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

Autism Awareness Month 2015: A is for Aides

Day 1

A is for Aides.

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

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.

Day 2 2016: B is for Behavior

Autism Awareness Month A-Z original 2016
B is for Behavior

Running through Water

IMG_2885B is for Behavior

All behavior serves one of 4 functions.  To gain attention, to escape a situation, to gain access to something (usually tangible) or a response to an internal stimuli such as hunger, illness or exhaustion.  Seriously.  Just 4 reasons anyone does anything.  Think about it…you won’t come up with a 5th..I have tried.  Of course, if it were that simple we would all live in harmony.  However, there are some times it gets tricky.  For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify.  So if a child with autism likes to clap his hands near his ears is it because he likes the sound?  Or is it because he likes how his hands feel when he claps them together?  Or is it because it creates a little wind near his face which he likes?  To make matters even more…

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Day 1. A is for Aides

Autism Awareness Month A-Z 2015
A is for Aides

Running through Water

Day 1

A is for Aides.

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A1 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young…and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

View original post

Dreams are Poetry for My Son Without Words

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What do you dream about sweet silent boy? 

The nights you rise up out of your bed and wander our dusty floors?  Are you looking for something you cherished for a moment in that mysterious place between the consciousness of dream and the awareness of waking?

Are you on an enchanted night walk floating through a maze of fireflies and bubbles unaware of the world that holds you back?

Could you be lost navigating the spooky hallway forest, familiar and friendly when the path is lit by the morning sun?

What do you dream about sweet boy?

Those nights your shriek summons me like the siren’s song to find you swimming in your twisted sheets?  My soft words are not your anchor.  You push me away from the helm with your kicks and punches as if resisting being dragged to the bottom of the sea by the mighty whale you have have come to exact revenge.

How do I teach you to breathe when you emerge from the black water instead of screaming?

You wake gasping for air.

What do you dream about sweet boy?

When you sit bolt upright rubbing the glitter of sleep deeper into your eyes with the fists that once fit in the palm of my hand?  You rise with a dreamy smile that does not release either of us until you snuggle in as close as you can. It is how you summon the halcyon to create the calm winds that smooth the waves.

You drift safely on your back.

Do you know you dream sweet boy?

Can you separate day from night? Do your lost words in the light morph into the demons in the dark who suck the words from your cherub lips?

Do nocturnal fantastic birds of flight carry you away and release you from your forced secrets of the day?  Are those birds the thing with feathers?  Do they chirp the same songs they sing to me?

Do you not dream at all sweet boy?  

Perhaps instead you play with angels who speak your native tongue.  You drift off to the place where I am not allowed to go with you. You run freely through the fields of joyous detail or you ramble in teary despair in the wings of the worldless knowing you are understood and safe.

Because no matter the circumstance of night, in the morning  you wake wide eyed and blinking and peaceful.

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Day 4 2016: D is for Diagnosis

Autism Awareness Month: Y is for Youth

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(originally published April 2015)

The sticky wicket of Autism. There are some moments I feel particularly lucky for autism. Those moments I watch slip away from my friends who’s babes with bountiful curls framing cherub faces ask for the straightening iron ……who have their gossamer wings clipped to keep their feet firmly planted on the ground….who no longer rub the wonder of dreams deeper into their eyes when they are sleepy. I would imagine it’s the bittersweet joy of having children, watching the transformation from innocent angels to inhabitants of earth. I get to cavort with an angel for longer. I still get to hear a gasp followed by “look mommy…moon!”  I still get warm snuggly visits at 3AM. Bubbles are still magical. Raffi is still the only fully grown man who can sing wheels on the bus and get a rousing sing a long at our breakfast table. A2 can still do interpretive dance in the aisle at the synagogue during prayer while onlookers smile and nod as if it is part of the service. But it’s not for much longer. As those other children blossom from midlings to Ivy League applicants, A2 will likely still ask for The Muppets or try to squeeze himself onto a tricycle or squeal “go faster daddy!” as he coasts down a hill on a tandem bike….the promise of youth in the body of an adult where looks from strangers will fade from smiles when asked “what’s your name”.  It’s not natural to pray you outlive your child, but we both agree as long as there are songs to be sung, dances to be danced and bubbles to blown we will move with him and try to always see the wonder of his world.

Autism Awareness Month. X is for X-Ray.

Day 24

Sensory differences are a common symptom of autism. Often kids on the spectrum can become overwhelmed by these differences. A1 tells me that a public toilet flushing sounds like a bomb going off and for several years he avoided public restrooms. A2 flaps his arms and locks out his knees whenever he is filled with anxiety. Kind of his virtual rocking chair….or else he is just hoping to fly away from the dentist/barking dog/hand dryer. As autism-folk we try to build awareness by creating overwhelming scenarios to get NTs (neurotypicals–yes, we have a name for you) to sympathize the plight of the kid flicking his fingers in front of his face as a way to stop having his eyes taking a million pictures at once or the kid who is pacing because he can’t tell where his body is in space. But sometimes, I am fairly certain that some of those sensory integration differences are not experienced in a negative way and sometimes there are common things that just look, sound or feel like something not of this world. If I could only take an x-ray of A2s little mind and see what he could for 10 seconds. (Feel free to smile at this picture….)

Autism Awareness Month. V is for Village

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Because we are so immersed in this world of autism I have erroneously concluded that everyone who lives outside of this Village is already aware of autism. However, there is a secret sorority that exists…one equipped with a secret handshake and password. I am in that sorority yet have no recollection of agreeing to join. Autism is funny like that. The Village of Autism parents is a unique one. We are a motley crew of individuals whose path may have never crossed otherwise. We meet each other in waiting rooms and lobbies of doctors offices instead of in the PTO. We have closed blogs and Facebook pages instead of casual phone calls. We learn more about the newest treatments and resources from each other than we do from professionals. We talk about how well our child is pooping quicker than we will discuss how well they are doing in school. Though we are typically the least able to, we are often the first responders to others in the Village because we are more likely to reach out to one another than we would outside of the Village where no one speaks our language. And we find each other….everywhere and all the time. Today while sitting on the floor in the middle of the children’s shoe department feverishly tearing inserts out of shoes and hopelessly attemping to shove A2’s newest orthotics into them with no success I broke down and cried. Just sat there in the middle of the floor, surrounded by ridiculous shoes with flashing lights on the soles and sobbed like a toddler might who couldn’t find the shoes she liked. At that same time, I peered up to see a woman pushing a cart with one hand while calmly using her other to push her much-too-large child who was humming loudly down back into his seat. We made eye contact for a single moment and silently nodded–her nod seemingly said “Yes….I know those orthotics were made wrong twice before in 7 months and represents 6 visits to the clinic over that same time. Yes…..I realize this is the 3rd store you have been in today that absolutely does not carry shoes your 9 year old can wear with the braces he must wear on his feet. Yes….I realize that your tears are really about your kid and the pain and blisters he will probably have again that he can’t communicate or the weird, white 1960s Frankenbaby shoes the orthotics company will recommend that look nothing like what his school friends will be wearing. Yes….I see you….and I know you see me….” V is for my Village. The quiet, connected Village where my family lives.

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