Why I May Have to Abandon the Best Coping Skill I Have Ever Had

I wrote this one year ago today. As all of our social media accounts have thinned the herd so to speak to show posts from people who are more like minded or we have all done so on our own, there are days I still feel the same. But as people reconsider the last year and perhaps have changed perspective, the divide has grown deeper with those who hang on to their belief systems as history and policy begins to unfold. Many of us have been spawned out into political action to protect ourselves and our interests….on “every side” and may have entered territory and conversations we never thought we could have. As I sit here contemplating my words from 365 days ago, there are days I feel the same about shutting everything down but I glad I did not. I spent a good deal of the summer researching , advocating and educating others on the dangers of removing healthcare policy and instituting new policy that would ultimately devastate the lives of the disabled and ultimately devastate the lives of everyone else too. I was able to talk about how Medicaid actually benefits everyone, even the individuals who never need to access it. My tiny social media reach may not ultimately be influential, but when considering the big picture and ensuring all voices are heard, it is hard to know what the ripple effect could be.

Does social media continue to be a huge time suck and anxiety generator in my world? Yes. But the advantage of influence, the scope of message and finding , connecting and forging new relationships took precedence. But let’s face it….we have all been there since adding a blue and white bird or letter F to the screens on our phones and I suppose we at least all have that in common…

Running through Water

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My heart is sitting in a basket on my desk next to my computer.  I stare at it wondering if I should leave it where it is or if I should shove it back in my throat where apparently it now belongs.  I  am faced with a dilemma I have fleetingly looked in the eye before but this time I pause much longer as if memorizing the outline of the face of a loved one I may not see again.

I love Facebook. I am like a Pavlovian dog when I hear that DING! and will switch over from work to see whats going on my feed.  Facebook is the most existentially layered version of the real world I can imagine. Everyone from my closest friends to those folks who have crossed paths with me for a brief yet meaningful time are there.  It’s the place where my elementary school…

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9/11. And Then Life Went On.


(originally posted 9/11/16)
And life went on. But never the same.

Originally posted 9/11/16)

About a week or so  before I turned 32 I realized exactly how selfish I was and just how little impact I had but at the time I kept that to myself.   For many years I thought it possible I could one day be a leader. However, my cherubic cheeks,  diminutive size, my damaged ego strength and my faulty frontal lobe betrayed me every single time.  I was a cartoon character. An adult who looked and seemed like a child in every way.  Even while playing grown up in my power suits and single karat ring, the truth was I worked in state funded nursing facilities selling hopes of a dignified death to desperate families.  And they believed me because there was a level I understood vulnerability and how to soothe it as only a broken lady-child can.

On this particular September morning I whipped into the parking lot just like I did every morning at about 8:45am. It gave me just enough time to  put my mascara on in my rear view mirror and dash across the street to the nursing home to get to my daily 9:00am.  As I dabbed the black goo onto my lower lashes, the goofy morning team people were on that local station and broke in to Foo Fighters to let everyone know that some bone head flew their plane too low to clear one of the Twin Towers in Manahattan and crashed right into it.  I shook my head and sighed as I twisted the brush back into its cocoon of gel and wondered if ANY adults knew what they were doing.  It was a beautiful day in the Midwest, though I am biased to any September day regardless of the conditions.  There is something about the promise of autumn as the slow and beautiful evolution into winter that is tangible visually, by smell, by temperature–such a visceral descent on all the senses toward the bleak and desolate blanket of cold and slush. Or perhaps I just appreciate when all good things must come to an end. As the radio duo blathered on, my assumption was that the plane was a small, single engine private jet that clipped the side of the building because the pilot couldn’t find a Starbucks before takeoff. It was worth being late to my meeting to see how this one was going to turn out, so I pulled out my makeup bag to put on the rest of my face.

At just after 9:00am, as I was thinking about cutting the engine, one of the DJs interrupted the other and there was an awkward silence for just a moment…just long enough that it caught my attention and I did not turn off my engine.

“Another plane just hit the 2nd tower.  I don’t understand what’s happening.”  And neither did I.  And neither did the rest of America. 

I sat in my car and for the next 20 minutes listened intently to verbal chaos.

I walked through the day room where there were two TVs on different stations but both were playing the same footage over and over.  There was no single engine private plane losing the edge of a wing. There was a commercial jet filled with regular people, that tore into the middle of the North Tower and immediately turned to smoke.  People on a Tuesday morning, many of which who were also on their way to their next morning meeting. Though there was still no explanation, if you stood long enough to watch all 17 minutes of footage there were certain things you knew you could probably rule out.

“Becky….Becky…can you turn this crap off and put on my shows?”  Poor Pearl. She said my name with such certainty and yet my name is not Becky and there were no shows to put on this morning.  My heart leaped and sank at the same time as Pearl’s spindly fingers wrapped around my hand.  Her wedding bands spun lopsided on her thin ring finger and the diamond dug into my palm.  She would never contemplate what just happened and likely 10 minutes from now would not even remember sitting and watching the thousands of sacrificed souls who would forever change history in our country.  I wondered if this is what dementia must be like.  I stood there watching this tragedy unfold in footage so telling, so horrifying that even after it was over, it wasn’t over as the smoke poured out of each building as if they were chimneys. Papers and ashes fluttered and floated to the ground like the first snow while bodies surreal while airborne sank as if tied to anchors at the bottom of the sea.  Footage of chaotic and confused armies of identical living dead covered in head to toe gray soot were wandering trying to find a foxhole that did not exist.  Camera crews live filmed authoritative sounding officers  standing in the lobby and strategizing their plan.  Community servants looking for leadership while nodding heads with axes raised and probably breathing the same sigh of hope I was that there were people who knew what they were doing and there would be an end of the day soon.  But then came the first BANG. loud enough that it was audible on the crappy 20 inch TV.  The workers stopped talking and looked around.

And then there it was again BANG.  And again.  I remember none of them moved or spoke a word but they looked to each other silently, uncomfortably.  It was that pause that made me know exactly what was falling to the ground over and over outside of those lobby windows.

They went back to talking about how to safely evacuate the higher floors with less authority and I was overcome with that same stillness.  And just when I had reconciled the first image of the planes crashing and exploding as the least shocking, it was shown again. Those of us who were not afflicted with dementia or a failing memory felt like we were seeing it again for the first time because now it couldn’t be confused with a bad action film that needed to be changed over to the Price is Right.  Now we had an idea of what came after as those recordings from ground zero became reality and unfurled into the collapse of the towers rather than a cut to the harried phone dispatcher who is also try to keep concerned citizens out of the red faced fire chief’s office.

And then life went on.

I had a meeting the very next day with a former employer who wanted to me to come back to them and pay my tuition for graduate school which started the following week.  I spoke nothing of 9/11 again.  An old colleague was sitting at her desk and I waved to her smiling.  She and her husband were important political figures in my city and I can only imagine what went through her mind as I bounced away seemingly oblivious to our hearts in our throats. I didn’t even ask about her son who lived right across the Hudson River.  But see…that was the thing.  I thought no one knew how to act because I didn’t.  It still was far enough away that we could all go on like normalish.  I was aware enough to know other parts of the world were much more quietly dealing with genocides and bombings and terror every single day. To assume that American lives are so much more valuable as compared to the rest of the world made me feel conflicted and I wasn’t sure what to do with that even though no one was comparing.  I was newly married, had a new job on the horizon and was two years out from a new future and I didn’t want to think about what it meant to have an invisible enemy who could turn my vacation flight into an act of war.

And that is what I told myself.

And then life went on.  And eventually it did for everyone else too.

Life wondering exactly how a loved one died or if maybe they would show up some day.  Life fearful of invisible people who ‘hate freedom’ and creating terrorists out of neighbors and seatmates in our minds.  Life of conspiracy theories about government far beyond just the tinfoil hat people. Life of knowing just how good people can be to one another.  Life of knowing just how horrible people can be to one another.  And life went on.

 

 

Autism Awareness Month. W is for What It’s Like

Day 23

W is for What It’s Like

“There is grandeur in this view of life…..from so simple a beginning endless forms most beautiful and most wonderful have been and are being evolved”On the Origin of Species, Charles Darwin.

A few years ago I attended the funeral of a friend who suffered and died much too young. He was a scientist-a biologist, an activist, a researcher who was respected in his field and likely the smartest person I knew. He was also pedantic and opinionated with a biting but funny sense of humor. This combination engaged even the most simple of us but most of his friends were equally as interesting and I got to numbly stand in a room in Vermont in the dead of winter surrounded by them. “What’s it like?” a friend of his asked me…”having a child with Autism?” For a moment I just thought I was not in the mindset to answer that question but quickly realized I could NOT answer because in all the years I’d not only never been asked that but also never considered it either. It was the kindest thing anything had ever asked me about A2 and perhaps it was the somber tone of the day that rendered me without speech (which if you know me well does not happen often) or maybe I had always been so caught up in the action oriented nature of having a young child with autism that to contemplate that would stop me in my tracks and make me crumble….or perhaps in the moment I felt guilty for even thinking I would crumble and considered myself so lucky to still have those I loved around me regardless of circumstance while my best friend was grieving the loss of his partner……so I excused myself instead. What I have decided over the years is that it is a bit like A2 contemplating this fountain. It is weird and fascinating and wonderful and I have no idea how it really works or how it got there. I notice every single droplet from the ones that predictably slide down the posts to the ones that spit out to collectively leave me standing in a cold puddle over time that leave my toes numb without notice until its too late. There is no warning when the water will turn to an exciting spout of beauty creating a soft rain and visible rainbow or when it will create bursts of rainy arches that I cannot immediately escape leaving me far more drenched and colder than I want to be and on opposite sides of the fountain from whomever was standing near me. So Trevor…..that is what it is like……Thank you for asking

Happy Holidays! I’m the Room Parent. I Know You Have Never Heard of My Kid, But……

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Pinterest success for a classroom party.  Though, watch out for that reindeer in the second row on the right…he clearly is up to no good.

How we got to December already is beyond me.  I feel like I just put up my Halloween decorations on the house and made my contributions to the Harvest party at school, yet the red and green bins from the basement are now out and I am filling out Evite forms and combing Pinterest to figure out what I will ruin three times before bringing it to the holiday party at school.

I am a working mom with  a 5th grader and a 7th grader.  In the last 7 years, I have:

  • been a room parent 7 times (including the year I was room parent in BOTH my kids classrooms)
  •  planned 9 Halloween classroom parties and 10 winter holiday class parties.
  •  baked an estimated 1000 gluten free friendly treats for classroom and school wide events.
  • been a chaperone at EVERY  Walk-a-thon, school celebration and field trip (one year at the Valentine’s fair in school I lost a kindergartner….and in all fairness and disclosure, no one told me he didn’t speak English….and I found him…)
  •  volunteered weekly in 4 different classrooms, shelved books in the library for 3 years and worked the cafeteria snack table
  • sold crappy novelty items no kid NEEDS at the school store weekly for 4 years
  • stapled, folded, stuffed flyers, envelopes, book fair propaganda, changed out bulletin boards, helped clean the building before summer break, cut out thousands of shapes for projects, hole punched writing projects, graded math papers, labeled book shelves, organized folders, passed out ice pops, redirected children, gave out hugs to kids I didn’t know, tied shoes, located ice packs, made meals for teacher appreciation days

I think you get the picture.  An estimated 2000-2200 hours of my time since 2009.  Basically….a 40 hour a week job for one full year. I rarely see my child during any of these hours spent at school. And before anyone thinks I am judging the non-volunteer moms, I am NOT a sanctimommy. And no,  I do not want a cookie, a prize or personal recognition from anyone.  Other than to say this….

I have had to land my helicopter on the roof of the school for two simple reasons. I have a child who doesn’t have the capacity to tell me about his friends and a school that only recently took steps to discussing making that meaningfully different.

This is not an unusual phenomenon.  I had a conversation with a special ed coordinator in another school district about this once.  She also “lives in the field” like I do having a couple of kids on IEPs.  I mentioned this struggle to her at which point she stated “I understand, but at some point, this isn’t the school’s responsibility (to help special needs parents get to know each other).  Since I was visiting her district professionally, I didn’t say much mostly because I had a feeling that her IEP-ers at home are verbal.

I didn’t start off this way.  I was your regular, run-of-the-mill, elementary school, product of divorced parents volunteer mom.  While the 1970s were not known for tales of excellence in parenting,  as a child, I was aware of the presence of the other moms who volunteered or were there for events during school. I promised myself I would one day figure out how to be one of the moms who ran the mimeograph machine on Thursdays.

Then Autism came along and and early on  I realized volunteerism wasn’t going to be a once-a-week-show-my-kids-I-care kind of activity.  My youngest was turning 8 and for the first time expressed excitement over his own birthday. “CHUCHEE CHEEE!”,  he exclaimed after I asked him where he would like to have his party.  Since he had not been invited to any  birthday parties since starting school, I wrote several school staff asking if they could help with names.

The only response I got was from the regular ed teacher with a polite reminder that due to confidentiality, she could not tell us the names of his friends.  She also reminded me that she would not be able to pass out any invitations if we weren’t inviting the whole class.  And that was it.

I was perplexed.  She did know my child had a severe communication disorder, right?  I politely acknowledged the ramifications of what she was saying and pondered in the follow up email if there were anything she could do to help us figure out a solution.

No response. So after a week,  I wrote again but with a much more explicit message.

My message was: “As far as I know, it’s not a confidentiality issue when one child approaches another for their name and phone number.  That’s how typical children do that.  We have programed the following into his talker (speech generating device):

“My phone number is ***-***-****.  Can you have your mom call my mom?”
OR
“Can I have your phone number?  My mom wants to talk to your mom”
Given its on his IEP –the need to prompt him to initiate social interactions as well as guiding him use  prompts on the talker, I am sure someone will find the right opportunity to help him with this interaction.  Its amazing to see how far he has come.  As any parent would be, we are so proud and excited for him.”

Fortunately, the principal at the time appreciated the value of enlightened self awareness and stepped in to make this happen. He had the most glorious time with his friends at his own party. While he was blowing out the candles on his cake, I took the instructions handed to me by the school on “intro to helicopters” and filed it away for later.

(For those of you who don’t know,there is nothing in FERPA (Family Education Privacy Act) that would actually prohibit a teacher from giving you the first and last name of any student your kid is hanging out with as long as it is directory information and there is no expressed exclusion in writing from the family, or if the child gave it on their own.  So no…its not “confidential”. This includes special education students…FERPA would prevent her from telling you that the child was receiving special education services, not from giving you their name…and I get it….I wouldn’t want my name and phone number handed out willy-nilly either…except my friend’s child with language hands hers out all the time simply because he can)

I am privileged to be self-employed and have a job that affords me the flexibility to work around my kids’ schedule and needs.  When you have a child with a disability, weekly mid-day therapy appointments, meetings and emergencies are part of the deal and already require us to be like Navy Seals.  We are flexible on a moments notice to switch gears and take care of whatever arises unexpectedly. But those 9-5 parents or single family households with special needs kids are truly super-parents….Space monkeys exploring uncharted territory  different than typical families with similar scheduling issues. They do not have a finite number of years in which they have to sweat it out every day, and they certainly don’t have an ounce more  flexibility to find time to sit glassy-eyed in an empty classroom pulling staples out of a cork board.   Volunteering for the purpose of  learning every nook and cranny and connecting with the people in my child’s world just to have a frame of reference would likely happen anyway for me but definitely not with the volume or tenacity.  I am lucky to have this as an option, but many…if not most working parents of special needs kids do not.  The onus is on the parent to try to figure out how to connect the dots to create a fulfilling world outside of school for their kid and many times they aren’t even given a pencil to do that.

So when you get that email or phone call that it is time to start collecting money for your teacher’s end-of-the-year-gift and its from the two moms of kids you never heard of (because each spend a total of 1 hour a day in the classroom), now you know why you don’t know who they are.  Reach out to them….because they don’t really have time to be collecting your money…but they will make all the time in the world to find out more about your child.

**The inspiration from this piece came about a month ago after yet another disheartening situation. A few weeks ago we had a meeting where I had to be very firm and direct to make sure this message was heard. I believe it was heard by most in the spirit it was delivered. Most of the team who work with my child have worked with him since the beginning.  Those direct workers are caring people for certain and they are working on a plan to rectify some of this type of issue.  Stay tuned…if you are in this dilemma for your child!

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Now I lay me down to sleep….

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4:17am

My beautiful boy wandered into my room tonight.  His curly hair tousled around his cherub cheeks, pajama bottoms twisted in a spiral around his hips from tossing and turning…he marches in quickly as if he had somewhere important to be and then suddenly stops at the foot of my bed with purpose.  He rubs his dazed eyes all the while smiling that big Cheshire Cat grin of his. “Hug”, he says as he makes that long trip to the other side of my California king.   I can’t say I hate it when that happens.  He is warm and cuddly and doesn’t thrash and kick like he used to when he was little.  To the best of my knowledge, A2 has never slept a full night in his life and no one can tell me why.   As he gets older, he seems no worse for the wear for it either.  The stretches between night time explorations have become longer and my husband and I have become a tag team settling into separate sleeping arrangements at night over the years to ensure at least one of us wakes to the new day refreshed.   He tells me “scootch magooch” as he encroaches on the sliver of bed where I sleep and drifts off as swiftly as he made his declaration of his sleep intentions.

The thing is, my husband and I never wake up fully refreshed.  There are Things That Keep Me Up at Night. Who will hug him when we are gone?  Who else will find his sweet smile so endearing even at 3:00am?  We try to be optimistic about his future.  A2 will likely never be able to live independently, but dammit, we bought him a house and we rent it out to people today so in 15 years he will have a place to live….maybe even with 24 hour support staff and 2 or 3 other guys who are sweet spirited sports and music fans like he is.  We live in an expensive school district despite struggling to afford it to make sure he has the best education and connections for his future.   Though we are socially isolated as a family because such is the nature of autism, I remain involved with my religious congregation so he is never alone. SOMEONE will always know and recognize him.  I advocate and I write and I stay present in the disability community so he will always have that community too when it comes time for some else to step in as a guardian when I can no longer do it. A touchpoint for that kind stranger to get guidance or direction. We save the best we can.   We plan for the best possible services and outcomes to give him a meaningful life worth living. We are uncertain what services  will help house him, feed him, care for him.  We can’t be sure that there will be vocational training or health insurance or social security disability payments. All of which is unnerving when you know there will be no one to love him or snuggle with him or wipe away tears.  So we plan as best we can knowing surely, there will be some kind of services for him.

But tonight there is no sleep because now I am not so sure.  I know in the morning light I will look at everyone with a suspicious eye and wonder who around me willingly voted for another reason to keep me up at night. Half the population wanted political change and they got it and whether the overt intentions were there or not, they were willing to make children like my child the sacrificial lamb.  My child will always be dependent on others to be his voice, to protect him….his rights, his body, his dignity . My child and others like him often have no option but to live in poverty and have no political influence as adults.  I am terrified for him because no matter how much we plan, no matter how much we go without today, if it is acceptable for the leader of our country to marginalize him, make fun of him, call him the R word what does that say for the people around us who brush that off and traded my baby in for not voting for the vague “yeah, but she’s worse”?   What happens when it is a decided that my “standard retard” is a drain on the system making everyone elses’ life more difficult?  There will be a supreme court in place likely for the rest of his life who will err on the side of believing that as a universal truth.

The only politics I ever talk about in my writing is my belief that most people are good but misinformed. Perhaps not in my lifetime, but certainly in his, I believed that it was possible to change the world around him enough that true inclusion and a dignified life were possible and through that, the need for the work of disability advocacy would dwindle.  Perhaps I truly believed all that because I see the innocence in his eyes.  He is a pure soul who has helped me see good first and maybe I can spread that message for him.

So, forgive me if you were one of the people who so desperately wanted political change if I seem a little distant from you.  While I am hopeful that my fears are akin to “they’re taking all our guns from us!” it’s a bit harder for me not to be devisive when we are talking about my baby.  But don’t worry….A2 won’t judge you.  He is forgiving and will love you anyway.

Days of Awe. Without Feathers: a story in 2 parts.

Hope is the thing with feathers. 

That perches in the soul

And sings the tune without the words

And never stops–at all

Until it is hunted, killed, braised, barbecued and eaten.

–Emily Dickinson

Ok.  Emily can only take credit for the first part….

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One year ago this week,  I was given the honor of speaking in front of my religious congregation during the High Holidays on the topic of hope. I stumbled on the video link a few weeks ago….and found the old me…the me speaking from my heart a year ago to be jarring and familiar.  This is the (abridged) transcript from that speech.  I am posting this so I can link to it in the coming days….to tell you of the what-came-next…..

I’m here to share my story of hope.  My family and I have been congregants of BT  for the last 10 years.  I have two versions of the story I was going to tell today…and I’d like to thank the rabbi for allowing me the opportunity to go rogue and tell a third one instead. 

So I came here this morning with these two versions of my story of hope, not knowing which one I was going to tell.   And mostly because of Rabbi’s sermon last night on vulnerability I decided to take the two stories and meld them somewhere in the middle to share my story in hopes that if there are people out here in the audience who feel the same way that they can recognize that they are not alone.  You see…sometimes its not about being hopeful or hopeless…..sometimes there is this vague middle ground if that exists in hope.  I have a child with Autism and he is a sweet, beautiful boy.   And he lives with Autism.  An Autism that impairs him from a life of independence.  I’m part of a family who is also living with Autism.  An Autism that impair us from a life of independence.  Showing vulnerability is not particularly an issue for us because we have to wear our vulnerability very publicly.  I’m also pretty visible in the community…and because of that I sometimes feel like I am the “Autism representative”.  So, Side A is extra-super truthy.  And it shows a side of hope that’s hidden away that only parents with children with significant disabilities can understand.  That we hide away.  But by sharing this truth of hope I learned that being vulnerable or weak sometimes has a detrimental effect on my child…both from an emotional standpoint and also from the standpoint of receiving services or receiving help.  It also sometimes leaves me with a compound disappointment chipping away at my worldview of hope in a world where no one can tell me the outcome of my beautiful boy’s life.  Side B is the very pretty version and it’s the version you might expect to hear.  Its even capped off with a prayer.  But its inauthentic and frankly on Yom Kippur I couldn’t see standing up here knowing that there are possibly families I will be doing a disservice by presenting you with the shiniest, most inauthentic version that I could possibly provide of hope.  So thank you—Rabbi for giving me the opportunity to come and share my story.  To spend months studying and contemplating hope in a way that I didn’t anticipate.  Hope’s not optimism.  Its not about expectation.  I have realistic expectation for my child. Its definitely not the thing with feathers. 

I came across a quote by the playwright Tony Kushner and he refers to hope as a moral obligation.  Through all of this, that made the most sense to me.  Hope just is.  Its part of our human condition.  It captures the vulnerability of hope as well.  Just a few days ago I heard an anecdote that captures the best possible way I can describe what its like to sometimes sit in the shame of feeling hopeless for a perfect child living in a very imperfect world with a very scary and nebulous future.  *It’s the story a man told about his grandfather’s wife dying.  After 65 years, she was his lifelong partner and even his driver and he wasn’t sure what state he was going to find him in.  So he walks in and says, “Hi Grandpa—how are you?  How are you doing?”  And his grandfather says “Did you know that for $4 I can take a shuttle to anywhere in the city?”.   The grandson says “that’s great grandpa”. And the grandfather says “so I went to the grocery store the other day with a list and I went to the lady at the counter and I said ‘Can you please help me with this list?  You see, my wife just relocated and her new address is heaven’”.  The grandson sits back and laughs and says “Grandpa, you always help me see the glass as half full”.  The grandfather sits back, looks at the grandson and says “no….its a beautiful glass”. 

So, my moral obligation today was not to make you think that those of us who have children who are not following the path of expectation are hopeless.  And it was also not to come up here and make you believe we are full of hope.  Because it lies somewhere in the middle.  If you are a person who sometimes struggles with hope…please know you are not alone.  Thank you.

…..stay tuned for part 2…one year later…

*an excerpt from the film HUMAN by Yann Arthus-Bertrand (2015)

 

 

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive

Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..

Running through Water

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Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…

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Autism’s Lost Text Message

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One night as I was plugging in my son’s iPad, I noticed he got a text.  Many parents lose sleep over whether or not to invade their preadolescent’s privacy by looking at personal messages, but not me.  My child at 11 years old is completely illiterate and he had never gotten a text before.  I glanced around as if nervously waiting to get busted for reading it, but the truth was my stomach was in butterflies out of joy and excitement.

Hi A2.  This is Ryder

Are you in bed?????

If you aren’t what time do you go to bed???

Maybe I have been wrong!  Maybe school has been helping him truly cultivate and explore friendships after all! Real ones!  A2’s class picture was on the refrigerator and I ran to it to ask him which one was Ryder. I recognized several of the boys in his class but didn’t know anyone named Ryder. Unfortunately, my son has a severe language disorder called Childhood Apraxia of Speech in addition to Autism so I had no way of knowing for certain which one Ryder was because A2 enthusiastically would answer “yeh!” to every child I pointed to including the girls.  Could he be a child from the resource room?   I could not know that either because  the school will not tell me the names of any of the children in that room due to “privacy”.  The kids he spends the majority of the day with.  The kids who also probably never get or send texts or receive invites to play. The kids, like A2 who can’t just ask each other and then come home and tell their moms.

My husband and I were feeling almost hypervigilant over where we would know this child from since the phone number’s area code was from a city we used to live in many years ago.  A2’s real name is an unusual one, so clearly this is meant for him. How did he get A2’s number since A2 doesn’t even know it?  Does this child comprehend that A2 can’t read? Could this be an adult?  A teacher?  A predator?  My joy was quickly turning to irrationality as my husband texted back to give this Ryder person a piece of our mind!

As it turns out…..Ryder was trying to get in touch with A2.  Just not MY A2.  Ryder was in 6th grade and had just moved from the area code on the message to our area code and had met a new friend at his new school (not ours) that day, exchanged numbers and did what every 12 year old does when making new friends.  A2 was contacted by a ghost. An illusion of a promise of the world to come.

The coincidence lacked the sparkle of serendipity and sent a gut punch that made the butterflies swirling in my tummy fly out of my mouth and away into the sky out of reach.  One three lined text of 19 words, 57 characters, 6 question marks and 2 happy face emojis sent me into a 10 minute emotional tailspin ending in a disappointment.  While my reaction may seem dramatic and my sweet boy was oblivious, man alive, I know he would have LOVED for that text to be his if he knew. You see, that would mean someone wanted to tell him that they got a new skin in Minecraft, or ask him if he wanted to ride bikes to the park or see if he’s allowed to see that Jason Bourne movie. It would mean that someone might be sneaking him a You Tube video he isn’t allowed to watch at home or asking him if he thought the new girl was cute.   It would mean that someone was thinking of him right at that very moment. It would mean he had value to people other than me and his dad.  It would mean he was growing up.

Before this whole parent thing came along and made me loopy with worry, I used to help families move their loved ones into nursing homes.  One particular instance, I helped take inventory of a man’s belongings and I asked him to give me his wallet so I could start a resident account for him to keep his $10 bill safe. He refused and his wife asked to speak privately with me in the hall.  “I know he has no need for money here, but is there any way you can make an exception to let him keep it with him?”. I’m certain I did not handle the situation with sensitivity or understanding because she replied, ” We were never wealthy people but he was proud of the fact he always put food on the table or could hand his sons money when they needed something. That money in his pocket makes him feel like a man. And that, child, is all he has left to feel like one.”.  I let him keep the money and have contemplated since then what the last material thing I would hold on to would be and why. I just didn’t realize that it would come earlier in life and be a random text message that was not meant for my child.

These things.  These little things that give us a perceived sense of value–that we anchor to other things and make them into something more.  Ultimately, the text itself was probably meaningless to A2.  He however does very much care about all those things that receiving a text implies.  Having a way to communicate with the world makes you a part of it and having a rolling digital scroll of blue and white messages are like the receipt to prove it nowadays.  My friend’s daughter left her phone at home while she was at overnight camp and powered up when she returned home to 1022 unread text messages. I never did ask if she read them all.  I do know that A2 will never experience the betrayal that can come with adolescent friendships and are exacerbated by text messages.  No girlfriend break up text.  No secret texts between friends who are standing right there with him, exploiting his trust.  No anxiety over the three dots or “read” receipt.  No.  None of that. While I am disappointed that Ryder misdialed and reached out to the wrong A2, just for a moment I thought about grounding A2 from his device because he knows he shouldn’t be texting so late.

9/11. And Then Life Went On.


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About a week or so  before I turned 32 I realized exactly how selfish I was and just how little impact I had but at the time I kept that to myself.   For many years I thought it possible I could one day be a leader. However, my cherubic cheeks,  diminutive size, my damaged ego strength and my faulty frontal lobe betrayed me every single time.  I was a cartoon character. An adult who looked and seemed like a child in every way.  Even while playing grown up in my power suits and single karat ring, the truth was I worked in management in state funded nursing facilities selling hopes of a dignified death to desperate families.  And they believed me because there was a level I understood vulnerability and how to soothe it as only a broken lady-child can.

On this particular September morning I whipped into the parking lot of the Skatetown roller rink just like I did every morning at about 8:45am. It gave me just enough time to  put my mascara on in my rear view mirror and dash across the street to the nursing home to get to my daily 9:00am.  As I dabbed the black goo onto my lower lashes, Bob and Tom or Frank and Steve or whoever the goofy morning team people were on that local station, broke in to Foo Fighters to let everyone know that some bone head flew their plane too low to clear one of the Twin Towers in Manahattan and crashed right into it.  I shook my head and sighed as I twisted the brush back into its cocoon of gel and wondered if ANY adults knew what they were doing.  It was a beautiful day in the Midwest, though I am biased to any September day regardless of the conditions.  There is something about the promise of autumn as the slow and beautiful evolution into winter that is tangible visually, by smell, by temperature–such a visceral descent on all the senses toward the bleak and desolate blanket of cold and slush. Or perhaps I just appreciate when all good things must come to an end. As the radio duo blathered on, my assumption was that the plane was a small, single engine private jet that clipped the side of the building because the pilot couldn’t find a Starbucks before takeoff. It was worth being late to my meeting to see how this one was going to turn out, so I pulled out my makeup bag to put on the rest of my face.

At just after 9:00am, as I was thinking about cutting the engine and knocking on one of the 1st floor doors of the nursing home to get in, one of the DJs interrupted the other and there was an awkward silence for just a moment…just long enough that it caught my attention and I did not turn off my engine.  “Another plane just hit the 2nd tower.  I don’t understand what’s happening.”  And neither did I.  And neither did the rest of America.  I sat in my car and for the next 20 minutes listened intently to verbal chaos.  Once I realized no one knew anything, I dashed inside to the tail end of a the daily meeting I typically took over and attempted to lead out of frustration for lack of accountability.

“Did you guys hear about the Twin Towers?”  I asked breathlessly setting my purse on the table in front of me. Of course, they hadn’t. They were mostly grown ups and had been at work since 8:30am, like I should have been.  “Some sort of accident. It’s probably satellite or something messing with air traffic control.”  I of course had no idea, but I was credible enough that people were concerned. I was in-the-know and NOW we have a meeting.

I walked back through the day room where there were two TVs on different stations but both were playing the same footage over and over.  There was no single engine private plane losing the edge of a wing. There was a commercial jet filled with people-regular people, that tore into the middle of the North Tower and immediately turned to smoke.  People on a Tuesday morning, many of which who were also on their way to their next morning meeting. Though there was still no explanation, if you stood long enough to watch all 17 minutes of footage there were certain things you knew you could probably rule out.

“Becky….Becky…can you turn this crap off and put on my shows?”  Poor Pearl. She said my name with such certainty and yet my name is not Becky and there were no shows to put on this morning.  My heart leaped and sank at the same time as Pearl’s spindly fingers wrapped around my hand.  Her wedding bands spun lopsided on her thin ring finger and the diamond dug into my palm.  She would never contemplate what just happened and likely 10 minutes from now would not even remember sitting and watching the thousands of sacrificed souls who would forever change history in our country.  I wondered if this is what dementia must be like.  I stood there watching this tragedy unfold in footage so telling, so horrifying that even after it was over, it wasn’t over as the smoke poured out of each building as if they were chimneys. Papers and ashes fluttered and floated to the ground like the first snow while bodies surreal while airborne sank as if tied to anchors at the bottom of the sea.  Footage of chaotic and confused armies of identical living dead covered in head to toe gray soot were wandering trying to find a foxhole that did not exist.  Camera crews live filmed authoritative sounding officers  standing in the lobby and strategizing their plan.  Community servants looking for leadership while nodding heads, axes raised and probably breathing the same sigh of hope I was that there were people who knew what they were doing and there would be an end of the day soon.  But then came the first BANG-loud enough that it was audible on the crappy 20 inch TV.  The workers stopped talking and looked around.  And then there it was again BANG.  And again.  I remember none of them moved or spoke a word but they looked to each other silently, uncomfortably.  It was that pause that made me know exactly what was falling to the ground over and over outside of those lobby windows.  They went back to talking about how to safely evacuate the higher floors with less authority and I was overcome with that same stillness.  And just when I had reconciled the first image of the planes crashing and exploding as the least shocking, it was shown again. Those of us who were not afflicted with dementia or a failing memory felt like we were seeing it again for the first time because now it couldn’t be confused with a bad action film that needed to be changed over to the Price is Right.  Now we had an idea of what came after as those recordings from ground zero became reality and unfurled into the collapse of the towers rather than a cut to the harried phone dispatcher who is also try to keep concerned citizens out of the red faced fire chief’s office.

And then life went on. I had a meeting the very next day with a former employer who wanted to me to come back to them and were willing to let me set my own schedule and pay my tuition for graduate school which started the following week.  I spoke nothing of 9/11 again.  An old colleague was sitting at her desk and I waved to her smiling and telling her of my soon to be new-old life and how I looked forward to seeing her regularly soon.  She and her husband were important political figures in my city and I can only imagine what went through her mind as I bounced away seemingly oblivious to our hearts in our throats. I didn’t even ask about her son who lived right across the Hudson River.  But see…that was the thing.  I thought no one knew how to act because I didn’t.  It still was far enough away that we could all go on like normalish.  I was politically aware enough to know other parts of the world were much more quietly dealing with genocides and bombings and terror every single day. To assume that American lives are so virtuous and valuable as a price above rubies as compared to the rest of the world made me feel conflicted and I wasn’t sure what to do with that even though no one was comparing.  I was newly married, had a new job on the horizon and was two years out from a new future and I didn’t want to think about what it meant to have an invisible enemy who could turn my vacation flight into an act of war.  And that is what I told myself. And then life went on.  And eventually it did for everyone else too. Life wondering exactly how a loved one died or if maybe they would show up some day.  Life fearful of invisible people who ‘hate freedom’ and creating terrorists out of neighbors and seatmates in our minds.  Life of conspiracy theories about government far beyond just the tinfoil hat people. Life of knowing just how good people can be to one another.  Life of knowing just how horrible people can be to one another.  And life went on.

 

 

I would rather___________ than go to curriculum night.

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Many years ago when A2 entered the public school system he came from a private school that had a peer program and an ABA focus.  He is so influenced by his peers we thought maybe it would be a good time to bring him back to our school district while he was so young.  It was no small decision and perhaps ultimately made under the haze of xanax.  I waltzed into school on curriculum night, notebook in hand, mascara and lipstick reapplied. I waved and smiled at other parents I recognized from the neighborhood. We chatted about the end of summer homeowners association picnic and how nice the tennis court was looking now that they repainted it and we absolutely should get together for tapas sometime (how has that not even happened yet?!). The desks were so small and facing each other.  Tidy containers of crayons divided by color, posters on every square inch of wall space, shelves that housed bin after bin of books. Mobiles hung from the ceiling.  Not at all what his ABA classroom looked like…way too much to distract..but it was all good.  He will learn to adapt to this no problem…the neighborhood kids are all here!  Someone took the time to take all the crayons out of the boxes!   I found A2’s desk and it had a paper name plate with cartoon pictures of pencils and school buses just like everyone else.  There was an envelope on his desk with all the “getting to know your child” papers like everyone else.  There was a tidy blue folder with the agenda for the evening waiting for us just like everyone else.  Sure….my mother hips were hanging over both sides of the tiny chair and sure, the middle aged teacher greeted us and held her gaze with my husband much longer than she did with me…..but that’s what we do here in public school…normal, regular people stuff.  Then the teacher started talking.  And talking.  And asking us to turn pages in our packets.  And telling us what our kids can already do walking in the door on the first day and where we could expect them to be when they walk out on the last.  And the road map to get there sure as hell was not the road map to get to Italy or even Holland for A2.  Nope. Flyby right over Europe to the heart of Syria (which I hear is really, really nice this time of year….really nice. Hot.  But it’s a dry heat.). I did not see the person who punched me in the stomach. I didn’t even know that a sucker punch was possible in a mainstream classroom. Before I could find out if a bitchslap was next, I gathered my things and walked out.  That teacher never did follow up with me to find out why I left, or if I was ok or if my husband liked her new back-to-school-sleeveless-blouse.  A2’s intervention specialist saw me in the hall and gently said “..come with me to the resource room where he is a rock star. I’ll show you around”.  She meant well, but he could be a rock star at his other school.  I decided right then that the only way I would ever cope in another curriculum night was if I could sit at one of those tiny desks with a Big Mac and a bottle of stoli while listening to other parents ask questions like,”what if my child is above the standard for reading?”  or complaining at the lack of computers in a room he won’t actually get to be in. I might be able to get away with the Big Mac…but the vodka would probably be  frowned upon at the administrative level.

Don’t misunderstand…my boy is perfect in most ways to me (sometimes he is a bit of an asshole…no one is 100%)…I don’t fit a mold and when I realized I was going to be a mom 13 years ago I had no expectations my kids would either.  I embrace the weird and inappropriate and many days it takes all of my will to push my monkey brain back into it’s cage before it starts flinging poo.  I’m ok with all that.  What is hard is that the rest of the world generally is not.  While he gets the desk and cubby just like everyone else, he doesn’t get to have sleep overs, or bathroom privacy or even a way to ask  other kids if they will skype or text him later.  Due to “confidentiality” the helpers assigned to him are not allowed to tell me the names of the kids he would probably want to ask anyway.  He doesn’t get detention for talking out of turn or showing up to class late.  He doesn’t trade carrots for cookies with the kids at lunch. The bins of books must still be read to him and doesn’t get excited when he hears about the release of the newest Harry Potter book.  And curriculum night?  Well…all those things are written in the blank spaces between the lines on the syllabus.  The syllabus that is only visible to certain parents.  Not just like everyone else. The tiny desk is like a mirage.  Those things don’t happen because those are not the things that are important to the people who spend 7 hours a day with him.  Goals are set to reflect the things A2 CAN’T do rather than what he can whereas the curriculum for the rest of his peers are focused on what they WILL do.  And not just at 80% accuracy in 4 out of 5 observed opportunities.  I spend my life cherishing the tiny accomplishments inching along unseen by the naked eye or letting hurtful comments roll of my back like water off goosefeather by people who meant no harm. I can sit through all of that, but it reminds me my child is lonely.  And I won’t sit through that.  So tonite, the very last curriculum night of elementary school for me ever….like a pro  I went in, signed my name on the volunteer list, eyeballed the room of parents , took 2 tums to settle my stomach in anticipation of the Big Mac in my mom-bag and walked out.

The bottom line is I would rather have heartburn and a hangover than go to curriculum night.  What would you rather do?

Here is a short list I had some friends help me compile.  Thank you Dava, Kelly, Anne, Carmen, Jessica and Katie

Express my dog’s anal glands

Watch another episode of Caillou

Make out with Donald Trump

Fall asleep in an Uber

Run 5 miles in the summer without chafe guard

Receive a text from Anthony Weiner

Wear truck nuts as a fashion accessory

Get through a Monday without coffee

Drive across country with my kids with a dead iPad battery

See my dad in a man-thong