Monday, August 18, 2014

Let Go or Be Dragged.

"Let Go or Be Dragged."
(Attributed to a Zen proverb)

As the youngest child in our family gets ready to attend middle school in the fall, I want to post and re-post this video until everyone sees it and internalizes it:  Ethan and I put this together one day, years ago when he was home sick in the third grade.


Despite this big, looming transition in September, this summer has been one of our best ever. But it has also been one of the hardest.

I find myself internally clinging to the last weeks of carefree, total abandon that comes with having to answer to no one about my children's participation in school. No homework due, no missing art fees, no IEP meetings, no phone calls about missed meds, no emails about what to do when a new behavior crops up, not even a measly picture day reminder slip.


The break is welcome and happy, the kids are tan from playing outside and snuggly with sleeping in daily. Yet I have an underlying feeling of dread that casts a cloud over all of this fun.  
Normally by mid-August I am so ready for the short bus to come on up the drive and start a comforting routine. However, this time I am not.

In fact, I'm sort of a mess.

I wake up with sore jaw muscles that come from clenching my teeth as I sleep. I find it hard to focus on my work. I cry easily and am cranky with family. I'm not living in the moment as much as I am holding on to it as tightly as possible before things have to change.

Just a few weeks ago, we hosted a small party to say thanks and goodbye to special education staff at Dan’s elementary school—some of whom have worked closely with us for the past nine years (since Ethan was in preschool). Now that we’re moving on, my husband and I wanted a chance to convey our gratitude, pamper them with gourmet food and chat informally outside their professional "roles."

I was also hoping it would help me feel better. 

It was a lovely evening with some of the nicest people I will ever have the chance to know. When they arrived, Dan started running happily around the living room. When his teacher left last, he quietly watched her car disappear down the driveway. And then he whimpered, leaking a few tears. And then so did I.

I thought: "Who will ever love him like that again?" This staff and I have been through so much together. We've cried on hard days and celebrated so many milestones, years of notes, pictures, stories, and laughter—like a family. I am sad to say goodbye and scared to let go.

I worry that middle school presents opportunities to practice "grown up" social norms, which is important but challenging as even typically developing kids face frequent drama and heartache during this time of life when they are figuring it out. (Do you remember middle school? You couldn't PAY me enough to go back there.) How on Earth will Dan survive with any social success? That video was really cool in 3rd and 4th grade classrooms, but will it have the same reception with the older kids? Will they be more worried about "fitting in” or more sophisticated at hiding cruelty?

And I worry that new staff and teachers won't "see" Dan for who he is. Will he be able to become part of the larger community as he was in primary school? Will he be included and appreciated in his home room AND his special education room?

I also am beginning to realize that my ambiguity about this transition is about so much more than moving schools, leaving old friends behind and new challenges.

It's about beginning to let go of our "little boy". The new school seems daunting, so much less nurturing. I know this is appropriate and that it's time for Dan to need less nurturing.  The things that are acceptable and maybe even “cute” in an elementary school kid are often "weird" and unacceptable as kids approach puberty. We must begin to learn to see Dan as someone who belongs in this new setting and not try to protect him from all of the world's scary things. This is part of growing up for all of us.
It's just so much easier to think of having him as a child forever.
We know this life. We are (most days) competent at this life. But life with a teenager or adult with Autism is uncharted for us. This transition is just the beginning, a symbol of the impending future. How will I make that transition as more questions about Dan’s future emerge?

As summer progresses and I continue to lay awake nights, I talk to a friend who can relate, as her now-teenager with autism is moving into high school this fall.
"We’ve had several people along this 'journey' that we've had to say goodbye to." Kari texts in response to my sad little text bubbles.  "Feels like a break up."
As usual, she nails it. It totally feels like a break up. A type of deep ache I haven't felt in a long time.
And with a breakup don’t we always wonder how a new relationship could possibly compare to the one that has just ended? Will I be able to build meaningful relationships with new people, teach and then trust them to really “see” my kid?
Kari knows the amount of emotional energy and time it takes to forge ahead with a new group of people who don’t know Dan. She texts: "Dan's got the magic. The new people are gonna fall under his spell too. " We've found that we always seem so crazy to people at first as we impatiently wait until our child chooses to show his internal brilliance. The look on their faces is always vindicating when it happens.

No matter how much angst I feel, I have to move on, as does he. I have to accept that he is growing up, and that things will get harder before they get easier and that we will run into misunderstandings, bullies, puberty and heartbreak. I have to let go and since I'm not the kind of person who can stand back and be hands off about it, I'd better just put my big girl pants on and get going.  And I will.

But for the moment, how can I keep this from killing the rest of the summer?
I go back to the breakup feeling. I think back and remember what I've said to the multiple 20-something sitters and therapists who've cried in my kitchen:
Take some time to be by yourself.
Journal, play, fill your time with meaningful work. Heal.
Then go out, open up your heart again, because it’s totally worth it.
Don’t compare. 
Learn what YOU need in a relationship and be honest about it.
Find out what they need.
Don’t rush it.
You’ll know when it’s right, it shouldn't be too hard to make it work.

I should take my own advice.
I'm starting by writing this. I’ll spend these precious last weeks playing, and being by myself when I can. Then I promise to give it time and be honest as possible about what we need to make it through the next year. I will try not to compare. I will ask what they need. I will be patient and I will open my heart to new, awesome people in our lives and the changes coming for Dan.
I’ll be thankful that this is just one anxious mom's "first world problem", and recognize it as a rite of passage for many, many parents out there. I will remember I’m not alone.

We will be all right. We’ll rebound. 

( a shorter version of this blog post is also on

Tuesday, August 5, 2014

Helen Keller and Annie Sullivan; Who's next for me?

These two. They just blow me away. With their two brains working together they were unstoppable. 
Thank you, Annie and Helen. You showed 'em.

Helen and Annie

When I was 16, I auditioned to be Helen Keller in our high school's production of  The Miracle Worker, a beautiful three-act play by William Gibson based on Keller's autobiography: The Story of My Life.

It literally changed the path of my entire life, thanks to a brilliant teacher and director, LouAnne Durham, who could both 1) Manage to organize the circus of hormones called Teenagers in Drama, and 2) Create something beautiful out of our chaos using a great script, her own skill, extreme patience and sheer tenacity.

 She made us do more than just recite lines and learn blocking. She talked to us about the relationships between characters. In preparation even before practice she challenged me to experience life in different ways to get a hint of what Helen may have felt. She had me wear vision occluding goggles to navigate the high school halls during practice, watch T.V. with the sound off, load the dishwasher at home with my eyes closed. She also had an O.T. visit during practice one night to teach us finger spelling and talk to us about working with children with disabilities.
"This is it." I thought that night sitting in the front row on the creaky, faded, patchy velvet seats of the Little Theater listening to the occupational therapist talk. "That's what I want to spend my life doing."

And so I did.
It's funny how life comes in circles. I've been several characters in that play now. As an awkward teen I played Helen, stumbling blindly and impulsively to adulthood. Then fresh and green out of grad school I worked in a school with a little girl who was visually impaired. She hit me during lunch, poured her milk on my new sweater and it went right up my sleeve as we struggled to sit at the table together and eat with a spoon.
"Wow!" I thought. "This is just like Helen and Annie! I've made it! I've come full circle!"

Yeah, it's funny how life comes in circles and bites you in the butt sometimes coming around that back curve. Now much of the time I'm playing the role of Kate Keller, Helen's mom.
Kate's character in the play is anxiously protective of  her child but desperately trusts in Annie's --and Helen's-- abilities. She finally learns to relinquish control of Helen's life and let someone else be "that person"  who is the bridge to the world for Helen. As she internally struggles, she gently and firmly leads the rest of her family down this path, which they are totally guarded against for fear of being hurt once again.
Ultimately, no one believes in Helen more than Kate, who didn't take no for an answer when "experts" told her not to bother. She appears wispy and emotional, fluid and meek, but is in reality a quiet rock as Annie struggles, Helen rages, James skulks and "The Captain" blusters around her. (Aunt Ev offers advice, a lot.) She enables the rest of the story to move forward, even though it breaks her heart.
In theory she knows what Helen can be, but in practice it is scary for her to let her child struggle to get there.
As I learn to let go and trust those who can help Dan to be everything he can be, I have to relinquish control of some things. Okay, Lots of Things.  So now I aspire to be Kate. She was a brave lady and a quiet leader.

 I can't say that I've ever really been or ever will presume to be an Annie Sullivan. I've helped a lot of kids in my career so far, but that relationship, those two together is a mighty force of nature. Watching the two of them, so brilliantly play off of each other, so aware of their mutual mission and presentation, it is just humbling.
It's true also that their magical pairing was a perfect aligning of the stars involving many factors such as the timing in Helen's development, family financial support, emergence of societal change for women, and two people with the brains and drive who were compatible. Both of them deserve the credit of Helen's success, as does everyone in Helen's complex family.

Which character will I play in the next round?
Maybe the next circle around I'll be Aunt Ev, shaking my finger and eating pickles, offering lots of advice. She's not so bad herself.