Inviting the Tiger that is Fear to Tea. The End of Ted’s Medication, Part 2

The Tiger That Came To Tea

What I so vividly remember from the afternoon of June 24, 2004 was Kate, our Nurse Practitioner shaking her head no. She had been doing it since she first looked at Ted’s chart and saw the 200 mg dosage of Zoloft the pediatric neurologist had been prescribing my 12-year-old.

She just kept shaking her head. No words came out of her mouth, but they didn’t need to. Her head shake said it all.

When Kate finally stopped shaking her head and spoke she explained to me that when the dosage of Zoloft was too high the drug can actually enhance the very behaviors we were trying to reduce. Yeah. Enhance. Then she said it, the words I knew were coming because I’d been hearing them for almost nine years…

“So here’s what we are going to do…” Continue reading

A Day In the Park Was Not Always A Walk In The Park

colorful playground

Inspiration for my posts often comes from the blogs I follow. A poignant piece will strike an all-too familiar chord in me and as I read I will be saying aloud to writer, as if they are sitting beside me and can hear, “I know this too.”

Earlier this week I read a piece written by Fiona at Wonderfully Wired called, Onwards and Upwards My Friends…  It’s a beautiful piece about how far her family has come in its journey with autism.

Now there’s a subject near and dear to me.

How far we have come. Continue reading

The Fermi Paradox And A Talk With Ted About Theory Of Mind And Math

Last Sunday was Ted’s 21st birthday and while in the kitchen, taking a break from the festivities, he came in to join me and about our absence commented, “I wonder if they’re asking, ‘Where are they?’”

He laughed.

Now very good at reading me, he recognized I had failed to pick up on his reference, and thus missed the humor in his remark. So he explained to me, “Where are they?” was the question posed by Enrico Fermi, and led to what became the Fermi Paradox, one of his favorite philosophical questions.

If you stumbled upon this blog by googling “Fermi Paradox” here is a link to its Wikipedia page, it’s okay, go there now, because I really don’t want to disappoint you when you find out this post isn’t about the Fermi Paradox. It’s about a mom and her son having a conversation about the Paradox and how this conversation was a reflection on the incredible progress that son has made in the almost 17 years since he was diagnosed with Aspergers Syndrome and how there was a day when this mom couldn’t imagine asking her child what kind of juice he wanted without him exploding let alone imagining him being able to calmly explain to her philosophical physics.

This post is a celebration of an event as spectacular, at least to me, as the discovery of extraterrestrial life, the “they” in the question Fermi posed. For, as we stood there in the kitchen, with every question I asked Ted, I could not help but notice how patiently he answered me.

Wait. I need to write that word again.

Patiently.

Oh that felt good.

Ted has not always been patient, and he has not always controlled his frustration.

Both have been hard-fought accomplishments and I absolutely could not let the moment go by, unheralded. So I said, “Ted, do you realize there was a time you could not have been so patient with me? You would have exploded the first time I asked a question, the first time I admitted I didn’t understand. You have just now, patiently explained to me, ME, the Fermi Paradox and I have really enjoyed our conversation.”

“I know,” he answered.  “I am very aware of how I used to not be able to do that. I couldn’t understand why people didn’t know what I knew, and what I was thinking, and I got mad.”

“That’s Theory of Mind,” I explained. “It’s the ability to understand people have different knowledge, experience and perspectives.”

“I suppose that’s it. I haven’t done the reading on Autism and Aspergers you have,” he replied. And then added, “Not understanding people has been hard for me. In 1st grade I would ask a kid if they knew what 5×5 was, fully expecting them to say 25. But they’d say ‘10’ and I’d say ‘no, times, not plus’ but they didn’t understand. I knew it was 25, why didn’t they? Then when I told them it was 25, because I cared that the answer was 25, not 10, they didn’t care, and didn’t want to know, and that frustrated me all the more.”

“As a teenager, I finally came to understand and accept that people didn’t know what I knew, or what I cared about, or what I was thinking, and when I did finally understand, patience got easier.”

“But people have been equally impatient with me. Take math for example. I didn’t learn math in the traditional sense. Because I could always see math, because I could see 5×5 was 25, I didn’t have to work the problems to get the answer. But most everybody else did, and the teachers always wanted me to show my work, but I didn’t have any work to show. I didn’t arrive at the answers in that way, so I was constantly in trouble and graded down, even when my answer was right.

I could see the answers in math until I reached second semester calculus. That is when I came to realize I had never really learned math. I have no concept of the steps it takes to work problems and so I had no skills to apply to the problems.”

“You don’t know how to break down math questions?” I asked.

“No idea,” Ted confirmed. “I guess to go any farther in math I would have to learn all those steps and I don’t think I can do that.”

“Perhaps someday you will want to. You are so good at it.” I said optimistically, and hoped his discouragement would not always continue to keep him from something he does so naturally well. And then I wondered, what else has he quietly endured?

But I did not linger long on that thought, because I could hear company in the family room and knew it was time to rejoin the party. Ted sensing this, looked at me and asked, “So, did I do a good job of providing a pleasant topic to discuss?”

“Oh Ted,” I said, “you did a wonderful job of providing a topic. I have so enjoyed this talk. So, are you ready to join everyone?”

“Sure,” he said, with a more than slight air of indifference.

That’s my Teddy at 21.

The Angry Monster In Me Social Story

The first time I saw the creator of Social Stories, Carol Gray speak was in 1996. She became one of my early autism heroes – those people I looked up to for information and support and HOPE. There was a time I even considered moving to Jenison, Michigan with Teddy so he could go to school with her, someone who actually UNDERSTOOD him. We never did move to Jenison, but just the thought that I could oddly comforted me.

After that first time hearing Carol, if a conference within five hours of me featured her, I went. Her perspective and compassion towards the autistic students she worked with, and clearly loved, moved me. Especially in those early years, when Teddy was having so much trouble in school, and I felt so terribly isolated, it was comforting to know someone in the world cared and understood. I bought her book as a reference tool and to share with school and I had a subscription to The Morning News, a quarterly publication she produced. Each time a new issue came I devoured it. It was like having a connection to the Mother Ship.

There will always be a special place in this mom’s heart for Carol Gray.

Here is another Social Story I wrote for Teddy when he was five and was having a terrible time with anxiety and meltdowns….

The Angry Monster In Me

Sometimes I do not get to do what I want.

Mommy, Daddy, my teacher or another adult often tell me what I should do.

Sometimes I can get really mad when I am told to do something I don’t want to do.

I may want to play 5 more minutes.

I may want something else to eat.

I may want to do something I am told I can not do.

When I am told I can’t do what I want I can get mad.

When I get mad I may start to growl.

When I get mad I may try to kick, hit or bite the person who is making me mad.

The feelings I have inside my body are really strong. 

When I get really mad it is like I am an Angry Monster.

It is okay to be mad. Everybody gets mad sometimes.

But it is not okay to hurt anyone when I am mad.

Mommy, daddy, my teachers and other adults don’t hit each other when they get mad.

When I get mad there are several things I can try to do.

I can tell the adult I am with that I am mad.

I can jump up and down.

I can turn my arms into spaghetti.

I can go lay down in my sleeping bag and hide.

If I am home I can go to my room and listen to my music.

I can hit or kick or wrestle with a soft pillow in my room.

I can ask for a really tight hug or to be rocked.

Finally, I can take a big breath, hold it, count to 10 and let it out slowly.

There are many people in my life who love me and want to help me control my anger.

I need to try really hard to notice when I am getting mad and chase the Angry Monster away.

Related Articles:

Behaving In My Class Social Story and Tips On How To Write Your Own

Teddy’s Kindergarten Social Story

Click here to visit Carol Gray’s website.

Above image is of the September 1997 cover of The Morning News

After Many Years That Vulnerable Place Can Still Be Touched

It had been raining all night, a hard, gully washer kind of rain. Occasionally, throughout the night I just so slightly woke up and heard the rain, thought groggily to myself, “Good grief it sure is coming down,” then rolled over and blissfully thought nothing more of it.

Until the morning that is, when just moments after I got up, a flash, a horrifying flash, filled my head and made me dart downstairs.

“The car,” I asked myself, “did the top get put up last night?”

Straight into the family room I flew, and, looking out the windows at the driveway I saw the answer.

I began to cry while simultaneously wishing I could wake up again, this time not into a nightmare.

For in the driveway, after a night of pouring down rain, sat the car, with the convertible top down.

Dressed in my nightgown I grabbed the keys and ran into the rain. I was drenched before I got to the backyard. The driveway was a river of rushing water and I slipped and cut my knee. Bleeding, soaking and crying I got into the car, started the engine and hoped the top would go up.

Unbelievably, it did.

But the damage had been done.

There I sat, the deluge had ended but I was sick to my stomach. Finally I made myself look at the inches of rain that had collected in the car.

I won’t get into all the details of how I got the car fixed, but I will tell you, thank goodness, it worked out better than I could have imagined. Within a few days the car was returned, dried out and in complete working order. (Again, unbelievable!) But there had been other damage done, unseen damage that took years to repair.

Long afterward, when I heard rain in the middle of the night I would wake and go through a series of questions, “Did I put up the top? Are the windows rolled up?” If I couldn’t be sure of any of the answers I would get up and go downstairs and look out the window to confirm the car was okay. If I couldn’t see the car well enough to be reassured I would go out in the rain to check.

I had to. It was a compulsion.

It has just been in the last few years, even though I still have a convertible, that I have not been as bothered by rain in the middle of night – almost a decade for the emotional wounds to heal – over a car.

This story though is about another emotional wound, one that stems from something much more significant than a drenched car. It’s about how for years, when I heard something like the sound of a child cry at a playground I looked to see if Teddy was involved and how, when my phone rang I looked to see if it was his aide calling.

But even like the car, with the help of the passing years, my reaction to these triggers has weakened, still, when events like the Denver shootings occur, the old fear, those old feelings stir deep in me and I know they are not forever gone.

You see, my son was aggressive when he was a little guy. He used hitting, biting, choking, screaming, as his way of communicating frustration, confusion, or upset with himself or a situation.

And this behavior scared me. I was scared of the consequences for Teddy if he didn’t learn appropriate ways to communicate.

In fact, because of his behaviors, I formed two flash forwards for my smart, creative and at times, out-of-control son.

  1. I was sitting at his Nobel Prize Awards Ceremony
  2. I was sitting at his arraignment

It became my job, beginning at the tender age of two, to see to it that if one of these scenarios occurred it would be the first.

We read anger management books together, he went to counseling, he took medication and for nine years he had an aide with him at school to help him through moments of frustration and to teach him how to ask for help, and how to help himself.

We modeled appropriate behaviors and interpersonal relationships. I even deliberately made mistakes, which were a major cause of frustration for Teddy, for he demanded perfection of himself.  I would burn cookies so I could say out lout, “Oh silly me, look what I have done, I got busy doing something else and left the cookies in the oven too long. Now they are burned. I sure am disappointed because I was looking forward to having cookies. You know what, since we can’t eat these little black pucks, let’s go to the store and pick out some REALLY good cookies to eat!”

And as Teddy got older the hitting and other aggressive behaviors slowly stopped. That was a huge relief, but those behaviors were replaced by the less frequent use of angry words which culminated in a five-day suspension from high school his freshman year when he expressed these words.

We kept talking to him. We kept modeling. We kept reading.

The mantra we used when he was little, “Ignore and walk away” was replaced with “Use your powers for good, not evil.” Appealing to his love of Star Wars. (His favorite character being, of course, Darth Vader, which was consistent with his favorite Lion King character, Scar and Aladdin’s Jafar.)

When Teddy was seven, the height of his stormiest years, Columbine happened. That was very real to me. Not only because I was deeply saddened because of the kids who were killed and injured, but also, because, and I am treading so carefully here because this is really hard to write, I was scared that maybe one day Teddy could be the perpetrator.

I can’t be any more honest with you than that.

“Use your powers for good, not evil.”

I couldn’t say this enough to him and the words came from the deepest place within me.

And today, by the grace of god, I can say that he isn’t using his powers for evil. He successfully learned to control himself. He can now even express that he learned to because he knew he had to. Powerful words.

But even though I am not so scared I will be sitting at his arraignment, there is, still, 13 years after Ted last hit and seven years since his five-day suspension, an awareness of  this vulnerable place deep within me and it is touched when incidents such as what happened in Denver occur. For Denver, just like Columbine makes me think of the perpetrators’ mothers. I don’t know them, I don’t know about their parenting, I don’t even want to know. An analysis of them is not what this is about. What I do know, and what this is about is these women have lived out my greatest fear, my one-time nightmare, my second scenario and my heart goes out to them. I feel very deeply for them. I feel compassion for them. And I just had to recognize them.

Here is a link to a letter Susan Klebold wrote for O Magazine in 2009, It’s entitled, I Will Never Know Why and it’s about her son Dylan, one of the Columbine killers.

And on a happier note, my current convertible, Daisy, safe and dry in the driveway…

And a grown-up Ted, safe and asleep in his bed…

Related Post: The Loneliness And Resurrection That Came From Fail