The Family Room

Happy now

When they finally got home last night, I was curled up on the couch, watching Atonement (which I found wildly overheated, actually. Kind of disappointing). J. brought the letter Isaac had dictated to his teacher in and placed it in front of me, and I started to read. Here's an excerpt:

"I want [teacher] to write 'Momma will come back to school.' I want [teacher] to write 'Daddy will come back to school.' Because I'm sad. Because I'm sad I want to go back home. I want to go back to [address] because I'm sad I wanted to go home and play. Daddy will come back to school and I will feel happy!

I feel happy now."

His teacher told me that he then joined the class, who were playing with paper pop-out letters. Here's what Isaac made:

In which I retire to my room with the vapors, my laptop and a dish of ice cream

If I were a 19th century lady of a certain age and class, I could simply retire to my chambers and let it be known that I am unwell and not accepting callers at the moment. I would read, and nap, and take my meals in my room, and write letters until my equilibrium returned.

As it happens, not so much. But J. took Isaac for a walk this evening so I could do just that, sweet soul that he is. Because it happened again. I Don't Want To Go To School: The Return.

Here's the (increasingly familiar) abridged version: get to front door of school, cry, fall to the ground, scream, resist, teacher carries him in, more screaming and kicking, hot, hysterical tears and wailing as I finally manage to leave. But it worries me, this idea that the morning is a minefield I need to pick my way through, step by careful step, lest we end up covered in boogers and emotional shrapnel.

Separation anxiety, folks. Pure and simple. Though, as we've all learned here at the School of Developmental Difference, nothing is simple.

There is, however, a pretty fine silver lining to this story, which I will now share in the interest of, well, reason for optimism (and not sounding like a total whiner.)

Not long after the dropoff (soon enough that I was still in tears, unable to answer the phone), I got a voicemail from one of Isaac's teachers saying that he was fine, and that she was amazed at the way he had processed his emotions after I left. It turns out that she had sat down with him and asked him to tell her how he felt. She wrote, he dictated, and she read him what she'd written. Afterward, one of his classmates gave him a hug.

This later email from the head of his school sums it up:

This level of emotional processing is thoroughly exciting to see, hear, witness. I listened as a fly on the wall to [teacher] and Isaac and was amazed to hear what he was saying, how articulate he was, how clearly he conveyed his emotions...He is taking his strong feelings, expressing them in a young way when you, his beloved mother is around, but then when the separation is actually over, he then reviews, reexperiences the feelings in a more mature way that will help him generalize how to handle other hard emotional situations. As hard as it is for you, and I don't want to underestimate it, I hope you are also thrilled with the leaps he is making..."

The teacher's voice mail emphasized how much Isaac had loved it when she wrote down his feelings. He was excited and fully engaged in the process, and kept referring to it throughout the day.

Imagine that. Writing down your feelings. To try to make sense of them. Brilliant.

Happy Mother's Day!

Sometimes, the envelope is even more exciting than the card...

Even when the card itself is pretty excellent...

Especially this part...

Happy Mother's Day!

Bumping into ‘NO”: Managing Tantrums in Kids on the Spectrum

By Lisa deFaria, LCSW, BCD, Faculty, ICDL (Interdisciplinary Council on Developmental and Learning Disorders)

Susan’s note: Lisa originally posted an earlier version of this on the Yahoo Floortime board. I thought it was so timely and helpful that I asked if she would be willing to let me share it with you all, and, lucky for us, she did.

As our children move forward developmentally, "typical" phases that were previously delayed may emerge. One example is the (so-called) "terrible twos." Many kids on the autism spectrum never had the "terrible twos," a time when children become more engaged in their world, with new-found communication, mobility and intentions ("I want”/”Me do it...")

So when parents start reporting to me that their child is tantruming and oppositional and won't do what they say, I say "great!” The child has moved beyond the earlier, more disconnected, passive or self-absorbed phase and demonstrated that he is "cooking." It's when a child doesn't move to this phase that I am concerned.

Of course, with these changes, the child is, perhaps for the first time, bumping into "NO."

Now we have a new set of challenges--not bad, just different. As your child moves forward into this phase, he is also much more aware of the complexities of his environment, the expectations of others, the world moving too fast, too loud, too bright around him. Though he now understands far more language, he may be slow to process it, and many adults forget that the child can't take in a wall of words.

Motor planning, still often immature, becomes frustrating for your child, for how exactly is little Johnny going to get from here to there? A profound desire to be "in control" kicks in, as though saying, "Wait a minute! Slow down!!!" So many kids in this situation need to put their brakes on and try to hold onto control, particularly during transitions (into the car, into bed, out the door, TV off...).

Sensory issues may also be involved. "No" for our children is a bit of a different experience than it is for a typically developing child. With awareness and engagement with their environment, often more sensory issues emerge during this phase. This can create a very challenging pattern of behaviors--look at how many transitions occur in any given day!

A child at this phase needs a lot of transactional support to help ease his movement through the day. You have to experiment with what will work.

Friday night and the gang's all here

I'm sitting in the living room, my monitor the only light. Outside the window, I hear the low thrum of cars passing by. The heat kicks in with a soft whoosh. It's a rare moment of calm.

I took Isaac to dinner tonight, while J. went to a colleague's retirement party at school. We sat at the Pac-Man table, munching chicken (for him), a burger (for me) and fries (for both of us). At times like this, I feel a heightened sense of awareness of who we are: a young boy and his mother out for a meal together. It feels both reassuringly normal, and slightly momentous: will he slip? Will there be a tantrum? Or will we sit companionably, Isaac sneaking fries off my plate when he thinks I'm not looking? I wanted the older couple at the next table to notice him, to comment on his near-perfect manners: to see what's under the waterline and tell me that we're going to be okay.

I don't know why, but it seemed important tonight somehow.

Isaac's eyes welled with tears this morning as I dropped him at school. Even now, when most children are well past the separation anxiety, I can feel his tug of uncertainty as I pull away for the day. Can't it just be like this, me sitting in your lap, you smoothing my hair and telling me silly stories? Do you have to go to work? Won't you just take me home, where we can play and nap and shut out the world together?

It's almost eerie. I remember that feeling as a child: the sense that the rigor of daily life was just too much sometimes: the discipline of up, shower, dress, eat, pack lunch, go, sit, sit, recess, sit, eat, sit, sit, home, play, dinner, dishes, bed--too complicated and deeply, deeply unfair. I feel that way still.

And it makes me wonder about the true impact of Isaac's challenges: whether, as he grows older and builds his capacity to cope with the barrage of input that comes at him from all sides, he'll emerge even more, become even more expressive, loosen up and start to communicate more fluidly and with less anxiety. I don't know. I hope so. The milestones are coming, even if sometimes they appear as if in a funhouse mirror.

Tomorrow we have a few plans. We'll take it easy. We are trying so hard not to limit our life, not to set too many tight boundaries, even as we vow not to bombard him. The line shifts daily, even hourly.

We pick our way over the path, sliding on the gravel, avoiding the larger roots, an occasional stumble, an occasional sharp pebble in the shoe.

Drifting along with the tumbling tumbleweeds

A long, spiky week full of highs and lows, crackle in the air like high desert, a dry lonely wind, and nary a post in sight.

Hi.

I do this sometimes, you know, in my so-called "regular" life. I go underground and need to, I don't know, disappear, get some perspective, hibernate. Or it's just hectic, or I feel guilty for writing about Isaac when I could be playing with him, or hanging with J., or, as is most often the case lately, trying to catch up on my sleep.

Tonight I saw the head of Isaac's school at a meeting, and she offhandedly commented that this time of year you see a lot of tantrums and a lot of behavioral leaps from the kids. Why didn't I know this, I wondered, as I recalled last Friday's nuclear meltdown: an hour in front of the dry cleaner's as Isaac refused to go to school, followed by another forty minutes as he howled and wailed and fell to the street.

I was good. I was patient. I was a model mom. I ignored the stink-eye from passersby, sure that I was doing some horrible bad mom thing that had clearly come home to roost. Or maybe I was just imagining it, because I'm a little oversensitive that way.

I knelt down in front of Isaac, took his face in my hands. "Isaac," I said, "You are a big boy. You know you need to go to school. Then Daddy will pick you up and you can ride the elevators with him later."

"I want to go on the elevator NOW!!!" he wailed, his body a ball of tensed, vibrating muscle.

"Sweetie, I know you are upset and want to go on the elevator now. But it's a school day."

"It's an ELEVATOR day!!!"

"You can do this," I responded, my voice a soft whisper in his ear, urging him to listen to my tone, if not my words.

"I CANNOT!!! I CAN'T!!!" he wailed.

I felt hot tears spring to my eyes. Don't overthink this, I thought. Just...don't. But I couldn't push it from my mind. He's never said that before. And I wondered whether he's formulated this thought to himself before: I can't do this.

It broke my heart.

Later, after I had severely compromised my "model mom" status with some ill-timed yelling and at least one involuntary F-bomb (ugh!), I finally got him through the school door and, urged by the teachers, left. My clothes in a sweat-soaked mess, my hair blown wild by the wind, I sat in my car and just listened for a moment to the blood pulse-pounding in my ears.

Don't overthink this, I thought. It's just a tantrum. It's not prophecy. It's not Shakespearean foreshadowing of some horrible thing that will happen in Act III, just as we're thinking we're out of the woods. Know it for what it is: a very overwhelmed, very angry, very frustrated four-year-old boy.

But I couldn't shake it. Not then.

An hour or so later, my phone rang. "He's fine now. He's having milk and cookies in the kitchen, and he's telling us that he's sad that you said goodbye, but that Daddy will pick him up later."

I think he bounced back faster than I did, the little stinker.

*
I don't know about you, but I don't think I can take any more studies revealing that maternal mental illness, vaccines, television, cell phones, or, who knows, hearing the collected works of Andrew Lloyd Webber in utero (though that last wouldn't surprise me) causes autism. I just can't. Can we call a truce for a while? Please?

In the meantime, I think I just need to read Emily every time a new study comes out, so I can be sure my science comes pre-analyzed and pre-debunked by a trusted source.

[Oh, and random factoid: a casual Google search tonight of the terms "autism cause" returned a mere 619,000 entries, dwarfed by the whopping 112,000,000 returned for a search of "Britney Spears." So don't even begin to tell me what that says about our culture's priorities.]

*
Finally, and without too many details, we had our very first actually successful playdate yesterday, by which I mean that Isaac met a new child and new parents in a new house, played with the boy (a little), laughed with him and seemed to enjoy himself--for quite a sustained period. It helped that the parents were delightful, the boy was gentle and tolerant and funny and sweet, he had exciting toys, and there were plenty of opportunities for breaks when Isaac needed them. We were genuinely sorry to leave, and Isaac remarked in his bath last night that he wanted to go back to their house. As did we.

Wow. Don't want to jinx it, but it seems...promising.

Please be patient with me. I'll try to keep the tumbleweed to a minimum this week.

Call to inaction

It's the last day of Autism Awareness Month and I wanted to end the month with something uplifting and inspiring. Instead I wrote this.

So, in the grand tradition of passing the buck, I direct you to go read Emily, who is cogent and passionate and funny and fierce and smarter than any human mammal has a right to be.

As time goes by

J. and I have a new ritual in our rare times away. We've been going to museums; partly to see the art, and partly to have a peaceful place to talk. There's something about museums that calms us both and shakes loose a bit of perspective.

Several weeks ago, we took a walk among the cool granite walls of the grandly named California Palace of the Legion of Honor, and had a chance to see a fragment of the Dead Sea Scrolls on loan from Israel. It sat, just a tiny fragment, in a dim recess, illuminated by the slightest hint of light. It was magical, and a little spooky, to see something so ancient and yet so unprepossessing, and know that it was written nearly 2,000 years ago. I kept thinking that, as Bogie so memorably said in Casablanca, "the problems of three little people don't amount to a hill of beans in this crazy world."

I snuck away briefly today to go to an open studio on my own and visit a painter I admire (more on that in a future post). But some of the most memorable art of the day was on the outside of the building--a mural that I couldn't resist photographing.

Tomorrow we're planning to take Isaac out and see the Gilbert & George exhibit at the de Young.

*
It was an edgy day, brightened by the fact that Isaac read his first story: "Once upon a time, there was a boy, and he was very sleepy so he went to bed. The End." Now, as my eyes droop shut, I think I'll do the same.

The End.

Shakespeare's birthday, and other stories

"There is nothing either good or bad, but thinking makes it so."
Hamlet, Act II, Scene II

Back in the early days following Isaac's diagnosis, J. and I spent a lot of time wondering what exactly we were to do with this new information about our son. Should we accept that it would always be hard for him to...? That he might not...?  That he would never...?  Should we accept anything, in fact?  Or should we just proceed with our lives, getting him all the therapies he needs, but in an emotional state of suspended judgment?

And then there was the creeping dread that we, who so love language, and books and reading--who can't stop talking, for heaven's sake--would be facing a future with a child who couldn't communicate with us. It seemed sort of Greekly ironic, a bad cosmic joke.

It turns out we were very, very wrong.

The truth is, Isaac loves language.  Loves communication.  Loves rhymes and silly songs and word substitutions and the surprises that words make when the sneak up on you from behind. 

From his earliest days, he'd laugh when he heard a new word, and later, laugh and repeat it--endlessly.  This last weekend, as we horsed around on the bedroom floor, I asked him jokingly, "Isaac, do you want some proprioceptive input?"  "Yes!" he crowed, giggling madly.  "Popoceptive...input!" 

Tonight, as J. shepherded our tired boy home from a luxurious dinner of chicken and fries, Isaac insisted that Daddy pick him up.  "Isaac, you're very heavy.  You're the biggest boy I've ever carried,"  J. said, scooping him up.  "You're not a small boy," Isaac answered, smiling.  "You're not a teeny-tiny boy.  You're a double boy!"

Double boy.  Okay, forgetting the pronoun confusion for a second, consider this: from a child who is supposed to be unable to understand anything but the most literal language, that's a pretty clever image. 

Said more plainly: thems are fightin' words.

P.S. Today is believed to be the birthday of William Shakespeare, who is responsible for so many of the phrases--even words--we utter every day.
On behalf of my son, born a mere 439 years after you, Happy Birthday, Will.

 

This is the expression...

...that, early on, so many evaluators never got to see. It's the expression that tells me that, even if he can't always express it, there's a keen, Pythonesque sense of humor at work in my son.

P.S. We did have sort of a savant-y moment this weekend, when Isaac thought it would be fun to count from one to nine. In German. Using only odd numbers.

Come to think of it, he had this same look on his face then too.

Okay so maybe I overdramatized a little...

...but we were all hecka edgy this morning, most notably Isaac, who informed J. that he was worried about going to his new school today. Worried.

Of course J. and I were delighted, because our lives are a grandly perverse science experiment in which we are both the lab rats and the scientists, endlessly jotting down our observations on a legal pad, chewing thoughtfully on the pencil eraser.

"Worried. Have you heard that before?"
"Nope. Have you?"
"Nope. It's great, isn't it?"
"Yeah."

And isn't it bizarre to think so.

*
After a few false starts, we finally managed to get Isaac dressed, with the help of many fulsome promises that he would have at least one elevator ride before we went to the new school open house. He was pretty reluctant, but a few rides and two cookies later, we were primed and ready for action.

He held J.'s hand as we walked from the car to the schoolyard (my heart tight in my chest, trying not to feel the weight of such a rite of passage, just to go with it, let it happen). He sidled through the gate and made a beeline for a clutch of kids playing with bubbles. He stayed there for a time, crouched down, happily blowing bubbles with the other kids, then edged over to the food table, where he availed himself of a rather large doughnut before hitting the climbing structure.

My friends, it was awesome.

J. and I introduced ourselves to some of the parents, the principal and a couple of the kindergarten teachers, one of whom was kind enough to give Isaac and us a guided tour of the classrooms. He wandered into each in turn, curiously examining the art materials, toys and books.

"Today's not a play day, sweetie, just a looking day. So no touching the toys."

He was fine with it.

One of the classrooms had a centrally-located "word wall" where they had organized a number of simple three-to five-letter words, arranged by letter of the alphabet. Isaac wandered over and traced his fingers along the words, spelling several of them aloud as he went.

"P-L-A-Y." Play!"

I admit, I don't want to be one of those parents who ostentatiously parades her child's accomplishments to anyone who will listen (yes I realize I am a hypocrite--here I am blogging about it after all) but...I was so damned proud of him. For spelling, sure, but mostly for working through his anxiety. For getting into the action with the other kids. For giving the whole thing a try.

He had a really good time. When we left, he said goodbye to the teacher who had given us the tour, and waved bye-bye to the school.

I burst into tears in the car on the way back.

I'm not a superstitious person, usually, and I know we're in for a big heap of change in the next few months, but I'm going to take this as a good sign.

Brave New World

This morning, our little family is going to a "playdate/orientation" at Isaac's future Kindergarten. It's just the sort of casual, "just drop by and play" affair that usually sends us into panic mode. Will he flee? Will he run the perimeter? And, reading the tea leaves in every situation:

What does it mean for the future of humanity?

We've already started the beginnings of a social story to prepare him (and us) for Kinder. We've heard it's a warm, involved community. It even has a Yahoo group!

But it's new. And new is, well, challenging for us.

Cross your fingers.

The Sunday Slide

A spectacular day today: sunny, warm, breezy, so not your usual San Francisco April day. Isaac had been edgy all weekend, and since we didn't want to get kicked out of any more hotels, we thought we'd rely on our three most powerful tools in the global war on meltdown: protein, humor and exercise.

We took a walk, during which Isaac chattered happily about anything and everything that caught his attention: buses (of course), people, dogs, porta-potties (all, thankfully, padlocked). As the map on Dora the Explorer would say, "Say it with me: Spontaneous. Meaningful. Language."

We crossed into the Presidio and took the footpath, making our way over rocks, branches, and beds of pungent eucalyptus. As we rounded the last curve, the Palace of Fine Arts came into view. Suddenly, Isaac announced he wanted to go to the Exploratorium--a place with mixed memories for us.

First, imagine an environment that is completely devoted to engaging the senses. Then mentally fill it with tourists. Then go back to the sensory part. Would it surprise you if I told you we had to carry Isaac out bodily the first time we went because he just could not stop stimming on a series of spinning disks? Would it further surprise you that we have a family membership? Yes, we are masochists. But over time, as Isaac has matured, he's become able to sample more of what the museum has to offer, and to stay regulated (mostly) and have a good time.

That's not to say it's a perfect experience. The transition from exhibit to exhibit can be tough. He's not the suavest turn-taker. The elevator is a highlight, for no other reason than that it's...an elevator. After a time, we managed a quick lunch and a successful trip to the bathroom, where we met another one of our people. She totally twigged when she saw him with his hands over his ears.

I love those complicitous smiles: we're everywhere, aren't we?

The highlight? the big bubble exhibit. Check out that expression as he huffs and puffs and blows the house down.

Spring is in the air

An up-and-down week. On the upside, we had Isaac's IEP (did you ever think you'd hear me say that?!?) The truth is, he's growing in so many areas: interpersonally, communicatively, intellectually. He can sight-read simple words and sound out longer phonetic ones. He's big on kissing lately, loves stories, and is a world-class ham: he knows when he's said something funny, to the extent that he repeats it until the last laugh is squeezed out of the room. But the "stereotypical" behavior continues: we continue to see flapping, perseveration (around buses and elevators, most particularly), and a lot of anxiety about noises.

But oh the moods on that kid. I see him starting to try out ways to cope: today, for example, my Dad was here and so we went to the Farmer's Market while J. took a much-deserved break. Isaac was a bit edgy, wanting to ride the streetcar, so I tried out my new gambit. "Okay, pal," I said, "Here's the plan. First we go to the Farmer's Market, then we get you some bread, then we buy some food, then we go home, and you can ride buses with Daddy."

He considered it for a while, repeated it to himself a few times, and was fine. Absolutely fine. It seems that I got the better part of the deal today, since J. and later Beata weren't so lucky. But what makes me optimistic is that I see him trying to find a way to cope with unexpected or difficult situations. As they said in his IEP, his tolerance for frustration is increasing. Now if I can keep mine from eroding, we'll be in business.

Sort of as a PS, you have to read this post by MOM-NOS. To me, it's a sign that Spring is on its way.

A picture tells 600-800 words

Because I am too tired and jet-lagged to rub two brain cells together, let me just say:

1. Coming back after a business trip to hear the pound-pound-pound of my son's footsteps down the hall;

2. A big hug, luminous smile and a loud, wet kiss on the cheek;

3. Companionably munching two enormous slices of gooey pizza while we gaze out the window at the passers-by;

4. Being woken up this morning by the following words: "Mommy, would you get out of bed, please?"

5. Realizing after I got home from work that he's just told me--in a reasonable amount of detail--what he did today;

6. Listening to his soft, regular breathing as he drops off to sleep;

7. Being married to the grand master of QAP;

8. Powerless to find the words.