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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 autismcares@autismspeaks.org to receive assistance. Families may also register directly at www.autismcares.org. Please pass the info on to anyone who might need help. 

 

29 thoughts on “blank page

  1. Oh how we all know these feelings! My girls is Dorothy for the 5th time this year. We have gone through 3 hand made costumes over the years and since she is 14, we had this year’s made big and took it in so that hopefully it is the last one we buy. Our halloween has been postponed til Sunday…right after the time change! I am so not looking forward to that! 🙂

  2. I wish that you could be that full-time writer, too, my love! The story of the haunted house and the whole Halloween part was amazing! The whole post was amazing. You’re amazing!

    Love you,
    Mom

    • I must say that I soooooooo agree with your mom! I would totally buy any book you write….. It’s something to think about, you have such a gift!

  3. Thank You for writing this blog my son is four and has high functioning Autism and in reading about Brook I see him so often! It helps to know that im not the only one who feels these thing and struggles with the simple things sometimes! Halloween was made for Isaac Also!

  4. I spend my life reordering the world for Molly (age 16)but I was talking to another parent last night about whether that’s healthy for her long term. We are almost out of gas in NYC and school buses are cancelled because of the hurricane. We’ve been carpooling to get our kids to school because they don’t want to miss a second. In fact, school is open with no power because the teachers get it and show up to be there for these kids. We are officially all out of gas and can’t get the kids to school. To say Molly is bereft is an understatement. I realized last night during the sobbing that she can’t handle any change and the disappointment that comes with it. I think this is a part of life that is so hard for our kids but an important life lesson to learn.
    I love the beauty of the dad going out and giving the peanut butter cups to neighbors, and the neighbors learning about kindness and compassion at the act. I just wonder what happens to these kids at age 40 or 50 and how they learn to deal with transition and disappointment. I think it’s something that all of us as parents need help and guidance with.

  5. During the three years it took me to finally get around to starting a blog after I guest-posted here, I spent a lot of time thinking about a blog title. Option 1A was always “reordering the world.” Thanks for remembering that line. I need to remember it myself sometimes when I get frustrated (particularly after five straight days in the house with both kids …. oy vey). Great stuff today.

  6. Blank page? There is so much richness in your post, I feel I could read it and reread it and discover something new each time. And then I read the comments and feel enriched all over again. Thank you for sharing with us. I’m still terrified at the picture of those girls walking towards the thoroughfare, too. hugs.

  7. I lost it at, “…we would do anything to put a smile on his face.” Oh my, oh my isn’t that the truth. Hugs and prayers to all parents of our special dears, who sincerely live their lives in search of that smile. And oh – that smile! When it comes, there’s nothing like it… an immediate tonic for anything that has ailed us allllllll day in the mission to see it! Keep the faith everyone… remember those smiles, and you’ll make it through whatever comes your way today. ♥

  8. Maybe Katie doesn’t feel totally comfortable in the haunted house because of the unexpected, unpredictable, and startling events that happen in an unfamiliar environment. Sounds like the world Brooke lives in every day, so she sees it as normal. I love your stories and the love behind them.

  9. FYI on the campaign…did you know that when Obama’s recovery package was passed in March of 2009, the stock market had the greatest, fastest rise since Hoover was president? It was in freefall before that, thanks to Bush (a plunge that started during his presidency). Don’t know why people keep saying they need someone better with the economic recovery…Obama has actually done a great job on a disaster brought to us by the previous administration. As a former Republican (I’m so embarrassed) and a SPED mom, how can we vote for a party that thinks the disabled are not entitled to a leveled playing field, and gov’t support for interventions that give our kids a chance at being independent tax payers some day? Argh. How can you vote for Romney “for your kids” when your kids might turn out to be gay?

  10. I knew nothing about autism till I started reading your column which started from your posts on FB. I am in awe of all that you parents deal with on a daily basis, parents of all special needs children, deal with. I had one child that grew up to be a self absorbed teenager which I thought was the hardest thing in the world to deal with (That teenager is now 32 years old with children of his own).
    Know that there is a person reading your column that has no association whatsoever with autism but I am so appreciating how much you all have to deal with.

    Kudos to you parents and the love you give to your special children everyday..

  11. Thank you, once again, for sharing your gift with words, Jess. We’re dealing with the fall-out of fall here too, and I couldn’t figure out what was going on until I read this and now I’m like, AH, of course. I knew it but didn’t know it until you showed me I knew it, if that makes any sense. “Reordering the world” oh yeah….

  12. The story about the father on Halloween who ran up to houses before hand to drop off Reece Peanut Cups for his son. That is LOVE that is so pure and hits so close to home.

  13. Thank you for a great post! I totally get the election thing. I want to scream out to people on Facebook but I don’t think you can convince anyone in that medium. I am so scared, so much is at stake. Here in my state, marriage equality is on the ballot. I’m so hoping that come next Wednesday we’ll be the first state to vote us for this type of referendum.

  14. Your writing is so wonderful. This post reminded me that we also used to pre-deliver candy to our neighbors but no longer need to as my daughter is less rigid about what she’ll accept. It’s a constant balancing act between reordering the world and helping our kids develop coping skills. I wish all the tough issues could be solved as easily as swapping out candy.

  15. Your entire article spoke to me. You are such an amazing writer. I’m keeping everyone on the east coast in my thoughts and prayers.

  16. I’m all about run-on sentences. I wish I had the time to actually write on my blog! I have so many thoughts all. the. time. and I seem to be too tired, too busy, too whatevers. I can’t get over how many times your words ring true with me. Keep on keeping on!

  17. Thank you for sharing these stories, Jess. Thank you for connecting me to earth, to this community, today. I needed it today, very much.

    I love how Brooke figured it all out. I love how she aint fooled by the pretend scary stuff, probably because she knows what is real. I love the 6 ft hotdog. My little guy was a 4 ft 4-year-old “box monster” that he made himself. Insisted on making himself. Insisted on wearing it. And I loved everything about it and can absolutely see myself with a 6 ft hotdog in about 15 years… So much LOVE in this post. I hope one day you have more time to do what you love. Even part-time or temporarily. I wish that for you.

  18. I don’t think I took a breath while reading your post today! Jess, you are amazing and I would buy everything you write so you could make a living at it because your writing is “all sorts of awesome” and I want you to do what makes you happy!

  19. Another great post, touched my heart, made me laugh and cry at the same time! Thank you so much for sharing your life with us, it reminds all of us that we are not alone. I love the haunted house story, I can see my lil miss saying , “that’s not real!” My daughter wore her Spider-Man costume again this year, it looked like capris on her, LOL. Think it’s time to invest in another one for her 🙂 I really really REALLY want to start BLOGGING , but can’t decide on a name for it. I have plenty of material every day thanks to my little one.

  20. Im voting for a book, please. brilliant ! regression has been showing up here and it is so so sad. all of your insights are right on.

  21. You need to take all your posts, organize and edit and make a book. You can self publish electronically for Kindles. We’d all buy one!

  22. There is so much in this wonderful post that speaks to my heart and soul. My daughter is that and more. She was Snow White this year! Has been a couple other times too when smaller. She’s eight,almost nine! I can understand the feelings about the upcoming election. When I read what people really believe on FB. How they wave that pride that they will save country,children,jobs from evil current Govt. I’ll not go into the hate,racial,religious narrow mindness. And when you realize your childhood friend has joined into all that madness. It is very……just very everything! I want to truly express all that you and this community means to me. So Thank you! And Everyone Thank you so much!!

  23. I usually start my day with your post (before I even get out of bed), but today, I’m ending my day with it. It was worth the wait. Thank you for these amazing stories. By the time I got to the peanut butter cup story, I just lost it. Beautiful; yes, I do believe that’s true love. And I’m so glad Brooke had such a great Halloween! She is awesome.

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