Saturday, March 29, 2008

The Power of WH

Ben and I just returned from Minnesota where we spent his spring break visiting my parents. I was pretty nervous about traveling with him by myself for the first time, something I feel embarrassed to admit when I see mothers traveling alone with tiny newborns or with multiple children under 5.

But the last time we took Ben on a trip was back in August and it was during a period that was extremely difficult for everyone. I don’t know if it was being away from his preschool that provided the predictability and structure he needed, or natural growing pains, or some combination of factors.

In any case, this was a time when he was having multiple tantrums each day. He hit us, he scratched us, he knocked our glasses off our faces and across the room, he threw things and attacked other children – sometimes without provocation - at preschool. These were dark days.

So in preparing for the trip I couldn’t help remembering how he had freaked out at the airport when we checked our suitcases, panicked as we stood waiting in the crowded jet way, bolted away from us in the security line, and even run up to an unsuspecting business traveler in a suit and shoved him.

And though I’m aware of the tremendous progress he’s made in the last six months, I prepared for our impending trip with trepidation.

But Ben was amazing.

Except for some nervousness about where our suitcases were going and some impatience while waiting at the gate during a short delay, he rose to the occasion, full of good spirits and enthusiasm.

A lot has changed since we traveled eight months ago, but I realized on this trip that one of the reasons why the trip went so well is that now Ben is able to ask questions.

He started to ask questions using who, what, where, when and how just a few months ago (why, I’m told, comes last for all children). The absence or late appearance of these types of WH questions is one of the indicators of an autism-related speech delay and extremely common in children with Hyperlexia.

I remember a co-worker saying to me, when she learned that Ben was 3 years old,

“I bet he’s constantly asking you ‘why?’ isn’t he? My son would not stop at that age: ‘Why this? Why that? Why? Why? Why?’ It drove me crazy!”

“We’re not quite to that stage yet.” I demurred.

Ben’s ability to ask questions started at first like a trickle, and then recently, turned into an avalanche.

This was in evidence during the trip.

“Where is the airplane?”
“How do we get to the airplane?”
“Which way should we go?”
“What is a gate?”
“How do we get our suitcase?”

I hadn’t pinpointed the addition of questions to his vocabulary as having such a dramatic effect on his behavior until part way through the trip when I was comparing how he responded in the same situations eight months ago.

Back then, his most-used phrase was “I want.” “I want to go on the airplane.” “I want the people to move.” “I want to let Mommy carry me.” “I want to go home.”

Last summer, he also used “I want” to express frustration and anger in a kind of cathartic-imaginative way. When the demand, “I want the people to get out of the way.” went unmet, it became:

“I want to hit the people. I want to scratch ALL the people and the people will all get big, BIG owies and the people will all be really sad.”

Pitty the poor bystanders standing elbow to elbow in the jet way who overhear this. If it were a 25 year-old instead of a 3-year old, it’s likely TSA would have been involved.

When he could only say, “I want the suitcase,” to express curiosity or uncertainty about our luggage, we responded – even subtly and subconsciously – with a sort of defensiveness that I’m sure was apparent to him.

“Oh no – he wants the suitcase. We can’t get him the suitcase. We’ve got a situation here. Stall. Distract. Don’t panic.”

When you only have “I want” to express yourself, you don’t have any way to enter into dialogue. “I want” is the blunt instrument of conversation – it's useful, but extremely limited.

Seeing the stark contrast in his demeanor now that his speech is peppered with questions makes me wonder about the ways in which language and thought are intertwined, and even the ways in which language and emotion are intertwined.

Now that Ben can ask, “Where is our suitcase?” we can respond with an explanation:

“It’s in the downstairs part of the airplane and we’ll get it back when we get to Minnesota.”

“Where is Minnesota?”

“It’s way down there on the ground.”

“How do we get to Minnesota?”

“The airplane is taking us there right now.”

Not exactly My Dinner With Andre, but a conversation.

Questions allow Ben to enter into a conversation with us that involves information and explanation instead of just emotion. These types of questions, it seems, are the gateway to reason and logic: destinations that seemed like foreign lands to us a year ago.

So, ask away, Ben. Bombard me with questions. You will NOT drive me crazy.

Not yet, anyway.

snow.JPG

Ben encounters snow for the first time.

Saturday, March 15, 2008

Tagged!

Being fairly new to blogging, I was flattered when Jennifer of GoodFountain tagged me recently. We discovered each other since she writes about, among other things, life with a not-so-ordinary kid. We both agree that her daughter Chee is Ben's female doppleganger.

Tagging is a kind of blogging chain letter, only it's not insipid, and no one threatens you with bad luck or a horrible death if you don't respond.

Here are the rules of this tag:

A. Post these rules at the beginning of the blog entry

B. Answer the questions about yourself

C. Tag 5 people, let them know in a comment on their blogs that they have been tagged.

I'll admit I procrastinated quite a bit before writing this. See, when I started this blog, I had no intention of writing about myself, except indirectly through chronicling our journey with Ben. So I feel a little self-conscious about stepping into the spotlight.

So, dear reader, here's a diversion that goes a little something...like...this:

What were you doing 10 yrs ago?

I was working as a training coordinator at an organization in Berkeley that runs schools that serve children with, among other disabilities, severe autism.

I learned a lot about autism and related conditions while I worked there, even though I was not working in the classrooms. I think this experience helped me identify and name some of Ben’s early signs and symptoms - echolalia, a narrow range of play activities, repetitive behaviors – and seek out an assessment earlier than I otherwise might have had I not known much about the condition.

Snacks I enjoy

French fries

Melted chocolate and banana slices on graham crackers

Edemame

Good sharp white cheddar on crackers

Egg salad scooped up with potato chips

A homemade lemon bar with a strong cup of coffee

Five things on my to-do list today

Laundry

Call our electrician about installing new lights on our front porch

Finally finish Beth Lisick’s very funny book, Help Me Help Myself

Schedule my first mammogram

Write this blog post

Things I would do if I became a billionaire

Take care of my immediate family’s current and future debt. (houses, schools, college, retirement, elder care).

Travel the world with Chris and Ben.

Build an eco-friendly, prefab modern home someplace fabulous like Hawaii.

Set up an endowment/foundation to make lots and lots and lots of small grants to teachers, librarians, community activists and anyone who has a creative idea for a project that involves kids.


3 bad habits

Emotional eating

Comparing myself unfavorably to others

Feeling guilty

5 places I have lived

Anoka, Minnesota

Evanston, Illinois

Chicago, Illinois

San Francisco, California

Oakland, California

Jobs I have had

Waitress

Public Relations Coordinator

Office Temp

Adjunct Faculty Member

Instructional Designer

Learning Strategist (glorified Instructional Designer)

Independent Consultant

Mom

Things people don’t know about me

I love amusement park rides, but there is NO amount of money you could pay me to go in a Haunted House.

I really enjoy Iron Chef America, even though I know it’s preposterous.

On the Myers Briggs scale I’m an INTP, but years ago, I was an INFP, which basically means as I get older, I’m becoming less warm and fuzzy and more of a hard-ass.

The NPR show Car Talk makes my skin crawl. (I know, everybody LOVES it but me.)

I would love a second career as a food and travel writer. (Wouldn't we all.)

No place that I've lived as an adult has really felt like HOME to me (even though I've really loved everywhere I've lived). And I keep wondering if I'm going to find that place, or if that idea of the perfect place - one's true home - is just an idealization.

I would really like to start going to church again and singing in a choir.

~~~~~~~~~~~~~~~~~~~~~

So there you have it. My own little Web 2.0 Dewar's profile.

I hereby tag the following:

My husband, Chris, who when taking a break from video blogging occasionally writes pieces on his blog, Spexious.

My friend Linda, who is a wonderful writer as evidenced by Waiting for a Train.

My friend Tom, who keeps me supplied with daily pop culture candy, internet junk food, and a piping hot sterno tray of bizarre media happenings on Spectacular Self-Indulgence.

Eileen, who, besides being Ben's Nana (Grandma for all of you non-East Costers) writes about life as a cancer survivor, grandmother, and fabulous ballroom dancer, among other things at Soul Dancer.

Finally, just to involve the whole family, my brother-in-law, Tim and sister-in-law Deirdre. (Hope I haven't broken the rules by technically including 6 people.) Both are regular contributors to Bloggnabit.

Thursday, March 13, 2008

Progress Report

It was exactly a year ago that we got the results of Ben's first formal assessment from our local school district and the recommendation that we enroll him in a language-enriched preschool program that's part of a nearby elementary school.

So last week, on the year anniversary of Ben entering the special education system, we had our first IEP (Individual Education Plan) meeting with his teacher and speech therapist.

Now, if you've read any parent-generated internet content about IEP meetings, you might think of them as some combative, adversarial, tense, or at the very least, unpleasant event. But that hasn't been our experience.

We love Ben's teachers, and our meetings, including this one, consist of regaling each other with stories of Ben, laughing with each other about his antics, and generally conducting a meeting of the Ben Fan Club.

But it's more than just that. The program is wonderful for Ben and his reports indicate that he's made incredible progress this year, which we've known all along.

So, as a testament to the power of skilled teachers and early intervention, here is a comparison of his initial assessment report and an excerpt from his recent IEP report:
3/9/07

Reuben is a sweet and active little boy who typically does not interact with peers or adults and is self-absorbed in his own world.

Ben presents with significant deficits in the area a pragmatics or language use which are negatively affecting the efficiency and effectiveness of his communication acts and his ability to make appropriate social contact with others.

While some interest in others is evident, Reuben's social interactions appear highly limited. Nonverbal behaviors to regulate social interactions and signs of emotional reciprocity were not apparent in typical manner expected for children his age (e.g. lack of eye contact and facial expressions showing interest in the feelings and reactions of others, preferring solitary activity, using others as tools.)


3/9/08

Ben enjoys coming to school and being around his peers. He greets his teachers and friends each day with a smile and kind words. Ben enjoys reading and participating in circle activities that involve letters, numbers and language and reading.

Ben has a fantastic sense of humor and enjoys making others laugh.

While Ben used to prefer to play by himself, he has begun participating in play activities with his peers and he has even begun to initiate such interactions. Ben likes to please adults and usually serves as an excellent behavior model for other students.

Wednesday, March 12, 2008

Improvisation

Ben still sticks pretty close to scripts that he's memorized when he's playing, but one night recently, he had a burst of creativity. I ran to the keyboard to type up what I could remember as soon as he finished his story but I'm not sure I'm doing it justice:

Murdoch was puffing along his branch line. He was headed straight for a tree.

"Oh no, look out!" Crash!

He was covered with leaves and water. He felt very...comfortable. He needed to find a water tower. He found a water tower and some water poured down on him.

The workmen were so embarrassed. They needed to clean him. They gave him something very fluffy. He got all fluffy until he looked like a big... fluffy...pig!

Monday, March 3, 2008

Good-Bye to Chomper

Author’s note: The account of our most recent milestone is unbearably long. Don’t say I didn’t warn you.

Ben never wanted a pacifier as an infant. I would attempt to put one in his mouth and he would always spit it out immediately. But around the age of nine months, he was having intense teething pain (His first tooth came in at four months. Yes, ladies: ouch.) and he was gnawing on his hand so ferociously that I thought he would break the skin.

So in desperation, I took one of the discarded pacifiers I received in numerous baby shower goodie bags and gave it to him.

He shoved it to the side of his mouth and chomped happily on the silicone like an old guy chewing away on a stogie. It worked, and the pacifier became known hitherto as chomper.

Of course, Ben became more and more attached to chomper over the coming months and when we moved from San Francisco to Oakland, we allowed him to have chomper more often to help him through the transition of a new house, a new room and a new childcare provider. In the process, he had become the kid with a binky.

Before he started preschool, we decided to limit chomper to bedtime and naptime, partially out of principle and partially because his insistence on chewing the thing with such force that we went through one after another as he literally chewed them apart.

Since then, imposing that limit on chomper has been one slippery slope after another. For example, he’d ask for his chomper and we’d remind him that it was only for sleeping.

“I’m soooo tired,” he’d yawn dramatically, quick to find a loophole, and lie down on the couch or run and leap into his bed.

chomper.jpg

During our rough summer last year, when he was having multiple tantrums each day, I let him have it to calm himself down and allow him to regulate himself. It seemed like a small price to pay on one hand, but at the same time I felt like...you guessed it: A Terrible Mother.

But as he approached four, we decided that it was time to say good-bye to chomper. We wrote a social story to prepare Ben. The story talked about how he might feel sad sometimes when chomper is gone and that was okay. That he could be brave, and that he was a big boy and didn't need chomper any more. We talked about it with him. We even rehearsed putting chomper in a box.

And most importantly, we determined what the reward would be: Stepney and the Museum Cars – discontinued, of course and only available on eBay. But the price tag seemed reasonable for the chance to be free of the guilt, the stigma and the logistical hassle of having chomper in our lives.

We chose this past Friday to pull the plug - literally. We talked about it every day for a week prior and reminded him of the prize that would be waiting in the morning if he made it through the night. As Friday got closer, it was I, not Ben, who was dreading the start of our impending chomper rehab program.

Night One

On Friday night, we asked him to put chomper in the box and say goodbye. "Goodbye, chomper," he quickly obliged, and then kept playing, got his pajamas on, and seemed almost strangely chipper. Chris and I looked at each other, puzzled and he said, “If it’s this easy, we were idiots for not doing it sooner.”

When it was time to turn out the lights, the reality hit.

“Where’s chomper?”

“We said good bye to chomper, remember?”

“I want chomper.”

We talked him through it, I laid down in bed with him, and while he tossed and turned for a long time before falling asleep, he didn’t cry, didn’t fuss or act out.

When he finally did fall asleep, he rolled over toward me with a smile on his face. Maybe he always has a smile on his face when he falls asleep and I just never see it due to the plastic thing in his mouth, or maybe he felt a little liberated.

In the morning, there were Stepney and the Museum Cars. Everyone survived; we felt like we had made it through the first hurdle.

Night Two

As I feared, Ben viewed the first night without chomper as a temporary situation, even though we had anticipated this wrinkle and worked it into the social story. He must have thought of it like a stunt – go one night without chomper and get a new engine.

The next night, when it was time for bed, he asked for chomper. We reminded him of the deal, and at that moment, I witnessed him experiencing real loss for the first time in his life.

He looked crushed. He cried big sniveling, whimpering alligator tears in a way I had never seen him do before. It was extremely heartbreaking, but also such a relief that his emotional expression was so completely appropriate. No acting out, no throwing tantrums, no panic attacks, just straight-ahead human grief.

I lay with him again and he cried himself to sleep. In the morning, he was somewhere between denial and bargaining:

“Is it inside or outside?”

“I know, I know: It’s out on the driveway!”

Within five or ten minutes, he was playing and we never heard about it again that day.

Night Three

Sunday, after bath time, curled up in a towel on my lap, he asked, “Where’s chomper?”

I went through the explanation again and added how brave and strong I thought he was for giving up chomper (quoting from a Backyardigans episode.)

This compliment seemed to register with him, and we changed the subject, going about our usual post-bath giggling antics. He fell asleep with only a little sadness and the beautifully honest admission: “I want my chomper back.”

We could see the light at the end of what had turned out to be a very short tunnel.

Night Four

Tonight, we asked Ben if he had taken a nap at school.

“Yes!”

“And so you had a nap with Monkey, but no chomper today.”

“Yes. I’m VERY brave!”

Later, if was off to bed, sans chomper, sans tears.

Rest in peace, chomper. Ben is brave, and everyone is okay.