Tuesday, August 26, 2014

I see the picture you're not posting

Hey, you guys?

I just want you to know, I get it. I get how hard it is at this time of year when your Facebook feed is full of the shining, happy faces of your friends' kids on the first day of school. I know how much it stings.  I know the pain, and then the guilt you feel that someone else's joy should cause you pain, and then the loneliness you feel because, it seems, nobody else really seems to get that this is a really hard time of year for you. Because it should be happy, right? Look! Shiny, happy faces everywhere! This is a Very Happy Time.

But it's okay to feel the way you do. It's normal to look at pictures of shiny faces and feel sad for your child, whose anxiety about a new transition kept him up for most of the night. It's okay to look at pictures of crisp new outfits and feel the pang of hurt for your child who was so bothered by the texture of the treasured new outfit she'd chosen that she cried and cried all morning until you convinced her that it really was okay to wear her old, soft t-shirt on the first day. I understand how hard it is to see the photo of the happy kindergarten student as he boards the bus for the very first time, as you prepare to drive your high schooler across town to school, because he just isn't ready to ride the bus on his own yet.

I get it. It's really, really hard.

But you know what? I posted a happy picture of Bud on Facebook this morning, too. It was a real, genuine, happy moment and he had a good first day of school. But I haven't exhaled yet. I won't exhale for weeks - if I exhale at all.

I keep thinking about something Jess from Diary of a Mom posted last December, as the holidays approached.  I think it's a good thing to remember now, too.


So, really. It's okay. I get it. I see the picture you're not posting.

And I'm not posting one just like it.

Wednesday, April 02, 2014

1 in 68

Depending on whom you ask, today is World Autism Awareness Day, World Autism Acceptance Day,  or Everyone Matters Day.  From my perspective, awareness, acceptance, and mattering are all vitally important, so I say bring 'em on.

Last week, in the lead-up to these events and to the month of April, which is Autism Awareness Month, the CDC released the latest autism prevalence rates - now 1 in 68 children and 1 in 42 boys in the U.S.

I have a new post up at The Huffington Post with my thoughts about what it all means.

Click here to read it.

And happy awareness and acceptance day.  Remember:  you matter.

Saturday, December 21, 2013

Christmas, present

I have a new piece up at The Huffington Post, called Zen and the Art of Alzheimer's.  As I said when I posted the link on the MOM-NOS Facebook page, I rarely know what to get my father for Christmas, but this year I hope I can give him the perfect present.

Happy holidays, friends, from Bud and me.

Monday, November 18, 2013

This is autism

There's a flashblog going on today on blogs across the autism blogosphere in response to the most recent press release from Autism Speaks' co-founder Suzanne Wright, in which she writes,
"These families are not living. They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7. This is autism.  Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  This is autism." - Autism Speaks "A Call For Action," 11/11/13
As you might imagine, this fear-inducing, desperation-drenched approach to "autism awareness" has been received with anger and offense from a large portion of the autism community, who believe that, in fact, they really are living - and quite well, thank you.  
In response, the "This is Autism" flashblog was born - a single day on which bloggers from all areas of the autism blogosphere, autistic and neurotypical alike, would write about what autism is to them.
There is plenty I could say I could say about my life as the parent of a child with autism.  It is hard, exhausting, beautiful, inspiring, challenging, exciting, messy, ugly, rewarding, confusing, and wonderful.  In other words, as Emily Willingham says, it is just plain PARENTING.
But instead of waxing on about my own experience, I decided to call on the resident expert in my household - the one who experiences autism from the inside out - to talk a little about what it really is to him.  Here's what I got:

This is Autism
By Bud
It’s good for your brain.
Autism is good at thinking.
I’m good at thinking about things way back when.
I’m also good at eating sandwiches.
Isn’t it great?
And you know what?
My autism is good at things like:
I’m good at eating bananas.
And I like making PowerPoints, I do.
And I love music.
And I like watching Fetch on PBS Kids.
And you know what?
I’ve got a computer I can play on.
I can read.
And write.
I like watching Teletubbies. It begins with a capital T.
I like dancing.
Autism is, like, your brain.

And there you have it.  Suzanne Wright had it partially correct:  We are breathing - yes. Eating - sandwiches. Sleeping - when we're not dancing. And working - on PowerPoints.

This is our autism.

And our autism is, like, good for your brain.


For some compelling responses to Suzanne Wright's statement - and for an explanation of why we'll be retiring our blue light for the awareness campaign sponsored by Autism Speaks and channeling our donations elsewhere, please read any of the following:

I Resign My Role at Autism Speaks by John Elder Robison

Why Autism Speaks Doesn't Speak For Me by Emily Willingham

ASAN - AAC Statement on Autism Speaks' DC "Policy Summit"

No More - A Letter To Suzanne Wright by Jess Wilson

Wednesday, November 06, 2013

Presume competence

There has been a bit of back-and-forth in the comment section of my last post.  The gist of it goes something like this:

"Hey, look at this great thing Bud did."

"Actually, that might just be a deficit masquerading as a strength."

"Really, I gotta say, I think it's a strength."

"Perhaps.  On the other hand, it could just be a well-developed deficit."

I'm not going to volley back, because ultimately, any response I have will sound at best like I'm being defensive and at worst like I'm in denial.

But it does make me have to ask:

Why is it that when it comes to autism, so many of us are so quick to view behavior through the lens of deficit and so slow to view it through the lens of strength?

The lens through which we view our children matters.  The way we frame their behavior shapes our response, and the way we respond shapes their behavior.  It's a dynamic cycle.

Presume competence, folks.  Presume competence.

Monday, October 28, 2013

Autism, empathy, and understanding

The other day, Bud was doing something I didn't want him to do - something I've told him a million times not to do, but something he just keeps doing anyway.  I intervened and redirected, and I tried to make it clear to him, once and for all, that this was important.

"BUD!" I said sharply. "I mean it."

"You're angry, Mom?" he asked half-heartedly, barely glancing in my direction.

"Yes, Bud," I urged.  "I'm angry.  Look at my face."

"Look at my face" is a phrase I use with Bud, not to request that he make eye contact, but to remind him that there are visual cues in peoples' faces - cues that will help him understand what's happening and help him determine what to do next.

Bud turned and searched my face.

"You're not angry, Mom," he said.  "You're sad."

I knew in an instant that he was right.  He watched as it registered on my face.

"Why are you sad?" he asked.

And then the conversation turned in a whole new direction.

I'm tired of reading that children with autism lack empathy.  I'm tired of hearing that they have a compromised ability to understand that someone else's experience of the world is different from their own.

With one look at my face, Bud recognized something I hadn't.  I'd been labeling my emotion, even to myself, as anger - perhaps because anger seemed easier to manage and easier to resolve. But though it was emerging in harsh tones and barked words, at its heart, what I was experiencing wasn't anger.  It was resignation.  Defeat.  Sadness.

I'll remember this exchange the next time I read about what children with autism can't do.  Because this child?  The one with the disability that compromises his capacity to understand - or even want to understand - others?

Sometimes he knows me better than I know myself.

Thursday, October 24, 2013

Yes, really

I wish I were cool enough to be nonchalant and just casually drop this into conversation, but I'm not.  Not at all.  Not even a little bit.  So here it is:

I'm in the Huffington Post.

I was invited to submit a piece for last week's TED Weekends series, the theme of which was "What We Can Learn From Gifted Minds."  I submitted and they accepted, and suddenly, there's my smiling face under the HuffPo banner.

I'm positively giddy.

I would have posted about it here sooner, but I've spent all week refreshing the page to make sure it's still up.  Somewhere in the back of my mind, I feared that someone from the editorial staff would stumble upon it and say, "What is this doing here?"  But so far, so good.

For those who are fans of my Facebook page, thanks for celebrating with me this week.  It has been a lot of fun.

Friday, October 18, 2013

Growing up

Bud and I are going to stay with friends for the weekend.  They are teenage friends - 17 and 13 - whose dad will be out of town.  They don't need supervision, but we're going to keep them company.

I explained the plan to Bud last night.

"We're going to take care of them?" he asked.

"No," I said.  "They're old enough to stay by themselves.  We're just going to spend time with them."

"They're old enough to stay by themselves?" he asked.

"Yes," I answered.

"But I'm not old enough to stay by myself?" he asked.

It wasn't a challenge, but it stopped me in my tracks.  Bud is older than the younger of our friends. But, developmentally - well, no.  He's not old enough to stay by himself.

This is a brand new dynamic - this comparing himself to others.  It has only started emerging in the past couple of months.  It's an important developmental step, I know - and yet, it makes situations like this much trickier than they've been in the past.

"Well, you like to have someone stay with you, don't you?" I asked.

"Like who?" he countered.

I started naming favorite sitters.  "Like Cally," I said. "Or Ashley.  Or Amelia.  Or me!"

"Or you?" he asked.

"Yeah, me!" I cheered.  "I love staying with you."

"Aw, thanks, Mom," he said, leaning over to hug me.

And that was that.  The issue was resolved.  For now.  But it still feels like we've crossed an invisible threshold.  I think we've officially entered the next stage of development.

I just hope I'm ready for it.

Monday, September 16, 2013

Tripping the light fantastic

I think this is the first day since school started three weeks ago that I haven't gotten a call from the office, an e-mail from the team, or a note in the backpack.

I'm choosing to take it as a good sign.

Tonight at dinner, I thought I'd try to explore a little to find out how the day had really gone.

"So, Bud," I asked, "what was the best thing at school today?"

"Well," he answered excitedly, "the best thing was doing ballroom dancing in gym class!"

"Ballroom dancing?"  I said.  "Really?"

"Yeah!" he replied.

"That's cool!"  I enthused.

"That IS cool!" he responded.

Then we returned to eating our dinner and I started to think about it some more.

"Wait," I said.  "Was EVERYONE doing ballroom dancing or was it just you?"

"It was just me," he said.

Ah.

I have to tell you:  Sometimes I wish I were a lot more like Bud.

Sunday, September 08, 2013

An open letter to the future me

To be opened in April, 2014

Dear MOM-NOS,

Hi.  Hope 2014 is off to a great start.  Thanks for coming back and reading this.  (Siri reminded you, right?  She lives for this kind of stuff.)  Anyway, I need to remind you of a few things, because - well, I know how you get.  Don't get me wrong.  I love your rose-colored-glasses, focus on the positive, glass-half-full approach to life.  I don't know what I'd do without it.  But right now, as you're starting to prepare for the transitions ahead, I need you to stop thinking about how great Bud is doing over there in April - about how far he has come - about all the advances he's made.  Those things are important, of course.  But as you launch into summer, I need you to remember - REALLY remember something:

I need you to remember how stinking hard life is in early September.

This is not new.  You and I could have written this post virtually every September since  Bud started school.  And yet, somehow, the power and resolve we have in September to do things differently next year fades by the time we get to April.

You can't let that happen this time.  But don't worry - you don't have to come up with a plan on your own.  I'm here to help you - because from where I sit, over here in September, 2013, the answers are crystal clear.

I know you understand the perfect storm that is the late summer.  It's the time when Bud makes the enormous and exhaustive transition to a new school year.  Inevitably, he finds himself struggling to acculturate in an environment that is increasingly unfamiliar to him - an environment in which the developmental divide between himself and his same-age peers is even wider than it was when they parted ways just a few months ago.  As luck would have it, it is also the time when your workload at the college quadruples - when you are pulled simultaneously in multiple directions - when you are juggling metaphoric plates and extinguishing metaphoric fires and working around the clock.  It is the time when Bud's need for routine and structure and predictability is greatest, and it is the time when your ability to provide routine and structure and predictability is lowest.

It rarely goes well.

So I'm writing from here - where, as you know, things are not going well - to remind you that this is coming and to remind you that there are choices you can make differently.  Because I know you.  In the coming months, when you start to make plans, you will not recognize that you have choices.  You will try to do it all.  You will say "I am so lucky that Bud is doing so well that I don't have to worry that..."

Don't.

You do have choices.  Make them carefully.

He is doing well.  But a transition is looming and in the face of transition, he will backslide.  It is not your failing or his failing or the school system's failing.  It is because he has autism and transitions are hard.  He will get through it, but he will need your focus and your attention, and if you are busy channeling your focus and your attention elsewhere, he will flail even more than he has to.

So, right now, as you start to plan out the coming months - as you start to construct a complicated calendar of summer school and childcare and vacation time and workload -  I want you to start making choices.

August and September will be busy at work.  You can't avoid it.  But you have to - HAVE TO - sort out the "musts" from the "shoulds."  The musts are the pieces of your position that can't be done by anyone else.  They have to be your priority.  They have to be done well.  Structure your work time and your life so that they get done.

The shoulds are the things you think you should do to prevent someone else from feeling disappointed in you, or feeling unsupported by you, or feeling like you just don't care.  I'm telling you right now:  in late August and early September, there is no room for the shoulds.  You can only do the musts.  Accept it and stop feeling guilty about it.  (Or, as your old friend from grad school used to say, "Stop shoulding on yourself.")  Eyes on the prize here, sister.  Your boy needs you - not the exhausted, cranky version of you that emerges when you try to do it all, but YOU - rested, focused, and happy to see him.  You can't be that you when you try to do the shoulds.

I also recognize that in June and July, when you're planning your schedule for August and September. you will not be able to tell the musts from the shoulds.  But, believe me, I know the difference and I've made you some lists.  Please check your hard drive and then plan accordingly.

A few specifics that I'd like emphasize for you:

-  You may not work nights during Bud's first week at school.  No sitters, no making him stay at the office with you until 7:00, no working at the kitchen table before he goes to bed.  None.  I don't care what you'll miss or who will be left picking up the slack.  No matter who it is, I guarantee you that their coping skills and support systems are broader and stronger than Bud's.  No nights.  Period.

-  Plan ahead so that you can pick him up from school on the first day.  It will be his first day at the high school.  It will be the only first day of high school that he has in his life, and whether it's a great day or a terrible day, you need to be there at the end of it to process it with him.

- If this year is like every other year, Bud will go back to school for a few days and then have a four day weekend.  You will panic when you see this schedule, because you will believe that there is no way in the world that you can take any of that time off from work.  You will start planning to hire sitters to be with him for eight or more hours at a time, adding more transition and change into his life.  Don't.  Take the time off from work.  I'm serious.  It's April.  You have four months to plan for this.  You can do it.  So do it.

- Despite all your best planning - despite your focus, your resolve, and your four day weekend - the call will come.  Someone will tell you that Bud is struggling.  Someone will ask you to help problem-solve and strategize.  Bud will have a rough patch.  This is not a judgment on your parenting.  It is not a sign of incompetence from the team at school.  It is not because Bud is a bad kid.

Behavior is communication.  Listen to what Bud's behavior is telling you.  It will be telling you that change and transition are hard and there are things that he needs that he doesn't have.  Help him to get them, without blaming him, or yourself, or anyone else.  This should not be a surprise.  We should all have seen this coming.

Which brings me to why I'm making you open this way back in April and not later in the summer as you're really making hands-on plans for August and September:  I'm writing in April because I want you to talk about this at Bud's IEP meeting.  Remind people that the first weeks of the semester are going to be hard.  Remind them that his behavior might be extreme.  Remind them that no matter how solid his summer program is, he will not start the new school year where he left off last year.  He will backslide and regress.  He will also recoup and recover and make strides.  But if we want to raise the bar of expectation for Bud in the year ahead, we must start with a very low bar in its earliest weeks.  Success breeds success for this boy.  We can raise the bar incrementally over days and weeks and months, and I'll bet it will go higher than any of us imagined that it could have - but only if it starts the year very, very low.

Trust me on this.

Okay, that's it.  Except that, once September rolls around, if you find that this has been helpful, please revise it and send it to us in April, 2015.  We'll thank us later.

Good luck, MOM-NOS.  You can do this.  And Bud and I are counting on you.

All the best,

MOM-NOS

P.S.  I see you've lost ten pounds.  Looking good.