Luau held the popcorn. I had the drinks. He smiled at the ticket taker as he handed him our tickets. They exchanged some friendly small talk and we moved down the hallway toward our theater. An hour and a half with Matthew McConaughey doing what he does best was precisely what I needed after a long and trying day.
As we turned the corner toward the theater, I couldn’t breathe. A sob – like half of a single word in the middle of a sentence – had come out of nowhere and caught in my throat. I stopped dead in my tracks.
Luau continued to walk, blissfully unaware that the walls were closing in and the floor had begun to crumble from beneath our feet. As the hallway narrowed, I longed for a solid surface – anything that would hold me up – give me time to catch my breath.
Luau quickly realized he was walking alone and turned back, wondering what had happened. I was just a couple of feet behind, but a world away. I was crying.
He reached back and put his arm around me. C’mon, babe, he said. Stay with me. It’s OK.
I tried to explain, but I floundered. This was where Brooke and I tried ..
Eventually I waved it off.
I’m fine. No big deal.
Luau is no longer surprised by these moments.
The following is from Fair, a post that I wrote in December of 2009- the last time I was in that particular hallway.
I sit on the floor outside the theater holding my crying girl. I swear I’d done everything I could think of to prepare. But neither the noise canceling headphones nor the popcorn and gummy bears nor all the prep work in the world could get us through.
There was no epic meltdown. No kicking, screaming tantrum. Instead there was the heartbreaking, silent cry of a little girl whose sensory system was under attack. She climbed onto me, curled her little arms around my neck, and said “hug, hug, hug,” over and over again.
I couldn’t make it better. I couldn’t make it easier. It was just too much for her to take. All I could do was get us the hell out of there.
There were so many reasons that it should have worked. I’m too tired to detail them, but trust me – this should have been the one.
We walk the long corridor together, side by side.
“Jesus is my favorite Godspell friend.”
“Yes, honey, I know.”
“I like Zoe better than Elmo.”
“I know, honey.”
“They live on Sesame Street.”
“Yes, baby girl, they do.”
The scripts – the comfort of sameness. Order out of chaos.
I suggest going back in to try again. Her mouth opens into a tortured ‘O’. The tears stream down her little cheeks again.
We sit down on the floor to the side of the door and listen. How many times have we been here – just outside a door – listening to the world on the other side? Birthday parties, movies, kids’ shows of all shapes and sizes – too many to count.
Is it such a big deal, really? A movie. I mean honestly, a movie?
Try as I might to minimize it, to wave it off and carry on – as the floor undulates and the walls close in – as the stealth attack sob closes my throat and four years of good, bad and ugly come rushing at me like a freight train – well, it seems that, yes, it is a big deal.
My dear friend, MOM-NOS wrote the following a while back on Hopeful Parents. I was one of the moms around the table in her story. I was there in that unforgettable moment when our friend, Rachel spoke of her husband, a Sergeant Major in an Army Infantry Battalion who had recently returned from a tour of duty in Afghanistan. I was there, as we all were, hanging on her every word as she described what it’s like to live with someone who suffers from Post Traumatic Stress Disorder.
I was there as she said, “You think we don’t have it too?” I was there when heads began to nod in recognition and the floodgates opened, the tears flowed freely and suddenly it all made so much sense.
And I was there on Saturday night as the walls closed in and the floor crumbled and for a moment – just a brief, soul-crushing moment – every single bit of the pain and the fear and the heartbreak and the anguish of the entire journey – every last morsel of Why my kid, God, Why mine? – came hurdling at me like a force of nature. All because I walked down the hallway to go to a movie with my husband.
I give you MOM-NOS.
In her book Making Peace With Autism, Susan Senator writes of the periods when her family must manage her son’s most difficult behavior, “we live as if under siege.”
In her blog, Jess from A Diary of a Mom talks about her feelings in the early days following her daughter’s diagnosis as “that awful, combustible mixture of heart-wrenching pain and abject fear.”
In the archives of my Twitter feed is a tweet I wrote during a particularly difficult school vacation, when Bud’s behavior made me afraid to leave the house with him: “I feel like a hostage.”
As anyone who reads us knows, Susan, Jess, and I love our autistic children. We truly, madly, deeply love them. We celebrate them. We advocate for them. And yet, each of us has experienced intense feelings of hopelessness, helplessness, and fear.
I heard the same dichotomous feelings echoed by other women a few weekends ago, when I attended a social function with a phenomenal group of autism moms. As I’d expected, over the course of our evening together, there was plenty of IEP talk, plenty of been-there-done-that edification, and plenty of laughing so hard it hurt. But there were also more tears than I’d expected. There was more vulnerability than I’d predicted – more fragility, more shared feelings of aloneness, more compared notes on the emotional and physical tolls that this autism parenting journey was taking on the women around the room.
It was in the middle of one of our more heart-rending conversations that one of the moms, whose husband has been serving active duty in the military, said, “You know what this is, right? This is PTSD. Post-Traumatic Stress Disorder. It really is.”
The group fell silent.
Then people started sharing. The physical reaction to loud noises. The sleepless nights. The ceaseless anxiety. The sensory overload. The fear.
Not their children: Them.
The diagnosis resonated – not for everyone, but for some. I watched as faces changed, as moms considered – perhaps for the first time – that their feelings and their troubles were not the cause of some personal inadequacy or weakness or inability to cope, but were instead the reasonable response of a reasonable person who had been living with unreasonable demands without reasonable support for an unreasonable length of time. I watched as they looked at each other – but YOU – so strong – so together – YOU feel this way, too?
It was a powerful moment.
I walked away thinking that it was a moment that should be shared – that there are probably many parents of autistic children who think that their pain, anxiety, and feelings of hopelessness are theirs alone, and, worse, are an indication that they are just not capable of parenting their children. So, I went home and started Googling. I landed on a page from the National Institutes of Health that lists the symptoms of Post-Traumatic Stress Disorder. The description below belongs to the NIH, but the bolding is mine; it highlights the symptoms that I heard my friends identify in themselves:
Symptoms of PTSD fall into three main categories:
1. Repeated “reliving” of the event, which disturbs day-to-day activity
- Flashback episodes, where the event seems to be happening again and again
- Recurrent distressing memories of the event
- Repeated dreams of the event
- Physical reactions to situations that remind you of the traumatic event
- Emotional “numbing,” or feeling as though you don’t care about anything
- Feelings of detachment
- Inability to remember important aspects of the trauma
- Lack of interest in normal activities
- Less expression of moods
- Staying away from places, people, or objects that remind you of the event
- Sense of having no future
- Difficulty concentrating
- Exaggerated response to things that startle you
- Excess awareness (hypervigilance)
- Irritability or outbursts of anger
- Sleeping difficulties
You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical of anxiety, stress, and tension:
- Agitation, or excitability
- Feeling your heart beat in your chest (palpitations)
It’s important to note that PTSD is characterized by symptoms that persist for more than a month – and that the items I’ve highlighted here are those that have been persistent and unmitigated for my friends. Symptoms resolved within a month – those I haven’t addressed here – are considered manifestations of Acute Stress Disorder (and, no, the irony that it shares its acronym with Autism Spectrum Disorder is not lost on me).
The source of my friends’ symptoms – the identified “trauma” – varied from woman to woman. For some, it was the impact and subsequent upheaval of the diagnosis itself. For others, it was an event – or series of events – involving their children’s aggressive behavior or uncontrollable tantrums or self-injurious behavior or indescribable fear. For others, it was the toll exacted by constant vigilance – living life, day after day, in a metaphorical foxhole, watching and waiting for the next attack, but never being sure when it would come, how long it would last, and what kind of devastation it would leave behind.
For some women in the group – more, actually, than I would have imagined – autism emerged in their lives in the wake of another trauma, the physical and emotional impact of which had not been fully resolved. Already struggling, already vulnerable, already fragile, they found their symptoms – the reliving, the avoidance, the arousal – not just heightened, but compounded by parenting a child with autism – more insidious, more difficult to pinpoint, and, somehow, more easily assumed by them to be the result of their own personal failing.
I hope that as you read this post, you don’t see yourself in its words. But if you do – IF YOU DO – listen to me: you are not experiencing these things because you are weak or because you’re a bad parent or because you’re just not trying hard enough. You are experiencing these things because you are a reasonable person who has been living with unreasonable demands without reasonable support for an unreasonable length of time.
And it can get better. Here’s what you can do:
Make an appointment with your physician or with a therapist. Print the list from the National Institutes of Health, highlight the symptoms you have, and bring the list with you to the appointment. Read this post from Jess at A Diary of a Mom if you start to lose your nerve. Better yet, print it out and bring that with you, too.
Find a support group. Don’t find a group of angry parents who get together and spin their wheels while they rage against the oppressive system. Though they may call themselves “support groups,” in my experience, those groups are toxic. Find a group of people who want to talk through the hard stuff, but who are forward-thinking problem-solvers. If you can’t find one in your local community, take the advice of Boy Wonder’s Mom and find one online. Look for people who are saying things that resonate with you, then join the conversation. Don’t be afraid to jump in – bloggers are blogging because they want to connect. People are joining online communities and listservs because they are looking for others who understand. Find them.
If you feel under siege, if you feel heart-wrenching pain and abject fear, if you feel like a hostage, then know these two things:
You are not alone, and
It will get better.
Ed note: I am so grateful to my Mama friends.
To those with the strength to say it out loud.
And those who have the incredible ability to share it with the rest of us and in so doing show us that we are not alone.
Thank you, ladies. You already know it; but you have my heart.
Above all, special thanks to MOM-NOS for so generously allowing me to post her words here.