Ed note: We’re going all-in on run-on sentences today, guys. If you choose to join me, buckle up and hold on tight. This isn’t so much a post as a ride.
It’s one of those moments when I wish – God how I wish – that I could write for a living. That somehow I could spend my days just doing this thing that sustains me and that keeps me (mostly) sane and that there would be nowhere else I’d have to be. Because my God, there’s just so damned much to say.
For starters, there’s Halloween. I mean, I know I showed you the pictures yesterday and I even sort of told you the stories, but trust me, they didn’t even begin to scratch the surface.
I didn’t tell you how Brooke walked right into the haunted house in our neighborhood. The one that still terrifies her sister. Or how she tried to play pat-a-cake with the werewolf who attempted to scare her. And I didn’t tell you how he then tried harder to scare her, holding his ground, growling at her in his best werewolf growl cause that, apparently was what he was there to do. Or how she offered a response – her name. “Hi,” she said, “I’m Brooke. What’s your name?” And how he cocked his head and growled some more because it was all he had. So how I suggested that perhaps she growl back. So she did. And then she walked away from the werewolf at the haunted house (that still terrifies her sister) like it was nothing. Because to her, it was.
And I didn’t tell you how she walked into the tent – the super scary, über haunted part of the already super scary haunted house. Or how she looked at the hostess who held the bowl of candy and stopped because Wait, this isn’t in the script. No door to wait at. No doorbell to ring. What now? So how she simply reached out for the candy and the hostess, looking scary and haunted and ghoulish in her scary, haunted, ghoulish costume snatched the bowl away and tucked it under her arm and said, “Uh uh uh, that’s not how you get candy” and how Brooke sized her up, trying to figure it out, then tried a different tack. “Give me some candy,” she said. And how it was so much more a question then a demand — Is this what she’s looking for from me? And how the scary, haunted, ghoulish hostess still guarded the bowl and said “Well that’s definitely not how you get candy!” And how it all happened in slow motion and somehow I knew that my girl could handle it. That she would figure it out. And how finally it dawned on her and it was like a lightbulb went off and she yelled “Trick or Treat!” And how the scary, haunted ghoulish hostess broke character and smiled this big warm smile as she handed Brooke the Holy Grail of Halloween treats for her trouble – a full-sized candy bar.
And I didn’t tell you how that story wasn’t even *the* story. How the real story was the moment that passed between them afterward. How Brooke just stood there bathed in the eerie strobe light in the tent and how too much time passed with her just standing there and how it should have been weird and awkward and how I should have been prompting her to move along but how somehow it was all okay, just standing there in the eerie strobe light in the scary haunted tent with no words. Because on Halloween the rules are different and costumes and strobe lights and scary ghoulish costumes make awkward just not a thing anymore. And how after the time had passed, Brooke suddenly bent down and ever so gently kissed the hostess on the arm and then turned and walked away and how it was this strange, gentle, beautiful act of generosity and how I learned something really incredible in that moment.
And I didn’t tell you about how before that, Brooke was running after the kids – Katie and her two friends – and how she yelled “I call next doorbell!” just as they had each and every time before. And how Luau and I looked at each other in the middle of the road and it was all I could do not to jump up and down and shriek with delight and say, “Holy hell, y’all my kid just yelled, ‘I call next doorbell!'” How I almost took out my phone to text it to you on Facebook. To you, because you are the ones who understand. But how I didn’t want to break the spell of the moment by reporting on it rather than living in it and how I’m trying to remember to do a better job of finding that balance.
And I didn’t tell you how Brooke ran straight into the house after Trick-or-Treating and dropped her candy bag without another look, changed her clothes and headed for the refrigerator. Or how she asked for broiled salmon and rice or how she cried while waiting for them to heat because finally, finally it was simply all too much.
And I wanted to tell you that this time of year is always too much. I wanted to write about that too. About how we forget each and every time and that it’s like PMS where three days after the fact we suddenly remember that we’re not actually losing our minds. “Oh yeah, this happens every month,” we say. And “Oh yeah this — all this too much — happens every fall.”
The change of season, the loss of light, the different weather, the dramatic changes in barometric pressure. The different clothing, the different schedules, the different places to be at different times. The school year ramping up — the one that supposedly starts in September, but let’s be honest, this is when stuff gets real. No more getting-to-know-you games in the classroom, no more review of what they learned last year. Expectations sky-rocket, spraying stressors on our kids like molten ash. This is the time of year that we see anxiety spike and regression rear its head as the old devices that used to soothe resurface.
And we forget, don’t we? We forget that this happens year after year. And we forget that regression is so often a slingshot – that our kids pull back — stretching, stretching, stretching — gathering the energy they need to propel themselves forward to the places that we can’t see.
And I wanted to tell you how my heart is aching for the storm victims. How the open, hissing gas lines in that New Jersey shore town are scaring the crap out of me and how I’m praying for the safety of everyone out there. Or how I was so scared for my Dad and his wife, who have no power which means no phone and no computers and oh how I love my dad but how he’s under the impression that a cell phone is a one-way device to be used on demand and texting might as well be morse code so really, he may as well have been in a hut in Sub-Saharan Africa for all the ability that I had to reach him. And how I finally got hold of his neighbor who has a generator (and therefore a phone) who told me that not only was he fine, but he’d brought her soup the night before when her husband was stuck in the city. And how I had to laugh, cause that’s so my dad – nurturing, feeding, taking care of everyone else. And how I hadn’t realized just how scared I was until I knew that he was okay.
And politics. Oh my God, politics. I want to – no, I need to – write about how they feel so raw and so real and so personal — and how the words thrown around in these debates and speeches with such little regard for the lives and the experiences that they represent are slicing into my heart and hurting — really, truly hurting. And how declarations of promised votes for the people who speak those words and believe those things — or don’t but have the audacity to say them as if somehow that’s okay – or not disavow those who do say them as if somehow that’s okay — feel like a personal betrayal — like an indictment or a callous dismissal of all that I am and all that I have lived and everything that I have always believed is right and true and who we are and what we say we are about in this country. And how I read THIS yesterday and how it spoke to me so deeply and how it crawled right into that place that’s been hurt by all the careless words and how it screamed for me to say, yes, YES! this is it. But how so too it scares me to share it here and how I’ve struggled with that day after day. With how much to write and how I will feel if I stay silent about what I really believe is at stake in four days’ time.
And I haven’t told you how rattled I have had to admit that I still am by the incident at the private therapy center last week. Or how the word ‘incident’ is far too sterile and small and neat and tidy to describe my child walking out their door. Or how they did exactly what they said they’d do and sent me the new safety policy to review, just as I’d asked them to, but how I just can’t open the emails without feeling nauseous and angry and scared and wanting to throw things and make something shatter and explode and break into pieces with all of the What Ifs scattered around the floor.
Or how at school they’ve been working on letting her walk from one place to another independently and how she’s been doing it and after all these years there she should do it and she can do it and all of that should be wonderful but instead is scaring the hell out of me because now I know to be scared because my girl walked out the door.
So how now we’re focused on teaching her never, ever, ever to leave the building – any building – without a grown-up except in a fire and how we have all of these various plans in place to reinforce that but how I still drill it into her at dinner and I quiz her at bedtime and I say it every chance I get because now I know to be scared.
And how no matter how much we do to keep her safe I will still be haunted by the vision of my girl walking blithely along the road, hand-in-hand with her little buddy, heading for the thoroughfare.
And how the other night I asked the question on Facebook – “Halloween – love it or hate it?” And how one of the responses has stuck with me ever since.
my nearly 17 year old loves dressing up – he is 5’11 and 200lbs – he get’s many many side-ways looks – so that’s one thing I hate about it….also – he will only eat Reese’s Peanut butter cups – they can’t be shaped like pumpkins or bats or anything like that – just the traditional peanut butter cups – and that’s it….so when he goes to a house that doesn’t have them and they give him something else – the homeowners don’t usually appreciate the “I don’t like those, no thank you” response and his abrupt departure…..so now if he wants to go…my husband goes out ahead of us on a recon missions giving the houses we will go to reese’s peanut butter cups for my son. As I write this – it sounds absurd – but we would do anything to put a smile on his face. The funny part is when they say to me, how will we know it’s him – I say just look for the near 6 ft hot dog coming up your driveway – I doubt there will be more than one! Just gotta get through it!
And how it doesn’t sound absurd to me at all but how instead it sounds like LOVE. And how in so few words it said so much about this family and by extension our community and all that we so desperately want for our kids. And how it reminded me of my friend Neil and how he once said, “I think as special needs parents, we always are trying to deliver those moments. Every once in a while we can reorder the world to suit our kids.” And how that’s it really. How we spend our time drawing and redrawing our lines in the sand, searching for the balance between reordering ourselves and our kids and reordering the world to make it a place that would be better not just for them or us but for ALL of us.
And how I keep fantasizing about sitting in a cafe — in a sun-drenched window seat, sipping a steaming latte from a ceramic cup as I tap at the keys of my laptop, writing it all, one post after the next, fleshing out the stories, sustaining me, keeping myself (mostly) sane.
But alas, it’s after 5:30 and that means I’m already late because, as my dad likes to say, there are things to do, places to go and people to see.
But today, somewhere in the back of my mind, I will visit that sun-drenched window seat, sip from the steaming cup, and go to work filling the blank page.
AutismCares is actively seeking families affected by autism who are victims of Hurricane Sandy and invites those families to call the Autism Response Team at 1-888-Autism2 (288-4762), En Español at 888-772-9050, or email firstname.lastname@example.org to receive assistance. Families may also register directly at www.autismcares.org. Please pass the info on to anyone who might need help.