Left Brain Right Brain

Let me put this more direct:
Everyone is stressed right now. If you think you are at your own limits, find someone to take over. Call family. Call social services. Call someone. Please.

It’s April. For some it’s “autism awareness month”. For others, we remember autistics and other people with disabilities who have been killed by parents or other caregivers.

It’s also April, the second month of “shelter in place” as the COVID19 pandemic brings the world to a halt.

There are two things which scare me more than anything else: losing one of my family and myself dying and not being here to provide for and protect my family. I’ve had to face these fears multiple times in the past. I’ve spent nights wondering if every text I got would be from my wife, who was at the hospital with one kid, telling me that kid had not made it. I spent a day with the misdiagnosis of a huge aneurysm in my brain. Just to name two experiences.

And now I face those fears again. I’m not very old, but old enough to be at risk. I look at my family and wonder about other risk factors. And I live in fear.

Let me focus on my autistic kid for now. It’s one thing in times of relative safety and security to say, “This kid is my whole world” (as are each an every one of my family). But when one faces the very real chance that in a year or two one or both of us may be gone, it gets very real, as they say. And as I face that reality, let me say a few truths:

My kid is not a “burden”. I don’t want that “burden” lifted by one or the other passing.

My kid is a joy. Sure, I want to live as long as I can to be there to support my kid. But I want to live as long as I can to spend time with my kid.

I’ve “walked in the shoes” of the parents who have killed their kids. I spend my life with a kid who is disabled, autistic, and in need of a very high level of support. I can not and I will not forgive or forget those who chose to kill their kids. I will forgive and support people who realize they can not handle the life they have and decide to let someone else take up the responsibility. I’ve traded emails with family members of murdered autistic kids, family members who would have loved to care for those kids. They walked in the very shoes of those who chose to murder. They cared for the same exact kids.

Let me put this more direct:
Everyone is stressed right now. If you think you are at your own limits, find someone to take over. Call family. Call social services. Call someone. Please.

—
By Matt Carey

Lydia X. Z. Brown has an opinion piece in the Washington Post which, in my humble opinion, is well worth reading:

Autistic young people deserve serious respect and attention — not dismissal as the pawns of others.Donald Trump’s attempts to discredit Greta Thunberg are the latest attempt to show autistic people can’t speak for themselves.

Here are the first two paragraphs:

When Donald Trump called Greta Thunberg “so ridiculous” and said she needed to “work on her anger management problem” and “chill,” it felt all too familiar. Like Thunberg, I am also an autistic activist used to people with more power dismissing me as angry, unmanageable and unlikable. These attacks come alongside insinuations that I never belong in the room and do not deserve the accolades I have earned.

Even when autistic people are honored, like Thunberg was when she was named Time’s Person of the Year, we are immediately discredited as children, reinforcing the ideas that children and autistic people alike have no agency and our work is illegitimate. For me, this has happened at every stage of my work as an advocate, since I drafted legislation on police training in Massachusetts when I was still in high school up to when I designed lesson plans on disability justice used in thousands of middle and high school classrooms through Amplifier’s We The Future art education project.

Lydia Brown is someone I respect a great deal. I’ve been following them for many years.

My autistic kid is lucky that advocates like Lydia are out there.

—
by Matt Carey

The essay is structured as “you were pregnant. You had hopes and dreams. Then you got a shock–your kid wasn’t what you hoped for.”

Why do we keep telling parents that story? The only reason there is a shock is because we don’t remind parents that disability is real. And that the dream lives on–having a family, loving a child. It isn’t disloyal to the parents or the child to accept the possibility that a child will be born or acquire a disability. And it would help child and parents if we as a people did this more.

A list I joined a long time ago is run by someone very active in the anti-vaccine/fake-cure movement. And every year I get sent the “inspirational” essay: Happy Mother’s Day: Mothers Lie. I truly dislike that essay.

I’ll put it below.

The short version of why I dislike this essay has to do with this one phrase:

You didn’t volunteer for this

Let me add another phrase from the essay:

You’re a woman who doesn’t have time to step back and put things in perspective

I’m a father, not a mother, but allow me to use my own experience. Having a disabled child has forced me to put things in perspective. It took years, and help from a lot of people. Shan, I’m thinking of you and other parents, but mostly from adult autistics.

So, with all that time and help, here’s my perspective for our family. The truth of the matter is we did volunteer for this. “This” as in: we decided to have a child. Perspective means I’ve stripped this down to the basics. We volunteered to have a child. And we were lucky enough to get a child. We are lucky enough that our child is alive. I’m lucky my wife survived pregnancy. I wanted a child I could love. I wanted a child I could try to help find their own identity, their own way, their own life. To help them pursue happiness, on their own terms.

Ms. Borgman, I appreciate what you were trying to do with this piece. I really do. But a lot of parents never get past the “what I hoped for was…” phase. Hitting mothers with this every year doesn’t really help. In the autism community we see parents who never accept who their child is, and focus on who their child was “supposed” to be. What the parents hoped for. They focus much of their energy in anti-vaccine action, because they are convinced that autism is “vaccine injury”. They become targets for charlatans selling all sorts of fake and even abusive “therapies”, because they want to “recover” their child. Note the term: recover. They aren’t trying to treat a condition, they are trying to regain what they feel they have lost.

Believe me, I am in awe of mothers. My wife especially. She had a better perspective on disability before we had children than I had even after our child was diagnosed.

It’s great to hope and dream. I’ve never stopped. But we need to ground our future parents before diagnoses as to what to expect. And that acceptance is a very valid option. That being the parent of a disabled child is more challenging, but it doesn’t require a super power.

In my opinion our culture needs to reassess how we view and discuss disability. And how we view the hopes and responsibilities of starting a family. Here’s a simple example of what I mean–I did a quick search on the site for the famous book “what to expect when you are expecting”. I used the term “disability”. Here’s what I got:

Here’s what I noticed–the first two hits are for (1) having a child while disabled and (2) disability insurance for maternity leave. Only when we get to (3) are we seeing disability for the child. And this is under “first year”. We really need to be educating people about disability before pregnancy. During pregnancy. You can’t fully prepare for the news that your child is disabled. But, then again, you can’t fully prepare for life with any child. What you can do is do some preparation.

You may be thinking that I’m saying “don’t encourage parents to hope.” Far from it. But hope and acceptance are both good things.

Another way to look at it is this. The essay is structured as “you were pregnant. You had hopes and dreams. Then you got a shock–your kid wasn’t what you hoped for.”

Why do we keep telling parents that story? The only reason there is a shock is because we don’t remind parents that disability is real. And that the dream lives on–having a family, loving a child. It isn’t disloyal to the parents or the child to accept the possibility that a child will be born or acquire a disability. And it would help child and parents if we as a people did this more.

Here are the sorts of corrections I’d suggest. First this phrase:

“Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.”

Perhaps this version wouldn’t change your story that much?

Every Mother wants a baby. Full stop. Remember that, you wanted a baby. You hoped that your baby would be able to see, hear, run, jump and fire neurons by the billions. But you knew that your child might be disabled.

I would change the last paragraph from:

You are the mother, advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.

to something like:

You weren’t fully prepared for this. You are the mother. You are an advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.
But, most of all, you are a mother.

Actually, I’d probably not use “you’re a wonder”, but I did say I am in awe of mothers. So there’s that. But the whole “you’re a wonder” message makes expectant parents think, “maybe I’m not up to the task.”

I don’t usually like it when people tell me how to write, or what to write about. I’m not suggesting you rewrite. But perhaps take a look at what these changes do to the message. Let’s move away from our society’s ideal that it is somehow romantic to look back on when we were naive and ignorant about our children possibly being disabled. That leads to regret and holding on to a feeling of loss. And that leads some parents into a very bad place. It keeps some parents from ever accepting their child’s disability. Perhaps you don’t know, but there is a segment of the autism parent community that thinks acceptance is a bad thing. Boggles the mind, but it’s true.

If nothing else, I can say that it would have helped me a great deal if we had changed the message long ago. Before I had kids.

—
By Matt Carey

here’s the essay:

Happy Mother’s Day: Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.
The doctor’s words took your breath away.
It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn’t seem possible.
That didn’t run in your family.
Could this really be happening in your lifetime?

There’s no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you’re ordinary.
You snap, you bark, you bite.
You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling,
“Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack.
You’ve developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.

Simply put by example: I feel that my kid shouldn’t have different rights or be afforded less respect just because of disability. Yes, my kid needs a lot of support. Yes, my kid is different. No, my kid shouldn’t have to trade rights away for that support. No, difference doesn’t mean less.

What does neurodiversity mean to me? It strikes me odd that I am often told what the term means, usually by people who have it completely wrong and who don’t want to listen. So, I thought, why not put it into words.

Note that like many terms, others may see neurodiversity differently than I do.

That all said, let’s start with the difference between “neurodiversity” and “the neurodiversity movement”.

Neurodiversity is the fact that we don’t all think the same. Different people have different neurologies, hence we have a diversity of neurologies.

A lot of people use “neurodiversity” in place of “the neurodiversity movement”. As in when I read “I don’t believe in neurodiversity”. Again, what neurodiversity is is a fact, one obvious to anyone in the autism communities. Or should be.

So, what is this neurodiversity movement, then? For me, it’s simple–the effort to advocate for equality and respect for people of various neurologies.

Simply put by example: I feel that my kid shouldn’t have different rights or be afforded less respect just because of disability. Yes, my kid needs a lot of support. Yes, my kid is different. No, my kid shouldn’t have to trade rights away for that support. No, difference doesn’t mean less.

—
By Matt Carey

I had the privilege of presenting a second piece on KQED Radio’s Perspectives. The piece, Proud of You, aired earlier this week. The audio is on KQED’s site.

When we were expecting our son a doctor told us he would be very disabled. I had feared hearing that and yet I had never prepared myself. I didn’t even know what questions to ask. After many sleepless nights the question came to me. I called a friend of mine whose daughter is disabled and asked simply, “Is she happy?” Yes, he told me, she is generally happy.

I didn’t know whether my son would be able to be happy. In our society we often equate disability with unhappiness.

A few days later we learned this was a misdiagnosis.

When my son was two we realized he was disabled, for different reasons. There were suddenly far too many things to do than we could manage. But I never thought, “My son and I should set an example.”

I did want to make sure my son got out into the world. For him. I knew it would be very easy to retreat to our home. So we go into the community as often as we can.

People notice us. Once, a man approached us. He was very upset as he was trying to come to terms with his mother’s dementia. He saw a parallel between his mother and my son. And he noticed that my son and I very much enjoy our time together, even though we are very different.

My mother had recently passed away after years of dementia. I told my neighbor what I had learned from my son. This person in front of you is still a valid person. My son is very different from other children. My mother was different than she was when we were younger. But I learned to enjoy the time I have with the people in front of me rather than comparing them to some “normal” person.

I told my son, “I’m talking about you because I’m proud of you.”

People notice my son and me. Sometimes they see us struggle. Struggle hard. Often they see us enjoy our time together.

I don’t mind that people notice us. When they do, I remember when my friend helped me, when my son taught me to accept my mother. And I hope that our struggles and our joys set an example for others.

With a Perspective, this is Matt Carey.