January 30, 2011

Get a Life

Posted in My Take on Autism tagged , , , at 8:56 pm by autismmommytherapist

Someday, I’d like my life back.

I’m not referring to the one I had pre-child, which was a fairly self-absorbed mixture of work, museums, bars, and fighting with my husband over his permanent moratorium on ethnic food. I’m not even alluding to the one I had post-Justin, pre-diagnosis, where I often comforted myself with my grandma’s favorite saying, “this too shall pass”, when most likely whatever was distressing my son for the better part of his days, probably never would. No, I think in the few minutes every morning, before I bribe myself out of bed with the promise of chilled chocolate propelling my tired body forward, those minutes in which I allow my mind to wander both past and present, that what I’d really like to return to is the luxury of one, simple, prior reality.

One day, I’d like to have choices again.

I recently read a wonderful post by Susan Senator, in which she discusses her journey in trying to secure housing for her almost twenty-two-year-old son. As I read it I remember thinking how brave it was for her to put her desires “out there”, to share her need to live a connected yet separate life from her oldest child. When I say brave I mean it, because talking about where your profoundly or moderately autistic child is going to live upon majority is fairly verboten among my people unless you really know those with whom you’re discussing the topic. Long-term care and the vaccine-autism issue is for some of us the equivalent of asking the mainstream world about their politics, religion, or feelings about abortion. Unless you’re particularly close to someone, it’s not often dinner conversation. Topics are undertaken at your own risk.

I realized recently how secretive some of us are about our long-term wishes when the subject casually came up in a dialogue I was having during a playdate, one in which I consider both my son and myself to be the beneficiary of a friendship made, connection forged. Over hot tea I was sharing that Justin seemed to be loving his horseback riding lessons, was exuberant when we made the turn-off every Saturday from the fairly narrow country road to the main thoroughfare that would lead us to the barn. I made mention of how I hoped he’d eventually acquire the skills that would lead to equine care, the grooming, feeding and cleaning of tack that might eventually engender some type of employment for him one day. I closed with my wish that he’d eventually reside either on or near that magical, ethereal farm in my mind, and that my husband and I would live somewhere nearby. I watched her pause, stare at me, and whisper, “You want him to live somewhere else someday too?”, and I realized anew how loaded this subject has become at times within our community.

I also realized, once the words escaped my mouth, how much I do one day wish for him, and for me, an enmeshed, yet divergent, existence.

I love my son. If nothing else is clear from my weekly missives, I’m confident this emotion comes through. I’ve referred to this issue of separation before, mostly during difficult times, when our decades together seemed to stretch out before us in an almost endless dance of distress, days where making it to lunch without a major crisis unfolding seemed an extravagant dream. Through much hard work, relentless repetition of behavioral concepts, and mostly Justin’s innate desire to be happy, we’re finally in a good place now, and yet I find myself compelled to reiterate my previous assertion. Despite the positive changes, I still hope we can procure a safe environment in which Justin will be able to call home one day. I call that desire my own personal mantra.

I know some wonderful families who intend to keep their children with them as long as humanly possible, some with neurotypical siblings who have offered to take up the mantle of caregiver once their parents pass on. I think these parents, and particularly their non-affected offspring, are amazing people. Frankly, I’m humbled by their choice, and I mean this in a completely sincere, non-snarky way. It is the siblings in particular who move me, those who completely understand the restrictions caring for an autistic adult will place on their own lives, yet are willing to undertake the burden and blessing nonetheless. The ones I’ve met who plan on taking this path aren’t martyrs, or passive victims of circumstance. They want to do this. They are, frankly, incredible individuals.

And I, frankly, am not.

Will I rise to the occasion if necessary?  Of course. Will I be happy about it?  Not on your life. And I will do it because I love my child, and he’s my responsibility, although to be perfectly honest I only undertook the position of parenthood due to the probability the “hard lifting aspect” would be over for Jeff and me after twenty some-odd years. The possibility of long-term care did flit in and out of my brain as I read those pregnancy and baby books, and just as quickly as I concluded absorbing the most depressing case scenarios, they flew out of my head again. Jeff and I were fairly upstanding citizens. We paid our taxes. We made donations to charity. Despite my penchant for writing about wine our liquor consumption was casual and appropriate. Hell, I was even nice to highly irritating children I didn’t even know. I had every hope our clean living would translate into healthy progeny, both in body and in mind.

And ultimately, it did, just with a twist worthy of any conclusion to a current reality show.

Although I don’t believe in the concept of fair, am more a proponent of a more simple aphorism, “shit happens”, I am hopeful the universe will lob another twist my way eventually. I’d like to envision an ending to this story that involves us circumventing the present twenty year waiting list for group home placement in our state, the one where the waiting part only commences when said child hits drinking age. I choose to imagine a nearby residence where my son has known the individuals he’s lived with for years, because his mother has been able to cultivate friendships for almost two decades with like-minded, kind, responsible parents. I’m eager to think that we’ll all look out for each other’s children, create our own type of family, as we share the responsibility of assisting caregivers in keeping our offspring alive, productive, and hopefully, happy.

I long for this for Justin, because he’s initiated outside interactions with others since pre-school, and will most certainly be bored with me by the time he’ll be legally able to vote. I seek this scenario out for him because I know at the very least he will be enthused about living with other adults who will engage with him, that he will actually enjoy what I am certain will resemble a revolving door of caregivers. He is a child, and will one day be an adult, who enjoys variety.

And then, there’s me.

Someday, I’d enjoy the opportunity to return to Europe, or visit my friends in DC on a whim, or just spend the day running around NY with no agenda, no well-executed plans. I’d appreciate the luxury of making a dental appointment without having to secure child-care for my twenty-something offspring. I’d like the chance to have a real sick day spent mired in the folds of my sheets and comforter, watching the Godfather trilogy, or old Everybody Loves Raymond episodes, or whatever reality show I’m pretending I don’t have Jeff record on our DVR. Hell, I’d just be happy to wake up once in a while and have no idea what to do with my day.

And for anyone out there seeking the same eventuality for their own family, here’s a heartfelt wish for all of us longing for the luxury of an empty nest.

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8 Comments »

  1. JMeal said,

    Here, here!

  2. Misifusa said,

    Kimi, May your wishes come true! xo

  3. Shivon said,

    This has been on my mind so much lately, along with 500 other things. Thank you for writing this, thank you for sharing feelings that I am feeling everyday. It means so much that I am not alone 🙂

  4. Chad said,

    Berlee–

    Heartfelt and honest. Another incredible read. Do you ever not produce something magnificent? Time to write the book!!


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