The Mending Wall

IMG_6047These wildflowers grow on a narrow strip of grass between someone’s property up against a century old stone wall and a city sidewalk near my home. There is a handwritten sign on a stake stating simply PLEASE DO NOT MOW OR SPRAY WILDFLOWERS. THANK YOU. While seeing them in full bloom one might wonder why someone would do that even when instructed to.

Today we were shaken again to our core. Today we were reminded again that nothing should be taken for granted. I am angry that again I feel afraid for my children when they leave the comforts of home.  I am conflicted because A2 is sick and at a time I should be saddened for 50 families and frightened at the fact that laws continue to exist that allow for permits for individuals to decide the fate of 50 people in one rain shower of shots. People who were given the right to exist with equal love are gone and we are all reminded there is still an opposing view.  But A2 is the kind of sick that makes his father talk in circles and makes me stone faced and logical. The kind of sick that sinks our instinctual fears as parents until the wind kicks up again and fills our sails to let us know it’s smooth waters soon. I can’t fear all things at the same time.

So I can stop to show you these flowers I saw today. And you can stop to see them. And we can all appreciate that someone stepped up to make sure that they bloomed to their full beauty for all of us. Please see them. Just for this moment. ‪#‎onepulse‬  

On the Eve of Your 11th year…..

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Your brother saw the ocean for the first time about a month before we knew you.  The expanse stopped him in his tracks leaving him silent and still.  The moment you were born 11 years ago today you cried and screamed and when they held you up for me to see I instinctively whispered your name.  You stopped crying, found my eyes  and you were silent and still and you took my breath away.  Your presence in our lives has been like seeing the ocean for the first time–beautiful and tumultuous and every day is like seeing the world in a way no one else gets to.  I feel lucky I get to be your mom.  Happy Birthday sweet A2…….

The Gorilla in the Room…..

There have been so many news stories, articles and commentary on social media about the tragic situation over the weekend that at this point I am fairly sure you would have to live in a cave to not have at least heard about it.  In case you do live in a cave, here is what I know about the situation with the little boy who fell in the Gorilla exhibit in Cincinnati:

  • He fell 10 feet into the moat
  • He fell 12 feet into the moat
  • He fell 15 feet into the moat
  • He was seriously injured but with non-life threatening injuries
  • He came out without a scratch
  • The gorilla rushed him but did not hit him
  • The gorilla approached him cautiously only after hearing him splash in the water
  • The gorilla did not intend harm, he almost seemed to be protecting the boy
  • The gorilla violently was dragging and throwing the boy in the water
  • It took 10 minutes before anything was done by rescue team
  • It took 15 minutes before anything was done by the rescue team
  • The boy had his hand in his mother’s back pocket to stay close and in a flash he was gone
  • The boy’s father crawled out onto the ledge to jump down into the moat
  • The person who filmed the footage crawled out onto the ledge to jump down into the moat
  • Eyewitnesses say she was on her phone and not paying attention until they saw him in the water
  • Eyewitnesses say the boy was gone in an instant and he was seen crawling out onto the ledge and was pursued immediately by family and spectators alike

From reading up….here is what else I know:

  • Jungle Jack Hanna supported the zoo’s choice to kill the gorilla because there was no other realistic option
  • A large part of the community did not support the choice to kill the gorilla and sees the tragedy of killing an innocent endangered animal because there were other options
  • A large part of the community ponders how in the world the zoo could have such an unsecured area that a child could breach it that quickly
  • PETA did not support the choice to kill the gorilla OR have him in captivity in the first place for our entertainment
  • A child slipping away from a parent can happen to anyone in an instant
  • The mother is completely responsible for the death of that gorilla, is a neglectful parent and clearly was not watching her child and should have him removed from her care to be raised in foster care.
  • The mother has received several death threats
  • A gorilla is dead and a boy  is alive

And lastly….here is what else I know:

  • A 4 year old boy is alive
  • NOTHING.  ULTIMATELY, I KNOW NOTHING.  AND NEITHER DO YOU.

Yes, its a tragedy no matter what.

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Not gorillas…..I know….but I own the image.

 

 

 

 

 

Why we do the things we do. The trauma edition.

-font-b-Handmade-b-font-mini-kraft-paper-font-b-envelope-b-font-5-8x9cmThere is a large manila envelope still sealed sitting on my desk. No matter how much I stare at it, it doesn’t:

1. Spontaneously burst into flames

2. Disappear

3. Take care of itself.

It does not contain a subpoena, a warrant for my arrest or an eminent domain letter. It was not delivered certified mail or by official messenger. It was hand delivered by my 6th grader because the teacher very graciously contacted me ahead of time to ask me how I would like the prior written notice papers from the last IEP meeting delivered so I could sign and return them in a timely manner to the school. It has been sitting and judging me silently for over three months now as it sits untouched. I am reduced to a Pavlovian dog, except my bell is an envelope and my saliva is anxiety. A crippling-can’t-get-any-thing-else-done anxiety. And I rationally know there is likely nothing in that envelope that should really cause this kind of response. But that’s the thing with phobias or irrational fears and trauma response.

Yes…I said trauma response. 

Often times prior experience attaches itself to something innocuous and we then pair our previous response with a neutral stimuli and generalize it over time. Caller ID with the school prefix, email and now apparently manila envelopes have become the manifestation of years of battles, blockades and having my already fledgling parental competency called to the carpet.

For me….my defining moment were words uttered in a meeting 7 years in….but 3 years ago:  “Its not fair for one (A2) to get more just because of your parental advocacy”  (which was agreeable…but in a whole different way given we were discussing data collection that was reportedly correct, not collected by me…and concerning). 

It is silly I suppose if you are the one who stuffed the envelope and have no knowledge of my defining moment or my other, more academically impaired child. She certainly must be wondering about the warning likely issued by the elementary school about my hypervigilance, because the experience she is having is the opposite. A parent who is late to answer emails yet bizarrely will parse apart data collection in an IEP meeting….and be spot on why it was taken incorrectly must mess with her own schema of special needs parents.   I have learned to become a very hands-off parent in hopes of preserving my own life in the last year.  I have a double-decker weekly pill case that houses my capsules of life extending medications that would impress most of the AARP crowd.  Yet I am not yet even 50.  Years of sleep deprivation and external stress can only wear so long in a genetic cesspool.

So there it sits….but not without words. It screams to me every day over the din of my responsibilities. But I am strong and I can withstand long term, unfocused wailing.

So I leave you with 3 truths….

A. I am human.

B.  I love my child more than anything I could have ever imagined.

C.  I am preparing for an uncertain future in a time that I will no longer be here to advocate in a world that does not see my child as perfect as I do.

…and there are things that get in the way of of the co-existence of Notions A, B and C.  

Sorry about the envelope.

Sliding Doors. Looking Forward. Looking Back.

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A few weeks ago I was stuck in traffic.  Albeit Midwest traffic, but a standstill is a standstill.   A1 was incensed in the same way any curmudgeonly old man dealing with road lock might with a loud “C’Mon!!!” and a quivering fist in the air.  Except  he is a 6th grader who was going to be late for religious school.  And he has never  personally navigated traffic of any kind.  I calmly explained to him that sometimes life is quirky.  Had we left 15 minutes earlier we might be part of the accident slowing everything down.  Or maybe by showing up 15 minutes late he might miss the most boring part of class.  For all we know inconvenience is a blessing in disguise.

For all we know.

Netflix is showing the movie Sliding Doors this month (and serendipitously also showing Serendipity, a way more palatable existential rom-com). Gwenneth Paltrow’s life splits off into parallel simultaneous existences based on minor differences in circumstance that alter the outcome of her immediate future.

Ultimately  three things are revealed:

#1  The event that changed everything was out of her control, seemingly extraneous and unnoticed by her

#2. Everything that happens happens in parallels whether she is part of it or not 

#3.  The outcome somehow is going to be the same regardless of the path.

I showed this movie to A1 to drive a concrete point home in the spirit of control and lack there of.  I have this funny thing with the idea of omnipotence and omniscience at the same time–a notion that seems cruel to those of us whose minds cannot conform in that manner no matter how much salvation sounds like a cozy deity-down comforter everyone else can snuggle in.  It means people like A1 and me are damned from the start because we just CAN’T …and it was planned it that way.  Like being forced as a child to hug and kiss a relative even when that relative knows it makes you uncomfortable to do so.  All in the name of making that relative feel warm and special.  Except what kind of weirdo feels all the good feels by making a child squish their body against theirs against their will?   That is why I show Netflix movies to my kid instead of reading parables.  I’d rather he believe that people just think he has bad taste in movies than that his life and choices are meaningless and filled with anxiety because his synapses don’t fire in a way that will ultimately please an all knowing being who made him that way.  We cannot help thinking about how our moments might be affecting an unknown future.

A2 operates differently.  These things do not need to be explained to him because he is only in the present.  I am happy because Daddy is here NOW.  I am not happy because I want Daddy here NOW.   NOW I am happy and screw Daddy because we are on our way to Chuck E. Cheeses.  If all is no worse than status quo, then optimism and hope are not necessary if you are only worried about right now.  It really isn’t until someone introduces you to unrealized expectations or well conditioned responses that you develop a sense of disappointment, dashed hopes and anxiety of an unknown future.

In recent years A2 has also taken to obsessively asking “what is the time?” and watching any clock either as if it is a piece of art to be analyzed and admired or else as if at any time it might fly off the wall and attack him like the starlings from The Birds.  His authenticity and ability for stopping and acknowledging the moment in the the moment, realizing there will be a new moment soon is a gift.

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As we stand on these tracks together I think about how Autism has robbed A2 of a regular childhood but probably not because he views it that way but because I do. There is a lot of track already behind him but there is much more ahead and I strain to see the horizon in case a train comes barreling down the tracks…because at some point there will be a train. And there is nothing I can do to stop that.  However, A2 only looks at the rails beneath his feet being careful not to trip and he only looks back to look at me.  If he were to hear the distant whistle, I am sure he would simply step off the track in that moment so he could watch the train go by.  Because my focus is on the horizons while stumbling down the rails, I run the risk of getting my foot stuck between the slats and then panicking thinking about the possibility of the oncoming engine. I am hoping that in 2016  I can continue learning from A2 as I struggle with the concept of mindfulness, especially when the moment seems bleak.  I hope for the ability to recognize each moment as unique and not as good or bad and that I can cherish the people and things that are important to me regardless of how time seems to be treating us in the moment.

I just need to remember to point to my wrist and ask “what is the time?” and know that it will be different soon.

The Tail Wagging the Dog: Tales of a Therapy Dog by a Bone Tired Mom

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Our dog is a bit of a sonofabitch.

He is playful and fun and sweet and well behaved.

Until he is not. And it always catches us off guard. 30 rounds of chasing the ball and joyfully bringing it back is often followed by a random and somewhat humiliating drive-by where he passes me up, runs 3 yards over and pees on the neighbor’s dog. The ability to look nonchalant and nonplussed at the same time after your dog just defiled someone else’s beloved pet is something that only the parent of a child with Autism can pull off with Merylstreepworthy street cred.

These times I breathlessly call his name while chasing him in circles with what I believe to be an audible background soundtrack of the Benny Hill theme song, I will often submit myself to the idea of giving him back to the service dog agency. Wally came to us in a somewhat miraculous way. I relinquished the idea of a service dog for A2 years ago when I learned that an application was only the first step in a lengthy and costly fundraising and training endeavor–a cruel (but necessary)paradox for a middle class family supporting a child with a disability. So when I saw a post in a local Facebook mom’s group about this agency’s need for foster families for their breeding program it was a no brainer. He had been through an advanced training program, came with the bright orange “do not touch” vest (that as it turns out that as a whole people just ignore) and most importantly, neither of my children reeled away from him in fear of barking or jumping. I could get used to having to drive out to the agency on a moments notice for his doggie duty or the fact that as an intact male he has a certain
“je ne sais quoi” that at times makes me feel uneasy explaining to groups of gathering and inquisitive elementary school kids.

While this dog is not trained specifically for A2, I had notions of things. Wonderful things. He would have the gumption of a sheepherding dog and rustle A2 back off to bed at night allowing all of us a full nights sleep. He would have Lassie-like receptive and expressive language skills to alert us if A2 wandered off…or fell in a well….or were lost in a canyon. He would be A2’s best friend and would play ball, endure endless tummy rubs and kiss away tears. But alas, Wally is not trained to endure colossal meltdowns or high pitched screaming  and A2 is obsessed with Wally’s nails needing trimmed and is also wholly mortified by his noisy and explicit grooming habits.

It often feels more like they are roommates who met out of necessity on Craigslist.

We wanted Wally to be for A2, but really, we wanted him to be for us. We needed extra eyes, extra sleep and fuller hearts knowing A2 had a friend. But its not looking like this part was meant to be.

The surprise twist here is that I did not anticipate that Wally is here for A1. We didn’t see that one coming at all. I have watched A1 learn to use inflection in his voice to get him to follow a command or gain his attention. Wally’s presence is forcing A1 up out of his gaming chair to take him on walks or throw a ball or frisbee. He is quickly using perspective taking in a way I have never noticed in questions such as “Do you think Wally likes me? How can you tell?” or “Mom, I feel so bad. I wish I could give him some of my sandwich. Is this how you feel about me with my Celiac when other kids are eating gluten around me?”

My beautiful, slow to warm boy who would rather not touch or be touched is slowly but voluntarily petting, patting, feeding and cuddling Wally. Though it took me years to understand and accept that A1’s needs and worldview are just very different than mine, I have always known that forcing my motherly agenda would only reinforce his discomfort. And in a very rare moment–maybe the second time in his life just last night while watching TV he scooted closer to me on the couch, leaned in, and rested his head on my shoulder.

So Wally, you are off the hook. I will humble myself as I once again issue the world’s most awkward apology and assure the neighbors that we have no intentions of keeping their dog since you have clearly claimed him as your own just as long as you keep doing the stealthy, stellar job you were given to do here with us.