Saturday, April 30, 2011

A is for Aluminum

Hubbie and Jake are setting up his science project. Together they built two bird houses. One with an asphalt roof and another with aluminum. There's also a heat lamp, 2 thermometers and a timer. I can't remember ever doing such a fun project for school and it's nice that they've been spending Saturdays bonding over different activities. They have been busy all morning, setting up and figuring things out. They just kicked off their first trial and have asked not to be interrupted for 30 minutes. Jake is collecting data and is pretty excited now that he's gotten to the actual experiment part of his project.

Of course I hope the results make an overwhelming case for aluminum! Our asbestos roof will be ripped off on Monday and replaced by aluminum shingles. Hopefully the choice turns out to be everything it promises to be.

acts of kindness

The dad of a child in Belac's class, who lost her mom in February, emailed to ask if there were a few mornings he could drop his daughter with me. He had to work before before the start of school and knew that I walk the boys to school each morning. No problem! A mom I'm friendly with in Belac's class had a doctor's appointment, yesterday. She was not going to be able to pick her son up and wondered if he could come to me. No problem at all!

A friend wondered how it came to be that I would do these things, so often and so often without reciprocation. I used to take care of a girl for an entire afternoon and feed her dinner, as long as her working parents didn't mind that she was a typical peer in Belac's 45 minute social skills session. Long after social skills was over, she was still coming to the house. So many kids in Sunny Patch have been to our house, though few invitations are ever returned before the same kids come back. Don't you worry that people are taking advantage of you??

Not really.

The immediate benefit of people being over is socialization for Belac. It doesn't really matter to me why someone is over, just that someone is actually over! He needs constant practice interacting with others and I can more easily facilitate if kids come to us. There's always snacks and games and arts and crafts stuff, and I insist that everyone be doing something with someone or running around outside. The parents love seeing that their children are not parked in front of the tv or computer for 2 hours, it's better than paying for a babysitter. Everyone benefits.

Reciprocation in the form of babysitting and play dates is not what I'm looking for. To be honest, the potential kind of payback I'm hoping for comes later...  Hopefully, these families will remember that we were kind and helpful when my boys later find themselves in need of a little kindness. When middle school arrives, maybe one of the kids will go sit with Belac if they see him eating by himself at lunch. Or stick up for him if he gets teased or accused of being weird. Or just make the effort to say hello if they see him standing awkwardly nearby.

I really believe that what comes around goes around. And so who is really using who? If you look at the situation from a certain angle, my motives are not completely altruistic. I'm hoping that my kindness insures theirs.

Friday, April 29, 2011

best best best best best best....

Belac threw up in school yesterday, which meant that he had to be home yesterday and today with me.

Yesterday, he wrote Lily a letter.

Dear Lily, Do you want to come over for a playdate at my house next Friday? We will eat peach jello and I will show you a computer game. It's my favorite game called Super Mario Bros. From Belac Snowflake

Then he addressed the letter, put a stamp on it and we couldn't get to the post office soon enough.

Later he asked, can I call Lily?  We talked about why a letter was enough.

Mom, I'm good to Lily. Yes you are, I agreed, but it's important to have other friends, too, okay? And she can have other friends, too.

Today at lunch he told me, I am Lily's best best best best best best best best friend.

Really? Did she tell you that? When?

At my 8th birthday party, he said looking down and smiling.

She told you that?

Yes, she told that to me in my ear.

Okay. So maybe she likes him, too, and it's a little two-sided after all....

This afternoon, he drew two butterflies with a heart between them. That's Lily and that's me, he showed me proudly. He counted down the minutes until we were off to pick Jake up from school. He carried his drawing.

Mom, he told me, this is for Lily. I'm going to find her.

Don't forget. You need to ask if you want to hug her. And stand a little back when you talk to her.

I don't want to talk about that now!

How about giving the drawing to Mrs. Rondo? She would like it. Or how about me?

He didn't say anything. At school, I saw Lily's mom.

How is he? she asked, Lily told me he got sick.

He's fine! Caroline, you should know that if Lily ever complains about Belac or even hints at not liking  his attention, you should call and let me know. He loves your daughter so much but we've been talking to him about giving Lily her space.

Gimky, it's so cute! It's fine.

Does she know or not know that Belac is the one with the aide? And this is why I cannot weigh 200 lbs and wear a nose ring. The way a parent appears and behaves either helps or hinders.

I know, I continued, but one day it might be too much. A letter is arriving in the mail today and now he drew her a picture. Just know you can call me if and when that day arrives, and it's not a problem, okay?

Next thing I knew, Belac was with Lily and he no longer had his sweet little drawing. He had given it to her, his best best best best best best best best friend.

Thursday, April 28, 2011

from Mom

My mom just happened to be on an email thread with my husband's family (Canadians). The original email was an announcement from me to our families that the kids had just become Canadian citizens. My own parents (Americans) were very supportive of this application, believing that Canada might prove to be a better place for one or both boys later. Congratulations on this thread turned into a discussion of how the boys' status would effect the price of their college tuition in Canada. To a debate on if Canadian schools could compare to American schools to the true value of a college degree relative to the enormous debt students now assume. To a more touchy borderline accusation that when a parent is too concerned about college they're really more victim to buying into a school's prestige, etc. You get the picture.

My husband's side of the family (including spouses of siblings) is a rambunctious group. They are predominantly lawyers and most have strong opinions. My mom was witness to no less than 151 emails filled with strong disagreements and debate, assumptions and an array of colorful comments. I am quite sure my mom was shocked at all of it. Even my sisters were rendered slightly speechless over at least one person's antics and another's extreme views, though not enough to not dive into the discussion a little. But my mom in particular is especially not used to debating anything in any manner. To disagree openly is a sign of disrespect, as per Asian custom, especially when elders are involved. It's no wonder that a disagreement with my mom usually ends with the silent treatment or her slamming a door and running away.

I thought that this dialogue was kind of fun and entertaining, actually. I know my husband's family well enough to not take most things personally, and I know better than to engage if I am not secure enough in my own positions. But my mom had her own perspective and emailed me directly today. Whatever our complicated relationship, my mom manages to appear at my adult side whenever it is that she feels I need rescuing. She obviously loves and cares about me. In case you don't understand what she's saying, here, I'll translate: Don't worry too much. You're doing a great job and we love you!

Gimky, you are worry too much just take day by day, give the kids best you can for them, if not you going to make yourself worry sick. I understand what you are saying but still… long as you know you direct them to the right way you don’t have to worry.

You and M did the great job with both kids pass few year especially for Belac, dad and I are very proud of both of you.Take care

heartbreak

Belac loves Lily so much. Before break, I saw him hug her and say "I'm going to miss you so so much, Lily." At night time, he'd tell me 'only x days until I see Lily.'  There were requests to invite her for dinner. For play dates. One day he told me he wished he lived at 321 Sunshine Lane, her address. It was so sweet in so many ways. But I knew that this was all a bit much and how long was this going to continue until she had had enough?

His aide pulled me aside at pick up, yesterday. Heartbreak had arrived. Lily hadn't liked all of the attention today. There was explaining to Belac about appropriate behavior and respecting someone's wishes. They had also pulled Lily aside and instructed her to speak up. His aide pointed out: look, this is a life lesson Lily needs to learn, too! She has to stand up for herself and say something when someone is bothering her.

It amazes me the kind of guidance and support these kids receive. Can I have an aide, too?

Later, on the playground, I knelt down and talked to Belac with my arm around him. I told him, it's okay to love Lily but she needs her space. Sometimes it can be too much. Just one hug is enough or saying something one time is enough. I saw his lip quiver and his eyes fill. He turned his head away and showed me his outstretched hand, wanting to divert my attention.  Read this, he instructed me and put his palm before my eyes, read this, I don't want to talk about this, as he wiped away silent tears with his other hand.

If only it were true that he's not engaged enough to care or that he cares only as much as he appears. But the truth is, this child feels more deeply than most and he's very discriminating. He's not the kind of person to love just anybody. Like I said, it's heartbreak.

Wednesday, April 27, 2011

citizenship

Just received the kids' citizenship cards. My kids are now officially Canadian as well as American. Wild to see their names next to a Canadian flag. Maybe in the same way it feels strange to my husband to see the kids reciting the US Pledge of Allegiance with hand on heart....

Hopefully, this gives the boys more options in the future. Certainly, if something were to happen to my husband and me, it allows the kids to go to family in Canada more easily. Next step is to apply for Canadian passports.

We still have much to do in terms of getting a will drawn up, our affairs in order, and a trust set up for Belac, but at least the ball is rolling.

yackity yack

I have become friendly with the new owner of Natalie's house. It was the house we had made an offer on, last year, before moving on to this one. The new occupants are a family of 5 from Brooklyn and first time homeowners. In the beginning, I kept my distance. I didn't want to get into any discussion about how it was actually us that threatened the stability of their bid on what would become their house. But, our paths kept crossing.

I'd be out with the dog and always passing the mom as she was on her way home from dropping her kids. We'd be on the playground while our kids were running around. And since they were even newer to town than us, often times she'd be looking on by herself. Then I realized this was absolutely ridiculous. She seemed nice enough and was one of a handful of visible minorities (Indian) in Sunny Patch with a biracial family. I should get to know her.

So one day, I just headed over and introduced myself. Another morning, I invited her spontaneously to coffee and during the chitchat, told her that we, too, had made an offer on Natalie's house. I left Angie to fill in the dots and we moved on.

This morning, we happened to bump into each other on the street. Somehow, it came up about how I had met with the Principal before break and in essence, complained. I found myself recounting how I began that discussion with 'As a daughter of immigrants, I'm especially not the kind of person who shows up in school to demand things for my kids-' when Angie interrupted me, laughing. "OMG, did you feel you had to explain that you're not a crazy Westchester mom? Gimky, you're like the nicest person I know in Sunny Patch. You have such an amazing aura of compassion and warmth and peace! You --"

"Oh, whatever!" I exclaimed and cut her off, laughing.

I thought about it as I walked home. That was the nicest compliment I've gotten in I don't know how long. It's certainly nice to know that I don't appear frazzled and crazy! I really should have gone into acting.

Tuesday, April 26, 2011

new world

It was around this time, last year, when I started questioning what the hell I'm doing here and if my time wouldn't be better spent doing something more productive. I got all excited about a job last May, which I ended up being in the run for but ultimately did not get. Major disappointment. Then I took a certification course at NYU, which was fun, intense and hard. Now it's time to enroll and pay for my second summer and I think, what has really changed since last year? A lot and nothing. Here I am again with the sun shining, in flip flops and tank top, ready to do what, I don't exactly know.

Would I like to continue writing about life a la autism. Sure, but not at the expense of revealing who I am.  Do I offer up anything valuable? I don't really know. And if I'm not willing to expose myself, I'll probably never really know. Would I like to teach more? Sure, but not if it means too much time away from my kids. They need me. In many ways, I haven't gotten any closer to knowing what it is I should or could be doing except maybe more of the same. But if I could just figure out something a little different, a little twist or zing, maybe it would be enough to fulfill me.

Signing off today with a beautiful New World.

Saturday, April 23, 2011

what a day

To be honest, I've never been crazy about my sister's boyfriends. She hasn't had that many for a 42 year old, never been married woman but I've just never thought her boyfriends were either kind enough or smiled easily enough. Sometimes I've worried that she'd never find the right kind of person to understand and appreciate her. But this all changed today.

I met this one for the first time, today, and have a good feeling. He has a boyish smile and I noticed he is very sweet and affectionate with her. He seems well adjusted and like he genuinely cares. It was nice to be in the museum, waiting for her because she was lingering with her boyfriend.  Usually she's waiting for everyone else. Who knows where this will go? Tonight we all played Apples to Apples and had some good slapstick kind of laughs. I saw the two of them share a chair with his arm around her, holding her close, and I just can't remember the last time she looked so comfortable and happy with someone. I hope this is for real. I love seeing my sister so happy.

Giving thanks

Got up early to make coffee and prep some food. Picked up glasses from around the house. I love that everyone is still sleeping above me and cozy in their beds. It's drizzling out. Looking out the kitchen window, I see that Sunny Patch is still asleep, too.

The house we live in now was on and off the market for almost 3 years. There are unusual things about the house that I think other buyers could not live with. And lucky for us. By the time we came along, the market had soured substantially and the owner was desperate to sell. And characteristics considered undesirable or just outright awkward rather appealed to us and even suited our needs better in some cases.

My family is here! And that's what I love most about this kooky, long house that no one can see very well from the street. Since neither my husband nor I have family nearby, it's amazingly nice that everyone can stay but still find some quiet corner to chill. It's also where my family has decided to come and celebrate Thanksgiving, again. And this I find totally sweet.

Friday, April 22, 2011

Ferber

Just kissed the kiddies good night. Belac is on his usual top bunk, Jake and my niece are on the double bottom bunk.

Mom, can I tell you something? Jake asked and then whispered in my ear, can you stay just in case?

Okay, I told him sitting at the edge of the bed.

After a minute he suggested, you could go get your lap top and sit at Belac's desk....

So here I am. No longer in the bed, on the bed, in a chair pulled up to the bed, or at the desk... but in a chair positioned just inside the door, where he can't exactly see me so easily. It's my own made up version of Ferberization and we'll see if it eventually works!

when nature calls

The boys and I had some time to kill at Costco, yesterday. We were waiting on our car tires getting changed. We spent some time in the cafeteria and then I had the boys use the bathroom. The bathrooms were in a remote corner of the building, far away from anything or anyone. There was a sign, "absolutely no merchandise in rest rooms." There was no family rest room, and there was only one cart parked outside the bathrooms with entrances from behind walls.

"Do your business, wash hands, and come right back out," I instructed the boys sternly while I waited outside the entrance with our cart.

A janitor came out of the woman's restroom and must have heard me.

"Mommy," this grandfatherly African-American instructed me, "take care of your children. Bring them to your bathroom." He went into Men's and directed the kids out. "Take care of your children."

"You never know, right?" I told him.

"You never know," he nodded and was off.

At Grand Central Station, you can't bring your child of the opposite sex beyond a certain age into the rest room with you. There is an attendant and the child will not be allowed to enter. That means my boys would have to either go into the Men's room by themselves or stand outside waiting for me. At the MOMA, there is a family restroom (aka handicapped), but it's on the top floor of the museum and hard to get to, and you're waiting with the elderly and those in wheelchairs for just a single stall there.

There are ways around these things, of course. If I'm without my husband, I always make sure my kids use the bathroom on the train instead, where there are single stalls. In public places, I let Jake go in by himself and sometimes I have him check if the bathroom is empty so I can send Belac in with him. I always have the boys use the family/handicapped restrooms whenever available. But sometimes, there's no choice but to break the rules and I simply bring Belac into the women's restroom. I'd rather get in trouble than for him to get in trouble. Like this kind gentleman said. "Take care of your children."

Thursday, April 21, 2011

welcome!

My husband is at work, but the rest of us slept in. Now Jake is walking the dog. Couldn't find the leash so we fashioned one out of an old plaid scarf and laughed our heads off. Belac is running around with the flip, narrating his own movements. And I am making the grand list for our trip to Costco.

My sisters arrive tomorrow, one with her family from Michigan and the other from DC. I'm meeting my older sister's boyfriend for the first time. My sisters both invited friends and extended families for dinners on all the nights. I think at least another may spend the night instead of trekking home to Brooklyn. And this is what I love. Not just the conversations, food, games, music...  but the idea that my sisters always bring their friends home to me and it's a place where people seem to like being, even when we lived in cramped quarters. I didn't grow up in a house like that. I am relieved and sort of proud to know that my home welcomes everybody.

racing

Before we left Montreal, my husband and Jake went to the track. Jake ran his 2 miles and my husband ran his usual 5, but my husband was shocked and tickled to find that for a few consecutive laps, Jake fought and managed to stay ahead of my husband, not letting him pass. They were easily running over 6 miles an hour. In a couple of years, I'm not going to be able to keep up with him! my husband exclaimed.

You know, I behave as if our kids are always catching up and developed a seriously bad habit of micromanaging over the years. I sometimes worry about them like it's the end of the world, too. But I cannot deny that the kids seem basically happy and well, knock on wood. They each have things to figure out and work on, but that's everyone, l I realize. And they even manage to grow and learn without my hand in the thick of everything, shocking!

The world sure ain't stopping for us and that means we'd better slow down and enjoy this ride.

Wednesday, April 20, 2011

home sweet home!

Jake was over at Allie's house, earlier, and called to happily ask about spending the night. He was already in pjs but over playing with her boys. Of course! I told him, have fun and I'll see you in the morning!

2 hours later, the doorbell rang. (Allie lives right next door.) Mom? I came home to brush my teeth. Actually, I think I just want to sleep here.

Thanks for trying, I told Allie on the phone.

I'm ready! I heard Jake call from upstairs. I kissed him good night and parked myself on a chair near his bed. Thanks mom, he told me. My sweet little boy! And now that he's sleeping, I'm off.

Tuesday, April 19, 2011

NY vs. Canada

My husband is starting to look for other work. It will likely be slow-going given the current state of affairs in the U.S. That is, unless the search includes other places like Canada, where he might have more prospects.

My husband met up with a guy in Montreal, this trip. He's someone who leads a Canadian-based company and has a lot of expertise in different areas of business. They talked about my husband's career and what he could do next, possibly at his company.

Of course, I'm not too keen on moving from NY. I really feel we cannot move Jake yet again and so soon. And as for Belac, the services are better in metro NY than in Canada. But you know, there is another bigger picture that continues to emerge.

Today, I saw Belac's grandpop sit with him as he practiced the piano. I heard him ask Belac, after he flippantly rushed through a piece titled "Three Little Kittens," how do you think those kittens feel about losing their mittens? How could you make this music sound more sad? I heard him tell Belac after another piece, the music goes from your heart, to your brain, through your arms and into your fingers! Do you think you can do that? Yes! Belac agreed and tried for a more spirited Yankee Doodle.

And while Belac and I took a long nap, Jake hung out with granny as she cooked all afternoon for tonight's seder. Jake is always enraptured by her ongoing self-dialogue, jokes and rhymes. She pokes fun at herself, he pokes fun at her, and it's just a good, funny relationship.

Would it be so terrible to move to Montreal? We'd have to start all over in so many ways. The kids don't know French. The cold winters would be really hard for me and I don't even want to think about being farther away from my sisters. But there would be family nearby, grandparents and valuable things to gain that we don't exactly have now and what is it, really, between school or family that has the more important and lasting impact? Sometimes I think that all either of my boys really needs is a supportive and engaged family/community. My husband knows I feel strongly that we should try to remain in NY for the school and continuity and pretty much agrees with me. Why risk something that's working well enough and we've developed good friendships over the years. But lately I've not been so afraid of his sniffing around in Montreal.

annual meeting

I've been going up to Montreal to celebrate Passover with my husband's family for the past 13 years. Every year, I see the same couples my in-laws are friends with. Last night, I sat with Martha, a long-time family friend, and we caught up.

"Have you ever thought of getting him diagnosed again? Gimky, he came right up and talked to me. He was so cute."

"I've thought about it, but it's a serious expense you know. And what would it change? Look at him, he's hopping around and humming over there by himself. That's a little weird, don't you think? A new diagnosis wouldn't change that."

"Gimky, everyone's a little weird and there are weird people everywhere. Weird is what makes this world interesting."

"Yeah, well if you hung around him enough, you'd realize just how different he is from other 8 year olds. You'd notice how one-sided the conversations are. He's little and cute so he gets away with it, but when he's older...."

"Look. I know someone who has a child with autism. And that child is 12 years old, says one word, and wears diapers. That is what I call autism."

"But that" pointing to Belac, now hopping around like a frog, "is also what Columbia Presbyterian describes as autism. But you're right, that was already 4 years ago and they haven't seen him lately. I wonder what they'd say. But it's a lot of money to shell out for a reevaluation and what would be the point? I'd rather save that money for something that would actually help him."

It was a brief and welcome exchange with someone who only sees Belac once a year.

Monday, April 18, 2011

U.S. Prevalence of Autism

FACT: When you've seen one child with autism, you've seen one child with autism.

http://www.pbs.org/newshour/bb/health/jan-june11/autism2preval_04-19.html

Autism's First Child

http://www.theatlantic.com/magazine/archive/2010/10/autism-8217-s-first-child/8227/1/

This is an incredible story. To think we've been living with my son's diagnosis for almost 6 years and I'm just meeting this guy. These are the following points that are both fascinating and important to me.

1. Though first described by his mother as 'hopelessly insane,' autism's first child turned out to be high-functioning and more similar to Belac than I would have ever imagined.
2. The parents sent the boy to a farm, where his strengths were put to good practical use.
3. The parents exercised their own judgement, at times going against professional advice.
4. As a society, we need to replace pity with ambition. It's so well put, here.
5. "If you're odd and poor, you're crazy. If you're odd and rich, you're just eccentric."
6. He worked as a teller at his family's bank but an irrevocable family trust was set up.
7. At the age of 77, he continues to live in his childhood home and meets his brother for dinner every Sunday.
8. He drives and he travels.

As time has passed, my hope for Belac has increased, but I realize we must continue to think about the future in very pragmatic terms. A good plan protects both of our kids.

Sunday, April 17, 2011

PBS Special

Found myself sobbing through parts of this. Especially for the daughter who is 10 years old like Jake and obviously having a hard time. It moved me that the grandfather could recognize so tenderly and succinctly the magnitude of his daughter's role. That he didn't just start bawling during his heart-to-heart with his granddaughter when she didn't allow him to minimize her feelings. That he let us into his family's world, risking privacy and endless criticism over something so deeply emotional to all those involved.

My mom-in-law came home as I was watching. "Never mind me," I laughed, wiping away my tears, "I'm just crying my head off."

This story is all so true. So true.

http://www.pbs.org/newshour/bb/health/jan-june11/autism_04-18.html

Saturday, April 16, 2011

passing time

It's a rainy, snowy day in Montreal. This afternoon, I got the kids on the treadmill. Belac walked a mile instead of his usual half and I showed Jake how to lift weights as we watched. Then it was Jake's turn and we talked like we talk at night.

I asked him about the boy he had been on the stock market team with. How's Dan doing?

The same as all of the other boys. Well, except for Patrick, who never gets yelled at for some reason.

Really? Why?

I think he can read Mrs. Pomme's mind or something! He always knows what she wants. You know what I wrote in my planner yesterday? I wrote: Dan is awesome!!

He is?

Mom! He knows Hebrew, too. So he said 'let's speak in Hebrew so no one else can understand us.'

So did you say something to him? Baruch Atah Adonai... I began solemnly.

No!! He laughed. I told him I like pie! And other stuff. And then he invited me to his Bar Mitzvah.

Did you invite him to yours?

No.

Why not?

I didn't think of it.

Well, you could always return the invitation the next time you see him. He's a buddy, right? By the way, I talked to the principal, yesterday.

I saw his face kind of fall.

I told her about the kind of year we've been having and I asked her to please make sure you get a certain kind of teacher for next year.

What kind of teacher?

One that doesn't yell and has a positive attitude.

Yay! he said quietly.

By then, Jake had walked his mile in like 15 minutes and wanted to be done.

Well, we have time for you to do more.

Mom, this is so boring!

Well, go faster then, but be careful on that thing.

So then I watched Jake turn up the speed and run, barely breaking a sweat as he ran fast and hard for the remaining 15. He looked light on his feet and like it was the easiest thing. He caught my eye a couple of times and was smiling.

I can't believe it! I never saw you do this, Jake!

Yeah, he chuckled, it's fun.

Friday, April 15, 2011

Morgen!

The kids were up by 6 instead of 7 today, already running around, drawing, reading, chasing each other. It's amazing how the warm weather and sunshine changes everything. We'll officially be on school break at 3pm and will leave for Canada right away, but not before I meet with the school principal.

Yesterday, I ran into a mom who told me her son was having a horrible time in Jake's class. She had been to the principal's office multiple times over Jake's teacher and no one was listening. I was shocked into silence. Our boys had been 2 of 4 kids on the winning team of the countywide stock market game in December. She went on to tell me that it has become her son's burden, who is now forced into a one-on-one session with the principal every Friday, a pep talk of sorts. My God, and I thought it was just my own boy being sensitive. 

"You know, my son is meeting with the school psychologist every week?" I told her. At this point she wiped tears from her eyes. 

"Please, please, please speak up, Gimky! This is a burnt out, out-of-control woman. I don't know why people are so afraid to speak up. Our children are defenseless."

I've had at least 5 meetings with Jake's teacher, over the year, and met recently with the school psychologist. This mom, however, was going straight to the administration. This I hadn't done. And you know what I realize? I have to stop thinking so easily that my kids are charity cases because they are absolutely not. And my children should always be right before they're wrong. A little sense of entitlement on my part would really serve us better.

My own mother never stood up for me. In Kindergarten, my teacher accused me of copying someone else's paper. Another child and I got the identical wrong answers on a page of work. We were supposed to sequence a story by number, labeling which picture came first (1), next (2), next (3), and last (4). I didn't understand and just put the numbers wherever. I explained to my mom that I didn't copy the other girl's paper but she didn't believe me. And so I was locked in the garage until I admitted I had done it, even though I honest to God hadn't. Then I was brought to school early the next day to apologize to the teacher for not only cheating, but for also lying about this cheating I did not do. And I just bawled my head off as the teacher hugged me and told me that from now on, I had to know it's always important to tell the truth. No one had believed me, not even my own mother.

To this day, I have a hard time shrugging off the skepticism of others. And I turned out to be almost too soft with my boys, no surprise, and always wanting to talk things through with them. But this other thing I absolutely cannot do. I really cannot remain quiet about Jake's needs just because his brother's are more obvious and dramatic in comparison. I need to stand up for Jake whenever necessary and with the same kind of gravitas and urgency or he will spend a lifetime - like me - trying to speak up.

I'll be offline for a few days at least and sign off with the most beautiful music I've ever heard. Morgen! It's about endless and enduring hope for tomorrow. May we always have hope.

Thursday, April 14, 2011

feels like summer

The sun is shining! I walked home with the boys and their friends in my flip flops. They're now running around and happy. Belac and his friend are "walking" the dog on a leash outside and ordering him to perform tricks, much to his un-amusement. Jake and his buddy are throwing paper airplanes everywhere. Eventually we'll do homework and have dinner. But this is just nice. I threw open all of the windows to let the fresh air in. Everything is just good - and nothing can be bad - when the birds are chirping and the sun is shining.

Wednesday, April 13, 2011

sisters

My sister never comments about my blog and I think she only stops by occasionally. Today, though, my typically unsentimental sister wrote me a letter that made me a little teary-eyed. It matters that she didn't roll her eyes at me and that she understands my inner struggles with exposure. Actually, I need to acknowledge that they both understand. We're sisters, after all, and shared our childhood! The little one wrote:

I read your blog this morning. It sounds like you are having an emotionally heavy time right now (with Belac being the least of your worries recently!) Things will be fine and work out. I'm sorry you feel like things are unresolved with this person, and that you didn't express yourself better with him.  We all have regrets about behavior as children and teens. I did a lot of terrible things and was not mindful of others for so many years. I don't think I learned my lesson and matured until I was 27! I'm sure I was cavalier with the the feelings of others, and hurt people because of it. We are all young and stupid. It doesn't help that we didn't have guidance or role models with our parents. Things will (hopefully) be different with our kids bc we will be closer and we will actually talk. But of course, they will make the same mistakes as we did, and we will curse about how youth is wasted on the young.
Love,
Your Sis

the answer

As we were hanging out before bedtime, totally unprovoked:

How many months are there til summer? I can't wait for summer.... Mom, Mrs. Palmer yells all of the time.

All of the time? Does that mean more than me?

You barely yell. Actually, you don't yell. She yells like this, (raising his voice) GET YOUR MATH BINDERS OUT! She yells all of the time. I feel really sorry for anyone who has her.

You're doing pretty well in school. Do you think she's helped you be a better student?

Well. She's helped me be more worried!

Worried about what?

Worried about getting in trouble. Worried about getting yelled at. That kind of stuff.

Okay, folks. So there you have it and it's the answer that makes the most sense to me. 8 months into 4th grade, 6 weeks into almost daily nightmares.... This is why I'm going to write to the school and talk to as many people as I can to make sure he gets a certain kind of homeroom teacher, next year. Hopefully, I can just be nice about it and it will be fine. But I have no problem raising hell if I have to. And believe me, when forced to resort to such measures, I can yell louder than anyone.

Disappointment

When I was in high school, I fell in love with a boy. And because I was immature and insecure, I couldn't admit how much this person meant to me. Instead, I pretended not to care. And it was terrible and shameful how I behaved. Even though it was so hard to keep up such a facade I couldn't figure out how to turn it around at the time. I didn't know the words, I'm sorry.

God help my kids if either of them behaves this way to boy or girl, I will intervene.

Years later, I wondered about this person and thought about the funny and sweet things before it turned. Every now and then I told myself that I'd find him and apologize. I was such an idiot. But I didn't know how to be in touch and he probably wouldn't get near me with a 10 foot pole anyway. I was in Germany, I was in NYC, I was onto other things and far, far away. I also didn't get my first email address until my early 20s and my first cell phone until my late 20s, and this was long before social networking.

Well, along came Facebook in my late 30s. And what does one do when you're new to Facebook? You look up every person you know and snoop. So I snooped and found him. And not only did I find him, I found out that he had been living nearby, almost all along it seemed, and working someplace that I happened to visit now and again. It was pretty shocking.

I wrote, probably too many letters. I apologized, probably too much. We became Facebook friends. But I couldn't shake the feeling that I appeared like a lunatic and so one day, I unfriended him. I thought it would be a relief for him (and for me) to have me off his list.

I told this all to Olivia, yesterday.

GIMKY! Did you at least explain your unfriending?

Um.... no.

GIMKY!! Her eyes widened, how could you do that?

I know. My sisters are coming into town, I continued, and one asked him about meeting up. They had seen each other recently in Michigan. Of course, Olivia, now you know this weird situation I created for myself that I obviously never told my sisters about. So here I was, not sure if this meeting really included me. Not convinced that he'd meet my sisters knowing that I would come.

Don't tell me.

So I wrote a note with probably too many words, giving him the chance to tell me not to come.

GOD, GIMKY! Olivia laughed at me. You're really too much. When was the last time you saw him?

23 years ago.

What in the world are you worried about?

I don't know....

That you're going to fall madly in love with him and run off?

No, not really, I laughed.

?

Well. That he won't like me. That he'll see me again and say, yup, good riddance. And I'll be left embarrassed for caring so much about something so long ago that to him was just the tiniest, inconsequential blip.

GIMKY! How many people can we say knew us when we were young? These relationships are special, I don't need to tell you. We're not getting any younger. Write the truth and what you wanted to say from the beginning. You would like to see him with your sisters and is he okay with that. Simple as that. Make peace with him, make peace with this.

I really can't, I already wrote too much and he must think I'm stalking him at this point.

Just one more note is okay. Life is short, my dad is sick you know.... Try to see him, Gimky, it will be nice. Nothing bad will happen. In fact it's perfect! Your sisters will be there and it'll be fun.

So I did what I should have done from the very beginning and wrote truthfully and simply. But I think I'm 23 years too late and already scared him away. He's not meeting us.

Tuesday, April 12, 2011

cookery

Met up with Olivia today. She's someone I consider my best friend. She's hilarious. She's razor sharp, too, all the more remarkable because she's also one serious head turner. We went to school together, played concerts together, and she plays in the orchestra downtown. Most importantly, though, we share some kind of understanding and trust. I can tell her things I tell no one else and she still somehow thinks the world of me. Now that is a true friend!

Today she told me her dad is not doing well. He's had multiple by-pass surgeries over the years and continued nagging problems with his heart. He's about to have another stent adjustment. He's scared, she's scared. She told me, life is so short, Gimky, and we're not getting any younger. You're a grown up and the best good girl I know. Don't over think things, follow your heart and trust yourself.

Ubuntu

I am who I am because of who we all are.

Monday, April 11, 2011

really!

The boys ran wild with Allie's kids before dinner. I called them home to eat leftovers on the porch, and then there was homework in open, fresh air. Allie's mom dropped by to deliver Jake's paper airplane, rescued from Allie's roof, next door.

I later listened to Jake and my husband play a noisy, giggly game of ping pong, and the sounds brought a smile to my lips. I checked on Belac, who asked "Mom? Can you talk to me? I'm bored." He knew to want the guest room, having heard about possible thunderstorms tonight. The dog curled up next to him.

Then Belac called from the top of the stairs. "Mom? I need someone to sleep with me! I don't want to be alone."

Ask Jake to sleep with you.

"He doesn't want to."

I went upstairs. Jake, could you sleep with Belac? You know, we can all help each other, right? When you're scared, I come to you. Now your brother wants you because he thinks he's going to be scared. You could help him, too.

But what if I need you? I don't think Belac wants you in the bed.

If you need me, I'll come and Belac will be fine. But first, you'll have each other, tonight. You might not even need me!

Fine, I'll even kiss him good night! Jake declared as he smothered Belac with a forceful hug and pinned him down as they both laughed hysterically.

They both climbed into the guest bed. Belac, can I have that side? I want to be near my glasses.

Okay, Belac said, switching sides.

I tucked them in and kissed them a million times. They are the sweetest boys in the whole wide world and I really am the luckiest person to be their mom.

Joy of Man's Desiring

This is beautiful! Enjoy!! (Aren't the tremolos fantastic?)

Sunday, April 10, 2011

building core strength

Jake is now at the running track with my husband. Yesterday, they went on a long bike ride, where my husband pushed him to ride hard. Everyday, we are making sure to spend one-on-one quality time with him. Everyday, we keep pushing him forward. Everyday, we make sure to have conversations with him and to keep the tenor positive.

This past week, he's been using the treadmill before school. He recognizes that he can run and share that special time with his dad on the week ends. There's a meaningful goal there. I also like that he could join the track team in middle school and not be subjected to the stress of try outs and the fanatical culture and pressure of the team sports.

We're also focusing on the academics. He knows his stuff, but he's unsure of himself. When asked to explain what he just read, he flounders. When drilled on math, he hesitates. It's insecurity under pressure and effects everything. So this will take practice. Practice explaining himself. Practice just coming up with the answers. Practice delivering confidently. Practice makes perfect.

The Kumon books arrived and he does 20-30 minutes of math and reading drills every day. Every couple of days, I give him a topic to write about in his new journal. We made him an email account so family can be in touch with him. And everyday, I just try to make sure we have some meaningful exchanges.

Jacoby, my boy. I want to do right by you and hope it's not too late. I'm sorry that we didn't give you more attention these past few years. There were good reasons for our preoccupations, but it doesn't make it right. I'm sorry things have been so hard for you lately and that it has taken your nightmares for me and dad to drop everything and finally make a plan for and with you. We're here now and I want you to hang in there! We're going to figure this all out together.

Friday, April 8, 2011

The Review

I am really impressed by this article I found, yesterday, which focuses on the trajectory of several high functioning, autistic adults. Though Belac is just 8, so much of what is discussed here rings true to me. And it is especially valuable to me that someone - presumably not emotionally involved with those profiled - gives me access to these individuals and how they came to be.  It's unsensational writing and synthesizes material from many sources. And it also reminds me of my curiosity about - and longing to be in touch with - the parents before me. Who is this author who published in this review? I want to find her, too.

The big takeaways for me are:

1) My son has to learn how to compensate for his weaknesses. Makes sense. Those who learn compensatory techniques fare better in the real world.

2) Trying to behave 'normally' can be exhausting.

3) Isolation and depression happen even if one has friends and is capable socially.

4) Genes that cause schizophrenia, manic depression and autism can confer advantages in a milder form. (Grandin)

5) Hard to know where autism ends and oddness begins.

6) Parental advocacy is huge. Important to nurture talents into vocations where they can be affirmed.

7) His autism can be traced to the tendencies of both families....

How are we autistic, how am I? my husband asked when I told him about this article. We laughed. Well, we're not. But look, there's the perfect pitch thing, that everyone in my family has. That's sometimes referred to as a semi-savant thing. There's definitely history of depression and neurotic stuff from both sides of the family. At least one case of schizophrenia on one side and unconfirmed high functioning autism on the other side, albeit distant relations. There's your encyclopedic knowledge of dates and numbers... But I think most significant, is that you and I both ended up with the kind of academic record that points to our abilities (and tendencies) to hyper focus. A lot of high functioning autistics are born to couples like you and me.... Belac is an extreme version of a certain you and me.

I found this article comforting and positive. My son is not alone and he has role models. But where are ours? And more importantly, where-oh-where are Jake's? You see, we're not really concerned about Belac right now. I actually believe he's going to be okay. It's Jake, his brother, who is now the focus of my concern.

Thursday, April 7, 2011

Roeper

Just voted to increase taxes in Sunny Patch to maintain current class sizes at the elementary school. There's a big battle going on in the town over this and I understand people are stretched. But I also know that my kids can easily get lost in bigger environments and I hope the proposal I voted for passes.

Until recently, I didn't fully appreciate the school I went to growing up. It was a small, crunchy granola, bare bones private school in Michigan. We only ended up there because my older sister was very small for her age and very shy, and my parents were afraid of letting her attend the large public middle school that had few visible minorities. So we ended up at this school a few miles from our house, a place that touted humanistic values and where I graduated with 45 other kids.

I haven't really kept up with my classmates and always considered the community rather cultish. I always thought it was sheer luck that many of my colleagues moved onto good schools and successful careers given the school's ultra liberal leanings and lack of discipline/hierarchy (at least when I was there.) I forget too easily, though, that every kid at the school was valued for whatever it is that they brought to the table and pretty much trusted to do the right thing. I've come to realize how important it is to respect yourself as an individual, to be trusted by others, and not have your main focus be on conforming. The school did a good job in bringing out the special in each student. They never gave report cards that summed up a kid with arbitrary numbers, there was always something meaningful and much more helpful to say. The reality is, I'd probably be sending my kids to this school if I still lived in Michigan and they'd probably be quite happy there, too.

the sun has risen again

If this Fraulein can make a cow jump, so can I.

http://www.huffingtonpost.com/2011/04/06/cow-jump-regina-mayer_n_845617.html

I told Jake this morning, it's a new day! Yesterday is yesterday. Today is a new day.

Wednesday, April 6, 2011

fists

Was called into the principal's office, where Jake was crying hysterically. Apparently a boy was bothering him even after he asked him not to, so there were swear words and shoving. Then when asked about the incident, Jake was initially not honest about what happened.

This is my sweet, easygoing kid! What, what, what is going on here?

We talked with Jake. Then we sent him out and I talked in more depth with the principal and the school psychologist. The principal made an offhanded remark that she thought it might be hard for Jake to have a brother like Belac. I could not surpress my own tears at that point. Maybe the world makes it hard to have a brother like Belac. Did she ever think of that?

Later, I ran into his school teacher who actually shrugged and could only say "Don't know what to tell you, I'm not a psychologist." She truly doesn't care and couldn't be bothered. She's retiring in June and she's done.

Cecilia!


I ran into my neighbor with our dogs, this morning. She's an opera singer who has 40 piano students in Sunny Patch, and she has been coming to me for piano lessons and help on how to solve technical problems. One session was just on the phrasing of the Bach C Major Prelude. She didn't know how to get her student to not sound like a machine. Do you know Gounod's melody to this? I sang it while playing the prelude. Just sing the Gounod and have your student accompany you! Make her breathe with you.

She had me look at a Bach Minuet because she couldn't understand the markings and ornaments. Every single note in her score was decorated with another dot or slur, ornament or dynamic marking! You know these aren't Bach's markings, right? And that this is all physically impossible? Ignore all of this! Stress the down beats and keep the rest light, play in strict time, and a little forte with piano echo. Keep it simple and it'll be great!

Tomorrow she comes to have me help her choose a NYSMA piece for a student that doesn't practice. Our meetings are really interesting to me. She soaks everything up like a sponge. She comes with a stack of music with detailed questions and problems to solve and I just love it. Just don't tell my students you're doing this for me, she tells me.

Meanwhile, I've let her in on a few things about my family. She has 3 kids, herself, 2 in college and another on her way. She's told me things. Her eldest has needed a lot of extra support all across the board, the others have had their moments despite being well-adjusted and good students. Today she interrupted our chit chat with this:

"I was just thinking about what you told me about your little one. You know I have a bunch of them and they are really smart. A couple have Asperger's, which I assume yours.... What I want to say is, Gimky, just play your music. How can your boys not turn out all right? They have you! They have your husband who works so hard. They have role models. Play your piano and just let your kids hear their mom playing beautiful music! Don't worry. It doesn't help anyway and everything will just turn out fine, you'll see!"

I would roll my eyes and dismiss her comments completely if she hadn't been through things herself. As it was, I still rolled my eyes and laughed, but there was a part of me that was listening. You know, women who marry much older men are often accused of looking for a father figure rather than spouse. Is it strange that I gravitate towards having older female friends? I guess it kind of makes sense. My neighbor is moving next year and I know I'm going to miss her.

Tuesday, April 5, 2011

new

I created a new blog with a new pseudonym and no one knows what they are but me.

It's not to replace Snowflake, which has become important to me. Maybe my boys will want to read this later. But I thought I'd try to write about something else. Maybe a story with fictional characters. Or some embarrassing poetry. Maybe I'll revise my sloppily written doctoral dissertation into a book. I don't know! For 2 days I have visited the new blog only to sit there looking at the blank space, not able to type even one word. I can't say it's going well or that it's even going anywhere! Just waiting to see what eventually comes out of the closet.

remembering

Mom, when is Regina's birthday?

I wasn't expecting this question and found myself just looking at my husband.

February 11, my husband replied.

She's 94 years old, right?

She was 92 years old, he confirmed.

You know that Regina's no longer here, right? I asked.

Yes. And you're taller than Regina, too!

My husband looked at me. He's remembering her, she was in his life, too.

Monday, April 4, 2011

L O L !

This headline makes me laugh. We can't even agree on what autism is in human beings and who really has it. More than 50% of kids eventually drop their diagnosis. But now the implication is that we've created autistic mice? From some mutated gene found in just 1% of autistic human beings? Are you kidding me? How can you tell? Are these mice not looking when being spoken to? Are they engaging in repetitive behaviors like just running around on their wheel all day long? Give me a break!!

Mice with Autism

square one

Jake ended up in our bed at 5am.

Gimky, why can't we just get him an MRI to make sure?

The doctor thought it was unnecessary....

And this is the fear of parents. Not wanting to overreact and make a big thing of a small thing. But what if there is something truly serious going on and we didn't know and should have, or we just simply waited too long to investigate properly? We'd never forgive ourselves for not turning over every stone.

I couldn't help but be reminded of Schubert's Erlkonig this morning. This work so convincingly depicts the battle and confusion between what is real and what is imagined and so grippingly plays with a parent's helplessness. Something is wrong, there's confusion and delirium, and the parents are rushing home to safety with their child. The amazing Jessye Norman, here, tells the story in the voices of 4 different characters while the pianist accompanies with the frantic pounding of the horses hooves. The father tries to reassure his child, who thinks a charming yet conniving spirit is trying to woo him away. The father tells him it's just the wind and tries to convince his child and himself that everything is okay, but to no avail. They arrive home, and the worst has happened.

I admit, in broad daylight, this analogy appears a bit melodramatic. But in the still of the night, it's easy to worry about failing my boy. It is concerning that these nightmares began so suddenly and consistently, 4 weeks ago. On his 10th birthday to be exact. Without any real explanation to be found from his social environment, again we are back to what we wanted in the beginning. A physical examination.

Sunday, April 3, 2011

good night

Mom? Aren't you going to come and say good night to me?

I'm coming! I rushed through the last dishes and sped up the stairs as I dried my hands on my jeans. I laid down at his side, this time not getting under the covers.

I have a feeling you're not going to have a nightmare tonight, I told him while cuddling up next to him.

How do you know?

Because you have nothing to worry about and you had so much fun this weekend! Think about it. You spent all day with Mark on his birthday. We had a great hike up Turkey Mountain, today, and you went running with dad only to end up playing wall ball the whole time with other 4th graders at the track. And you know what? School is going well! There's nothing to worry about, Jake. It's possible you could just close your eyes, tonight, and fall fast asleep.

But I haven't been worried this whole time and I've been having bad dreams.

Well, I just have a feeling you're going to be okay tonight.

Jake was exhausted. Last night, my husband and I had met up with friends. We came home at 10:30PM and saw Jake's light on from blocks away. He was afraid to go to bed. I would be so embarrassed to have a nightmare with the babysitter in the house, he told me. 

I watched him close his eyes and start to breath heavily. He was tired. 10 minutes later, he jolted awake, looked at me and said ugh. Startling yourself awake is normal for someone who is tired as you! Close your eyes and try again, it's okay. I stroked his back and soon he was snoring.

Of course I didn't really know that he wouldn't have a nightmare, tonight, and still don't know that he won't end up at my bedside. But it's time to talk about the possibility of not having them. Tonight is definitely a step in the right direction.

Pee Dee

Pee Dee called this morning. Filled me in on the surprisingly nice gathering that Richard hosted at Regina's apartment weeks ago. After not much more to say, she asked 'how are your boys doing?'

"They're fine," I found myself replying in knee-jerk fashion. Then there was an awkward pause verging on silence. Did she know about Belac? I couldn't remember if I had ever said anything over the years. Then she said something like 'I wish I could say the same for my grandson.'

And now I remembered. She knew. And not only did she know, she had first-hand experience with her own 9 year old grandson. His latest new therapy was neurofeedback, which she wasn't at all sure about except that it had cost a fortune. She told me about her yoga instructor, whose son had recently learned to vocalize his first word at 14 years old: 'uh.' What right did she have to complain?  Didn't I know.

We exchanged funny and sad stories. An hour later, we hung up. I looked at the calendar. Regina died 2 months ago and now her best friend and I have become friends.

Friday, April 1, 2011

promise

Belac 3/11

I can think of one good thing about your nightmares.

There's not one good thing!

Yes, there is. We've talked every single night since you turned 10! I mean, we've always talked but not like this and it's been really nice.

Yeah, I guess so.

But I just want to tell you something....

Okay.

We'll still talk like this when your nightmares go away.  I promise we'll always hang out like this at bed time even if you don't have nightmares. Got it?

Got it.

play day

The phone rang at 9:30pm, last night, which is kind of on the cusp of being too late in the suburbs if you're calling someone you don't know. Elementary-aged kids are usually in bed. If you work in the city, you're probably heading there, too.

"Gimky? I hope it's not too late!"

"Not at all. Is this Joe's mom? I'm so happy you called!"

She sounded nervous and blabbed her head off. I could barely get a word in edgewise. She coughed now and again and I wondered if she was a smoker. She told me that she's a single parent. That she had 2 major surgeries last year, which she described in detail. She was unemployed and things were tight, and she still wasn't recovered from her medical issues. They lived in an apartment and play dates were hard for them to have. She never looks at email but she did get my email. She thought she had left us a message earlier this week but couldn't remember. Her son had been bugging her to respond to our invitation for a Friday play date and now it was Thursday night and she thought it was too late to call but he had begged her to pick up the phone. She had told him that if we saw him at school pick up and we asked again, that he had her permission to just go to our house, but if I could only see his smile right now and she's so glad she called....

I felt sad listening to her blab, but kept it light, interjecting with "Oh my God!" and "oh no!" and friendly chuckles. I was suddenly thinking about my mom, who I realized was probably just as lost and depressed as this woman when we were kids.  "Don't worry about a thing! We're totally thrilled he's coming and if it's easier for you, I can drop him home before or after dinner, whatever he wants. I'll call your cell around 5 and we'll touch base?"

I went and found Jake still awake in bed.

Guess what? Joe's coming tomorrow.

Finally they called! Was it his mom or dad?

His mom. I think his dad lives someplace else.

Why?

His parents are divorced.

Why?

I don't know. Maybe they don't get along. It happens to some marriages.

He must miss his dad. No wonder he's depressed.

He's depressed?

Well, I can tell he's sad.

Really?

Yah.

So what do you like about Joe?

He is really funny. Even though he's sad, he's really funny, Mom.

That comment made me smile for two reasons: 1) My boy has a good soul. And 2) if this boy manages to keep his good humor, he'll be okay.