It’s so easy to look from the outside of someone’s life and make assumptions about how they’re doing. In the last 24 hours, I read a couple of posts that showed me how wrong we can be.
When we ask someone how they’re doing, do we really want to hear the answer? Do we make room for people to share candidly? Or do we just want the sanitized ‘fine,’ so we can go on our merry way?
Susan Senator and Maya Wechsler are what I think of as super parents. People who have literally moved the world to give their kids fabulous lives. Trailblazers.
But yesterday, they were both waving distress flags.
Susan is a Boston author who’s written a number of books on raising her son Nat, who has autism and doesn’t speak. The most recent was Autism Adulthood: Insights and Creative Strategies For a Fulfilling Life. She’s also written for BLOOM.
I always looked to Susan with envy at her ability to work with Nat and her family to come up with creative ways for Nat to live in the community with support. There had been some horrific bumps. But the last time I checked in, it seemed he was in a great living arrangement and doing cool things like playing in a band.
So it was a shock to hear yesterday that Nat had returned home, and to read this Facebook post:
“No matter how hard I work to help make this world a better place, to actually give a sh%t about people like Nat, I get obstacles thrown in my path, I get fight after fight for just basic inclusion and decent treatment of him. I want to f%cking just give up, I am too old for this, and not getting any younger.”
Ironically, The Washington Post also ran a piece called People don’t want to hear the ‘ugly details’ of our struggle to raise and educate our autistic son. That piece is behind a paywall, so you can find it here on the author’s blog.
I was surprised to realize it was written by a mom I'd interviewed in BLOOM: Green acres is the place for me. Maya and her husband moved their family from Washington, D.C. to a farm in Virginia and opened A Farm Less Ordinary, a business selling vegetables that employs adults with intellectual disabilities. They wanted a better life for their son with autism.
In a post from earlier this year, Maya wrote about her experience connecting online with people who were celebrating the 15th reunion of her graduate university program:
“I found myself staring at the conversation, wondering exactly what the hell to say to these people. 'Do I tell them that we are broke? That paying for my son’s therapies and child-care has ruined us, financially, so a trip to Chicago isn’t really in the budget at the moment?...Or do I tell them that I really don’t want to sit around and have polite conversation about their PhDs and growing resumes...?”
I am in awe of what Maya and her husband have accomplished with their farm. When I interviewed her, I told her I wished I had the courage to do something like that for my son. I still do.
Back to Maya's piece: “No one wants to hear the truth, when they casually ask how I’m doing, or how my holidays were. They wouldn’t know what to do with the truth, however much I sanitize it for their comfort and digestion. People want to hear about progress.”
Susan Senator and Maya Wechsler are what I think of as super parents. People who have literally moved the world to give their kids fabulous lives. Trailblazers.
But yesterday, they were both waving distress flags.
Susan is a Boston author who’s written a number of books on raising her son Nat, who has autism and doesn’t speak. The most recent was Autism Adulthood: Insights and Creative Strategies For a Fulfilling Life. She’s also written for BLOOM.
I always looked to Susan with envy at her ability to work with Nat and her family to come up with creative ways for Nat to live in the community with support. There had been some horrific bumps. But the last time I checked in, it seemed he was in a great living arrangement and doing cool things like playing in a band.
So it was a shock to hear yesterday that Nat had returned home, and to read this Facebook post:
“No matter how hard I work to help make this world a better place, to actually give a sh%t about people like Nat, I get obstacles thrown in my path, I get fight after fight for just basic inclusion and decent treatment of him. I want to f%cking just give up, I am too old for this, and not getting any younger.”
Ironically, The Washington Post also ran a piece called People don’t want to hear the ‘ugly details’ of our struggle to raise and educate our autistic son. That piece is behind a paywall, so you can find it here on the author’s blog.
I was surprised to realize it was written by a mom I'd interviewed in BLOOM: Green acres is the place for me. Maya and her husband moved their family from Washington, D.C. to a farm in Virginia and opened A Farm Less Ordinary, a business selling vegetables that employs adults with intellectual disabilities. They wanted a better life for their son with autism.
In a post from earlier this year, Maya wrote about her experience connecting online with people who were celebrating the 15th reunion of her graduate university program:
“I found myself staring at the conversation, wondering exactly what the hell to say to these people. 'Do I tell them that we are broke? That paying for my son’s therapies and child-care has ruined us, financially, so a trip to Chicago isn’t really in the budget at the moment?...Or do I tell them that I really don’t want to sit around and have polite conversation about their PhDs and growing resumes...?”
I am in awe of what Maya and her husband have accomplished with their farm. When I interviewed her, I told her I wished I had the courage to do something like that for my son. I still do.
Back to Maya's piece: “No one wants to hear the truth, when they casually ask how I’m doing, or how my holidays were. They wouldn’t know what to do with the truth, however much I sanitize it for their comfort and digestion. People want to hear about progress.”
So I post this story here as a pause. Let's take a pause and acknowledge the lengths our families go to to try to make the world a livable place for their child. Let's recognize the immense challenges and barriers, that stubbornly persist.
Because if parents like Susan and Maya find themselves at wits' end, we need to sit up, pay attention, and extend compassion, to ourselves and to every family walking a similar path.
Because if parents like Susan and Maya find themselves at wits' end, we need to sit up, pay attention, and extend compassion, to ourselves and to every family walking a similar path.
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2 comments:
Wonderful post, Louise. It is so true of the constant fight that can just wear you down some days. My son will likely be diagnosed with a very rare disease in the coming month and I know that a whole new level of advocacy is on the horizon. Some days I am energized for it and others the thought just wears me out. We need to recognize this in everyone around us.
I so appreciate the truth and vulnerability in this post. The constant need to advocate and re-imagine the world so our kids can have a place of belonging and growth can be exhausting and frustrating. And unless you're somehow in it, you just don't understand the magnitude of it. And yet, we as the parents, advocates, caregivers, wannabe world changers have to be able to step up - no matter what - and keep moving forward. So that's what we do.
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