bon voyage!

Here is a glimpse of my fish. 3 years ago, he spent the summer with just ankles wet. I love that wave, the smile, the checking back to see the camera and his swimming off without fear. Priceless for so many, many reasons.

Heading far north and back in 10 days Be well, all!

ban

Goodie bags from birthday parties should be banned. It's complete crapola and no one really needs more cheap, useless knick knacks from China all over the house.

I found a whole drawerful of candy and bubble gum when cleaning out Jake's desk. I threw out tons and tons of school and paperwork from both boys. It's just so wasteful, all of this paper that's not even printed on double-sides. If every kid went to having their own computer and sending the bulk of their homework electronically, we'd really save forests. I hemmed and hawed over artwork. Most is original, but for god's sake, there's just thousands of Belac's drawings I found when going through his drawers and shelves, some of which I never saw until today!

You know what's kind of weird? My mother has not one thing of mine that I ever made or did at school. Not one piece of artwork, note or card. Of course, there were tons of lessons and concerts she attended and drove me to and so she participated in the experiences.... At my Juilliard graduation recital, my roommate told me that she glanced back at my mom, who seemed to be holding back tears during the clapping. She wasn't exactly sure.

Was all of our stuff a burden for her? Much in the same way that I'm, today, ruthlessly purging, unsentimentally? Except - despite how it appears here - I certainly keep stuff. I scan drawings, I have boxes of Belac's artwork in the basement, and Jake's pinch pots and boxes he made. I keep a folder of each kid's school work from every year, I keep their Mother's day cards they make at school, they're just so funny! Not at all to say I am better than my mother or that I wasn't a royal pain as a kid. But it's just weird that she basically has no material reminder from my childhood. Other than photos my father took, not one thing. Is that weird? But maybe that's normal, after all I am a grown woman and now she is a Nana!

the story of stuff

A student's mom always makes a comment when she drives by and sees the amount of crap on our curb. Was she ever going to have something to say, today. The last of all the carpet and underlayment, garbage bags filled with linoleum, bags and bags of weeds, boxes and recycling, all lined the road like little soldiers. My next door neighbor walked by. I noticed you've been pulling up carpet, I'm doing the same! We commiserated.

As the boys and I waited for the bus, my neighbor from across the street picked through our bundles of discarded, jagged hardwood. The stuff was just freshly sanded down and in long pieces, but not salvageable as a floor because of the permanent stains. I'm going to use for my garden, he explained apologetically. This Italian man in his 70s grows and nurses the most gorgeous plantings that cover his entire land. I never stopped to think that those pieces could be so useful for something so beautiful, but that's the essence of recycling for you! For goodness sakes, take it all! I insisted.

My husband bagged up at least a 3rd of his closet for goodwill, he's definitely caught the bug, too. I gave Ella the rug and dozens of cello scores, last night, and really tried to push more on her. I even sent Allie's son home with a play tunnel. Just a little thing, who cares? But this morning, she admonished me with hands on hips. They don't want my crap, after all, they're trying to get rid of their own! But what she doesn't know is I still have much more to give her. A little jewelry box for her daughter, a couch for her basement, a few more clothes her little boy could wear... I'm the gift that keeps giving. You're gonna love me, Allie!

clearing out

Just stood at the curb waiting for a woman who was lost in finding me. Had lights and pretty chandelier shades for her. She pulled up. How much do I owe you? Nothing, I told her, as I leaned through her passenger window and stacked it all next to her. I moved these things to the FREE section of craigslist yesterday.

She put her hand to her mouth and I thought she might cry. She had a little girl in her backseat. She told me, I was dusting my lights and my thumb literally went through one of the covers because it was just paper. I think these will last a long time, I pointed out, they're satin on the inside. Enjoy them!

I am going through my house like a madwoman. Garbage and recycling day is tomorrow. Someone is picking up the china cabinet. Ella comes soon to eat and hang out. When I drive them back to the city, I'm giving her a rug for her studio and anything else she might want. Clearing out, it's the best feeling!

books

I found a couple of books to take on vacation: Smart and Scattered and No Mind Left Behind.

As the kids played outside this morning, I scanned the first 84 pages of Smart and Scattered in 20 minutes. Blah, blah, blah.... Why do some people use so many words to say not very much at all? Just get to the point! What a funny title considering the writing style.

No Mind Left Behind, on the other hand, was a meaningful conversation from the first word. I read the 2-paged acknowledgment and the 3-paged Preface with keen interest. Every word had purpose, every sentence infused with succinct thoughtfulness. The acknowledgment was surprisingly beautiful. Without focusing too closely on his own personal experience or relationships, he let us understand why this subject was so important to him.

I can't wait to get to this book!

sallie mae

My student loan with Citibank was just bought over by Sallie Mae. It's amazing. I am 41 years old and am still paying for graduate school. And the only reason why it's okay is because of my husband's job. What I still owe for my Juilliard education amounts to my entire annual earnings. Are we going to lose creative types in favor of the money chasers? I cannot fathom that by the time Jake goes to school, his tuition in the states may be 100K per year. And I'm sorry. For that kind of dough, he will not become a pianist!

My friend Alyssa and her husband are considering moving back to Michigan. I will never forgive you if you leave us, I told her. So come! she tells me, let's go back together. Well, my husband does wonder about moving, too. But where of all places? To China.... or someplace in the Far East.

On Thursday, we drive up to northern Canada with Alyssa's family to spend time with my husband's family, who live on a lake. Jake asked me, tonight. Mom? If we have any extra money, could we buy a house in Canada?

You mean, to live?

Yeah. So we could be closer to everyone.

You mean to Granny and Pops?

Yeah, and everyone else.

Do you want to go to camp there?

No. I mean to live. If we had a house there, we could just go up there whenever we want.

(It's so sweet I hardly know what to say.)

You want to live in Canada?

Well. For the summers at least.

Isn't it remarkable. We are in a great school district, in a nice house, in a safe neighborhood, with nice people... and still, there is a feeling from a little more than half of us - I am 50/50 - that it's not quite right.

unloading

Someone just came along to pick up my microwave. He was a polite, modest, Spanish-speaking man. I had all sorts of stuff sitting out on my dining table. Could you use any of this? I showed him a crystal candy dish in the shape of a horse (no kidding!), a fondue pot, 2 large crystal bowls with birds on them... all from my wedding over a decade ago and never used. He looked closely, almost nervously at this fancy stuff. It's free, I told him, if you want any of this or know anyone who could use them, please take it all. He left me 20 dollars for the microwave, then stacked everything neatly together and off he went. Awesome!

craigslist rampage

I've been spending considerable time moving things back to where they belong after having the floors done. And in the process, I have taken photos of things to sell and give away.

The china cabinet, for one, is definitely not returning to the dining room. Neither are any crystal bowls and knick knacks I received for our wedding years ago and never ever used. What about the 30 some textbooks I have from college that I've not opened since graduation? Those shelves are better off holding office supplies....

I am so done with keeping stuff we don't need and use. After a day of listing at least 10 things on craigslist without any response, I went back and dropped my prices 50% and more. Suddenly, I have phone calls for a bunch of items and things being picked up today. Hurray!

ice cream

My childhood friend, Alyssa, called on her way to the Westchester airport, just 10 minutes from our house. She was dropping off her husband and had 3 kids in tow. They live an hour away in CT. Want to have dinner? Sure, I told her, but let's be in Sunny Patch because the boys are at a birthday party here.

It was supposed to be just Jake at the party, but then the family extended the invitation to Belac. I was not initially inclined and wondered if it would be better for Jake to have this time by himself. But I remembered that the younger daughter and Belac had been in the same 1st grade class, together. They surely knew that Belac was the one with the Aide. My husband told me, of course we are sending him right over there like he's a normal kid! 

On the way, I reviewed the rules with Belac. Say hello to the kids you know. Even if you don't like something, Jake interrupted, try just a little bit. Always use your words and remember to say please and thank you. Jake, if your brother gets himself into trouble, I expect you to help him, do you understand? And you are to call me if there's trouble. There won't be trouble! Belac told me. He was so excited to go over to someone's house.

It's good and you have to start somewhere, Alyssa told me, as we all dug into dinner at a restaurant around the corner, and Jake is there with him.

Alyssa and I are very close. I have known her my whole life. We grew up in Michigan and both ended up in metro NY, where neither of us or our husbands have family. My husband and I played the music at their wedding. We got along as couples before kids and gave birth to our eldest children within weeks of each other. We have been in each other's children's lives from day 1. In the absence of family, we are family. Today, her kids were exhausted. They also kept wondering if we could go back to the house to wait on Jake and Belac. My husband suggested we get ice cream and he'd get the boys and meet us there.

Alyssa and I arrived at the ice cream parlor first and sat chatting in the window as her kids wandered about the store. My husband pulled up and Belac came running in first. He was overjoyed to see the kids on their surprise visit to Sunny Patch and laughing. Upon entering, he did a funny dance with exaggerated, punctuated moves before giving Alyssa's boy a high five.

She looked at me. You know he's going to be alright, right?

Yes, but when he's...

She wasn't going to hear it. He's going to be alright, she repeated.

compliment

Jake's best friend from our old house with the hill is over. We spent the afternoon at the town pool and he's spending the night. We have known him for years and love him like one of our own. He's such a good kid. Tonight, I made salmon for dinner. It was baked in foil with ginger, garlic, soy sauce, and sesame oil.

Andrew told me. Gimky! This tastes just like McDonald's filet-o-fish but not with the crunchy stuff on the outside!!

I looked at my husband and almost laughed out loud at his 10 year old sweetness.

Thank you, I said in all seriousness, I love that it has such universal appeal!

I like that sandwich, too, my husband agreed.

Kids say the most darndest, amazing things.

mush

I'm happy about the floors that are now clean and no longer carpeted. The biggest transformation is the sun porch which was stripped of the musty carpet and cracked linoleum, revealing an oak floor that was always there. I spent hours scraping up glue and gunk everywhere and after a good professional sanding, there's just no evidence of what this floor has been through.

My floor guy told me, I was convinced 150 PER-CENT there was nothing under that linoleum! It's a porch, he spitted out in some thick NY accent while shaking his head in disbelief, but that's a real nice oak floor you got there..! Usually the best things happen to the shittiest people and the shittiest things happen to the best people. I would say in this instance you're real lucky! 

I laughed. This abrasive, tank-topped, tattoo clad NYer was really just a mush ball. Don, I think that's a compliment, right...? Thank you!

clever and pretty

I have endless appreciation for people who use their imaginations and make extraordinary things with their own two hands. It always makes me happy to read stories like this, when something so wonderful is achieved against all odds and despite the trappings of normal conventions. In this case, the prettiest, most thoughtful cabin for the price of a song!

http://www.nytimes.com/slideshow/2011/07/21/garden/20110721-LOCATION.html

P.S. By the way, NY Times. I keep having to remind you. A piano is not furniture!

sleepover

Spent the night at Allie's next door. The smell from the floor was horrible, yesterday, and after just minutes of being in the house, Jake told me he didn't feel good. I proceeded to send the boys immediately next door. Allie had been telling me all day that we should hang out and sleep over there, but I hadn't believed it was going to be that bad. I thought we'd manage sequestered in the family room....

Sending the boys over was the most natural thing, they play together all of the time. But me and my husband sleeping over there? I was much more hesitant and not inclined. In fact, I would have much preferred to lose a few brain cells or check into a hotel and spend my last dime. And it's not because it isn't completely amazing, next door, or that I don't adore my neighbors. I realize I just have a lot of difficulty needing and relying on other people. If we're not talking about either of my sisters, I have a lot of trouble accepting anyone's outstretched hand. Maybe it's that whole trust thing again and I think I'm going to be on the hook for something in return, or maybe it's my huge pride, I really don't know.

The long and the short of it is that we all ended up sleeping over there. Funny thing is, I also slept well and it was the easiest, nicest thing. I told Allie and her husband, this morning, if you're not careful we might just move in.

more oddness

Can we open these windows? asked the floor guy.

Unfortunately, they don't open.

They don't open? he repeated, not believing me and getting a closer look.

No, they were all screwed shut and then painted over. I think the windows in these rooms haven't been opened in like a dozen years.

Wow, the floor guy whistled as we stood in the stuffy, stale sunporch, that is really unfortunate and odd.

Don't even get me started, I laughed, this is nothing!

mixing it up

Just returned from giving a violin lesson to Jewel's daughter. It just occurred to me that Belac and my violin student may be in the same homeroom class together, next year. And you know, it's not something I am exactly hoping for. On the one hand, I am a well-respected, happy-go-lucky music teacher that has the solution for every problem. On the other hand, I am a mom of a kid who needs more and there's absolutely no easy fix. In fact, that's me and the others they'll see, all standing on our heads, trying to get my kid to engage appropriately and attend to tasks at hand.

It's not exactly two worlds I am thrilled about mixing together. And yet there I went before thinking, accepting another new student for the fall, also from Belac's grade.... Obviously, I just have to deal and make myself okay with this. Maybe the collision of two worlds will have benefits, after all, but I'll just have to see how it goes.

peeling back the layers

We have an office area attached to our bedroom. It has floor in the worst condition of all. Sanding it has confirmed that the previous owner basically used it as a dumping ground for her pets. Almost half of the wood is black, grey and now yellow stained. It also still smells after sanding. Look, my dog is no saint. But actually letting your animals have a room to defecate in? And destroy what would have otherwise been a perfectly good floor? The jury is still out in what they can sand out in the dining room.

And that pretty much sums up the nature of all the work that this house has needed. It started with the asbestos tiles that were laid directly onto end-of-life cedar shingles. Those wood shingles, that should have been ripped off, proceeded to absorb moisture and rot everything to the joists, also causing the asbestos roof to fail sooner than it should have. It's the painting of the walls and floor of the basement to make it more clean-looking for selling, only for it to be peeling and falling off in clumps now. It's the plumbing that wasn't done with the proper sized pipes and then made inaccessible by someone bricking over it in the basement. And it's the carpeting over stains and smells and proceeding to let your animals use the carpet as a diaper, anyway...

You could say that previous owners had limited funds for house improvements and were forced to cut corners. But all that animal pee in the office proves to me that it wasn't just for lack of money. It had just as much to do with not fully taking responsibility and knowingly leaving problems for the next person. Hm. Sound like a familiar theme in national news? Will we come to any agreement by August 2?

I don't regret buying this house and getting it into shape. We're quite lucky, actually, and knew what we were getting into. But the house falling into disrepair is one thing. Finding that problems were covered up, making things unnecessarily and absolutely worse down the road, is another thing altogether. The degree to which that has happened in this house is astonishing.

rain, rain go away

Severe thunder and lightening. Belac sobbing. Dragged mattress into hallway and shut all the doors to the bedrooms. He still has fingers in ears, upset that he can still hear thunder. My husband came with his i-phone to play some soothing spa music and then went to go get headphones. They are now laying together in the dark as Belac wears these huge headphones and my husband browses the internet. Every now and then there is a huge crash and I hear Belac wailing. The storm is intense and it's so hard for Belac.

My poison ivy has really become inflamed and horrible. I have oozing and swollen bumps up and down my arms and knees and on part of my neck. It's painful and I understand this could take weeks to clear up. The house is hot and I have the AC blaring in the BR. And I am tired. My husband and I spent the evening clearing out rooms in preparation for the floors to be fixed tomorrow. It's all good. Except all that carpet I pulled up? Well it's neatly rolled up on the driveway and... soaking up that pouring rain. My bad.

car talk

On the way to circus camp, I mentioned to Jake that I'd be setting up an appointment to see the orthodontist.  Does that sound good?

Mom, I'm willing to live like this longer.

Jake, you accidentally admitted, yesterday, that the reason why you don't smile in pictures is because of your front tooth. So let's just fix it.

I really don't like doing things I have to get 'used' to. It's going to hurt....

Well, one day we are going to have to fix that tooth and when you're older, you'll be glad that you did.

But if you don't care about the way it looks, why bother fixing it?

But if YOU care about the way it looks, we should fix it. Jake. I care about you feeling good! If something is bothering you, you need to tell me so I can help you....

He got up 3 times over his nightmares, last night. He has a front tooth that has grown in perpendicular after removing an extra front tooth....

We rode in silence for a while.

I'm nervous, he said.

What about? I asked, ever so casually.

About the show, he explained. He's performing in this Friday's circus show.

That happens to me too! When I have to play a concert, that is....

Quiet.

You know what I do? I try to concentrate as hard as I can when I play so I blot out any negative or insecure thoughts. I kept pausing between my sentences, hoping he'd say more. It's kind of like a mind game, but I have to force myself to think positively. Otherwise, it would be easy to psych myself out and not perform as well as I could. It also helps to be really prepared.

It's kind of hard to think positively when you're nervous.

True. But it gets easier with practice.

More silence.

I promise that in this first appointment, the orthodontist won't do anything. Let's just see what he has to say.

Are you sure he won't do anything?

Well, maybe he'll take a few x-rays. But I promise it will be a conversation and you can ask him whatever you want and tell him what you're concerned about, okay?

Okay...

M.O.

boys at Jones Beach 7/11

Poison ivy up both arms. Kind of looks like I was searching for a vein and there are a few bumps that have really swelled up over night. Also a long gash on my leg from a slipped chisel and somehow I managed to cut my face, too. But all in all, I'm pretty proud of myself. The carpet, linoleum and staples are now all pulled up. Although the house continues to need significant work, I am hopeful we'll get there some day....

If I could do everything myself I would. I really do not trust the contractors who come by to give quotes on repairs. The prices span a dazzingly broad spectrum for no good reason. And the personalities! I winced, today, when one contractor kicked one of our rotting posts. Um, please be careful, it's barely supporting that corner as you can see....

Obviously, I have good reason to be distrustful of anyone who stands to make their living profiting off our problems. But I realize I tend to be this way in my other interactions, too. Is it autism or was I always this way, being very much the middle child after all? I realize there are very few people I truly trust. Despite how it appears at this blog where I am barely hidden and blab my head off, I don't easily reveal myself to others in real life unless I know it's truly okay. A few weeks back, I was pushing Allie around next door, trying to force some make up on her and basically being a royal pain in the ass as I chased her with blush and she ran away laughing. Two grown women. Then other families started to arrive for whatever it was, brunch I think. 15 minutes later, she turned to me and asked. Are you okay? What did she mean? Of course I was okay!! But I knew what she meant in a way. I had become a different person with the arrival of other people, still chatty and friendly enough, but I had crawled back into my shell. Even at risk of poison ivy and the like, it's my M.O.

planning ahead

Belac 7/11

My husband and I sometimes watch Colbert or the Daily Show by computer at night. During a commercial break, last night, he turned to me and asked.  Would you have been tempted to have a 3rd if you knew Belac would turn out the way he has?

What...? Colbert was back. Pause, push pause! My husband doesn't usually ask questions like this, I ask questions like this. A few years ago and during the height of our stress over Belac's autism, I had my cervix removed after a cancer scare. I basically said goodbye to having more kids.

You know, I still have my eggs.

He rolled his eyes and chuckled. And...?

Well, we could get a surrogate...

Foster kids, rental properties... would surrogacy now be my latest obsession?  I laughed and pushed play.

This morning, we had to send in our decision about the life insurance. Amazing. We were still trying to figure it out on the very last day of our 6 month deadline, although you could really say it took us over 4 years of hemming and hawing from the moment we realized we really had to do this. I was making breakfast while my husband was still in his pajamas and looking over charts again. My husband voted for the permanent life insurance and I disagreed. I was in favor of the other product, which was both permanent life and a savings vehicle. But it costs much more, my husband again pointed out, can we really afford it?

Look, sweetie pie. I turned off the stove and faced him. We can adjust the numbers later if this proves to be unaffordable. But this is not just about Belac, Jake and me, anymore. This is about YOU. I now had my husband's full attention. In 20 years, when this product is fully paid for, you'll be 61. What if you are done working like a dog and want to take a different kind of job? Maybe you'll want to write that book or start that consulting business you've talked about? Wouldn't it be nice to know that you have the cushion of savings to take such a chance? What if you lose your job? This thing forces us to aggressively save for a rainy day, too. This product is not just a death benefit for your survivors, it's a living benefit for YOU. You have been sweating it out for us, day in and day out! And frankly, at this point, there needs to be something in it for you.

Okay... my husband finally replied.

I've been where he is. It's hard to get out of the mindset of considering everything for everyone else. Especially when you have kids and a kid who needs more. And especially when you're the one (my husband) who is slaving away at work, everyday, and you don't have much time to think about the bigger picture. Of everyone in this family, my husband is the most deserving and in the most need of thinking about himself.

If Belac were severely disabled or if both our children were neurotypicals, we would have taken care of our affairs years ago. Figuring out godparents and financial planning would be much more straightforward. But Belac is a bit of a wild card. Will he not have his diagnosis but have difficulty holding down a job, anyway, or holding down a job that supports himself? Could he one day get married and be part of a partnership? Or will he be living with us his whole life? What if something happens to me or my husband or both of us? Could we each oversee him alone or will we need to hire help? And as for Jake. He'll have his own life to figure out and I am determined to have a plan in place so that his relationship with Belac has a chance.

But all this aside, the seller of this life insurance really did all of us such a disservice! Every opportunity he could, he brought up Belac like he was a major problem. He always asked about how Belac was "doing," never Jake. He told me Belac would never go to McGill and lumped him with his own daughter, calling them 'our' children, even though I didn't have a clue - and he never disclosed - what his own daughter's issues were. It's just awful behavior, he never lumped Jake with his typical daughter and rightfully so, it would be a strange thing to do. And I have TWO children, not just one. Every time this guy opened his mouth, it was plain and clear. He was a salesman working on commission and he was going to milk our every uncertainty about Belac for every dime.

Every time he opened his mouth, he pitied us for the burden of Belac's autism. Every time I met this guy, I wanted to say. You really are a F?%&ING;! A** HOLE, you know that? I don't need your F*$!ING PRODUCT!!! But I swallowed my pride and bit my tongue, willing myself to listen to the facts for the sake of my husband and kids. I behaved as admirably as I could, which meant rolling my eyes at this guy in full view, not looking at him when he was addressing me, barely saying a word, and not staying one second longer than necessary before always bolting to the door leaving my husband behind. It was seriously the least that I could do!

In the end, we did the right thing by moving towards permanent insurance and what this guy had been  pushing all along. But if he hadn't been so damn dismissive and insulting about my child over it, we would have come to this conclusion much sooner. My husband and I agree that we will never again refer to Belac's autism by name, especially when dealing with people who have only what to gain from that disclosure. Being more vague about Belac's issues would have sufficed and it would have saved us from this man's obscene boldness and his self-serving attempt to scare us.

preparing for him to make it

 Belac 6/11

I have been in over my head ripping up smelly, dirty carpet. I also discovered that linoleum under some of the carpet is hiding hardwood! My back is killing me, but a contractor's promise of giving me a great deal to finish the floors, so long as the rooms are empty and the floors are stripped, keeps me going. He's scheduled to arrive on Tuesday morning and I still have a ton to do! It's mindless work, though, and I've had a lot of hours to think.

My husband and I have exactly until tomorrow to decide the kind of life insurance to purchase. The results of our medical examinations are set to expire and the question of how much Belac, in particular, would need in the event of our deaths continue to loom. Things will be no clearer after repeating the medical exam and another 6 months, so we just have to make an informed decision at this point. The biggest question is, where will he be at 18? Will he qualify for disability? With an autism diagnosis, the answer would certainly be yes. This means he might qualify for subsidized group housing or health insurance, even if he holds a job. But could he one day lose his diagnosis and not qualify?

On the one hand, the definition of autism might eventually become much more narrow. There might be financial pressure for this to happen, too, given our country's wallowing debt. But putting the nation's economic state aside, my son has made a lot of progress. The Neuro-Psychiatry department at Columbia Presbyterian gave us Belac's autism diagnosis 4 years ago and his name went into a national database. They also informed us that autism is a lifelong disorder and there is no cure. But my son has made considerable progress and continues to learn and integrate. He has gone from a restrictive self-contained class to a typical class with supports. Is it possible that he could progress to the extent that he loses his diagnosis one day?

Look. I am not holding my breath over this. I believe my son will always have his tendencies and he's unique. He's definitely not like the others. But my point is, I don't know where he's going to be. No one knows, though the odds are certainly stacked against him. Apparently, only 12% of the adult autism population is employed in the US.  So it's funny, in a way. Preparing for the worst, in terms of buying life insurance, means preparing for him to lose his diagnosis and the safety net of disability. Ironically, the more we allocate for Belac, the more we must believe that he's going to 'make' it to a certain degree.

Jewel

 Belac 7/11

I became friendly with one of my new violin student's moms. A few months into the school year, I happened to ask the mom what country she came from. Taiwan, she replied. You're kidding! I immediately responded in Taiwanese and then we both laughed our heads off. Suddenly, it felt like she was my long lost cousin or something, to be conversing in this far away but very personal-feeling dialect.

Over the course of the year, I learned more about her family. She's married to a woman and together they have two children. We talked about what it was like to be Asian in Sunny Patch, a predominantly white neighborhood with blue collar roots, and she told me not-so-long-ago stories about being pulled over by the local cops and being asked what she was doing here. She also told me stories about being a two mother family in small town suburbia. We developed a nice friendship, which was not surprising. In a lot of ways we are very similar. We both fit and don't fit the status quo and we share a certain understanding because of our Taiwanese heritage.

There was also a 2 month period when we were dealing with our roof, that I traveled to my students' homes for their lessons. Her daughter's lesson was rescheduled to a time when I had to bring Belac and they were okay with that. For 8 consecutive Wednesdays, Belac played in their family room or sometimes Jewel would give him her i-phone to play with. They got to know each other a little for the first time. I was always prompting him to answer questions or behave properly before I vanished into the den for a half hour, but I never had to worry. He always played and behaved well while over there and Jewel always complimented him directly on what a good kid he was.

A few weeks ago, I bumped into Jewel after drop off. Gimky! she called from her car. Do you have a minute? Jump in! I need to talk to you about something.

What's up?

We pulled over to the side of the road. I hemmed and hawed about this with Raquel last night, she began. Should I tell her? Should I not tell her? I just didn't know what to do...

Of course now you REALLY have to tell me! I laughed. Tell me!!

Well.... Gimky, I was at field day, yesterday, for the second graders. I saw Belac and noticed he spent a lot of time off on his own and not paying attention. It broke my heart to see him this way and I went to help him a few times. I want to tell you that, and she took a big sigh, I saw what difficulties he has at school and you really need to fight for him to get an Aide. You really need to get him some help but you're going to have to fight for it.

I was quiet. I know, Jewel, these big, sporty events are really hard for him. Do you know Mrs. Rondo? Did you see her there?

She was there, but she was with the special needs kids.

Mm hmm. She wasn't with Belac?

No, she was helping other kids.

I was quiet for a minute, realizing I was going to tell her. I'd never be able to take it back but knew it would be okay.  Jewel, I said, I am going to tell you something that I almost never talk to anyone about. And I'd appreciate it if it doesn't become Sunny Patch news, I laughed a little.

Okay...? she said, looking confused.

When Belac was 2-1/2, he was diagnosed with autism. I saw her mouth fall open. I spent the first 2 years of his diagnosis chained to the house over his intensive therapies. We almost bankrupted ourselves sending him to some fancy kindergarten for kids with special needs. We consulted specialists, doctors, therapists, lawyers and educators, you name it. It all started years before we came to Sunny Patch. Then we arrived here 2 years ago, where he's been receiving full services from the school and was assigned Mrs. Rondo as his aide, and he suddenly made a ton of progress. So first of all, he does have an aide...

Oh my God, Gimky, I didn't know! And now it all makes so much sense!

I know, right? It's not so obvious but then just so obvious once you know, right? And the reason why Mrs. Rondo might not have been directly by his side is because they are trying to give him some rope to figure it out. I can only imagine how unengaged and lost he looked. Stick him at a desk with markers and a packet of academic work and he's fine. But to hold his own in a crowded place, in the heat, and with so many instructions being yelled about and he's completely lost. I know!

Oh my God! she repeated, now staring off to some far away place, I understand and it just makes so much sense now...!

I laughed. That you didn't realize until now is huge progress for him. He can kind of fly under the radar, but in certain situations, his challenges are very obvious and very significant. Thank you for speaking your mind, Jewel, it means a lot to me that you care so much!

She was still dumbfounded and had not yet recovered from the news. I smiled and laughed heartily - and for real - at her reaction. I patted her hand to let her know it's okay. You're a true friend, I said as I waved goodbye, see you at the violin lesson!

far

Belac 7/11

Belac and I shared a chair as we waited outside for the camp bus to arrive. I hugged him tight.

Belac, I am so proud of you for everything you did this morning!

Yeah, he replied.

Do you know that me and Daddy were really worried about you when you were younger?

No.

Do you remember Ellen and Jessica from nursery school? You used to have so much therapy! Whenever you weren't in nursery school you had OT, speech and therapy, all day long. Do you remember?

Yes.


You didn't talk to anyone. You didn't play with anyone. You didn't look at anyone. You wanted to be by yourself and spin wheels all day. You used to do this with your eye, remember?

No.

But you've been working really hard. Now you talk to people, play with other kids, you look at people... And today, when you got dressed by yourself and set the table, you made me really, REALLY proud of you for behaving like a big kid and helping me out!

The bus is here!! he exclaimed as he leaped from the chair and grabbed his backpack.

I kissed him goodbye and ran behind him down the drive. The bus was waiting with flashers on and STOP sign hanging. Belac's little legs did not stop as he gained momentum down the drive and crossed the street to get onto the bus from the other side.

He hadn't looked both ways before he crossed and we were obviously going to have to practice this. We live on a busy street with a double-yellow line. I noticed he didn't say or wave goodbye to me, either. He's excited about camp and all he could think of was getting there. He has a one-track kind of mind. Another mom might have been miffed by his behavior, but I was actually quite proud. I know he had been listening to me and understood. He had noticed the school bus. He had grabbed his bag and started running. He wanted to be someplace else where there are plenty of typical kids his age and a high school shadow who is so pretty and funny but blends easily into the background. He was also taking a normal school bus to get there, and not even riding with his brother for the next 2 weeks. He needed none of my prompting today! Amazing. I thank my lucky stars knowing just how far we've come.

A +

 Belac 7/11

Picked up Jake from circus camp, yesterday. He was running around and laughing with another kid. Got in the car and proceeded to tell me everything he tried during the day. None of his usual mumbling and needing to be prompted for details. Then, at home, none of his usual grumbling about math and writing in his journal. In fact, he proceeded to narrate his every little math transaction in comical voices and then speak his journal entry aloud as he typed.

Could you be a little more energized than usual, today? I asked Jake.

Yes! he exclaimed with a huge smile on his face.

Could it have anything to do with being at circus camp, today?

Yes!! he exclaimed even louder, maybe!

When my husband later came home, I heard Jake meet him at the door. "Thanks for circus camp, Dad, it's awesome!"

This morning, my husband was off running during the wee hours. Belac came into my room at 6:30 "Mom? Where's the tape?" What was he doing up so early?

I found him a few minutes later in his bedroom. What are you doing?

Making a book, he replied and not looking up, as he worked on a new story "Cheep Cheep Beach."

Okay, well get dressed and brush your teeth okay?

I'm already dressed!

I looked at him. He was already dressed!

And I brushed my teeth, he added.

What's the matter with him?

I headed downstairs, where my husband had just returned from his run. Gimky, Belac's been up since before 6.

I know! I explained what I had seen upstairs and started making coffee. Then I noticed the kitchen table was all set for breakfast, complete with plates, napkins, utensils and cups.

Did you... set the table???  I turned to my husband.

We both stared at the kitchen table. Did you tell him to do this?

No.... my husband replied.

I ran upstairs to Belac. I'm so proud of you!! Thank you so much for setting the table and being such a big boy today!!

This morning at breakfast, Jake talked more about Chinese diablo, his new favorite thing to do. I overheard him tell my husband, "I'm so happy."  Did you hear that? He's happy.

Even if it's an odd day that doesn't repeat itself until the stars align again, I love it! It was an A+ morning.

Dear Lily,

 Belac 7/11

circus camp

 Jake 3/11

Just dropped Jake off at his first day of Circus Camp. It's located near our old house with the hill. As we drove into familiar territory, Jake asked if he could play with his best friend (our old next door neighbor), today. We'd have to see.

I prepared Jake again, telling him that he'd probably know no one, but that he'd be assigned to a group and get to know some of the kids. I also reminded him that it was important that he try everything. He might not be good at everything but it was no excuse to sit out for anything. Give everything your best shot, that's what will make it fun! This is not school, this is camp!

The idea to enroll Jake in 2 week circus camp was not my husband's or my idea. It came at the recommendation of Jake's Occupational Therapist, who worked with him all year over his handwriting, typing and hand skills, and the school psychologist, who knew about Jake's nightmares and checked in on him now and again. These two people really built great relationships with Jake, both of whom were extremely upbeat and witty. They each pointed out time and time again that they appreciated Jake's sophisticated sense of humor. They also saw him (the O.T. in particular) as a kid that could really use some confidence building and practice with coordination and balance. They thought circus camp would be the perfect thing given his interest in juggling and tricks.

I looked up the program, which looked good, but nearly died upon seeing the price. My husband was quiet on the line, no doubt making some calculations. This is the kind of stuff to spend money on, Gimky. Who cares how long it takes to fix up the house or about spending money on other things. Helping him now is as important as saving for college. Let's sign him up.

big boy

Brought Belac to a birthday party, this morning. It was a "Paint some Pottery" activity with bagels and cream cheese. Everyone dropped their daughters off at the store and I lingered a little with Belac, who was the only boy. He was so happy, coloring his place mat and just following along with the bossy girls from 2nd grade.

Um, Rachel? (The birthday girl's mom.) I've never left Belac alone at a party before. But it looks like he's doing okay....

Gimky! He's doing great. I'm here, Steve's here, if there's anything, I'll call you!

I whispered in Belac's ear. Guess what? There's no mommy or Mrs. Rondo for the next TWO hours and that means you get to be a BIG BOY! If you have a problem, you find Rachel, okay? And you use your words. There is to be NO screaming and crying about ANYTHING. Just use your words and everything will be okay. Someone will help you!

As I left, I saw Lily and her mom pull up. I felt kind of proud (yet now worried) about having just left Belac. (What if he makes a scene because he just HAS to sit next to Lily, I wondered.) I waved like I didn't have a worry in the world and like it was the most natural thing for me to leave Belac at a party by himself, though this was anything but normal!

I could never have dropped Belac off by himself to do something sporty, look what happened a couple of weeks ago. But something arts-and-craftsy was just his thing! The girls love to look at his drawings and are quite bossy at this age, which is perfect for him. The birthday girl's mom is also very positive, outgoing, confident and capable, the kind of parent I can trust. Including him today was the sweetest thing!

Happy Camper

 Jake 9/10

Waited for the bus with umbrella at the end of our drive. Belac was the first to run out and head straight to the house with hardly a glance. He is afraid of thunder and lightening. Jake tumbled out next with all of his stuff.

How was it?

AMAZING! We swam in a lake! We hiked and there was so much to do! We made s'mores on a campfire and I slept on an upper bunk above Sam in a cabin...

... and what time did you go to bed?

11.

Did you sleep well?

Yup!

Any nightmares?

No, not at all! Mom, there were skinny bunks and big bunks, and I got to sleep on the skinniest bunk of all. It was so cool and....

Definitely all good stuff.

Jake

Jake 11/10

Jake spent the night at camp, last night, and I wonder how it went. I was nervous for him, worried that he'd have his bad dreams. Mom, I'll be fine, he insisted all week. Really? But he's still sleeping with his brother every night. Still asking me to sit with him. And the other night he got up twice to tell me he was having those dreams again.

Mom, it's not this way when I sleep away!

I didn't say anything to interfere with his confidence. I wanted him to be with his camp mates and was happy he was looking forward to this special getaway, where there would be lots of swimming, boating and hanging out with the boys. The kind of stuff he loves.

Do you think something is bothering you at home? I later asked. Could you be upset or worried about something to do with me? No. Or dad? No. Do you think we've just gotten into a certain habit? He looked at me. Maybe I've gotten into a habit.

Actually, I believe he just doesn't know. Maybe it is just a habit. But maybe it's just nice to be comforted if he's anxious about something, worried about social stuff, concerned about doing well.... Any one of those other things makes sense to me, too.

So every night since early March, his 10th birthday, we continue to be there for him. Belac always agrees to sleep with Jake and loves it. At Jake's explicit request, every night, my husband or I sit with both of them as they drift off. Whenever Jake comes to me at night, I bring him back to bed, sit at the edge and pat his back for a couple of minutes....

***************************************************************

My dear Shake'n Bake (or is it Jake'n Bake? Whatever it is Uncle D always calls you!)

This blog has slowly evolved into a story for you and Belac to read one day. However, I find myself - more and more - writing it especially for you. I know you'll one day understand the nuances and I want you to know about these years.

The other day, I wondered about you reading this blog. Would you ever sift through it and compare the number of entries between Belac and you? I haven't done this but have a pretty good idea what you'd find. Does it mean I love you less? Absolutely not! Does it mean that I think about you less? ...I really hate to think that's true. Does it mean that I worry about you less? ...well, I did for many years, but now I kind of worry about you more.

Your brother, especially in recent years, needed more of my attention and daddy's attention. He just did and there was no way around it. It's not his fault. But we also have to recognize that he has come a very, very long way with all of our help. You, Daddy and I, all made sacrifices to help Belac and he is especially so lucky to have you as a big brother and role model.

And lucky for all of us that Belac has made progress! It means that you now have more time with dad. The two of you have been going off to play ping pong at the local place and then sneaking out for ice cream afterwards, when really you should already be in bed! Tsk, tsk! You have early morning bkfsts and long bike rides or runs with just dad on the wknds. It means more time I have to help you with writing and math (which you just love, right?) and hanging out with you in the sun porch [what we used to call the library] over your freaky facts and jokes. And it also means that we can do much more as a whole family like traveling, eating out, and seeing things because your brother is more flexible and in better control of his behavior.

What I'm trying to say is this, Jacoby. I love you deeply and will always bend over backwards for you. The way these past years unfolded, you may not have always felt this way because your brother demanded so much from all of us. So even if my hunch is off on this, it's still important to me to remind you and show you - over and over - that we think the world of you and love you! Your well-being matters so much to me and Daddy, and we will sit at your bedside for as long as it takes for you to know.

Love,

Mom

they're friends

Belac 7/11

As promised to Belac, I called Lily's mom to ask about a play date. These calls to Lily's mom - in particular - take effort for me. Maybe deep down I think Lily's mom will eventually say no or that despite all of my careful casualness, she'll figure out just how much Belac wants (and needs) Lily. My husband tells me I really need to cut it out and stop undermining Belac's friendships. Lily likes Belac, Belac likes Lily, simple as that. They're friends.

Got Lily's mom on the phone and we ended up chatting longer than usual. Up until then, our conversations had always had such a guarded quality to them. Then she disclosed something that made me understand more why she might be so agreeable about Lily coming here. She told me that she was anticipating a difficult transition to kindergarten for her son, next year. Until the end of 1st grade, Lily didn't want to leave the house and often cried on the way to school, making for a situation to manage every morning. She's such a sweet, soft spoken, nature-loving kid, I realized, and very sensitive.

Belac has had similar issues of feeling lost, especially last year, his first year at his new school. But in his case, he reacted in defiance and with fewer tears. It is in this context, I suddenly realized why the kids like each other. Belac is the best kind of friend for someone who might be a little shy at school. His face lights up when he sees Lily and he always runs over to say hello, without fail. He is so stubbornly consistent and reliable and doesn't care how he appears. When the kids in class ask him "Do you love Lily?" he always says "yes" and the kids laugh. "Do you want to marry her?" they egg him on. No one in 2nd grade would ever admit to wanting to get married to anyone. "Yes!" he proclaims and everyone laughs more. Did you hear that? the kids exclaim, Belac wants to marry Lily! 

He always sat next to her at lunch and looked for her on the playground. He almost always had a picture or a letter for her. She loved the attention and it was obviously nice for Belac to feel appreciated. I realized, maybe Lily's mom does know about Belac's challenges but doesn't care because her daughter wants and asks to come over and she's happy. Lily loves playing with Belac, her mom told me on the phone.
 
What will happen when this sweet girl comes to realize Belac's not the coolest kid or that you're not supposed to play with boys at this age? But I'll try to stop. I have to remind myself that I never could have imagined today, a few years ago. Just enjoy the good moments.

different strokes for different folks

Belac 7/11

I think we've fallen out of favor with the Smiths, my husband told me out of the blue this morning.

Really? Why?

Well, I texted Dan about biking today and he didn't reply.

I thought about it. I met Dan on a train, last year, when I was taking a course at NYU. I recognized him and we chatted. I found out he was an avid biker and introduced him to my husband. They proceeded to bike dozens of times, last summer. They were a great match, athletically, and kept pace with each other 25 miles at a time. They also rode 50 miles together on behalf of a Cancer Survivorship fundraiser.

Eventually, we met the rest of his family when we invited them for dinner, and they reciprocated with a neighborhood bbq. Dan's wife, chair of the special ed committee for parents, asked me to help out with the treasurer duties, which I did.  But when asked to take a more permanent and formal role on the committee, I declined as nicely as I could.

Don't get me wrong, I really like volunteering at school. This past year, I helped out at healthy heart week and oversaw physical activities in the gym. I volunteered for Nutrition week and served fruit snacks. I showed up for at least 3 math labs and for Field Day, where I poured water during 3 hours of sweltering heat. There was also sound and lights for a class play and setting up for dress rehearsals. I also chaperoned at least 2 field trips, manned a booth at a special needs event, presented a slide show on Earth Day, organized crafts, checked kids in and out of the 4th grade graduation party, donated gift cards for teacher appreciation week, played piano for a middle school music concert... and I can't count the number of times I shlepped jugs of water and juice to school all year.

My point is. I strongly prefer to volunteer in a hands on way. On a committee, I'd be sucked into doing mostly admin stuff. It's much more important for me (and frankly, much more fun) to show up at school and be with the kids. And there is also the added benefit of running into the boys' teachers and the principal all of the time. One semester, Jake's P.E. markings slipped over behavior and sportsmanship. And because I was volunteering for Healthy Heart week, I could casually talk to his gym teacher about what was going on. Because of Nutrition week, I was able to have an informal minute with Belac's science teacher to ask if he was doing okay given his difficulties attending. And on Field Day, I had an entire morning to observe Jake's teacher and to see which kids Jake gravitated towards.... I loved these experiences and would never trade them to be stuck in any role on any committee.

And I think this is where the problem lies with our friends and others, who are deeply entrenched in the local special needs community. We haven't attended any of the special needs fundraisers. There were wine and cheese parties and manicures in town.  My husband and I also didn't go to the autism concert the family invited us to or to an autism march. Each and every time there were legitimate conflicts, but the truth is, we were not emotionally attached enough to hire sitters or change our plans around to go. And well, I think they're upset. Upset that we aren't devoted enough to the cause and willing to put our face out there and own it. Upset because we haven't embraced the community as our own.

And that's just the way it is with us. You see. We don't fit in special needs, nor so nicely with the neurotypicals, either. We're nomads and it can be complicated. But I really believe this is the right way for us and am good with it. Our family is better off exposing ourselves and trying to integrate with the community at large, which includes a relationship with the special needs community as long as it's not an exclusive one. And to be perfectly honest, I think everyone in the family is pretty autismed/special needs'ed out at this point. We'd rather go swimming or take a hike than to gather over more talk about these challenges.

I realize we may have hurt our friends' feelings by doing our own thing. I feel bad and hope we'll have the chance to make things right with them. Next year, I'll be sure to go and get a manicure!

own world

 Belac 7/11

"Hey Buddy, how's the pasta?" asked our waitress.

"Good," Belac replied under his breath, not looking up as he continued eating. He had tomato sauce on his face and shirt.

The waitress looked at me and was pleased as punch. "Wow, he sure is enjoying his pasta, all right!! Look! Is he ever in his own world!!!"

I had to just laugh my head off. It was such a proud and joyous declaration over behavior we've been fighting for years. I had seen that exact phrase, in his own world, over and over again in his paperwork. But her so boldly stating the obvious now was testament to his progress. She didn't know. It's true, I agreed while laughing, he's loving those noodles!

less is more

 Belac 7/11

Spent the last couple of days ripping up carpet and removing a zillion staples from the stairs. Though the wood is in need of significant attention, I can live with it because the surface is now squeaky clean and does not smell. I now walk up and down and no longer crinkle up my nose and wonder what it could possibly be. When we return from VT, I'm going to rip up the rest. There's a similar problem in the dining room. Why would anyone install wall-to-wall in the dining room of all places? What's it hiding?

I realize that most everything I do to improve this house has to do with cleaning and stripping it to the minimum. There are no knick knacks on any surface and barely a thing adorns the walls. Every item serves a purpose or I'd rather not have it. I really like living this way and have received no complaints from my family. Good news because it's just less burdensome all around! Minimalism rocks.