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

A is for Aides :2020 Autism Acceptance Month

10 years. 23 women. One little boy.

For the last decade, A2 ages while his aides do not. Time stands still as they enter our lives at 20 and exit at 22 again and again and again. All the while, A2 ‘s clock continues to tick away putting him closer in age to the next new soon-to-be-best-friend to come on board. He is still little and adorable and fun loving, but a teenager nevertheless. A teenager with care needs that are still very much in line with what they were when our very first 20 year old walked through the front door.

Each year that passes, A2 is more acutely aware and uncomfortable with this fact on a few levels, which in turn makes me uncomfortable with the skeleton crew of potential candidates I must independently identify, recruit, interview and hire folks with little to no experience with Autism. Every year I wonder if I should just provide all of his care and community support myself. I have been faced with this challenge for a year here and there at a time while also trying to find balance with my work schedule. In the long run, that is actually far less stressful and overwhelming (albeit, unpaid) than the Groundhog Day treadmill year after year of the anxiety of locating the right person,the training, the supervision, the getting over the behavioral hump, the getting used to having a stranger in our home and trusting they keep our personal life confidential/my child safe-always and no matter what, and the anticipation over A2 ‘s grief and lack of ability to process that with us when they leave our world.

And then I remember.

I remember the laughter and energy and patience for a boy who deserves nothing less on days when my own dark places pull those things under the blanket with me.

I remember new words and habits and skills that I know I didn’t teach.

I remember roller coaster riding and sledding and jumping into cold pools-things I wouldn’t dream of trying with him (or without him, actually)

I remember relief watching a young A1 be welcomed in to play, given the same attention and love by those who saw that he was here too and just as worthy of the special time his brother deserved, even though no one specifically told them to do so.

I remember birthday presents, phone calls and gifts, just because. I remember off the clock offers of babysitting just to give me and Mr. ATeam a date after not having one for over a year.

I remember A2’s uncanny ability to sense the unspoken leave-at-the-door moments that would go past my radar until I saw his care and loving behaviors.

I remember the phone calls from new professionals telling me about a challenge they faced in their new career they knew how to handle from what they learned working with us

I remember my beautiful boy has no people who know his life inside and out, backward and forward other than me and his dad. With exception of the select few who come here to work under a supervisor who often forgets to show a soft side or appreciation and yet they choose to stay here for a year or longer.

I find I am just as appreciative of this village we create year after year as I was in 2015. It looks different today. I am more tired, less patient with the learning curve and more concerned about the days and years ahead since I now have the wisdom of just how fleeting they are as we barrel toward the thing-that-keeps-me-up-at-night. However, I have had the opportunity to see the future of these college co-eds who come in and out of our life in the blink of an eye. I know special education teachers, speech and language pathologists, occupational therapists, RNs, Psychologists, Social Workers, Disability Advocates, Trauma specialists, Physicians. I see mothers and wives. I see women who seamlessly moved to their next stage in life from A2 better equipped to understand what Autism looks like from the inside and hope it has helped fast track their perspectives as helpers

I sure know that if that is true, A2’s purpose is far greater than I could have ever imagined and I just know if he understands that, it would only contribute to the joy he has for the things we all take for granted.

A is for Aides: 2015 Autism Awareness Month

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.

A is for Aides: 2020 Autism Acceptance Month

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.