If you are among the 5 or 6 people who haven’t heard Dr. Brené Brown’s TED talk on vulnerability, I’ll give you an extremely abridged version: vulnerability is the embrace of uncertainty, risk, and emotional exposure. The willingness to do this defines courage.
The only place that feels safe for me to engage in emotional exposure is on stage, or in my writing. Face to face in normal human interactions, not so much. My response to the discomfort I feel trying to make friends with people I’ve just met is to turn the conversation into a performance. Be funny, do schtick! Here we are now, entertain us!
But this past week, emotional exposure just showed up to kick me in the ass.
Any parent of a person with differences is forced into vulnerability when something new or different happens and they’re seized with the fear that they don’t know what to do, and they have to ask for help.
Unlike my tendency toward performance in conversation, I don’t go for showy prayer. It’s between me and God. When I first read the Bible cover to cover, the passage in Matthew (6:6:5) that refers to praying privately (“go into your room and shut the door”) really stuck with me. So I won’t go into detail, but I will admit I asked for help.
And things lined up. I worked up the vulnerability to take advantage of an opportunity that I was sure would would help. It has, tremendously, in just a few days.
I got through that particular Mom-of-an-autistic-adult-crisis, but now I have to generate the vulnerability to think about what happens when I just can’t do it anymore. I got a scary taste of that when my knee “went out” a few weeks ago.
Thankfully, the major structures of my knee are fine, and physical therapy has helped a lot. I’m even back to my morning workouts, which make me feel really good and set me up for a positive day.
But a chill comes over me when I think about what could happen if I lose mobility, even temporarily. I have to expand my support network, and that’s going to require the vulnerability to ask people half my age for help finding someone who probably doesn’t exist.
You’ll understand what I mean if you watch the Amazon Prime series, “As We See It.” It features autistic actors portraying three autistic young adults sharing an apartment while trying to build independent lives. It’s a remarkable, heartbreaking, and hopeful show.
The three young people who live together have known each other since pre-school. That’s not unusual among autism families. Although our kids are different from each other, they end up in the same classes with each other, and tend to move through school together, whether they attend public or a special private school. They don’t necessarily become close friends, but they get used to each other.
Their families often team up to find services, activities, and professionals who can help our kids cope in an unwelcoming, overwhelming world.
The fictional families of “As We See It” have somehow found the perfect “life coach” to support their adult children. Mandy is a young woman (slightly younger than the autistic characters) who has a unique gift to calm and nurture these three young adults with sensitive, individual, age-appropriate advice. She cares about them so much she avoids studying to raise her MCAT score to get into med school. She may elect to stay with her trio of clients instead.
Mandy is spectacular.
She also doesn’t exist.
Not in real life, anyway, not in my experience.
The three fictional families pool resources to pay Mandy several thousand dollars a month. Mandy works with their young adult children full time. She doesn’t live with them, but neither does she limit her availability to “before or after school hours.” She’s there when they need her.
So, where, exactly, and how, did these families find this person? How does Mandy pay for health insurance? Mandy drives these young adults around in her own car, but several service workers I have interviewed refused to do that, because they believe they’ll need expensive business auto insurance if driving is part of their job.
I need a “Mandy Project” (apologies to Mindy Kaling, whose series, “The Mindy Project” I’ve heard of but haven’t seen) that would help me find a pool of grad students who could be paid part time peer-companions, willing to eventually consider a job as a devoted, caring, full-time life coach, who will never quit.
And I’ll need to find other families willing to pool resources to pay them.
Off to bake a pie in the sky, I remain,
Your toughing it out on the knee front, vulnerable, gritting her teeth and getting on with it,
2 thoughts on “The Mandy Project”
I am deeply resonant with your dilemma and join you in longing for a resolution. My nearly middle aged daughter in NY state with ASD and other challenges is between programs that were/are failing her. COVID has not helped in keeping overworked poorly paid carers to stay on the job. I am twice my daughter’s age and her future as I age in an assisted living situation is an even more pressing concern. Her very involved older sister has two young children and because she and I live here in Ohio, we are hoping to convince my younger daughter to move closer to us so we can advocate for her in recreating a new support system- a big job on so many levels. I pray often for clarity to make right choices and to find new resources- to find faith in Julian of Norwich’s famous words, (my capitals for emphasis) “All shall be well, all SHALL be well, and ALL shall be well.” May it be so though we do not yet know what that will look like or who a ‘Mandy’ helper of our own will be like.
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Oh, I feel you, Judi! The whole system was fragile before and now it seems shattered. Julian of Norwich is moving to the top of my list of books I should have read by now, along with all of Ann LaMotte (sp?) I’ll send hopeful vibes for you and your daughters. All shall be WELL.