Why I May Have to Abandon the Best Coping Skill I Have Ever Had

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My heart is sitting in a basket on my desk next to my computer.  I stare at it wondering if I should leave it where it is or if I should shove it back in my throat where apparently it now belongs.  I  am faced with a dilemma I have fleetingly looked in the eye before but this time I pause much longer as if memorizing the outline of the face of a loved one I may not see again.

I love Facebook. I am like a Pavlovian dog when I hear that DING! and will switch over from work to see whats going on my feed.  Facebook is the most existentially layered version of the real world I can imagine. Everyone from my closest friends to those folks who have crossed paths with me for a brief yet meaningful time are there.  It’s the place where my elementary school besties and bullies post about their versions of how they turned out. People from a former life who hold keys to doors which ushered me to my current self are there too. There are writers and authors and even a real-life famous person here and there (sorry…I won’t out anyone) in the cache of my 560 nearest and dearest.  And I have access to all of them at the same time all of the time.

I take real 1-2 minute life diversions on Facebook multiple times a day.  It’s a weird and somewhat pathetic paradise.  Being a working mother is complicated enough, but I have a few extras thrown on top including a husband that travels and kids with varying special needs which means extra meetings for school, schlepping to therapies, staying current on research, hiring, supervising and managing a home team…and that’s all before actually dealing with the territory of settling in at the end of the day with  kids who just need extra.  Just when I might be taking myself a little too seriously or am feeling a little too isolated…boom….a cat video or Joe Biden meme reels me back.  Connecting in cyberspace is so much more my style and because of that connection I know I am not alone in this.  When I deal with work situations that matter to me, I am a rock star.  I have a purpose and can completely focus externally on the needs at hand.  But socially…yikes. Eye contact, staying focused, not accidentally making a connection out loud as to how the topic focuses back on something I can relate to better….none of those things are my forte.  When posting on Facebook–I can be funny and smart in sound bytes. I can get hoards of people invested in an ongoing saga about my fear of spiders.  I can walk away from a conversation mid-sentence without consequence.  I don’t have to think about where to look or how I am coming across because unlike in real life, by the time my human brain catches up to my monkey brain I have not yet hit “enter” and can edit what I REALLY wanted to say.  Sometimes those two things don’t catch up and that is what the “delete” button is all about.

Facebook levels the social playing field for quirky people like myself.  It gives me a social outlet when I don’t actually have time for a real one.  It keeps me invested in people, events and causes that are important to the real world all around. It provides an escape into brief, clever and timely humor.  It helps me find like-minded people.  It expands the repertoire of  discussions and ideas of which I might not otherwise be exposed.  And I can have all that in tiny spurts all day as needed. It really is miraculous if you think about it.  Communities of individuals who never stood a societal chance before are finding their communities right here on Facebook.

We know to take the good and the bad here. On good days, Facebook is my outlet. Internet trolls and maddeningly misinformed opinion presented as fact are the yin to the yang of my Facebook fascination.  I can roll past things or people who ultimately shouldn’t matter to me.  Something that I fail to do all that well in real life.  But this is changing too quickly for me to cope with in a way I find  acceptable by an election that divided the country before I had any idea we were THAT divided.  I am overwhelmed by Facebook friends and their words of hate or indifference being presented on a platter and served up as just another white meat with no other options for dinner.  I am breathless because I don’t feel like I can scroll past any article that has anything to do with leadership appointment, policy or ideology that may affect my family or anyone else I love.  Suddenly, realities of Facebook friends as minorities, the poor or disenfranchised are inundating my news feed faster than I can read, process and consider and as a seasoned social worker I feel like I am back to my overwhelming roots of weeding which causes need to get the majority of my energies and time.  I have a list of issues and phone calls to congressmen that will trump my everyday life tomorrow.   I am sad and fearful and agitated and distracted and rightfully so. While I have felt this way before on social media, I shut my computer down for the evening, be completely present and come back to a virtual life renewed. I can go back to meaningless status posts that make at least me chuckle at myself. However, in this political climate, I would be this way without Facebook and am having trouble finding meaning in those meaningless status updates. And with it?  Well, I feel much like I often do about real life.  Like I need to take a break from it.

Now I lay me down to sleep….

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4:17am

My beautiful boy wandered into my room tonight.  His curly hair tousled around his cherub cheeks, pajama bottoms twisted in a spiral around his hips from tossing and turning…he marches in quickly as if he had somewhere important to be and then suddenly stops at the foot of my bed with purpose.  He rubs his dazed eyes all the while smiling that big Cheshire Cat grin of his. “Hug”, he says as he makes that long trip to the other side of my California king.   I can’t say I hate it when that happens.  He is warm and cuddly and doesn’t thrash and kick like he used to when he was little.  To the best of my knowledge, A2 has never slept a full night in his life and no one can tell me why.   As he gets older, he seems no worse for the wear for it either.  The stretches between night time explorations have become longer and my husband and I have become a tag team settling into separate sleeping arrangements at night over the years to ensure at least one of us wakes to the new day refreshed.   He tells me “scootch magooch” as he encroaches on the sliver of bed where I sleep and drifts off as swiftly as he made his declaration of his sleep intentions.

The thing is, my husband and I never wake up fully refreshed.  There are Things That Keep Me Up at Night. Who will hug him when we are gone?  Who else will find his sweet smile so endearing even at 3:00am?  We try to be optimistic about his future.  A2 will likely never be able to live independently, but dammit, we bought him a house and we rent it out to people today so in 15 years he will have a place to live….maybe even with 24 hour support staff and 2 or 3 other guys who are sweet spirited sports and music fans like he is.  We live in an expensive school district despite struggling to afford it to make sure he has the best education and connections for his future.   Though we are socially isolated as a family because such is the nature of autism, I remain involved with my religious congregation so he is never alone. SOMEONE will always know and recognize him.  I advocate and I write and I stay present in the disability community so he will always have that community too when it comes time for some else to step in as a guardian when I can no longer do it. A touchpoint for that kind stranger to get guidance or direction. We save the best we can.   We plan for the best possible services and outcomes to give him a meaningful life worth living. We are uncertain what services  will help house him, feed him, care for him.  We can’t be sure that there will be vocational training or health insurance or social security disability payments. All of which is unnerving when you know there will be no one to love him or snuggle with him or wipe away tears.  So we plan as best we can knowing surely, there will be some kind of services for him.

But tonight there is no sleep because now I am not so sure.  I know in the morning light I will look at everyone with a suspicious eye and wonder who around me willingly voted for another reason to keep me up at night. Half the population wanted political change and they got it and whether the overt intentions were there or not, they were willing to make children like my child the sacrificial lamb.  My child will always be dependent on others to be his voice, to protect him….his rights, his body, his dignity . My child and others like him often have no option but to live in poverty and have no political influence as adults.  I am terrified for him because no matter how much we plan, no matter how much we go without today, if it is acceptable for the leader of our country to marginalize him, make fun of him, call him the R word what does that say for the people around us who brush that off and traded my baby in for not voting for the vague “yeah, but she’s worse”?   What happens when it is a decided that my “standard retard” is a drain on the system making everyone elses’ life more difficult?  There will be a supreme court in place likely for the rest of his life who will err on the side of believing that as a universal truth.

The only politics I ever talk about in my writing is my belief that most people are good but misinformed. Perhaps not in my lifetime, but certainly in his, I believed that it was possible to change the world around him enough that true inclusion and a dignified life were possible and through that, the need for the work of disability advocacy would dwindle.  Perhaps I truly believed all that because I see the innocence in his eyes.  He is a pure soul who has helped me see good first and maybe I can spread that message for him.

So, forgive me if you were one of the people who so desperately wanted political change if I seem a little distant from you.  While I am hopeful that my fears are akin to “they’re taking all our guns from us!” it’s a bit harder for me not to be devisive when we are talking about my baby.  But don’t worry….A2 won’t judge you.  He is forgiving and will love you anyway.