Happy Winter

(Belac 12/09)

Tomorrow, we head north to Canada to spend winter break with my husband's family. We are off to the land of sky-high snowdrifts, starry nights, and snow pants and long underwear. There's no internet or cell phone reception, just a single phone line with no call waiting. It's as far away from life as we know it.

So this will be my last post of 2009. First, thank you for reading. I appreciate that my story seemed to interest a few people! It's nice to write when someone's reading and that was such a nice gift you gave me. I also want to take a moment to wish you all so much peace, hope and love in the new year. Happy Winter, my friends!

Gimky  

Crazy numbers

(Belac 12/09)

It's almost 11pm and I just got home from Target. The whole house is sleeping, including the dog. I just poured myself a little nightcap! Have I ever mentioned how I hate shopping? I mean, I REALLY hate shopping. At least the kind where you have to take your wallet and go someplace, walk around looking for stuff, god forbid try something on, then wait in line to check out. So you can probably guess that shopping in December, of all times, kind of pisses me off. It goes without saying, that I would have rather been in my pajamas and putzin' around the house, tonight!

Anyway, I had to go out and buy gift cards. Belac, alone, has 12 teachers/administrators, therapists, and a babysitter. Throw in Jake's teacher, the hall monitor and the playground monitor and you know.... it's a lot. Scented candles go to the monitors. The therapists will all receive the same amount, the boys' homeroom teachers will get a little more, and Belac's Aide will get the most. So there you go.

I had tried to figure out a way to limit this expense, but all things kept pointing in one direction. Recently, I heard a piece on NPR about wasteful giving and the value of gift cards. This morning, I watched the hall monitor's desk pile up with cookie tins. I also ran into Billy's mom, who told me what she was doing for his 10 teachers. It certainly sounded generous enough, collectively, but she lamented that it wasn't much as individual gifts.

Jake's situation is straight forward. I am giving his teacher a generous gift card. His teacher has gone well out of her way to look out for Jake, a new kid at school. She has checked up on him during recess and has been proactive about pairing him up for school activities. I'm so grateful!  But as much as I would love to do it, I can't possibly give such a gift card to each of Belac's 12 people. And dividing such a gift card among them is absurd because it wouldn't amount to anything! It's impossible. I am more inclined to give too much than not enough, and with careful planning, we can do what we do. But can I just say, these numbers are crazy.

'Best day ever'

We woke up to fresh snow, everywhere, and eagerly headed outdoors. There is a great park with a superb hill for sledding, and it's near our old house. Up and down the hill we went, and as the morning progressed, the park started to get crowded.  "Let's go home and sled," suggested Jake. (Hmm. Did he just say home?) "You mean our old house?" I asked. "Yes, that's what I meant."  Despite the cold, no one wanted to join me in the car. The boys and my husband preferred to walk 'home', just like old times.

The kids headed straight for the backyard with their sleds. I stopped to chat with our neighbors, who were all out shoveling. My next door neighbor - not meaning any ill will - said "maybe things won't work out and you'll come back." (My god, I seriously hope not.) "You never know," I mused with a chuckle, "you never know!"

Out of courtesy to my old neighbors, I haven't said much about Sunny Patch and how grateful we are to be there. The truth is, I would live in a basement in Sunny Patch before coming back to our beloved house with the hill. My boys' schooling is our biggest priority, even if we don't live in such a nice house again. Even if we are just squeaking by in trying to make it happen. Dare I say, even if we lose all the equity in our house. Of course I don't want that, but if someone came at us with a lowball offer, we would likely sell. Unless you have a special needs kid, it's probably impossible to understand all of this. And now that we've found a school that seems capable of accommodating both boys, going back to the house with the hill is simply not an option. If that happened, I would view it only one way: colossal failure on our part.

As we waited for the boys' clothes to dry, they ran around the house and called out to be found from their usual hiding spots. My husband and I went from room to room marveling at how bright and happy the house looked. We could hardly believe we ever lived there. Later, when we returned to Sunny Patch, our current 'home,' Belac proclaimed "that was the best day ever!" It was a good day, we all acknowledged, as we planned the rest of our day.

I guess the advantage of not selling the house, right away, is that we didn't have to let go before we were ready. Is anyone listening up there? Because I think we're ready.

One step at a time

(Belac 12/09)

The internet is an amazing thing. It is astounding that there is this whole other world, where people share intimately about their lives and can be easily approached. In fact, being interested in and examining the lives of these writers (and occasionally interacting with them) is encouraged and not considered intrusive at all. As a mom of an autistic child, I am profoundly grateful to have this whole network of people and resources at my fingertips. Lately, I have been drawn to the stories of adults on the spectrum, some of whom are raising children on the spectrum. I read their blogs with great interest. I find their perspective invaluable. In sharing their own experiences, these amazing people help inform me about my son, our family, our future.

That said, there is - sometimes - too much of a good thing.

Last night, I stumbled upon a blog. The writer was a mom of an autistic child and two neuro-typicals.  In one of her entries, she described her despair at seeing her child's emerging realization that he has no friends. I wanted to just cry with her, this woman all the way on the west coast! The other day, I saw a boy recoil from Belac's attempt to be friendly. Reading this mom's words gave more breath to my own fears. I tossed and turned. By the time the dog was barking over something at 2:30am, it was all I could think about and I was up for the day.

It was only 12 degrees fahrenheit, when the boys and I began our walk to school this morning. We bundled up and remained together at first, with Jake walking backwards beckoning Belac to try to catch him. But by the halfway point, Jake ran the rest of the way, leaving Belac and I to trudge ahead quickly. I was impressed. When we first arrived to Sunny Patch, my kids could barely walk any distance without stopping and whining about being too tired. They seemed so weak and it was concerning. Would the kids be capable of walking the half mile to school, everyday? I would not have been able to imagine this morning, back in June. That by the 67th day of school, my kids would be walking without complaint and even running to school.

I just have to believe that my boys are going to be okay. Sometimes, that will mean that they'll be able to walk when I worried they couldn't. But other times, being okay means I'll be driving them because they couldn't walk, or allowing 20 minutes for a walk that should have only taken 10.... Helping Belac make friends is going to be tricky and we just have to take it day by day. But I have to remind myself that there have been many days, before, when we despaired and got through whatever it was with better than expected outcomes. I have to remind myself that there's more than just one 'right' way of going about things. And without making up some fairy tale ending, it's really okay to look forward with hope.

Striving for fair

(Belac 12/09)

I think the topic of money can mess up a lot of relationships.  My mom's relationship with her brothers suffered over family money. In her case, her brothers received my grandparents' estate to split between them, while my mom was considered married-out-of-the-family. Pretty crazy, huh? It was all the more devastating, in a way, as my mother physically cared for both her parents when they each died of cancer in our family home. This was after they lived in good health with my parents for many years. If you can believe it, my mother was named executor of the will, while only her brothers were recipients. As awful and messed up as it sounds to most people, she honestly wasn't disowned and it really wasn't personal on the part of my grandparents. It was just the traditional, patriarchal way of going about things.

Over the years, my sisters and I saw my mom's family ripped apart over money and vowed never to fight over it between us. Now and again, my mom has felt the need to reassure us that my parents would be leaving everything equally to their 3 daughters. There would be no favorites, no husbands and no grandkids involved in her will. Fine, fine, we've all said, don't worry about us, Mom.  But several years ago, my mom talked to me about setting up a trust fund for Belac. It was an extremely thoughtful and forward-thinking gesture, especially during a time when I was just trying to get from one day to the next.  I didn't give it much - if any - thought until recently, when the subject came up, again. This time, from my sister. Whether my sister felt her own daughter was being overlooked or not, she would never say. But the situation gave me pause. I told my mom that I was grateful, but if she set something up for Belac, she should really do it for all of the grandkids. Belac's issues might be obvious now, but another grandkid's needs might only appear later. You see? Equality can be this elusive thing and it starts to get complicated quickly. My other sister doesn't have kids yet.  What about her, or her unborn children?

A while back, I wrote about a lime green house in town. I was thinking about such a place in terms of long-term planning for Belac. Sure, the set-up would likely lighten a future burden on Jake. His brother could potentially be financially-independent after his parents are gone. But the plan also assumes that Jake would have to make it on his own, as his brother would get first dibs on the family home. Isn't there something very wrong with this?

My mom has a somewhat tragic family history. One day I will try to write about it. But it goes without saying that she felt her parents took her for granted. I think my Jake knows that I love him fiercely and that I would do almost anything for him. But I never want to give him reason to doubt it. A parent's legacy is one of the most important messages to her kids and it deserves careful consideration. I know what the message is, but I'm not sure what the solution is, yet.

2010: a personal odyssey

In weeks, the New Year will be here. In February, I will turn 40. In June, I will be married 10 years and soon, my kids will be 9 and 7, no longer babies! I think it's a good time to take an honest look at myself and think about my life goals. Yes, I know. There are my boys! Raising my boys properly is - without question - my number one priority. But there needs to be other things. For years I have obsessed about my kids, especially Belac. But I don't want the next years to be living and breathing my kids, day in and day out, to that same degree. It's just not healthy for any of us. Not to mention, I do have a husband, and we would be well-advised to pay more attention to each other!

So here are a few things that come to mind. First, I'd like to lose 10 lbs. It sounds like a frivolous resolution amidst this seriousness, I know! But I have gained this weight over the past few years and I am sick of it. I want to begin the next decade in shape and looking good. As for the piano, I realize I don't need to play more. I enjoy my chamber groups but know I'm not exactly God's gift to the piano. You may have also noticed, the world is not really screaming for more classical music concerts! I don't need more piano students, either. It's enough. But I do love the music classes, to the point that I completely lose myself in them, especially the ones I run for special needs kids. I also have the strong desire to start a service for parents of these kids. It would be somehow cheap, if not free, and would make this whole area of special needs in metro NY much more transparent. I feel a responsibility to protect this community and cleaning up the muck out there would be a great start.

So there you have it.  I don't mention the impossible items on my wish list. And maybe these aren't exactly the world-changing goals I recently aspired to. But I think what I've written here is within my reach and a step in the right direction for 2010. [cue music: Also sprach Zarathustra!]

Dancing with the star

(Belac 12/09)

On Friday afternoon, I picked up the boys from school and had a little chat with Mrs. Rondo, Belac's aide. Belac had needed more redirection than usual, that day, and there were a bunch of unusual behaviors addressed. In particular, there was an incident over a bucket. His homeroom teacher had a bucket full of good deeds on slips of paper. Belac picked it up with his mouth and carried it around the room. "I don't know why he felt compelled to do that," his Aide told me. "I will speak to him about it," I told her. Was it attention seeking? Did he think he was being funny? Did he stop right away when asked? I tried to understand it better. But deep down, I didn't think this was too big of a deal. He didn't hurt anyone, he didn't run away, it wasn't all that disruptive, and it seemed within the repertoire of nonsensical things a neuro-typical would do.

Over the weekend, my husband was going through some old boxes and found a CD titled "Beats of Passion."  He appeared before me, waving the CD, and poked fun at the title with dramatic declarations.  "What IS this?" he asked.  It was the CD of a drummer I had performed with, several years ago.  My husband unwrapped the plastic and turned the music up. It was very foreign sounding, relentless, and anything but background music despite its lack of melody. On some of the tracks, the drummer was wailing along indecipherably, causing my husband and kids to laugh their heads off. Not exactly the reaction I'm sure this drummer would have wanted! The next thing I knew, the music was on full blast. Belac was dancing with punctuated, exaggerated, laughter-inducing movement. Jake hit the mute button, Belac froze. Jake hit play, Belac danced wildly. It was a game of Hot Potato a la Beats of Passion!

As I watched him dance, it just made me think. I know that Belac should not have carried his teacher's bucket with his mouth and that we have to continue helping him behave appropriately. But whatever he was doing there, I realized, was kind of what he was doing here. He was having fun, and in this case, he was loving this crazy music, moving to it with exactly the right kind of feeling, and reveling in our admiration and appreciation. We hover over this kid all of the time. We are helicopter parents and teachers times 1000. However necessary this approach is in managing his behavior and engaging him in the world around him, and however well-intentioned our efforts are, one thing has become very clear to me. That beautiful spirit of his needs nurturing. Let's not squash it.

Keeping up with Regina

Regina is still not really talking to me. Our conversations have been stilted, lasting no more than a minute or two. A few days after I mustered up the courage to call, I called again. She was no longer at her initial number and the person who answered could not tell me where she was. I called the main switchboard and they connected me to her new room. "Can I visit you?" I asked. "When I feel better," she said, "I'm exhausted." I called a few days later, she was no longer at the hospital and no one could tell me where she was. Obviously, she's not keeping me posted.  After several phone calls, I found out she's now in a rehabilitation facility.

I called. I asked how things were. She sounded strong, almost happy, just like herself. After a difficult week end, she explained, things appeared better. She had had it out with the rehabilitation people, her friends came to stand up for her and some sort of agreement was made. We were almost having a normal conversation, and then, very abruptly as if she remembered she wasn't supposed to be talking to me, she said "Okay, I must go now," and hung up.

I know. She doesn't want to let me in. I never called while she was in hospice and she's made up her mind that she can't rely on me. If she keeps pushing me away like this, I might just throw my arms up and give up. It's hard to keep calling when it seems she doesn't want to hear from me. But it's not really about what I need, is it? She's the one in the hospital.

If I step back a little and think rationally, I know I've meant something to her. She used to be my next door neighbor. She would ask me about the things she heard me practice through the wall we shared. We had a lot of meals together. Among many things, she taught me how to make a spectacular cup of coffee. I checked up on her when the weather was bad and would often knock on her door as I was coming or going, just to say hi. When there was that big black out in NYC, we huddled together in the dark with my babies and passed the time talking about survival techniques and the things people did to preserve food. I saw her almost everyday. She was a good friend. I also knew her to be a proud woman, stubbornly independent and always the helper. Whenever the soup kitchen was on the brink of canceling because of inclement weather, she always pushed to open. "These people need us," she'd say. She's not the kind of person to let anyone down, and it goes without saying, she would not have let a day pass without calling me in hospice. I seriously let her down.

(Learn from my mistake, dear friends! Avoiding something hard only makes it so much harder....)

So I keep calling every few days and hope I'm doing the right thing. She's a dear friend and I was stupid. What's more, it's not like she's my sister and we have a whole lifetime to figure it out. She's 90 years old and there's no time to waste.

Tragedy averted!

I received an interesting phone call, a few days ago.

What did a recent craigslist ad do for us? Apparently, our For Sale ad caught the eye of a film studio at a nearby university. They wanted to film a movie at our house. They mapped it, studied photos, and thought it would be the perfect setting for their project. They wanted a week in January. Pretty interesting, eh?

Over the past couple of days, they did the hard sell and we talked over the details. The university would extend a generous insurance policy to protect all of  us and the house. There would be a crew of 10, and they'd be at the house 6-12 hours a day. Auditions were held, professional actors were hired, and an experienced cameraman was in place. The Director was a student on the Dean's list and his professor was overseeing everything. I was intrigued but concerned about potential damages. My husband joked, 'Let them burn the house down. Financially, it might be the best thing for us!' The university would pay just a token honorarium, but it's not why we would have done it. It would be kind of cool to watch a movie with scenes from our house. It would be like a souvenir, I thought. It's just sitting there, anyway, why couldn't it help some poor film department?

Pretty cool, right?

Well! I only thought to look at the film's blog, last night. I read everyone's bios. (Nice!) Then I started reading the story. It opens like this:

• A young family makes their home in a sweet, little house. (Awww! There's our house! Remember when we used to live there? Look how yellow it was, I had just gotten it power washed.)

• The husband is a school teacher, the wife is at home with their baby. (Exactly the kind of wholesome family that should buy our house! But this is definitely fiction. I wish a teacher's salary would be enough to afford this house.)

• We are first introduced to the couple in bed. (That's our bedroom! Wait, what kind of story is this?)

• A baby can be heard crying in the background. (Aw! She's a girl! Must be in Belac's room, the one we painted yellow for the staging. Jake's room still has his blue and red stripes!)

(What happens?)

• The couple heads down the hall (my boys happily ran back and forth there!)... only to find that something is dreadfully wrong. (Oh no....)

• The cat has smothered the baby to death. (WHAT??!!?? NO! NO! NO! Even if it's just pretend, NOOOO!!)

OY! Did I ever have a good laugh at the absurdity of all this.

The plot was an instant deal breaker. I will not sign up for this and have this house be the stage for a tragedy. It would interfere with our memories of this house. And who would live here after seeing such a thing? No movie! Nope. No way. Definitely not. Case closed. Get it? It's NO.

"I'm so sorry we can't offer you the house," I politely informed the university. "Our priority is to sell it and we need the freedom to show it at all times. Good luck to all of you!"

Renting

August 2003

Got a call from Allie, my Sunny Patch friend. "Gimky," she exclaimed, "did you notice there's another house that just went up for sale near school? It looks nice and well priced."

"You seem to have forgotten that I haven't sold my house yet," I quipped.

"What about the swapping? Any house that's going on in December might be a sign that someone's desperate."

"I've stopped looking," I informed her.

"Why? What happened?" she asked in disbelief.

I had recently shared an idea with her. A few weeks ago, I discovered that there were 2 houses in Sunny Patch in pre-foreclosure. I spent some time trying to understand what was at risk for those owners. Could one of them be enticed to buy our cheaper house with cheaper taxes if we bought their pre-foreclosure and assumed their necessarily higher balance and higher taxes? If we really wanted to go down this path, there might be a compelling case to be made. But the the thing is, after doing the research and drafting a few letters, I came to realize that I don't want a house.

To be honest, I have no appetite to be tethered to another property. You know what it is? I can't take anything for granted. What's good now, could be bad tomorrow. I want to know that if things don't work out here, we can pack up and move.  My husband has his job now, but do we really know he'll have it next year? How do I know that middle school won't offer up a huge can of worms?  And just look how long it's taking to sell our house! 9 months and counting. We want desperately to move on but can't.

Soon after we moved into the house with a hill, I distinctly remember telling my husband I could live there forever. I couldn't imagine any reason why we'd ever have to move. How naive I was!  Things change, circumstances change, unexpected things happen. Little did we know that we were living on borrowed time. Of course, I'd like to think that I've already been dealt my big disappointment and stress in life and that things are only looking up from here. But I honestly don't know that, so I'm not counting on tomorrow.

My party line is  "real estate may not be the sound investment it once was." At least that's what I told Allie, yesterday. Maybe I'll feel differently once we finally sell our house. Maybe we just need a year or two to breathe before making the commitment. But one thing is for sure! I am definitely not ready to - again - be a homeowner, any time soon.

A yucky start

(Belac 12/09)

The weather is yucky in NY, today. There's freezing rain, puddles and flooding. My kids and I trudged through it only to find the school closed. There's a 2 hour delay, today. We returned home and received a call.  My husband was in a car accident, just a few blocks away. No one was hurt, but the car was pretty banged up. We met at home, not 30 minutes later.  "Hi honey, how was your day?" I asked him.

"It's going to be at least a $500 deductible," my husband began, as he explained to me what happened. The driver who was at fault never stopped, but there were witnesses and the police came.

"You walked away from this and it could have been way worse," I pointed out.

It's like that movie "Run, Lola, Run." A split second later and maybe an ambulance would have been called. Then again, had I checked the school closings, my husband would not have lingered to help us out of the house.

Anyway. It happened. His car is now at a the shop for the next 5-7 days and he just called me from his rental car. In less than 2 hours from impact, we're all moving on. By the way, we love Geico!

Tipping

(Belac 12/09)

When Belac was 4, he was in an integrated classroom at nursery school. This meant his class comprised of 6 kids with needs and 6 'typical' kids.  That year, when the December holidays came around, the discussion of class gift-giving began. The typical families decided to do their own thing, leaving our 6 families on their own. We decided that each family would chip in 100 dollars. That meant the co-teachers would each receive 200, and the remaining four, (speech, OT, 2 'typical' teachers) would each get 50. None of us were any more wealthy than the families of typical kids, but I know for certain that our gift was relatively large. We felt grateful. We recognized that our children required extra time and attention. It's what happens when you feel thankful, you feel compelled to be generous.

I didn't grow up in NY and was only introduced to this sort of gift giving/tipping phenomenon when my kids entered school here. I am positive that this did not exist in the mid-west. In fact, I clearly remember making my 4th grade teacher, Mrs. Wilson, a little strip of something that I learned how to weave in art class. I presented it as a 'shoe buffer' since I ran out of yarn and it wasn't that long. Other packaged gifts piled up on her desk. If there had been a required tip or collection instead, I'm sure her desk would have been more empty in lieu of an envelope from the class.

In NY, a good number of schools and camps take class collections for gifts and print up tip schedules. $10 here, $20 there... I remember first seeing one of these tip lists at Jake's nursery school and my jaw dropped at the obscenity of it. (Why did it have to be cash? What about a thoughtful card and some other kind of gift?) At some places, these tips and fees are not just a mere suggestion but an obligatory fee. Last year, I was hounded by the PTA to send in my December appreciation check. What choice did we have in the end. We were anything but ungrateful and made our contributions obediently.

Whatever my initial misgivings, though, there were times I actually wanted a tip guide for Belac. What began, innocently enough, now spiraled out of control and I needed a road map that didn't exist. I can't even begin to tabulate the kinds of 'tips' we gladly - but with great deliberation - handed out over the years, I long stopped keeping track.  A busy nursery school director came to our first IEP meeting. We were so grateful and thanked her with a $50 gift card. Around the time of another meeting, Belac's classroom teacher was undergoing chemotherapy and missing work. She came to advocate for him in a district meeting, which resulted in a new school for him. On that day, we slipped $300 into her thank you card.  The Aide's birthday came a few days after Belac's escape from school. I only found out about her birthday, accidently, but took the opportunity to give her a $50 gift card. I wrote "When you're not running after my son, I hope you can find some time for yourself. We appreciate you so much, Happy Birthday!"  There are no guidelines in this area. It's just you and your gut and what you can do  at that given moment.

So it's now December, the holidays are upon us and again, I'm thinking about my boys' new teachers.  They've been so good to us. There's the classroom and religious school teachers, also the counselors at after school. In addition, Belac has an Aide, Speech Pathologist, Occupational Therapist, School Psychologist, Direct Resource teacher, the babysitter, the bus driver to after school.... multiply all that by December holidays, end of the year thank-yous, teacher appreciation days, the occasional birthday, and you see what I mean.  As grateful as I am, almost all of the time, these can be frightful expenses.

Yesterday, I went to pick Belac up from school. There were easily 300 kids and adults on the playground (it's a walking district).  I waited in my usual place among the crowd and from a distance, noticed the principal exiting the building. She made a beeline right for me. "I'm looking for your son," she informed me. (Uh-oh. Keep in mind, Belac ran away from school, has been disruptive and behaves not exactly like your model student.) "Gimky, I visited his classroom, today! I was so impressed by how nicely he sat and cooperated for the entire time a VIP visited! I told him and Mrs. Rondo to come down to the office to see me, today, and must have missed him. I have something to give him."

At that moment, Belac came running towards us with his Aide. "Mommy!" he cried out.  "Belac," the Principal said, dropping to her knee, "I  have something for you!" They read his new GREAT JOB FROM THE SUNNY PATCH SCHOOL rainbow ribbon together. "Do you know why I'm giving this to you?" the principal asked, several times before getting an answer. "Because I behaved nicely today!" he exclaimed, jumping up and down and laughing.  And with that, the principal was off on her merry way.

I turned to Mrs. Rondo, his Aide, in disbelief. "There are easily 300 people here and she came out to find... Belac? For this?"  She could have waited until tomorrow, she could have just forgotten, it would have been okay, he had already forgotten. Instead the Principal was good on her promise, seized the moment, and lucky for Belac, in enough time for him to associate that ribbon with his good behavior. "Gimky," Mrs. Rondo told me, also slightly beside herself, "I have to tell you that your son is truly blessed. I, myself, am so amazed at how the teachers and administration support Belac every single day. He is truly blessed."

It will be impossible to give these teachers what I feel they deserve. To steal the line from Master Card, it's priceless.

Friend in Sunny Patch

(Belac 12/09)

On the way to school, this morning, we passed my friend Allie. She was rushing to the train station and we were scrambling to school. We promised to call each other, at least we'd catch up at her holiday potluck.

I really like this woman. I first met her husband, early this year, at a city data message board. He was looking for a wholesome town in Westchester to raise his kids, I was looking for a school district for both my boys. By the time I came across Will's postings, I had narrowed our search to Sunny Patch and another place. His family was 90% decided on Sunny Patch, but as a mixed-race family, their lingering concern was this town's lack of racial diversity. Before fully committing, they needed better indication that they could fit in. Will and I had some exchanges and I was introduced to Allie via email. We joked that between our 5 kids, we could boost the Asian numbers at school by at least 2.5.

My own family arrived to Sunny Patch in late June and I wondered if this family had made it here, too. It had been months since those exchanges. I had their email but figured I didn't need to stalk them, we'd see each other soon enough. Plus, I was a little hesitant. If they dug deeper at city-data, they would know from reading my posts, that I had a child with autism. I was uncomfortable about the things they might assume.  I was also afraid that their reaction to my child would dissapoint me. Now living in the same town, with our kids in the same school... maybe they wouldn't be willing to be such fast friends. I'm not good with rejection.

Then, in August, well into the school tour for new students, a parent turned to me and asked: "Are you the piano teacher?"  (THE piano teacher? What does she mean?) "I am A piano teacher," I replied.  "OMG!" she exclaimed, "I thought it was you! You're 'ladypiano'! It's me, Allie!" After the tour, the kids ran around the playground, leaving us to catch up and chat with the others. As I eventually left with the kids, Allie came running to me.  "Gimky, I hope that other parent didn't upset you with that remark about special needs. She obviously didn't know better." I barely gave it a thought at the time. No, it hadn't upset me. But that she was concerned that it did, was probably the sweetest thing of all. I knew, right then, that the possibility of a good friend was there.

We've since taken turns hosting family dinners and have met over coffee several times. She's funny and in social work, making for interesting conversations. Our husbands have technological geekiness and ping pong to bond over, our children play together, nicely enough. After this chummy relationship was more or less established, she revealed that she had googled me, right from the start. She studied my head shot and read, among other things, that I studied at Juilliard. She remembers telling her husband that I was another Asian with another doctorate and probably just another pretentious, materialistic Westchester mom that she could never be friends with. It made me laugh out loud. (I guess I should change my photo.) I'm glad we reached out enough to dispel whatever false impressions we made virtually. It's also interesting the conclusions we draw (and the stories we tell)  to protect ourselves. I'm glad we got past it, what a nice friend I have in Sunny Patch!

By the way, we just discovered that Will's father and my father were classmates at a small college in Taiwan, over 40 years ago. What are the chances of that?

The house

(Belac 12/09)

I am, once again, waiting at the house. It was scrubbed down, recently, and now glows a fluorescent yellow against the graying backdrop of approaching winter. Every light is on, the house has warmed up, and a barely audible Mozart plays in the kitchen. I nurse my lukewarm coffee as I wait for the next potential buyer.

I love this house. We moved here with innocent hopes, there wasn’t a cloud in the sky back then. I learned how to have people over and to really cook, here. I was neighborly and taught piano to kids nearby. My boys amused themselves endlessly in the backyard, climbed their first trees and rode their first trikes. We spent hours drawing with chalk on the driveway and wading in a plastic kiddie pool during the summers. My husband bbq’ed every single week end, come rain or snow.

Our time in this house also marked our early relationship with autism. We came in an April and received Belac’s diagnosis by October. We have early photos of him, sitting next to the garage, digging and pouring dirt, exactly the same way, over and over again.  We thought it was cute - at the time - in a city boy becomes country boy kind of way. Our screen door still hesitantly clicks shut, reminding me of time passed. That door was once the center of my son’s attention and often the source of his aggravation when we came and went. 

As I give a tour, I point out our double paned windows with built-in child safety locks. What I don’t say, is that we only discovered those locks after my son escaped out a window. We didn't know he was missing until we heard a passerby honking furiously. I can also show photos of our nursery school/therapy room. We were supposed to eat in the kitchen, but autism revealed itself before we got around to getting a table for it. Instead, every toy and puzzle was to be found in the kitchen. Each play thing was stored in a clear plastic container, labeled, and neatly placed on shelves for any therapist and child to access.

Whatever each day presented, this house was a bright and happy one. Sunshine nudged me out of bed every morning. The backyard was our boys' paradise. We had space, making it easier for my family to stay. The house was our sanctuary. It was a dream, really, but I can honestly say that it’s okay. There are more important things in place, now. If anything, I'm glad we had the chance to live in this house during a really difficult time of our life. If we ever needed such a nice place to call home, it was during those years when our innocence was lost.

Honeymoon in Sunny Patch

(Belac 11/09)

Had my first Parent-Teacher conferences in Sunny Patch. Both boys have room for improvement, but I came away feeling good about where they each are. It’s a nice outcome, considering the gamble we took in moving here. 

Last year, Belac attended a private school for special needs kids. His tuition, not including other expenses, was $44,000. (That amount is not a typo, unfortunately.) My husband received a promotion in just enough time, but it also meant we earned too much for significant aid (only a required $3000 scholarship donation was waived). Though we were supposed to afford it in the eyes of the school, we struggled. Every month, what came in, went right out. We risked over-drawing, all of the time, and had to watch our timing. We prayed that something like our furnace would not fail. But however difficult it was and continues to be (the problem of private tuition is now the problem of paying a mortgage on an empty house), that year was a huge gift. It prevented us from behaving too hastily. It gave us time to research the public schools properly and figure out where to move. 

The process of choosing a district was at first daunting and overwhelming. It was very difficult to find out what kind of classes and services schools offer in the area of special needs. It’s not written up anywhere, so you have to talk to people and go see the places yourself, that is, if they even let you as a non-resident.

A special needs lawyer we consulted and other experts in the field suggested a number of school districts in Westchester County. I visited the ones that would let me. These districts would have probably provided well, academically, but they were not environments I felt we should move to and call home. The nature of these districts maintaining their rank combined with the communities’ extreme wealth created a kind of culture that would have been very stressful for our family and incompatible with our values. 

I kept looking. Some districts were too small to provide for certain types of needs, so they bussed kids out. Other districts were too big to handle special needs properly, as there were competing socio-demographic challenges. There was one district, in particular, known to deal well with special needs. I visited with high hopes but was horrified by my visit. This school had all of the special needs classes in one long wing. I heard constant screaming from a classroom, all the way down the hall, and it agonized me. How could everyone ignore this and function? If the screaming came from a room sandwiched in between typical classrooms or next to the principal’s office, they would never put up with this. There would be a sense of urgency to help this kid or remedy the sound from disrupting so many other people. Why were they all lumped together like this, anyway? The administrator told me, “We’re working on soundproofing the rooms.” There was no way I would send my child there.

Finding Sunny Patch, then, was a result of looking at low-ranking "first tier" and high-ranking "second tier" schools and talking to a lot of parents. I spoke with Sunny Patch’s Assistant Principal, who answered all of my questions about their special needs program. She put me in touch with the school psychologist, who filled me in even more. Sunny Patch even came to observe my son at his old school. They were that concerned about placing him properly, even though I was only just beginning the district registration process. The Principal called me into her office to talk to me about Jake, she wanted to know what his strengths and challenges were. (Seriously, did someone think I was related to someone important or donating a huge chunk of change?) In passing, I chatted extensively with Sunny Patch’s OT, who was curious about Belac's private school experience and shared with me some good and bad trends she observed in Westchester schools during her 25-year career. 

Sunny Patch was first tier like every other place I saw. But unlike the other schools, who enjoyed their ‘first tier’ ranking much longer and had even wealthier communities, they didn’t sit around looking for excuses to do the bare minimum. Sunny Patch was engaged from the start, and they have been productive and helpful ever since. We are now several months into the school year and what can I say. We’re probably in the honeymoon stage, and our house with the hill continues to sit, but so far, so good! I'd write them a huge check if I could.

Thank you

 (Belac 12/09)

More than once, recently, I caught myself referring to my son as "Belac" in real time. Today, when I wrote his teacher a note, I hesitated before writing his name properly. Many a time, here at Snowflake, I've gotten myself mixed up, interchanging real names and pseudonyms. How did this open diary of sorts make it's way into my life like this? What a narcissistic, time wasting activity, I used to think. Turns out, surprisingly, I like this.

I have found it strangely liberating to unload about my life, here. Though this activity remains secret from most everyone in my life, and sure, it's a bit weird to reveal personal details to strangers who come and go as they wish, it somehow works for me. When I'm not concerned with maintaining appearances, the truth is easier to find. And there's something in the telling of it that just makes me feel better. What's more, I have thoroughly enjoyed your stories and thoughts!

Thank you, all.

Gimky

Regina

(Belac 11/09)

As you may have read, earlier, my friend Regina went to hospice care awhile back.

As soon as I found out, I called her son in Toronto. He told me where she was. "I'll go and see her tomorrow," I promised. "I wouldn't call or visit right away, let her adjust," he suggested.

A few days later, I called Albert. It was probably cancer, he confirmed.

Even a few days later, I called her friend. "Well," she told me, "we don't know for sure that it's cancer. She refused treatment and surgery and they couldn't know for sure without going in. 'Give me hospice' she told them. Given her age, they gave it to her." Turns out, this friend went to see her on that day and Regina seemed herself, even proclaiming herself 'the luckiest person in the world.' Her friend remarked, "for all I know, she could be there for the next 10 years of her life."

After that bit of 'good' news, I felt off the hook in a way. I didn't feel as much pressure to call. Everyday, I woke up with the good intention to call, but then couldn't, for one reason or another. It was too late, too early, I was out of town, I was distracted by my kids, I was teaching, I needed at least an hour to talk and didn't have it easily... You see, I am very good at avoiding things I don't want to deal with. And even though I knew she could be really sick, I didn't really believe it. Her friend told me she could live for another 10 years, I'd call her soon.

As the weeks passed, it became increasingly impossible to call. I couldn't possibly explain my absence. I thought about her, everyday. I played a concert in NY, a few weeks ago, and wondered if I could swing by and get her. Another day, I thought I could bring her home for dinner. Maybe hospice would allow me to take her for a couple of hours. For God's sake, why didn't I call? What was wrong with me? I don't know, I didn't have any good reason at all. Thanksgiving came and went. I was remorseful, the pit in my stomach was huge.

"CALL HER," my husband instructed me before leaving for work this morning. I took a deep breath and called the number of the hospice. "Could you connect me to Regina's room?" I asked the operator. There was no Regina there. What? I swallowed hard.  "Uh.... Could you tell me... anything? What...? Did she...?"  The switchboard couldn't tell me anything, she simply wasn't on their list. I called her home number, the phone rang and rang and rang.

I was stunned and devastated.

What kind of horrible friend was I? Did she notice I was missing from her bedside? Did she die with someone near her? I had no clue what happened. I was so ashamed of my behavior and couldn't even begin to explain myself. "Please," I begged my husband, when I finally reached him. "Could you please drop everything you're doing and do something for me. Could you call Regina's son. I can't do it and I really, really need to know."'

40 minutes later, we got word. She was at Sloan Kettering and recovering from colon surgery. It's likely she will be discharged soon and may even return to her apartment. I started to cry. What a complete and utter relief.

I took her number and called immediately. "It's Gimky," I said.  There was a long pause. "I have to call you back," she said, "the nurse is here to tell me something very important." I was glad to hear her voice but knew she was beyond furious with me.

Look, everyone. For 40 minutes, I thought Regina was dead. She was someone who fed me chicken soup when I was sick, the kind that takes all day long to make. She found a friend of a friend of a friend who was an autism expert to find out what it was, exactly, that my son has. And she came to almost all of my concerts for as long as I knew her, even though it was a major inconvenience most of the time. She recently turned ninety and always travelled by subway, after all. I care deeply about this woman. I am grateful beyond words. I think our relationship resembled something we each didn't have before, if you know what I mean. And this is what I learned today. So what if I've been scared. I really need to tell her how much she means to me and she deserves to hear it. The greatest gift is love.