a riddle wrapped in 5 sheets, inside an enigma...and why voting matters

The post I've spent all week writing vanished, just like that.  Not a very user-friendly blog, as those of you who have tried to post comments have found. (the best advice I can give is to go on the full site, and post there. And thanks for trying.)  Very frustrating since I spent so many hours on it and finally it was all done and I pressed publish, which always feels good, and then it disappeared.  So I am going to do a  rewrite which may not be nearly as good but I want to get it out as it was so timely and time keeps passing very quickly, or maybe it's just change that is happening and time is its usual slow dance.

This past week I got caught up in pre-Election Day anxiety and obsession, what I used to describe to B as Mom's World Series - the thrill of cheering on your team and favorite players, the knots in the stomach as the score changes, the vast disappointment when star players are taken off the field, especially, like in Georgia, where the state team plays dirty.  Even this midterm election, or maybe especially the midterms, which have been touted as "the most important election of our lives."  Maybe a bit of hyperbole but it did send millions of new or formerly jaded or disinterested voters out in force. And it did end in the Democrats taking the house and a number of states, with  many players you rarely see on the field: so many women, and Native Americans and lesbians and a gay Governor, people who should have been out there long ago in force but the fact that they finally are, well, it's thrilling and hopeful and it's something to feel good about, so maybe it was the most important election in terms of better representation and a middle finger to our unstable mendacious leader.

I've had a few discussions with one of V's home therapists who thinks voting is a waste of time and energy because it's all about the money, and there's so much corruption, and candidates make promises they won't keep, and racism  underlies the defeat of those two really strong gubernatorial candidates I was so invested in, and yes yes yes yes I  agree with her on all of that and yet. Voting matters. I  have ingrained in me since birth what a civic duty it is, from my mom who worked the polls every year, and her father who said he celebrated the day he came to this country but not his birthday because anyone could be born but how many people have the courage or chance to leave their home country and everything they know for this new land of freedom?  Voting is a hard earned privilege, we often forget, we who have lived with its certainty our entire lives.

And voting matters in a way that we often fail to see, as our representatives approve and allocate funds for tunnels and bridges and train tracks and schools and farms and every other type of infrastructure or way we take care of people or land or municipalities. Even government-hating conservative seniors happily collect their Social Security and thank the stars for their Medicare. 
And the home therapist I argue with, and all of the rest of V's team - the teachers and aides and case manager and OT and speech therapist and job training coach at school - every single member is brought to us courtesy of state, federal and local agencies
. 
For those of us with loved ones who need extra supports and services in order to live and thrive, we see firsthand every day how voting matters, that the quality of their lives and ours in turn is deeply connected to the people we elect to represent us and their interpretation of what government is for.  In better times, when people believed in the social compact - that we are bound to help each other, not as charity or a hand out but because by no fault of their own people have a range of conditions and challenges that require extra help and it is our duty, a contract we have with each other, to make sure that everyone has a safe place to live and the medical care they require and the social services to turn their lives around. At some point we will all be in need.  This is something we have had the good fortune, if you can call it that, to recognize since V's diagnosis exactly 15 years ago this week.

At our most recent meeting on the eve of  Election Day (before I spent the night glued to the screen like it was the Superbowl and World Cup combined) V's school and home team all got together to discuss the latest "riddle wrapped in a mystery inside an enigma" (a quote about Russia by Winston Churchill, who was kind of the anti-Trump when it came to eloquence) of taking the fitted sheets off his bed every night, grabbing comforters and flat sheets whenever he could get into the linen shelf  and wrapping himself in them like a burrito, and then putting on layers and layers of clothes every morning. a few t shirts topped with a hoodie and fleece and jacket, occasionally two pair of jeans, as much clothes as he could fit on his lanky frame.

I've taken to hiding all our outerwear in a locked closet so he isn't tempted.  I think of the story of the man who got kicked of a British Airways flight earlier this year because he was wearing 10 layers of clothes and think if we ever get V back on a plane he can wear a week's work of outfits and save us a baggage fee too (they'd be less likely to notice on a skinny hyperactive guy like V,  as most strangers fixate on his offbeat behavior more than anything else, like his good looks and charm and humor.)

The team discuss the possible causes for this layering. Is it sensory-seeking, and needing deep pressure? Is it his way of expressing his independence and agency? With so many people telling him what to do all the time, here's a way to assert himself. Or is it a matter of perseverating (repeating something insistently) - of still developing executive functioning skills that make it difficult to stop once he starts putting on clothes?  A really interesting conversation and I'm grateful to have us all in the same room, but it doesn't make it any easier to live with. Because at the end of the hour they'll all go home and we are left trying to solve these mysteries. alone with our struggles and the consequent social isolation when he gets so entrenched in behaviors that our interventions are ineffectual and so we stay inside with our layers and mysteries, feeding our exhaustion with coffee and toast and homemade soup and television and reading endless stories about  violence and vitriol in the news.

The stress of a mother raising a teen or young adult with autism is equal to that of a combat soldier. I know I've quoted this research before, but it becomes more evident with every year.  Mothers of teens with autism spend more than two hours more a day on caregiving, are interrupted at work three times as often, are more apt to be exhausted (as opposed to just tired), are far more likely to have financial stress and physical and mental strain, all of which is lessened or compounded based on how much needed help is available.  For those of us who care for someone with constant complex needs - a parent or partner or other loved one as well as a child -  it is absurd and outrageous that anyone would consider government assistance as a hand out that would make us lazy or complacent. In fact the threat that pre-existing conditions might at some point not be covered by insurance puts us even more on edge.  Those of us relying on Medicaid or Medicare or other supports to supplement our expenses cross party lines and attitudes. We are Republicans and Democrats; black, brown and white; low income and middle class; cynical or indifferent or deeply invested in voting.  Regardless of our differences, who we elect to represent us matters to us all. 

Yesterday we went out for a walk, V in four layers on top, only one pair of pants thankfully, although they were on inside out (that tends to happen now that he dresses himself). No one knew what it took to get him out the door, but then, we don't know what challenges anyone else faces, how difficult or grueling it might be just to get out of bed, let alone get dressed and eat.  You don't know what anyone else faces in the course of a day. But you can vote to support them no matter what. It could happen to you. It probably will.  Let's help each other out: out of the house, out into the world, out where we can feel the sun and find some happiness wherever and however we can.