self-injurious behaviors and intellectual disability. We need to see the girl-in-between-worlds, who can mainstream to a point and knows she’s different and may never live independently. We need to acknowledge the boy who is non-verbal and seems to reside in his own world but has typical intelligence.
It is seventeen years ago last month that you became a Dad. And while up until then I’d done most of the work, that dynamic changed the moment your first son came into the world.
My friends had told me to give you a couple of jobs (middle of the night feeding being a favorite), just so you had “ownership” of something related to our boy.
It wasn’t necessary. You’ve been there for him, and for me, every step of the way.
I know things haven’t turned out exactly how we planned. Somewhere in a parallel universe we still live in Washington, DC, we both work, and our two kids, two years apart, are a teen and a tween respectively and driving us crazy with their backtalk (okay, that still applies to one of our kids). Nowhere in “What to Expect When You’re Expecting” was there anything about sleepless nights for a year, reflux that just wouldn’t quit, a general extreme crankiness that defied all logic (that often extended to us too), and a penchant for spinning things that also defied logic (and often gravity).
I know there have been days with Justin that have just completely broken your heart.
And yet, you never give up trying to give our son, and our family, the best life possible.
When our boy was diagnosed at the tender age of seventeen months and we found out Early Intervention in Virginia is a travesty at best, you figured out a way for me to quit my job and do dozens of hours of therapy with him until he could start school. When we realized the school program wouldn’t be right for him (and I began to burn out on ABA) you figured out a way for us to move to Jersey, a chance to give our boy some amazing therapists, a great school program, and proximity to relatives and friends who could help.
I truly don’t know how we would have made it those first few years without that bold move.
We’ve had so many decisions to make over the years, some of them soul-suckingly hard. Where to live. What school placement to put him in. What ancillary therapies to provide him. What medications to try, and try again. Which doctors to take him to for first, second and third opinions. Whether or not to have another child (we did, and happy to say, it worked out). Hell, just for dealing with our insurance companies you deserve a medal.
You’ve been there to help me with all of them.
You have listened when I poured my heart out to you about my quandaries around inclusion, my desire to give him a hobby other than technology, my drive to take him out into the community even when it wasn’t pleasant. You have held my hand when I’ve had to let many of our dreams for Justin go, and helped me rally to remember all the good things he has in his limited, but generally happy life.
You have been my sounding board, my sanity, my friend.
Perhaps most importantly, you learned how to be a part of Justin’s world, meeting him on his terms, which has forged such a close bond between the two of you. He loves when you echo his favorite lines from “Up,” adores when you scratch his face with your five o’clock shadow, treasures those moments of “snuggle time” on the couch.
He loves you, truly and deeply, with a connection forged in your relentless pursuit to bond with him.
He is one lucky boy.
I am one lucky wife.
From Zach, Justin and myself, Happy Father’s Day my love.
To Mrs. Kotsianis, Mr. Carr, Mr. Walski, Mr. Richards, Mr. Calabro, Mrs. Bearse, Mrs. Wnuk, Mrs. Detata, Mrs. Fallon, Mrs. Foley, Mrs. Dunne, Mrs. Hansen, Mrs. Reilly, Mr. Lafferty, Mr. Schnorrbusch, Mrs. Curran, and Mrs. Sammarco:
Last year I wrote a glowing homage to all of Zach’s sixth grade teachers, praising them for their creativity and attentiveness to him. I closed with the wish that his seventh grade teachers would mirror their excellence.
I have to say that for once, my dream came true.
I feel like there will now be a great divide in all of our lives, our time before Coronavirus, and after. I know some things have changed in my family. As horrible as this all is I find we are laughing more, sleeping more, and when not thinking about what’s happening “out there” are more relaxed than during our usual frenetic pace. There are definitely some “befores” and “afters” now, with notable changes.
One thing that hasn’t changed has been the quality of Zach’s instruction, and for that I am truly grateful.
Before we all self-quarantined I had been thrilled with Zach’s new batch of teachers, and the retention of some from sixth grade. They somehow managed to make middle school fun, treated my son with respect and compassion, were always accessible for any questions, and made Zach want to learn.
No small feat with a burgeoning teen.
When I picked Zach up on March 13th I can’t say I knew he wouldn’t return this year. I can say as a former educator I knew what a Herculean task it would be to create even adequate online instruction practically overnight.
And yet, all of his teachers rose to the occasion. Online learning was up and running three days later after one (I’m assuming) very long staff meeting. Certainly, it is not the same as in-school instruction. Yet I feel that Zach is still learning, acquiring concepts, and mastering skills. He still feels connected to his teachers. He is still making progress.
And as I listened to other friends’ woes about their districts’ issues in the following weeks, I knew just how lucky we were once again in regards to Zach’s education.
This year is certainly ending differently than any other year in Zach’s educational career. It is so sad that none of you got to say goodbye to “your kids.” I remember when I left my fifth graders six weeks early to have my first child how heartwrenching it was not to finish with them- the sobbing wasn’t just the hormones. They are definitely missing out on some special events both with other students and staff. It’s sad, and we’re allowed to mourn.
But thanks to your collective commitment to excellence, your constant creativity, and your compassion for all those you teach, my son and others in his class will not only not fall behind, but will be ready to conquer eighth grade in whatever form it takes. Zach will be prepared for whatever challenges befall him, and given the world climate, I am confident there will be many.
Thank you to all of you for your kindness towards my boy. We truly appreciate you!
It would be the understatement of the year to say we miss you.
It’s been ten weeks now of home instruction, and while I feel extremely grateful to say it’s gone well, I know having his mom teach him is no replacement for all of your expertise. The fact that he lets me lead him around the house to do various tasks is not nearly as much a testament to my teaching prowess as it is to the landscape of learning you’ve laid down for him since he was seven, inculcating a love of learning and a willingness to be taught that I could never have inspired here.
Have I mentioned we miss you?
As usual, as soon as school closed you had a plan, and instruction started the first day Justin no longer had the option to physically attend school. You quickly implemented Zoom meetings which always elicit at least a few smiles from my boy when he sees you (and smiles from me when it works), and with your excellent instructions I’ve seen my boy make progress. To my delight I can’t say he’s regressed in any area so far.
May that remain the truth.
The support from all of you has been incredible. The fact that my son can still get excellent ABA services, speech therapy, occupational therapy and PE while a global pandemic is going on is phenomenal. And while I am fully aware that all of you do a much better job than me, I still feel like he’s moving forward and acquiring skills.
I even dare say he’s enjoying it.
I’ve learned a lot about my son these last two-and-a-half months. I’ve completely shed my fears that he’d be miserable at home if there’s a significant gap between graduation and a day program years from now. I’ve learned that my son likes long walks, and won’t try to get into the car to go somewhere a lot more fun than his house. I’ve realized that my boy, who is at the cusp of adulthood, a still-child who has had significant behavioral struggles in the past, is yet again that inherently happy soul I knew in his youth.
And so much of that peace, that contentment, those rare smiles that undo me, is because of all of you and your hard work with him this decade past.
I don’t know when he’ll return to you. But I do know this.
With all of your help, hopefully I will be sending you back an almost- man who’s made progress with self-help skills.
And with luck, I will be returning a student who’s improved academically, with his love of learning intact.
I am confident I will be giving back a child who is infinitely happier seeing his teachers in person than seeing them on a screen.
Thank you for all you’ve done for him and all your students this year, and every year past. We can’t wait until this is over, but in the meantime, thankfully, we’re okay.
Today is World Autism Awareness Day, thinking of all families during this difficult time!
I walk into the kitchen area holding my Tupperware, material for one of the many activities I’ve been doing with Justin, my severely autistic teenager (he matches lids to bottoms better than I do). My eldest is now heading upstairs for some computer time well-earned, and my youngest is on hour three of virtual homeschooling. I take a moment to reflect upon how grateful I am that the last two weeks have gone so smoothly, and treat myself to a piece of chocolate.
My priorities are still intact.
There were a few glitches when I started homeschooling Justin, but the staff at his school have been wonderful with communication and I think I’ve figured them all out. I’ve been reaching out to my group of friends with autistic children, and there seems to be a unanimous consensus- everyone has adjusted and is doing really well. Autistic kids and adults are not really known for their capacity to adapt to change- many love their routines religiously, and the virus has completely disrupted that sense of continuity for them. Like many of my friends I’ve worried that Justin would have meltdowns when he realized he wasn’t going to school or anywhere- years ago, this would have completely been the case. Instead, like my friends’ children, he has completely gone with the flow, even complying to take walks around the neighborhood and not insisting on getting into my car.
I’m grateful for that too.
The truth is I’m not surprised by how well it’s gone for me and my friends. Being autism families, most of us have all spent a great deal of time in our houses at some point in our lives. There were years where there were only a handful of places I could take Justin due to his behaviors, and certainly we were not going out as often as most of my friends with neurotypical kids. I remember when we came up to Jersey from Virginia to house hunt I told my husband we’d better really love the house we chose because we’d be spending a lot of time in it, and that has proven to be true. And while my ability to get Justin out has increased over the years, his desire to go certain places has decreased. We are home a lot. We’ve had a lot of practice with self-quarantine.
We’ve also had a lot of experience with adversity.
While I am thrilled with our success and the success of my friends’ families, I am under no illusion that shelter in place has gone so well for all the families in our community. I have read many posts online of families who are really struggling. There are those with higher functioning children and adults who don’t understand why they’re not going to beloved schools and day programs. There are more challenged adults and children bereft at their inability to go to a favorite restaurant or movie theater. There are children who have begun to regress in skills, adults exhibiting aggressive or self-injurious behavior.
There are many families not posting pictures of their fabulous social distancing hikes.
I’m writing this post because there are families out there who are truly struggling, who are even more isolated than they were two weeks ago. There are many with children and adults who are truly suffering with these restrictions, who are unable to comprehend why mom and dad can’t tell them when this will be over.
I want you to know you are not forgotten.
I want you to know you are strong, and you will get through this.
I want you to remember that someday, while we will have a “new normal,” this will be over.
My eldest son Justin, who is severely autistic and non-verbal, is turning seventeen in a few months. This is the year that the inevitable slide to adulthood really ramps up.
The year Jeff and I spend thousands to be his guardian when he turns eighteen.
The year we apply for Medicaid and SSI, which will be welcome benefits.
The year my boy is technically in his last twelve months of childhood.
I admit that sometimes I find milestone years to be hard. If his school went by traditional years he would be a junior in high school, and if he were typical he’d be gearing up to drive, preparing for the SATs, looking at colleges on road trips. I’ve watched my friends go through this right of passage for years, and know that instead we will be spending our time and money petitioning a court to grant us legal rights so when he hits adulthood we can continue to make medical decisions about him.
Sometimes I am okay with this. Sometimes I am really, really sad.
It’s funny, but the realization of the vast differences between his life and that of many of my friends’ kids doesn’t hit me when you think it might. I am generally fine on his actual birthday or at his family party, mostly just grateful we have family to celebrate with him, and thankful he usually enjoys opening his presents and scarfing down a chocolate cupcake.
No, the differences hit me when I see a “driving school car” tooling around the neighborhood with a cautious teen at the wheel. It hits me when I see bumper stickers of colleges on the back of cars at a stoplight. I notice it when I pass the Huntington prep school advertising SAT prep on my way to grab a hot chocolate at Barnes and Noble.
I still have my priorities.
And the thing is, having these thoughts is okay.
There are some who might say they are not okay, that I’m not accepting of my son as he is, not reveling in his personal accomplishments no matter how much they diverge from the mainstream. This couldn’t be farther from the truth. When he recently relearned how to take his shirt off before a shower, I literally did a dance (no, it will not be on YouTube). When he started using a fork about seventy-five per cent of the time I rejoiced, because it was a skill he once had before the tic disorder came calling, and it’s a skill he should have for his lifetime. I am as proud of his accomplishments, no matter how small they might seem to the world, as I am of his little brother’s more typically achieved milestones.
The truth is I also believe Justin is unaware that he will not drive or attend college. He is passionate about watching his DVDs on his player, committed to driving around Monmouth County on the computer using the Hertz Rent-a-Car site, and absolutely devoted to Philadelphia Pretzels. I am confident he thinks his life is good, that he loves his school, loves to go out to most places, and also craves being home.
This knowledge helps my heart immeasurably.
But I know there will always be a wistful component as to what might have been, and a passionate longing for my son to have been gifted with the ability for independence, to be able to take care of his needs when I’m dead. I know I will never let that one go as long as he takes breath.
And I’m okay with that permanent longing too.
In a few months I will gear up to take official lifetime responsibility for him, which is of course a mere formality. I will hopefully continue to watch him reacquire skills, and find joy in his routines. His father and I will continue to try to provide a happy and safe life for him, which in the end is all we want for him with all our hearts.
And no matter what we feel we will move forward, because that’s what we do.
He settles down in his seat, seemingly not at all phased by an “old school” theater chair that doesn’t recline. I quickly pass him his popcorn and a juice box, and we get comfortable as we wait for “Frozen Two” to start. All around us is a bit of chaos- a cacophony of sounds, words and mobile children darting from row to row. I smile knowing that Justin is at home here- his loud vocal stims will not be frowned upon, will be more than tolerated. I know in my heart he’ll last through this movie, and it’s a beautiful thing.
You see, we’re at the sensory friendly showing at AMC Loew’s Seacourt 10 Theater in Toms River hosted by New Jersey Autism Warriors (NJAW) for the first time, and what I hope won’t be our last.
My son Justin is sixteen and severely autistic. For years just getting him out of our house was a struggle, much less getting him to enjoy events. After many years of searching we found that one of the few activities he enjoyed was going to the movies, and he was generally well-behaved there. He loved the films and truly adored the buttery popcorn, and I was thrilled that there was something we could all do together as a family since his brother was four years younger than him.
Flash forward many years, and my almost-teen is eschewing “Pixar movies,” and my son’s deep guttural vocal stims are precluding him from movie-going with a general audience.
Justin’s vocal stim used to be an occasional “eeee”, but now that he’s approaching manhood every sound is octaves lower and really loud, and he seems to enjoy regaling us with them frequently. The last few times we’ve gone to the cinema he’s been really vocal, to the point where I’m focusing on keeping him quiet rather than watching the movie, and really, that’s not supposed to be the point.
Truth be told, I love these shows too.
In an effort not to close him out of one of the few activities he loves, I did a little research, and found out that New Jersey Autism Warriors (NJAW) who partner with Parents of Autistic Children (POAC) offer frequent sensory showings at the AMC Loews Seacourt Ten Cinema in Toms River, NJ. You can find their listings on the POAC website at www.poac.net under the events tab. You have to sign up with NJAW on their Facebook page, and then it’s important that you RSVP how many tickets you want on their Facebook page so they know how many theaters to reserve.
I’m never really sure how something will go with Justin until we try it, but he didn’t seem fazed by the noises around him, and watched the whole movie in its entirety. When he realized it was a “Frozen movie” I even got a rare smile out of him, and I knew I’d made the right decision to take him.
Justin’s world has narrowed greatly as he’s grown older. We used to be able to take him to many POAC events, but as he grew he generally stopped participating in the activities and just wanted to eat their pizza. Eventually my other son wanted to stop attending as well, so we put those events on the shelf. This never quelled my desire to get my boy out and about in the world, as the reality is the rest of his life either myself or his caregivers will have to take him places, so the more exposure he gets to the real world, the better.
I am so grateful we no longer have to relegate the movies to the past.
I did a little research, and there is also a sensory showing at the Marquis Theater Orchard Ten on Route 37 in Toms River, the second Saturday of the month at 11:00. I can’t speak to how that one is run since we haven’t been there yet, but I’m hoping to check it out in the future as well.
This turned out to be a great experience for me and Justin, and I highly recommend you give it a try. Your child can make noise, bring in his own food (please don’t flaunt it outside of the actual theater), and even run around. Truly, anything flies. It is such a gift to be among my “tribe,” to know there is a place where Justin is accepted and encouraged to be.
Autism Mommy-Therapist 