B is for Boredom: 2020 Autism Acceptance Month

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Many hours spent on bridges and docks and piers. Don’t be confused by his face. You are not looking at boredom.

The topic of boredom for A2 has not dissipated for us since I first wrote about it in 2015. Instead it has become far more complex and it has teased out some things I have always known and some things I never realized.

A2 still desires socialization. He will still stand at the back window looking through the trees to see if the neighbors are out playing basketball. He will sadly ask to go over, reflecting he is already aware of the answer. At 14, play dates with adults present are no longer planned. Other kids really like A2–he is friendly and sweet and makes anyone near him feel special. But they are no longer referred to as “friends” like they were when they were nine. Instead, they are now “peers”. While in 2015, that would spark a bit of resentment, today it only makes me just a little bit wistful while I wait for the existential slide of middle schoolers through their developmental rite of passage of becoming their own person in a social world. They might soon recognize just shooting hoops without playing a game is ok. A shared popcorn in a movie theatre side by side is ok. Cheering on the Buckeyes or the Clippers and high five-ing is ok. We can wait. That is hope.

A2 still cannot initiate or maintain a leisure activity at home other than switching out screens and still will pace anxiously asking, “Wha’ is da schedule?” until we show him that we indeed have a schedule and potential order to the day, even if he cannot read it. Even if we don’t follow it. (Side note: I have recently had the notion that A2 thinks there is some magical schedule every single day that somehow everyone around him is aware of but him. We all know know what comes next and we are just holding out on him). In the last 5 years though, I realize he asks more for activities than he does people. And when he does ask for people, he asks for me or his dad. And sometimes his grandparents or uncle, which I always found unusual since he spends very little time with any of them.

You see, I now recognize I cannot untangle the wiry, rat-king ball of Christmas lights to always determine what strand is boredom and what is loneliness. Let’s face it, I think most parents are ok with their child being bored, but rarely are any of us ok with them being lonely. I have had to tease out what just LOOKS like boredom or loneliness. Which wires are behavioral challenges and which are moments he is attempting to communicate or capture the attention of someone else. Maybe it is not boredom at all. He may be in deep contemplation of some visual detail around him and as he sits and stares off, he may not be waiting for his personal conceierge, driver or tour guide to whisk him to the next place or engage in discussion over what he sees.

Sometimes this is hard to see too because A2 is so joyfully involved in so many things. He plays baseball every summer for the Miracle League. He is a state champion bowler with the Special Olympics. He loves the zoo and the science museum and Chuck E. Cheeses. A2 lives for summer for crowded festivals and concerts and baseball games. In the winter, he figured out how to find the movie theatre app on my phone and has actually purchased seats to movies (unbeknownst to me). He lives for Columbus Blue Jackets Hockey but seems ok with defaulting to OSU hockey or women’s basketball (which is $100 less a seat!). We are groupies one Friday night a month at a local bar where his favorite band plays and they keep the french fries coming. There are times we are surrounded by so many people, yet we are still experiencing all this excitement completely alone–shared just between the two of us.

I have realized my boredom and his boredom are not intertwined. We have stood on docks of piers in major cities and watched the boats and barges and helicopters fly overhead for hours at a time. We have sat on similar docks with still waters at the end of quiet meadows watching the ducks drift by. We have paced the length of regional airport lobbies watching single engine planes take off and land. We have spent countless hours of outings like this for years, where even during extended family visits, they will choose not to attend because these ARE the activities that he wants to do. I have learned to let go of sadness of not feeling important enough to share the space of our leisure or the recognition I have spent 1000 afternoons bored and lonely and might want some company for my overactive amygdala and ADHD brain.

Instead, I learned to Just. Be. Present.

And just like that, I recognized A2 is not bored or lonely in those long afternoons. It is me. And he and I are not the same person. I started noticing the art and details and patterns around me. I started noticing when the light was “just right”…or when it was about to be. I started noticing ambient noise that is drowned out by attention grabbing sounds (which, by the way, are typically man made). I also started noticing when I was not in the right mindset to go sit for so long and started teaching A2 to be considerate of my feelings time to time in those moments and how to compromise. He is empathetic and has the capacity to learn that and should, just like every other teenager.

I have so many more thoughts and concerns about the topic of Boredom and how it manifests in our Autistic Family in 2020, but during this global pandemic that has moved from social distancing to sheltering-in-place to quarantines, I recognized that there are many, many folks out there that are experiencing boredom or loneliness on a level they never have. For those of you who that description fits the bill, look to your autistic friends or caregivers. We all still have the capacity to be entertained and to communicate and to keep busy. I find people are not sure what to do with a slower pace, a smaller world filled with uncertainty or with believing their time is being spent without the perception of productivity or an end result. Us Autism Families live on a higher plane of living than what modern society has sold us all. Ask us. Most of us are happy to include you on how to navigate this much more familiar place.

2015: B is For Boredom

While A2 is the most fun loving, joyous person you will ever meet and lovess to be on the go–like many children with Autism he struggles with extreme boredom since he requires adult intervention to choose, initiate and maintain activities. His explicit expression of wanting to play with other kids is emerging but often it leaves him alone knocking on the back door window as he watches children playing unsupervised across the street.

2020: B is For Boredom

At The End Of The Day….

I was in a research study recently involving blogging, deciding upon content, deciding upon platform, media, etc. It truly was an interesting experience–I guess no one ever directly asked me to tell my story in such a way before. While they interviewed over a dozen already, many of which where “mom bloggers”, I was the only one interviewed who addressed experiences as a family living with disability.

Their takeaway they volunteered to share with me? Their experience with other parent bloggers did not include the same judicious protection of content/overcontemplation of concern regarding the forms of dignity I discussed, nor did it involve the level of scrutiny that dug as deep as our level can go. And yes, they do blame their kids for tough days or recognize the universal struggles in a laughable or relatable way and are rewarded for that relatablity on social media. No one else struggled in that balance the way we do.

In our world, there is a fine line which moves it’s position depending on who you are talking to. We have a job as family caregivers of disability to be relatable advocates who set the bar for how we and our kids are perceived by the rest of the world. And unfortunately, I do believe it can be at the expense of self care or which ultimately affects they way we cope within our family systems for the benefit of our charge. We are held to a much higher standard out there in cyberworld under much more challenging circumstances than other parents. I forgot about this piece I wrote a few years ago, but it was on a day I had a similar epiphany at the end of a long, hot summer. Sometimes, I want to say funny things about being a mom too. And yep…sometimes I am selfish.

Running through Water

bunny hillThere are some days that my heart breaks selfishly a bit.

Days like today.

As A2 gets older there really are no more play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cuing socially reciprocal behavior are going to inhibit his peers age appropriate wing stretching.

Today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” sign at the base of the water slide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things…

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Autism and A Gun By Any Other Name

I vowed to share this every time there was a mass shooting. But since writing this article, there have been over 800.

Not 800 people. 800 instances of someone taking a gun somewhere and there were 4 or more casualties.

My child can’t process what he knows, fears or even experiences with me without any nuance. This creates a different level of parental paranoia over his safety in which to be judged. He will never, ever, ever be the “good guy with a gun”–the only argument–and a wildly circular one at that, about how to fix this problem.
None of this is ok for any of us. Autism or not.

Running through Water

img_4970My brother and I were sitting on the couch chatting about politics last winter when I showed him a segment from the Daily Show.  It was a humor bit about calling a Wyoming elementary school to find out if they had a gun in the event of grizzlies. There was a laugh track and a brief photo of a gun, so it was odd to me when A2 gasped loudly, stood up from the couch waving his hands and both tearfully and fearfully begging, “No gun!  No! Shoot, no!”

We are not hunters nor are we gun enthusiasts and neither are my friends. As far as I know, A2 has never seen a gun in person or on TV, given 100% of his viewing includes Barney, The Wiggles and NBA.  He has never heard a gun shot. Neither he nor his brother ever pretended things were guns.  He has…

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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.

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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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.