Aspie Ups and Downs

Going "back to school" after the winter break is much more abrupt and complicated now that the Boychick is actually going to school. With Homeschooling, the transition was suble and gradual in feel, whereas the transition to the new EMHS semester was accompanied by a countdown to when we return to reality--on a certain day at a certain hour.

The entire end of last semester and the begining of this one was also affected by some academic and social concerns that have added to the stress for both of us. One change was made in November when, in consultation with the Boychick's doctor, we decided to withdraw one his medications. This medication, given at sub-clinical doses, has a subtle but powerful effect on the quality of social interactions and also tends to blunt the cognitive, social and emotional apraxia (that sense of getting stuck at a decision point) that is common to people with AS. The medication in question regulates the neurotrasmitter Dopamine, which in the frontal lobes controls the flow of information from other parts of the brain. Thus Dopamine dysregulation in the pre-frontal cortex causes problems with memory, attention, and problem solving.

What we had noticed starting a few weeks after the medication was completely withdrawn (there was a process of gradual withdrawal), was that the Boychick was beginning to withdraw from social interactions more often, experience more episodes in which he would get stuck at a decision point, and shut down. When these experiences occured, however, he would "throw attitude around" (as his special education coordinatory so tellingly put it), as a substitute for action. During his winter break, the social pressure of needing to perform for peers was reduced, but we still saw these things happening.

The first day back began on a positive note, as Boychick reported it. He was excited about his guitar class, and on the way to Taekowndo, we stopped to get strings and a pick, and again to get notebooks. But as the week progressed, the notebooks in their bag stayed in the car, and on our drives to and from school, Nate listened to music on his I-POD. On Wednesday, he said that he hated his special ed math class. I told him that he needed to continue working on math even though it is hard for him (due to short-term memory issues), but that by doing it with a tutor, there is the opportunity to take frequent breaks when he gets cognitively tired.

On Thursday when I picked the Boychick up to go to Taekwondo he was very quiet. He seemed to have a very good Taekwondo session, and we stopped at the store on the way home. But when we got home, he put his ear-foams in and didn't respond to us at all. It turns out he and the vivacious L., she of the Winter Ball date had an argument. So I commiserated about the ups and downs of a woman's mood, and thought he'd be better after a good night's sleep.

Friday morning began in a rush, and the Boychick was once again not talking to us. But the Engineering Geek and I were rushing to get us all out the door so that we could attend Coffee with the Principal while the Boychick attended his first hour class. We spent about an hour discussing the re-chartering process for the school, and how the charter would be handled. It was interesting and informative, and I then had plans for the rest of the morning at home.

We arrived home, and I had barely poured my cup of tea when the phone rang. It was the Boychick's special education coordinator. He was having a bad day, she told me. He was incommunicative and throwing attitude around when he and Mrs. H., the EA, were trying to help him. As we talked, I checked his meds box, and discovered that he had not taken them. I told her so. We went on to talk about the problems he had been having that week. It turns out that there were several:

• He had not taken the notebooks we had purchased into school. They were trying to help him get organized and off the a good start for the new classes, but he had no notebooks.
• He was using his ear-foams all of the time, and was missing important instructional information. Since it is hard enough for him to process auditory information, missing parts meant he had no comprehension of what was happening
• He had a library fine for an overdue book from October. Since he had not paid it, his account (including his computer account) was suspended and he could not use school-net for his academics. The librarian had spoken to him numerous times, but he had not told me about it, nor had he asked his teachers for help dealing with it.
• In the despised math class, he was refusing to try the work, and when the special education teacher or the EA tried to engage him, he would shut down or give a display of attitude. The other kids were getting tired of it and trying to let him know.

In short, he was using a new strategy to deal with his apraxia. When he could not solve a problem or make a decision, instead of asking for help or shutting down, he was covering by putting on either the devil-may-care or class clown attitude. We had seen some of this during the last few weeks of school in December, but now the behaviors were coming out in spades.

As we talked, I developed a few hypotheses about what was going on. First, freshman boys tend to come to their first semester of high school using a bit of the tough-guy act to cover for their sense of nerves and inexperience. But by the middle of the year, most of them have discarded that attitude and have gained an understanding about how useful adult help is. But the Boychick, as is often the case, was perseverating in the behavior long after the others had figured out that there were more useful ways to navigate the high school experience.

Secondly, for the Boychick, the glass is not only half-full (the Aspie tendency toward a negative world view) but cracked and dingy as well. Things clearly weren't working for him socially, so he decided that everybody thought he was uncool. So once again, instead of asking for help, he covered with the teen-angst attitude. This exacerbated the social problem, but since he does not read others very well, he was not aware of it.

Finally, by Friday, the Boychick was completely overwhelmed. He could not access the computer. He kept forgetting to take money to pay his fines. He had no notebooks to collect his papers in, and L. wasn't speaking to him. When his Humanities teacher asked him to take out his ear-foams, he did not respond at all. The teacher, thinking he was being oppositional, got angry with him. Thus the phone call.

In discussing the situation with his special education coordinator, I determined that this was a situation in which I needed to take some steps to take the pressure off. So I called the school librarian and determined how much money he owed. I gathered his meds box and the notebooks and drove over to the school, expecting to find a shut-down and very unhappy Boychick.

When the Boychick came from his class to the office, he came bouncing in. I asked him if he was having a bad day. No. He was great, he told me. I pointed out that he had not taken his meds that day and gave them to him. Good. Then I gave him the notebooks and the advance of a few hours on his allowance (he usually gets it on Friday after school). The Engineering Geek and I shrugged at each other and then went to post office. Great? Clearly the Boychick has no clue about how he affects others.

Sure enough, after completing our errands, I returned to the school to bring the Boychick home for Shabbat. The beginning of the conversation was interesting:

Boychick: "You know, Mom, I didn't have my meds and I was completely focused!"

Me: "That's not what your teachers and peers thought, Sweetie. Mrs. R. called me and told me that you were pretty unfocused and having a bad day."

Boychick: "Hmmm. Well maybe I was but then L. made up with me at lunch. So now I am awesome."

That's my Boychick. Everything is black and white. When it's good it's very, very good, and when it's bad, it's aweful. To make a long story short, on the ride home we talked about his apraxia, what it means, why it happens to him, and how it affected every one of the problems he had been having that week. We also talked a lot about the social-language problems that come with AS. We then began to consider how best to deal with these problems. We developed a picture about how to act in class and how to get the best out of the people that are there to help him learn. We talked about the struggle with math,and I explained that the Engineering Geek and I understand that the Boychick does indeed know how to do the operations, if he sees the problem rather than hearing it. We talked about a great many things.

When we were talking about the differences in how an Aspie brain works, and why the Boychick might need to resume taking the medication we had just discontinued, he turned to me and said: "You know, this is the digital age. I wish that instead of needing to tweak my meds, we could just have Intel make a tiny chip and put it in my brain so that it would work like everybody else's."

To myself, I said: That may be coming sooner than you think, kid. But to the Boychick I said:

"You know, those of us whose brains work differently will really have to think about whether that would be a good thing. Although our brain differences create many challenges, they also provide us with great gifts. People like Albert Einstein, the great pianist Glenn Gould, and the inventor Thomas Edison all had Aspie-like characteristics. Our unique ways of seeing the world make us capable of doing great things. Should we want to be just like everybody else.?"

Boychick: "I don't know for sure. But when I'm left alone, I do like the way I think, sometimes. And I think Bill Gates is an Aspie. I think about that when I'm using the computer. And he's a billionaire."

Bill Gates? I think the Boychick may be right. Maybe someday I will be another kind of MOB--Mother of the Billionaire. Sweet!

And if he's a bit like Einstein, that would be great. But I am every grateful that I have never been called to school because my kid threw a chair at his violin teacher. Like Albert did.

I am suddenly feeling sorry for poor Mama Einstein.

CGP is Twenty-Three: May You Stay Forever Young!

This weekend, the Chem Geek Princess is in Seattle with her man, celebrating her twenty-third birthday. 23! XXIII! No matter how I write it, I must accept that fact that my firstborn, my beloved daughter, is my child no longer.

Oh, she's my daughter still, but she's all grown up.

This is my little princess as she was, twenty-one years ago!

Today as I was doing the Shabbat dishes (I leave them overnight on Friday night, an indulgence of Sabbath rest), I was listening to an old Peter, Paul, and Mary remaster.

The last song was Dylan's Forever Young. I used to sing that song to the Chem Geek Princess at bedtime as we'd rock in the rocker, her eyes growing heavy from her day of adventures, bedtime at hand.

"May G-d bless and keep you always,

May your dreams all come true,

May you always do for others, and let others do for you,

May you build a ladder to the stars and climb on every rung,

May you stay . . . forever young!"

As the song continued, my hands stopped in the dishwater (crystal, I always do by hand), and I started pondering the meaning of the the wish. Yes, I guess it is true that in some way, as I cradled my weanling to sleep, I wished time would stand still;, but rocker went on swaying back and forth, marking the passing of time into the night.

So what does it mean, to wish for someone to stay forever young?

"May you grow up to be righteous,

May you grow up to be true,

May you always know the truth

and see the light surrounding you,

May you always be courageous,

Stand upright and be strong,

May you stay . . . forever young!

That second verse does not indicate that forever young means forever a child, a kind of Peter-Pan Never, Never Land. And even if we, as parents, sometimes wish that time would quit slipping away so quickly, our children are on an urgently desired journey to adulthood. They can hardly wait to take on the world and make it over in their own image and likeness.

And in that second verse we can also see that staying forever young does not mean staying innocent. Being righteous, standing upright, knowing truth--these all mean accepting responsibility for being a real human being, which requires knowledge of good and evil.

"May your hand always be busy,

May your feet always be swift,

May you have a firm foundation

When the winds of changes shift;

May your heart always be joyful,

May your song always be sung,

May you stay . . . forever young!"

Forever young . . .

I think it must mean keeping that joyful, adventurous heart of a child, even as one acquires the skills and wisdom of adulthood. It means growing in mind and spirit, to meet the challenges and purposes of a free and productive life.

At her naming, the Chem Geek Princess was given the names of matriarchs: a princess-priestess, a mother of nations, and a prophetess of freedom. Then she was blessed thus:

"May this little one grow great! As she has been brought into the Covenant of our Father Abraham and our Mother Sarah, so shall she be brought to the study of Torah, of a marriage worthy of G-d's blessing, and a life of righteous deeds."

We have brought her to Torah: the marriage and righteous deeds are her responsibility now. She has grown up, and by finding and fulfilling the purposes she was born to, greatness is hers to find and to create.

Happy birthday, my-not-so-little-one!

You have grown up.

Now, may you grow great by fulfilling the hopes I sang for you as the rocker danced us into time.

Here is the Chem Geek Princess in her twenty-third summer.

May you stay . . . forever young!

She's Twenty-Two and in Las Vegas!

Today she is twenty-two.

It is a little hard to believe that twenty-two years ago today I was pacing the short distance from the bedroom ro the living room of our student apartment, trying to breath through the contractions.

I ache in different places now, and my baby girl has gone to Las Vegas with friends to celebrate her birthday.

It's funny what you remember, isn't it?

I remember that when she was newborn, she was looking around our bedroom, appraising it, as if it were somehow familiar. She didn't cry. At least not right away. Instead, she had this intent, serious look on her face. In the late afternoon sunset I could see the green-gray behind the milky infant blue in her eyes. I said to her father, "She has my mother's eye color there, just behind the blue."

I remember pacing the floor with her that fall, as she screamed her way through colic every evening between 6 and 8:30 PM. I played the Walkman with the earphones in, hoping to remain calm--as if any new mother could--through the fussing. At the time, it seemed like forever until she grew out of it, but looking back--well, what is six weeks compared to twenty-two years?

I remember when she started pre-school. On the very first Shabbat at home, she began singing: "What do you like about Shabbat!" And then she used her left arm to turn her whole arm toward her dad, and sang: "Mah-dy," (her made up word for her dad), "what do you like about Shabbat?" She was every inch the teacher leading the class.

And what about the second-night Hillel Seder when she was three. She stood up on the chair in roomful of 40 college students and adults and fearlessly sang the four questions. In tune. She was wearing a pink sailor dress, I remember, that it was almost as long as she was.

I remember reading The Hobbit aloud to her when she was three or four, and then she took the book away from me and began reading it back. And the insatiable love of books began right then and there, when we went "On Beyond Zebra!" She was going to open her own bookstore and call it Gold Medal Books. In it she would sell Newberry Award books and American Library Awards books, too.

I remember that at her little brother's birth, she was the only person who could rub my feet and make me feel better. She was thrilled about him. And not so thrilled, too. She used the phrase, "But that was before my little brother came along and ruined my life!" Alot. But when there was a fire alarm in theater, she was the first one out, pushing past other people, little brother in tow.

And the birthdays. At two, she got a tricycle, and by four, a two-wheeler. At three she came skipping home singing "Balloons for the Birthday Girl!" Barbie came somewhere in there, and her favorite Miko, who got lost one day years later. She mourned for months and searched for nearly a year. There was the year of the pinata in the courtyard, and the year of the party at the local park. There was the year she had a little brother. At twelve, we had to return a cd because it had the parental warning on it. That was also the year of teeny-bopper pop--Janet Jackson and the boy bands. At thirteen, her Bat Mitzvah overshadowed her birthday, and we had a sleepover on October 9th--a thirteen-and-a-month birthday party.

Fifteen was a really hard birthday because her cat was killed by the neighbors dog the day before it. We postponed the party until the 10th, when we brought home a new kitten. But it wasn't the same. Those teen years are hard, when the magic of special days wears off and Mom and Dad have lost their shiny virtue and have become merely human. Or worse. Sixteen and another sleepover and anger that it wasn't what we had talked about for her "Sweet Sixteen." Hard years. Little money and less time.

But at seventeen, she not only got her drivers license, but her stepfather invested in a car for her. Gertrude. It was a "grandma car." But she was happy to have it so that she could stay at her high school after we moved.

Eighteen. Was it cheesecake or ice-cream cake? But there was a shopping trip for special jewelry. Her birthstone in a necklace and earrings.

Nineteen, and we got her a rice-cooker for her dorm kitchen comfort.

Twenty. Back home, lunch and a shopping trip. And she broke up with her high-school boyfriend. Finally.

Twenty-one. That was a very good year. A birthday celebration at home with her new boyfriend--and for sure, cheesecake, her favorite. What a difference a year makes! And a trip with friends to Disney World in Orlando the weekend after Yom Kippur.

And today--twenty-two. Her first birthday away from home. She's in Las Vegas. Staying at a fancy hotel. She could be--G-d forbid--playing the slots. Certainly, she is eating well. I hope. Did I tell her not to drink too much? Well, I should have! I hope she doesn't elope today!

We'll have to schedule a time to make a party with the family and give her a gift. She might be too busy to have Rosh Hashanah dinner with us. Am I complaining? Maybe a little. But she should have fun. She's young, she's pretty, she's--twenty-two. Soon enough she will be celebrating her own babies' births! She'll be the mom. It's coming. I can see the look in her eye when a baby passes by with its mother. And I see how she looks at her boyfriend. Sigh. Well. He's a good man. But shouldn't she be older? Like maybe 40?

Today I did a bit of this and a bit of that. Nobody said to me, "Remember what it was like twenty-two years ago today?" I cleaned the new floor. I painted two more walls in the living room. One to go. I practiced giving the WAIS to Bruce. The results aren't valid and I couldn't tell him what they were--Dr. Yeo said absolutely not. It took a long time. It sort of took my mind off the fact that my baby girl is not even home on her birthday. For the first time since she came sliding into the world in our bedroom, all eight pounds, eight ounces of her. Looking around the room contemplatively. Like she knew the world and approved.

And she's taller than I am.

Sigh.

Some mothers can hardly wait for the empty nest. I thought I was one of them. But here I am. My nest is, at most, less than half-empty and I am feeling it.

I guess I should think about the grandchildren to come. Then I'll have more birthdays to celebrate. At her house. I wonder what kind of cake they'll want? Cheesecake. Gotta be.

It was just one of those days. Cloudy. Cool. Drizzly. Fall is coming. It was sunny and hot the day she was born. A Monday. "Monday's child is fair of face..."

And she's twenty-two. And in Las Vegas. And the world keeps turning. Day follows night. The stars move in their courses. Time marches on, no matter how much we want it to stand still.

The Hand That Rocks The Cradle...

Mother's Day in the United States will be celebrated this Sunday, May 13.

My mother used to say: "The hand that rocks the cradle rules the world."

In my younger days, I thought that the statement was a bit overblown to say the least. Influenced by the second wave of the feminist movement, I wondered if the saying was simply an excuse to not venture out into the world to do great things. To stay on the pedestal and bow to patriarchy.

When I was growing up, I had two best girlfriends. The three of us had much in common, not the least of which was that we were all certified members of "geekdom." In those days, being geeks was not cool, but it did have its compensations. One of these was permission to read science fiction and watch Star Trek and dream of doing great things in the future. Together, we three girls dreamed of becoming scientists, engineers, physicians, philosophers. In short, we were to become builders of worlds. Our motto was: "To summon the future!"

As we left school and started our lives, we did realize some of those dreams. We did become scientists and engineers, philosophers and anthropologists. But we also became speakers of many languages, teachers, care-givers, and mothers. And, although it took a while, we began to realize that it was in our roles as mothers that we took on the title of "builders of worlds."

Our most enduring role models are the mothers of Israel: Sarah, Rebekah, Leah, and Rachel. Our mother Sarah, who laughed at the Eternal, and not only lived to tell the tale, but also named her son for that laughter. Rebekah, who wondered about the purpose of her existence and yet determined the leadership of Israel for all time. Leah, who, as the matriarch of the tribe, managed the family and brought her husband prosperity. And Rachel, who nurtured the gifts and dreams of her son Joseph, who saved an entire land from famine.

And more: Yocheved, mother of Moses, whose look was toward life in a dark time. Miriam, the prophet, whose well of sweet water gave life in the wilderness. Hannah, Deborah the Judge, Hulda the prophet, Esther the Queen. And all of the women and mothers whose names we do not know; a web of women that kept the Jewish people alive. The influence of the mothers of Israel lives down the centuries. Their legacy is affirmed every Shabbat when Jewish women light candles and bless and pray for their children.

When we were young, my intrepid girl friends and I, we dreamed of glory. We imagined a legacy of fame and fortune. Well, we are all fortunate. But although we have achieved much, none of us have won Nobel prizes or ruled countries. We are grateful that some women have done so. But I think that each of the three of us has, at one time or another, realized that our power to summon the future comes from our efforts to bring up our children to be menschen. To be on the path of the true human being. If we teach our children to be good, true, compassionate, just and loving, and if they, in their turn treat others this way, then imagine how far we can "pay it forward." Our names may not be known, but our influence on the future can be very great. It can endure down the generations.

How great is our power. There is a Jewish saying: "To save one life is to save a whole world." Here is our corollary: "To nurture one life is to nurture whole worlds." Our influence can determine if those worlds are healthy and loving, or not. If they are places of joy and compassion, or not. If the truth is spoken in those worlds and if justice is done.

The hand that rocks the cradle rules the world.

Like Esther, we can change the world. So this Mother's Day, I will be standing in order to begin to make a difference. Sometimes small acts, when done together, can lead to great changes. When Julia Ward Howe, author of the Battle Hymn of the Republic, wrote the Mother's Day Proclaimation in 1870, she meant it to be a call to action. She wrote:

"Arise, then, women of this day! Arise all women who have hearts, whether our baptism be that of water or of tears!Say firmly: 'We will not have great questions decided by irrelevant agencies. Our husbands shall not come to us, reeking with carnage, for caresses and applause. Our sons shall not be taken from us to unlearn all that we have been able to teach them of charity, mercy and patience. We women of one country will be too tender of those of another country to allow our sons to be trained to injure theirs.' "

I want to answer her call all these years later, and stand for a better world for our children. So I will joining the Standing Women all across the world at 1 PM (local time) on Mother's Day to renew my commitment to Tikkun Olam, the repair of the world. I invite you to join me on that day. Go to the link above and let them know where you will stand. All across the world, we will make a wave of women, hour after hour, standing to commit themselves to the following pledge:

Remember: The hand that rocks the cradle rules the world.

What kind of world do we want that to be?

Happy Mother's Day!