Autism Awareness Month. G is for Genetics (and Guessing)

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(originally posted April 2016)

G is for Genetics

I get asked often what I think caused my child’s Autism.  I believe it is completely counterproductive to even consider it until such a time that there is solid evidence.  They are here now. I love my kids fiercely. Our struggles would be the same whether or not we knew the ‘why’ part.

Infection in mother during pregnancy, vaccine accidents,  overweight in mother during pregnancy, gestational diabetes, inadequate iodine, diagnostic ultrasounds, prenatal stress, advanced paternal age at time of conception, pesticides both before and after gestation…I’ve read those all.  And they all have the same message:  “Dad….Mom (but more likely Mom)…you did something…IT’S YOUR FAULT.”   These theories are also part of what drives the Neurodiversity movement.  That is, that individual differences and biological diversity are a normal and natural part of evolution and Autism is no different, so it is not something to be treated. Behavioral disruption is misunderstood communication and all the comorbid conditions such as GI/bowel issues, intellectual impairments, mental health issues are just that. Something not related directly to Autism (a whole other can of worms within our community….).

Regardless of your belief system…there is only one thing we know for absolutely certain: NO ONE KNOWS WHAT CAUSES AUTISM.

To demonize parents who make decisions you would not necessarily make is also counterproductive. 

As parents we have an instinct to protect our children. When a parent watches the baby she knows slip away into a world of of silence or pain in front of her very eyes and no one can tell her why or really what to do..well….just take a moment to let that sink in regardless of your parenting/political/medical stance. I don’t have to agree, I just have to have empathy.

Here is what we do know.  There is a genetic component to Autism and it is likely paired with an environmental trigger.  Just like Type 2 Diabetes. You can’t develop this unless you have the genes.  You make it far less likely to get it if you get your butt up off the couch, exercise regularly and do not eat like a regular American.

We just are not 100% certain what that common genetic component or the environmental one in Autism.  I am not going to even pretend to know anything about genetics. The best I can do is tell you:

  1. Picture a city with 20,000 streets.
  2. Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them.
  3. Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people.
  4. (But what about the naval orange buying people!? Those are a lot like mandarins!)

That is what it is like trying to figure out the common genetic factor and environmental trigger together. When I had a discussion about this with a pediatrician 12 years ago she said to me: “Autism is caused by a genetics. Period.  To consider anything else is ridiculous.”

I sat for a moment and thought about that.  I then I wondered out loud, “Can you tell me another genetic epidemic in history that unfolded like Autism?” Crickets. I’m a pretty moderate parent…however it is no wonder that many parents are suspect of the medical system with that kind of definitive statement when the bottom line is WE DON’T KNOW.

Does it mean my husband and I have Autism? No, not necessarily…but who knows?  If we do carry that genetic material and we combined it….we no more caused the autism than we “caused” their big gorgeous brown eyes or fact that they may need to wear glasses one day. Their eyes could have almost just as easily been blue instead all things considered.   And if environment did play a role and all the Fruity Pebbles I ate during pregnancy kicked those  genes into overdrive as the environmental trigger, there is not a damn thing I can do about that now.

I have never felt the “shame of blame”…and I don’t think any parent should.

We are wired to procreate and continue population.  We can just hope that this kind of information will one day find the link that allows children who suffer in silence or physical or emotional pain to grow to be independent and happy…just like all parents want their kids to do.

Autism Awareness Month. Day 3 2015. C is for Coping

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In the most typical of situations sibling issues exist. For sibs of those with significant impairment, these kids are often the invisible bystanders. Their issues and needs sometimes take backseat to the immediacy and reality of their sibling with Autism needs. We ask them to deal with leaving fun events earlier than they would like, let embarrassing situations roll off their backs and stifle disappointment. The rate of having more than one child with neuro diversity is high. Sometimes, the less impaired child is asked to cope and step up in ways that would challenge even the most typical and mature of children.

Sometimes We Cry

I cried twice today in public.

Once for me and once for him.

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I cried within 3 minutes of arrival, but with dry eyes and with a smile on my matte face. My diaper bag disguised as a monogrammed symbol of excess rather than a symbol of unanswered questions about wipes and formula and a change of clothes for my adolescent. No one can see what is happening behind my eyes, especially if I cannot see the pity behind theirs.

I cried twice today because sometimes the race to suppress overactive tear ducts in a maelstrom of circumstance and emotion is an unfair competition of tortoise and hare. Sometimes I try too hard and one too many drops pools before one accidentally pushes its way past the checkpoint and spills down a cheek. It is quickly wiped away.

I cried twice today as I held up a wall, socially grinning and making silent deals with God to make no one talked to me. Us moms, we were all in the same place…but I was not on the list of volunteers. Even the words I needed to hear would be a sucker punch to the throat and I would then choke on false pretense that transcends somewhere poetic. I don’t know where transcendence lies exactly–there are so many reasons those tears might seem to be faulty to everyone else. So I hold them in as long as I can and my tongue is held hostage leaving me still alone.

I cry and sometimes my child sees it happen and sometimes he does not. It doesn’t matter because he knows my humanness anyway, just like he would if his genetic dice were rolled differently. Today he did not see those drops of glistening emotion and I am no less embarrassed, no less ashamed, no less human for it either.  And neither is he.

My child is an enigma leaving us to figure out what HIS autism means, what HIS cognitive deficits mean, what HIS communication disorder means. I am tasked to teach my child how to move through this world happily, safely. Though we live in similar space as everyone else, he traverses along some alternate dimension often invisible to all the other children so I don’t really know how to do that.  And because of that, sometimes, I cry.

My child’s joy is palpable and my heart levitates outside of my body watching him experience it. He can display the weight of his world, but then laugh at the same time if presented with the right silly face. I am never sure which emotion is primary for him but my own worldview tells me joy prevails because I could never do that. And because of that, sometimes I cry.

My boy wants to be part of the world but sometimes stands motionless with shifty eyes because he knows exactly the problem, which he perceives is him. While I perceive a world that does not know what to do with him. I am certain I am the only one who reinforces that. He worries. He should be worried, because I don’t always know what to do with him either. And sometimes another child sees his light from across the room and without fanfare, crosses over, takes his hand and leads him to the dance floor to be part of the world. And because of that, sometimes I cry.

My boy buoyantly hoots and flaps and has a cognitive itch that somehow seems to be reached by repeating my name over and over and over in the space that should be the calm of our home. Diligent years he sacrificed to learn that what few words he might have are meaningful and understood because we have a limited time to teach the world otherwise. I taught him those things by making sure he always had a response. And in those times caught in an endless loop, he gets one from me, but it might be birthed breech–cord wrapped around its neck-choking and feral and blue in my fallibility. And because of that, sometimes I cry.

I worry one day my boy will read my words and will be hurt or angry or curious or furious and he will demand an explanation and he will walk out of my life because to him these were not words of awareness or advocacy or change. They were the words of HIS life. But that bittersweet day will be the day I will breathe easy with a newly missing piece who can navigate this world alone if he has to. I worry too my boy will be a man…still without the ability for any of that. And in my end, all the sacrificial words spoken on his behalf and judged were not enough to change the world around him leaving him alone.  And because of that, sometimes I cry.

These are the words of OUR life. He and I are both doing the parts we think we are supposed to do no matter how imperfectly executed. Because he is my best boy. Because I am only his mom.

And sometimes We cry.

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

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(originally published 3/2016)

There 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. (2016)

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**Originally posted New Year’s Day 2016. The last 2 years have been harbingers of change, both good and not so good both as special needs families and also as citizens of the US. Every few months, I come up for air to advocate, teach and discuss some uncomfortable truths only to slip quietly under the water again to peacefully watch my children’s lives pass before my eyes.  The future looks a bit bleak for those of us who can see retirement years on the horizon at the exact same time our disabled children “age out” of the system and also our parents are elderly enough to run out whatever savings they might have.  It is too hard to dance freely on the rails without worrying about the oncoming future barreling down like a freight train. Perspective is always an odd thing, especially in retrospect.  I wish all of you the freedom of worry and the ability for mindfulness in the coming year.

 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 Days Its About Me: The Dirty Secret of Taking a Break

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(originally posted 10/2015)

Every few years, I go on a life sabbatical. Life sabbaticals work differently than educational sabbaticals mostly because they are not real. The notion that there are people who receive paid time to disappear somewhere to have a temporary life that doubles as a say-no-more way to avoid other social responsibility is magical. “No, no, I won’t be here to chair that research project, I will be away on sabbatical.”  versus  “Well…you’ll just have to have that IEP meeting for my kid without me, I’ll be on life sabbatical. Have your people call my people” doesn’t quite have the same heady ring to it and might necessitate a call to a mental health professional.

Unlike our neurotypical cohorts, many of us special needs parents are preparing for a forever life. Though we feverishly plan for it, there might not be a high school graduation send off party unless of course that party is sending off what few resource and assistance waivers our children got before they age out of the system. Diapers and tantrums are likely going to get larger. With the passage of time I am already finding myself getting smaller, more tired and more complacent in the frenetic searching, learning and advocating as certain realities set in. This is troubling.

Apathy is the ugly stepsister of passion. While passion will gladly cut off a chunk of heel to make her foot fit into that glass slipper in hopes of a prince, apathy will do so because its easier to make do than to shop for something to wear to the ball.

Endless details and inconveniences are just part of daily life in parenting regardless of circumstance. Its like the service charge for the privilege of parenthood and an occasional break from that is necessary for even the strongest of mommy constitutions. However, there are those of us who are so steeped in the present at all times where there are rarely idle moments not spent trouble shooting, even in the middle of night as we play musical beds and double-check doors. So I am mindful in the moment and I am mindful in that moment contemplated 30 years from now. The whispers of all the things that will come in between need to shut the hell up because I simply have no room at the inn left to consider those things.

As caregivers we are told to take care of ourselves, take time off, do what we love. This seems like cheap advice and when heeded I am reminded that ultimately not much is different on my return. The airline may have lost my tagged luggage of anxiety  while I was away, but it is surely taking a circular ride on the carousel at gate 6 when I arrive home. Time away takes me to places from my past. A time when existential angst was poetic, selfishness was better defined as a deep level of internal awareness and laziness was a sleep credit I could one day consider cashing in. The dichotomy for the surrendered love for your child and also wondering what it would be like if your heart didn’t bleed through your blouse every day is a quiet and unreasonable Sophie’s Choice. Sometimes its just easier not to be a tourist in your alternate universe.

In my life sabbatical, I am lucky to be able to spend a few days away from my forever life with soul companions from my past who live in sleepy mountain towns in New England. Their lives are so vastly removed and different from mine, yet anchor me to a world where I once lived. Lingering, casual vegan meals out where my fork is already unwrapped and folded into a crimson origami pocket on the table. Conversations are still tangential but are about politics, performance art and anecdotes of escapades in places like Nice and Machu Picchu. I meet new people—interesting people who talk about ideas and experience rather than people or events. Though these conversations have evolved over the years and now include points about how difficult camping at high altitudes can be with stiff morning joints and schlepping a c-pap machine, I am transported into a life of things that were once very important to me. Supportive friendships not sullied in the day-to-day. I can have amnesia and even forget that words such as “occupational therapist’ and ‘trash day’ and ‘bus bully’ ever slowly seeped into my repertoire of significant and meaningful topics of interest.

While recently on one of these life sabbaticals, serendipity appeared in a cameo.  In an unexpected and out of my control change in travel plans, I had the opportunity to attend a reading of a famous contemporary writer with cult-like status. His prolific works speak to anyone who has ever had a family or even just been alive despite the level of quirk and shock and neurosis woven through his stories. There is a distended familiarity in his writing and when he lends his voice to the story telling it feels like you were reading the original works in the wrong dialect of a foreign language you learned in high school. That epiphany of disappointment of what was missed in the original reading is quickly tempered by excitement to re-read in the voice and inflection intended.  Book signings are often part of these events and this writer is certain to ask each fan a question and attempt to tailor a sentiment attached to how he feels about them in the moment. And he can be honest. And brutal. And weird. And sometimes all. But regardless of what is written, it is enough to brandish your signed copy around to show everyone how he thinks you smell like coins. He is a story-teller and I believe he likes to stoke fires and create the story to be told even when he isn’t directly the voice.

While he briefly engaged my theater dates for the evening, I already had a question posited regarding his physical writing process. I thought if I asked him something preemptively I could kill our allotted time without ruining my self-esteem. “You wrote for such a long time pre-PC. Was it difficult to make the transition from handwriting your ideas to typing them out? ”  He answered and asked why I was asking. I guess I should have realized that was possible as a visitor in my sabbatical of the impossible.

“I used to write a long time ago. And then I didn’t. And now I am trying again but now there are computers and expectations. And its hard.”  I started reaching for my book he had not yet finished signing, but he continued.

“What do you write?” Oh crap. I looked at my anchor friend who was smiling at me and nodding and guessing he must not have seen the poor young woman ahead of us get eviscerated over her cheap perfume. “Its just a blog”. He reached back to put something on the floor behind him and continued.  “What do you write about?” He still wasn’t done signing my book otherwise I would have grabbed and ran…..the door was still ajar.

“My kids. There are…disabilities.”

“What kind of disabilities?” he asks without pause (door squeaks open a bit more).

I run down a quick and dirty list. He then paused and thoughtfully balanced the Sharpie between his thumb and index finger while resting his chin in the palm of his hand.  “Autism, yeah. My (distant relative) has (another relative) with autism. I fucking hate him. I HATE that kid so much.”

And there it was. Door now wide open. Mouths of theater dates wide open.

Hole in my heart wide open.

I ruffled.  “What is it you hate about him so much?”
“He doesn’t play with toys. They buy him toys but he doesn’t play them. He makes a mess of everything, destroys everything. Their whole world revolves around him and its ruined their life. I fucking hate him.”

In that moment I tried to decide if he was:
A).  a creative genius and there is nothing like making people uncomfortable or angry to get to hear some real truths.
B).  a complete asshole amusing himself and disguised as a creative genius and gets people to talk about him no matter what
C). Has absolutely no filter and has potentially is on the spectrum himself. Which would make sense if you have ever read any of his stories. This one is familiar to me. And also likely the thing he purportedly hates about said distant relative.

Regardless, I had to respond.

“Well, I don’t hate my child, but  there are times I hate autism. Sometimes it feels like it is ruining my life. I want to be done still getting poop under my nails but my 10-year-old is in diapers…. I guess I see it this way. No matter how hard so many days can be there is one thing that I am sure. It must be way, way harder for him, harder than it can ever be for me . And that makes me sad for sometimes feeling the way I do.”

We stared at each other for a time that was a few seconds longer than comfortable.

“ I don’t think I would have thought of that perspective” he said. And he then finished signing my book. As he handed it to me and I turned to leave he said “Wait. Whats the name of your blog?”

After I got over the “I’m really angry and I don’t care if this is a schtick for ideas or even if he has autism himself”  I grappled with “THIS FAMOUS WRITER MIGHT READ MY BLOG!” HE’S GOING TO HATE IT!” (#humblebrag)  I spat out Running Through Water.

“I like that. It really captures what that’s like doesn’t it?” he said as I wondered if I just made him more uncomfortable than he made me.  “Yes” I told him “both on the good days and the bad ones. Sometimes you are exhausted and get nowhere …..and sometimes it makes you weightless.”

I peeked at my book where he had put two fish stickers over the writing errors he had made to both cover up his mistake and also call great attention to the fact he made them in the first place.

You make me want to live again” he wrote.

Frankly I don’t even know what it means, but my story is right here Mr. Writer and you got me to tell it.  My writing is far less than anything I would ever want it to be, but it lay dormant for 25 years. My muse comes in the form of a cherub faced innocent who makes my soul light brighter than I could ever imagine.  He doesn’t ever get a life sabbatical.  Life sabbatical is a sham.  I love my children  but I hate my fears for them. Time away makes me miss my old life but it also makes me know if not for my experiences now I would not know that there was something to miss.  And I suppose its ok to allow those ideas to coexist as past and present collide and am reminded of poetry from my old life that I just didn’t believe:

“When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.  When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” (Khalil Gibran)
Every day is an opportunity to live again with new perspectives our old selves could not have imagined.

The Most Important Thing for Doctors To Know About Autism

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Anyone have a ________who works well with special needs kids?

                                   —every special needs parent on every local special needs Facebook page

Last year was the first time in A2’s entire life he got through a dentist appointment relatively unscathed.  Sure, at first he flapped and screamed and excreted that sweat stench he does as if he is a sea slug attempting to keep predators away, but ultimately Dr. Nate (not his real name)prevailed with him in the most awesome way.  A2 received the first x-rays of his entire life, full dental exam featuring the scrap-y, spinn-y and spitt-y things and actually left the office smiling.

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No one can resist the appeal of Dr. Nate *powders nose and reapplies lipstick*

That is the thing with ALL kids on the spectrum.  Once you crack the code on how to navigate around or through the anxiety, things tend to go a bit better.

Conversely, the same is true.  Once you REAAALLLY approach something wrong, the damage is done and it is going to take a hell of a lot to bounce back from armageddon levels of panic.

Apparently, Dr. Nate and his swoon-worthy dental practices on my autistic kid made more of an impression on me than we did on him because he didn’t remember his approach from a year ago. At our visit today, A2 was visibly panicking/attempting to act cool and Dr. Nate was taking a more gentle and cautious approach.  In a red carpet level performance, I loudly proclaimed I was going to the bathroom (office visits tend to go better when I am out of eye shot). Without skipping a beat, Dr. Nate said “Sounds good. I’m going to take a look here at A2’s teeth, but you’ll be right back…So…everything is OK.”

Dr. Nate…You know what to say to all the ladies….

Of course, I was standing right outside of the exam room door and I could hear him firmly reassuring my kiddo. I peeked in to see A2 standing in the corner with a toothbrush and the toothpaste from home and the dentist mopping up his face with gauze. When all was said and done, Dr. Nate said to me, “Can you come back in three months?  I think one lesson we learned is it’s best for mom to wait outside. I think next time, I will use a firmer, more direct approach, It seems to work best with A2.”

I thanked him profusely for his insight and patience. He replied “Every kid responds to something different and sometimes even from visit to visit.”

BAM.

Every kid responds to something different.  Even from visit to visit.

Yes, Dr. Nate.  You just summarized precisely how to to work with autistic patients. They are all individuals with individual needs and you must be aware of this at every visit.  And then you meet them where the are.

Pretty much just like everyone else.

While we are at it….a shout out to all the other doctors in our lives who got it too:

To the orthotist who met us in the back of our van for years in order to cast A2’s feet for braces

To the physical medicine doctor who immediately started using sign language while she talked to A2 when she realized he might not understand her words

To the hospital nurse who spoke directly to A2 to ask him his name, age and where he went to school instead of asking me right in front of him.

Medical anxiety is a serious issue for many autistic individuals. The sensory assault, the inability to clearly communicate and the fear of not understanding what comes next can be overwhelming to both the patient and caregiver.  We recently had a specialist appointment where A2 was tearful and fearful.  It was suggested we could move forward with the visit in one of two ways. 1. I could hold my 12 year old down by myself in my lap or 2. the doctor and two office staff could bum rush him and they could hold him down on the floor.

I wondered out loud what it would be like if while we were standing there talking and  out of nowhere two men twice my size came around the corner and held me down while a third approached me and I wasn’t sure what he was going to do. Boy oh boy….if I wasn’t worried about talking in the hall before, I sure would be from here on out!!

It may seem odd to many of us that a doctor’s office would not be equipped to handle their growing clientele of autistic patients, but really, physicians have a limited amount of time to spend with their patients and many of them have absolutely no specific training in disability. As parents, we take it upon ourselves to make certain we take all the precautions with all the details and do all the educating so an office visit goes as smoothly as possible.

Doctors. Take your lead from Dr. Nate. His approach holds the key to your best success with every one of your patients. Remember they are human, figure out what they need on any given day and then do THAT.  Us moms will take care of the rest…..

 

Autism and A Gun By Any Other Name

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 been known to blow some zombie pirates away gleefully at Chuck E. Cheese, but those are not even guns.

I reached for him to comfort.  He pulled away and continued to plead “no!”

A2’s language disorder renders him without the ability to elaborate and his anxiety rendered him without the ability to say much of anything as he stifled tears. I was perplexed.

The next time I saw his Intervention Specialist, I asked her how they handle lock down at school since I grew up when there were only tornado or fire drills. I literally have no concept of what they do.  She informed me they tell the kids it is in case there is someone in the school who should not be.  No mentions of guns or lack of personal safety, she assured me.

Fast forward one month.

While visiting my mother out of town, A2 was playing in the bathtub when suddenly he became very quiet.  After staring off for a few moments, he pointed and gasped ” No. Shoot. No. Boom!” I tried to follow his gaze, when I saw this….

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What in the world is “No shoot boom?!”

Apparently, the item of concern was the bottom of an electric toothbrush and he would not get out of the tub until I removed it from the bathroom.

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Upon further inspection

My child who has no experience with violence or guns knows what a gun barrel pointing in his direction looks like. He knows he should be afraid. And he clearly was now on two very different occasions. 

 I HAVE NO IDEA WHY.

He is never, ever alone with an adult we don’t know well, generally not even family. His aides are almost always supervised.

There is only one place it is possible. This meant we would have to question the people at the place he spends the most time and we are to have the most trust.  The ONLY place where he has potential to be alone with adults without us.

How in the world does one even go about doing that without placing the teachers, therapists and paraprofessionals in a position of not only defensiveness, but of questioning your motives or your sanity as a parent. A2 went 11 years with no mention of guns let alone a knowledge and fear of them. We had no other option than to ask because we don’t have the option of taking anything for granted in our world.

What is the worst case scenario you can imagine for your own child? 

Those of us with anxious personalities can come up with a bevy of outrageous ideas when it comes to our child’s safety.  However, let me assure you, when you have a child who cannot tell you anything while paired with the knowledge they will likely outlive you, you don’t have to have to be Type A, neurotic,  high-maintenance, helicopter or any other of the words that may be assigned to you behind a closed lounge door by people who don’t truly understand the fears of every single parent of a child with a disability.  We send our kids out into the world as a leap of faith in their teachers, therapists and caregivers.  And we also have no choice but to accept whatever the answers are when they have nothing solid to give us in moments like this.

I have worried about many things throughout A2’s life, but gun violence/gun safety has been super low on the list of worries that keep me up at night. (Let that one sink in for a minute….).  Almost more so than my frenzied concern over where A2 might have gained this new-found awareness was my sadness in knowing something stole a level of innocence from his blissful naivite about how the world works.  We don’t have difficult discussions in the way my friends do with their children when they show up wide-eyed and fearful about confusing and upsetting events of the world around us. So many things that we as adults keep our fingers crossed behind our backs as we reassure them they are safe, hoping with all our souls we are right.  I have assumed because A2 has not seen hurricane devastation up close and personal, cannot conceptualize a mushroom cloud and has never seen an automatic weapon mow down 500 people while enjoying themselves at a concert that he does not contemplate or worry about his own safety in these ways.  That the things that fill his iPad with cartoon characters and songs about fruit salad are all he should worry about. Man alive…I am pretty sure I was wrong.  Maybe the belief this is true is to protect my psyche, not his.

I have to take my best guesses as far as what my child does and doesn’t understand about the world. I also have to take my best guesses as to how he is affected by those things. It’s not wrong for me to shelter my tween from guns. For us, there is no meaningful teaching of gun safety or exposure that doesn’t end in a loop of doing it wrong somehow. The stern warning of “STOP! DON’T TOUCH! LEAVE THE AREA! GET AN ADULT!” is a useless four-step command since my child can only follow a two-step with any regularity.  He certainly doesn’t have the fine motor skills to learn the power and healthy respect a gun commands under adult supervision at the shooting range.

So according to the professionals, my non-dangerously-mentally-ill kid (who does not have an aggressive or hateful bone in his body) who can technically have a gun just like everyone else when he is 18, can’t be taught how to handle it carefully, how to shoot it or when to use it, yet I am to expose him to firearms in a way that won’t frighten him and also so he knows they are not toys and won’t pick them up. I would very much like the manual on how to do that.

There are 300 million guns in the US.  It sounds like my child has seen one of them in a way that caused him a great deal of upset and anxiety and how that happened will likely always remain a mystery.  We have dulled our senses and turned down the volume on what we are willing to accept as normal here. And this uncomfortable truth will eventually spill over onto my beautiful boy who can never tell me what happened.

 

 

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.

 

 

And Then He Was Gone

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My boy went missing yesterday. He went missing near water. Don’t worry.  There is a happy-ish ending.

I keep reading about the ““sweet spot” of parenting in summer.  This is the phenomenon where after years of hyperigilance, parents can relax at the pool because the $3000 in swim lessons have finally paid off.  You are now officially the chauffeur and the loan officer but no longer also the lifeguard and babysitter. Your kids have the buddy system at the local pool just by showing up to same aged classmates and are released free from the bonds of water wings and demands barked from mom suits.  The first summer a mom experiences this, she is ecstatic. I know this because I’ve spotted an alarming amount of women openly reading Fifty Shades of Gray in their lounge chairs.  Maybe there is a twinge of wistful “last time”, but ultimately their palpable sigh of relief to just relax next to the pool overrides preemptive nostalgia.

I’m not here to wax poetic about the woes of the special needs parent at the pool because I have already done that and also because we too have a sweet spot….it’s just different and likely the bruised part of the banana people normally cut off.  If I could cut that brown spot off I would for some things. Things like yesterday…..

We have a pass to our local water park. A2 likes spending the majority of his time in the young children’s area full of manageable water slides, spinning water wheels, hoses and a non-slip structure featuring a giant bucket on top which slowly fills up every 10 minutes and dumps gallons of water on the crowd gathering below in anticipation. A2 doesn’t mind water in his face and the bright colors and sounds–the constant movement and slow drips of water are the things of joy for him.  I hate Monkey Junction.  I navigate it alone, pudgy and pasty. The water is 25 degrees colder than it is in the wave pool and in order to stay close to my kid, I have to follow him through the maze of spitting water getting me wet and cold enough to use guided imagery to disassociate myself from my sensory differences. A2 is now 12 and still cannot swim which works out fine at Monkey Junction with its ankle deep water. I have attempted to entice him to follow the structure up to the far more exciting curly slide where kids closer to his age might be. This is still met with the same screech and Houdini-like limb disjointing to remove himself back to the same 4 places he prefers to stand and flap as he has every year before now.

This year, I realized his predictability was my sweet spot. Yes, I participated in his happy, flappy, water drinking glory and slid down short slides with cloudy and disturbingly salty/sweet water at the bottom.  But I also let him have that time to do his thing without me trying to redirect him.  I plopped down in a super-short lounge chair situated 20 feet away from his predictably favorite places and this year…..I dared to open a professional journal.  Ahhhhh…..the sweet spot for me. Read two sentences, see where A2 is….read two more….yep…same place….. “Ok, just like everything else…we have a modified sweet spot and here I am living the dream!” I thought to myself.

About 5 minutes into this, I looked up to see A2 was standing at the bottom of the baby slide flapping away to toddlers making tiny splashes against the yellow curved plastic.  A crowd was gathering under the giant bucket….the next stop in the pattern of stimmy afternoon fun. I almost felt smug. Moments later, the bucket dropped which is normally my cue to go and join A2 and shriek in excitement with him.

Only he wasn’t there.

HE WASN’T THERE.

At first, I shielded my eyes in the late day sun.  Stinker.  He changed his pattern.  I looked to the 3 other places.

HE WASN’T THERE.

Why had I never noticed the deeper pool near the equipment before?  I have an overactive amygdala (that place in your brain responsible for fight or flight). My movements can appear more dramatic than I actually feel but my monkey and human brains caught up to one another pretty quickly.

HE WAS NOWHERE.

I breathlessly approached one of the lifeguards minding the 4th level of purgatory of Monkey Junction.  “My child….he’s missing.” I spat. “He’s wearing a white swim shirt and black and neon green shorts.”

“Ok, I’ll let you know if I see him.” he said without making eye contact, though admittedly he was wearing sunglasses and was standing over a slightly less blue pool of water of toddlers. “How tall is he?”

I made the imaginary yard stick hit my shoulder on my five-foot frame. “Here.” It then occurred to me my level of concern was not commensurate with the number of feet off the ground my hand was. I looked like a histrionic helicopter parent.  And then the overwhelm of panic smacked me in the face.  “…He’s 12 but he is autistic and can’t communicate with people he doesn’t know…he’s non-verbal!”,  neither of which are completely accurate.

How do you describe a 12-year-old’s safety concerns and the immediate nature of those concerns?

“Ok” he said again and went back to twirling his whistle.

I went to all the other lifeguards. One told me to calm down, they would take care of it.

“HOW?  TELL ME THE PROTOCOL FOR STOPPING PEOPLE FROM LEAVING THE PARK WITH A CHILD WHO IS NOT THEIRS?!  WHO DID YOU CALL?  THIS ISN’T GOOD ENOUGH! YOU CAN’T TELL BY LOOKING AT HIM! ”

Should I have not said he was 12?  Should I have directed what they needed to do? Was a full 30 seconds much too long to look away from an ankle-deep pool of water guarded by four teenagers?

I was now a lost child. Pacing in my worst nightmare, rendered with ineffectual words. Is this how A2 feels all the time? Desperately trying to communicate the weight of the world to stone faced dolts who completely miss the nuance of the message?

I ran from mother to mother begging for extra eyes in the way only a mother sees.  I was too afraid to run onto the structure for fear he would walk out past me unnoticed. One mother ran around the structure all the way to the top out of view, where she found A2 hooting and clapping to the older children releasing themselves down that same curly slide he refused to even approach the gangplank with the safety of an adult.

He clearly was not distressed as he left the play structure with her as she brought him to me….yet more evidence of my rightful concern. He would have left the play area with Jack the Ripper if he was asked nicely.  He rates highly on instructional control measures at school.  We have trained him to be compliant. No matter what.  I have never felt so nauseated and so relieved all at the same time.

Initially, when I sat down to tell this story it was with the intent on providing information on what to do if your child goes missing.  But 1200 words later it really felt more like I wanted to just tell this story of my fallibility.  I have not lost my child in 12 years…..but I did so for 5 horrifying minutes because I chose to look down for 30 seconds. Turns out the “sweet spot” is not something parents of certain kids get to have in the way other parents do…not even a modified version.  Because those moments taken for granted might also be moments of growth. Moments of increased independence and bravery in a sneak attack of pride and relief and fear.  I missed witnessing his milestone.

There is no playbook for this autism thing.

**Disclaimer: Security showed up just in time for me to tell them that the crack team of lifeguards did not find him, but a patron.  While they obviously did the right thing and got security involved, the utter lack of urgency and communication was the issue.  I am formally alerting the park to this concern. Alls well. Nothing to actually see here folks…

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