auf wiedersehen

Of course, no family tradition of mine is complete without a little dysfunction. I woke up yesterday morning to see my parents loading their car and basically sneaking out of the house. They weren't supposed to leave for another day.

"What's going on?" I asked, feeling my eyes get moist, "is everything ok?"

My dad whispered to me as he hugged me tight. "We're just getting a head start.  You did a good job, Gimky."

And with that, they were gone. I stood in my kitchen, weeping with my coffee maker.

A few minutes later, we were interrupted by the sound of the front door swinging open. My mom was back and now rummaging around a cabinet for her forgotten pot. I was not 6 inches away, but entirely invisible to her. Then off she was again, having found what she was looking for.

"Gimky, she arrived a week ago," my husband later noted, "I'm surprised she lasted that long."

 All things considered, it was a pretty graceful exit for my mom.

Full House

Made a huge pot of chili for dinner and warmed fresh bread from the bakery. All now sipping wine, sitting by the fire or watching "How to Train a Dragon." Stealing a quiet moment as I wait for my sister and cousin to arrive.

Tonight, the manfriend declared with his thick British accent, "you have such a WONDER-ful family!"  I laughed and thanked him. I pretty much haven't thought of us that way since... well, I don't know when. Does he notice that Belac is a bit off? Does he see that when my mom - who is actually so sweet and happy this trip - goes on too long and emotionally I disengage immediately so as not to be driven crazy?  "Be nice," my little sis said to me under her breath when I went to find my mom over something. 

As I was cooking this afternoon, a bunch of people walked into town to explore. My niece and Jake tagged along. They were gone for 2 hours. Belac drew the entire time and amused himself with my ipod. He never asked where the other kids went and didn't seem to miss anyone.  I would have found this depressing before, but realized today that it's okay. He had a tough 2 weeks at school, after all, and it's a  good break for him to just be at home where he wants to be. "Mom," he told me last week, "home is level 1, school is level 2, tae kwon do is level 3." I get it. He is constantly pushed to interact, engage and refocus more and more in levels 2 and 3. Home is where he can just be with less pressure and relative ease.

It may seem that I have lowered my standards or turned apathetic. But I like to think that I  am just more accepting of where he is, where I am, where my mom is....  In letting things be - and letting go of notions of how things should be - I find peace. 

lesson learned while waiting

Belac 11/2010

Made a run to Target and the grocery store. A trip that should have taken an hour-and-a-half took 2-1/2. The crowds were horrible, the lines were endless, and it was exactly my kind of nightmare.  I really dislike shopping but detest waiting even more.

By the time I was ready to pay for my groceries, I was dismayed to see each line, 4 or 5 overfilled carts deep.  I scanned my options and noticed that a few lines were staffed with baggers and chose accordingly. As I neared the front of the line, I noticed that the baseball-capped bagger was not as young as I thought and about my age.

"Hi!" he said cheerfully, as he began bagging. I bagged alongside him and saw that he wasn't going to say a word more.  He was definitely not your typical kind of guy, slow to the uptake, and not a conversationalist.  "Happy Thanksgiving!" we called to each other as I zoomed off with my cart.

This guy helped get me out of the store more quickly. He was deliberate but wasted no time, and he was nice enough. Had there been one of him at every line, everyone would have been a lot happier. The next time I fret about what Belac will later 'do' in life, I need to remember there are many ways to contribute meaningfully to society.

pig in mud

Last night, my childhood friend came with her family and parents. I made trays of lasagne, a huge salad and the wine was flowing.  There were 6 kids at the kiddie table and 12 adults crowded around our dining table. After dinner, we invited Allie from next door and that meant 5 more. We easily polished off a Costco-sized pumpkin cheesecake....

Earlier and even as the guests were arriving, my brother-in-law installed new light fixtures above our dining and kitchen tables, much to everyone's oooohing and aaaahing. My sister wasn't feeling well and was sent to bed, so baby was passed from hip to hip.  My husband flitted in late, torn between the fun and meeting an untimely and major deadline.  My brother-in-law's sister showed up with her doubly-older manfriend, who hadn't yet been introduced to anyone during their 10 years. Only my brother-in-law was technically related, but I made sure to pour wine right away.

I laid out paper plates that didn't match and looked dorky, but I preferred not to do dishes later. Then my childhood friend showed up in a mink coat, all dressed up, and I had to laugh my head off. (We are polar opposites in almost every way.) I was so happy to see her parents, who had just driven in from Detroit and wanted a tour of the house.  As I showed them around, they interjected over and over again, "Gimky, Belac is so much better! When we came to the door..." he did this and that and this and that "and he's just so much better!" I heard the love in their voices but don't remember what they said. He's been having a rough 2 weeks at school and it's wrong of me, but that is all I can believe or listen to.... My parents were glad to just enjoy the company and my mom was chatty and smiling all night.  No doubt, this was a much-needed change to her usual Thanksgiving responsibilities.

Early this morning, I watched the manfriend put together a puzzle with the boys while I made coffee and toasted bagels. There they were, trying to put a 3D puzzle together with Jake answering all of the manfriend's questions for both.  A few minutes ago, my mom emailed a photo from the train. She and my dad were supposed to be having breakfast in Sunny Patch but decided to hop on a train to NYC instead. They showed my niece standing on the seat, looking out the train window.

I know it's piggy of me, but I wish this could be more than just once a year.

thankful

Belac 11/2010

"OMG! That's insane!" is the usual reaction from people when they hear how many we are putting up and feeding for a week. It kind of is, come to think of it,  but I have been looking forward to this holiday forever. I am happy beyond words that everyone's coming.

We'll all be under one roof and packed like sardines. Yes, that in itself has it's perils, but we'll be cooped up next to NYC and in the village of Sunny Patch, not in a Detroit suburb with nowhere to escape to for miles. No one will drive after drinking or have to leave early because a spouse or child is tired, and that is important to me, too.

My parents have hosted Thanksgiving since the beginning of time. It's always been stressful for my mom to be the homebase for the holidays, but there was never another option. This year, I can actually accomodate and if all goes well, I'd love for everyone to continue coming here instead.

Despite all of it's needs, this house provides in so many invaluable ways.  Given where we once were, it's a miracle that we are where we are today. My husband commented, again, that he can't help but wait for/expect the rug to be pulled out from under us.  "I know," is all I can ever think to say.  We have so much to be thankful for.

Facebook

Belac 12/2010

I have a good friend in Leipzig. We hardly write but I think of her as close. We went to Juilliard together. We read the same kinds of things and we hung out often, two single women in the city, aspiring musicians and dreamers. We friended each other on Facebook long ago, but interestingly enough, it did nothing to encourage us to interact more. Our friendship did not transfer to the Facebook platform. Instead, I was distracted by 175 other people, most of whom I will never speak to directly or see in person before the day I die. I actually hope to see my Leipzig friend again. Is it a slap in her face that I reached out publicly to others and hardly to her? More than once, these past years, I wished to have an evening to catch up with her and meet her husband and son for the first time. There was too much to say in just one letter, the time difference made it  hard to call.... When she gave notice, recently, that she was leaving Facebook, I understood without her having to explain.

There are good things about Facebook, don't get me wrong. An old friend recently posted that his dad had died. Kind of a weird thing to post, I know. But I'm glad I caught that status because it's something I wanted to know. I shared a funny memory I had of his dad. His parents were wonderful to me and I was happy to remember.  Facebook also gave me the chance to apologize to someone who meant something to me but to whom I was really awful and stupid to in high school.  Whether I made things better or worse by reaching out I'm not entirely sure, but I meant well. There are good things about Facebook.

Have you ever been to a party that has gone on a little too long or requires a little too much effort to be entirely fun? Well, that's how I feel about Facebook at the moment. I know how to play the part of a witty, chatty, life-of -the-party girl,  but give me a break already!  I think the real problem is that my nature is a little too serious and intense for Facebook.  I am an all or nothing kind of gal, but with 175 "friends" I too find myself watering things down to be acceptable to all, creating this persona that is squeaky perfect, too goody-two-shoes, and not really me. It's like a costume I put on when I log on there, but the outfit has gotten old and the fabric makes me itch and squirm.

Someone wrote, "you'll be back, everyone always comes back to FB." Only time will tell!

the same boat

Belac 11/2010

My sister-in-law on the west coast has just been laid off from her law firm. It is astonishing and horrible. She is the breadwinner in her family of 5. They just bought their first house last year. She's been with the firm for over 10 years I think, and moved out to the firm's LA office several years ago. She's witty, smart and sharp. Partner material. But she's also a mom and took 3 maternity leaves, one pretty recently, so the office had practice making do without her. California also has one of the highest rates of unemployment in the nation and so her prospects are worrisome....

Yesterday, the president of SEPTA (Special Education PTA) asked if I could take over the Treasurer's job. She explained that the current Treasurer was in over her head. The Treasurer was trying to sell her house after her husband, the breadwinner, had not been able to find work after losing his job a couple years ago. It now appeared they couldn't afford to remain in district, though their designated child is thriving here. Husband and wife not doing well, she added. How could I say no. By the way, she told me, she is your neighbor across the street. I was shocked that she disclosed that gossipy morsel, which immediately explained why the house went up for sale only in September, missing the whole spring and summer season. Something unfortunate had happened to force the sale.

I used to think that no one's situation could be worse than ours. We bought a house in a school district that didn't have good resources for special needs. We didn't know Belac was on the spectrum until 6 months later. We also bought at -what turned out to be-  the height of the market. We couldn't stay in the house because we couldn't afford the house AND his private education, so our only option was to sell and take a loss. Then the market fell, and on top of taking a hit, we couldn't sell for over a year when we were already renting in the new district. We could only imagine the worst when all was said and done.  We lived on the edge in so many ways and it was stressful. Now I know that we were very lucky and that of course it could have been much worse. We had my husband's job and health insurance throughout. I had a cancer scare that turned out to be nothing. I had my family to call nearly everyday.

I used to roll my eyes at other people's woes. But it's arrogant to assume that autism is worse than any other kind of problem. And you just don't know what's going on in someone else's house with the picture-perfect hedges out front. It's really none of my business what goes on inside, but it's important contextually to know that there are plenty of others that struggle with their own things and there's a lot of overlap in all of our situations. No one is really alone.

reluctant masters

Belac 11/2010

My husband and I have not been sleeping in the master bedroom. Our bed is set up and all of our clothing is in there, but we've been sleeping in the guest room. It's a tiny room with a 12-inch clearance on either side of the bed. Every night we ask each other, shouldn't we try sleeping in the master bedroom? Every night we always end up in the guest room.

We can't really move into the guest room full-time. There's no space for even a dresser and the closet is tiny. But I just like being in there. It's bright and cozy. It sits at the top of the stairs and above the heart of the house, our equally cozy kitchen. The kids' rooms are close by. Even though we no longer have to, we all share a bathroom.

If we could turn the heat off to the master bedroom, I would.

another A word

Belac 11/2010

Our homeowner's insurance policy is about to be cancelled. I thought it was some sort of mixup, but our mortgage company assured us this was true and read in their notes that our insurer was concerned about our roof's integrity. It was a pretty shitty way to find out about the cancellation. Especially since the insurance company did a visual in September and made no mention about their concern as they sat on this information for the next 2 months. It now left us with a 3 week window to find new insurance, a basic requirement for any bank to hold a mortgage on a house.

We knew what we were in for prior to buying the house. But a building inspection and several consults with roofers assured us that we had at least a year or two to deal with it. These past two months, we have had some heavy rainfall and the roof hasn't leaked one drop. General word from the roofing companies is that the roof looks much worse than it is. Our plan was to take care of the roof in the spring, after doing the necessary research and after my husband received - knock on wood - his bonus.  We hadn't at all anticipated this insurance problem.

The roof replacement is somewhat complicated because the tile is transite and has asbestos in it.  It sounds terrible, but the asbestos is maybe just 3-5% of what's in the tile and was used as a binding agent for the cement and other particles in the tile. It's actually a great material for the roof as it is strong and fire retardent, but as we all now know, it's hazardous stuff. Despite it being non-friable asbestos (as opposed to the friable asbestos you find wrapped around pipes) it is federally regulated. Repair the roof and you might unsettle the asbestos, so you'd be hard pressed to find anyone to get up there. Remove it without the permits and you risk heavy fines. Roof over it and you might not be able to sell the house later. A filing fee is 10 days out to Albany. Then there's the asbestos abatement process complete with air monitoring, then the roofers, then the proof of proper asbestos disposal that must be filed.... it's time consuming, everyone has to work together, and it's expensive.

For the past 2 weeks, I have been working with brokers and calling insurance companies myself. It seemed no one would insure us. I looked into home equity loans. Not surprisingly, the banks are either not offering them or need a month or more to guarantee funds. The terms, by the way, are also terrible with heavy prepayment penalties and closing costs....

I was left to rely heavily on 2 local Sunny Patch brokers. Each eventually found a reputable-enough company to insure us but each took a different tactic. One broker preemptively came and took photos of our roof to send to the companies he works with. "We want to avoid another cancellation." The other, upon hard questioning from me yesterday, admitted to having lied to the underwriter about seeing our house and gave our roof a pass, site unseen. "I'm taking your word for it, Gimky." Both policies cost double of what we were previously paying, but I was at least relieved to have coverage. Of course, I'm going with the broker who took the photos.

In the meantime, I have had roofing companies out for quotes. You know what is crazy and nonsensical? You want to go with an environmentally friendly product, but it costs more. Interlocking metal shingles cost more than double. Rubber/recycled and other fake but green products cost 2/3 more. The architectural shingles we are now looking at are the economical choice, but even the white ones - a horrid choice for a white house, mind you - cost much more!

Sometimes it just seems so hard to do the right thing! The second broker did what he did to help us get insurance. Could I really blame him?

My in-laws see the house for the first time, today, and it means a lot to me if they like the house. I don't know why and know I shouldn't care, but it's the truth. There's probably an interesting story there if I could just sit down and think it over. But what the hell am I doing here? I have to clean and shop for dinner.

Everywhere

Belac 11/2010

I attended an elementary public school in a middle class suburb of Detroit, Michigan. My exposure to special needs kids was limited to a class traipsing through the cafeteria to their designated table 10 minutes after everyone else was seated. I remember I never wanted to look at those kids. They all walked so slowly down the center aisle, some had strange gaits when they walked, and they just looked weird. (It didn't help that their schedule and where they sat encouraged a sort of spectacle when they arrived.) When I had to throw my lunch waste in the trash, it meant passing their table. I made serious effort not to look their way and always did my business fast.

Growing up, I just really wasn't exposed to kids with needs. Now, as a 40 year old and a mom of Belac, it's everywhere I go. Probably, in other words, I just notice the bigger world around me. I notice the toe walkers, the ones who can't listen, the hand flappers.... I am also much more aware of the tendencies, mannerisms, and character traits of normal people from a more clinical perspective. It's really this whole other world that I never saw before, but now I take it all in without the same kind of 9-year old fear. And maybe because I have my own kid, I feel license to take a good look if I want, to just speak up and say hello if it feels right.

A few weeks ago, I played a couple of concerts in Boston. During that same week, I received an email out of the blue from my old teacher in Germany. He wrote to say that he was celebrating his 50th college reunion in Boston. "You're kidding me!! I'm here, too. Let's meet!" I wrote. We met at a cafe in Cambridge and caught up. I hadn't seen him since my wedding, 10 years ago. A few days later, he decided to come to my concert before hopping on a plane back to Europe. An email arrived the next day.

Driving back to NY, I had an epiphany. My teacher, a gifted musician with a brilliant mind, is on the spectrum! It's so obvious to me now. It explains so much of how he behaves and interacts with others. He's charming, but clumsy and unrefined.  He's like a little boy in a 6ft tall, 70 year old body.  Don't slouch! you want to tell him, look at the other person when you speak to them!

As his student, 14 years ago, there were times that I took my teacher's oddity personally and attributed some of the things he didn't say (or should have said) to be a sign of his unspeakable disapproval of me or my playing. In Germany, he's a famous and sought after pianist, so as an impressionable, young American I just thought he knew what he was doing and allowed myself to be self-critical.

Suddenly, after seeing him this Boston trip, I understood why he didn't write just one little line about how he enjoyed my concert, even if it involved lying to be nice.  He wrote, instead: "the playing was obviously very high caliber."  Maybe he hated my playing and, of course, couldn't lie and say otherwise. But it's also possible that he loved my playing but didn't think of telling me or assumed I knew or just didn't feel comfortable saying so.  I noticed that he didn't ask very much about what was going on with me, not that he talked so much about himself, either.  He was certainly interested and engaged when we talked about my things,  but he didn't think to ask. It was my responsibility to just barge in with whatever I wanted him to know, and at this point in my life, I had no problems doing so. And his very occasional and fleeting eye contact was now something I was so familiar with.  I know from my own son, that it's just often easier and less distracting to talk and listen without looking.

Despite my teacher's unusualness, I always recognized him to be genuine, reliable, and someone who was always trying to figure things out. An amazing pianist with a sensitive soul, but an odd ball, for sure. And now I understand.  

Setting the bar

Belac 12/2010 (letter to Sweety, a classmate)

Woke up to Jake's moaning to find him doubled up over a stomach ache. For the next hours, we tried everything. First he thought he was going to throw up and gagged while sitting with his face in the toilet. Later,  I gave him a couple teaspoons of mineral oil and we tried his sitting on the toilet in case it was constipation. Even later, I gave him a little pepto because I thought it might be an upset stomach. Eventually, hours later, he began the vomiting and a fever developed.

He wanted me by his side most of the night. As I sat on a pulled up chair, patting his back and dozing on and off with my head on his bed, it felt eerily like I was at a hospital at my child's beside. It was also during this time I guessed that had I ever ended up in the medical profession like most of my family, I would have probably worked in the ER.  Of course, I am squeamish about seeing blood and guts, so anyone reading this who knows me in real life would totally laugh at this, but personality wise, it's where I think I'd most fit.

From fairly early on, I was actually told by various family members to stay away from science, medicine in particular. I wasn't such a stellar student. In their defense, it was probably because I demonstrated greater promise in something else (aka music). But you remember the things people tell you you can't do or describe as your challenges, especially if you don't have a strong constitution or sense of self (yet). Sometimes the well-meaning but not necessarily true comments of others can shape your own perception of yourself in a warped way or stunt your inclination (and ability) to try anyway. I remember vividly how stunned I was to see my grades from first semester of college. My transcript was filled with mostly A's and I cried at the sight of it. I just didn't know I had it in me.

Over the summer, my husband and I talked to a financial planner specializing in special needs planning. We wanted to figure out how to prepare for Belac's future properly, allowing for college and the best life scenario but also allowing for some kind of trust fund or support in case he couldn't hold down a job. There was some discussion about my husband being Canadian, the kids holding dual citizenship, and making sure that a plan devised in the US would be transferable to Canada. "For example," I pointed out, "Jake wants to go to McGill one day. We want to make sure that the kids can go to college in Canada if they choose to do so."  

"Let's just be clear, though," the jerk of a financial planner said to me, "Belac is not going to a school like McGill."

The boldness of this remark was stunning and it took me a moment recover.

"You haven't even met my son," I countered evenly, "how could you say such a thing?"

"Well, your husband told me your son is... autistic, there's just no way he'll go to a school like that," he reasoned.

"My son happens to be a very smart kid and - " I began.

My husband interrupted, "Let's not go down this path with him, Gimky. It's not productive. Let's just hear what he has to say about planning financially."

From then on, I would not look at this guy and barely listened. I was fuming.

I know very well that McGill University is a stretch for most people and maybe for my kids, too. I certainly don't view my boys as shoe-ins nor am I asking anyone to blow sunshine up my ass about my boys' future. But my point is, no one should come to bold and limiting conclusions about what my kids or any kids can or cannot do. For God's sake! Jake is 9, Belac is just SEVEN and much more than a diagnosis. So deep in la-la land this guy thinks this poor mother is living in! Well, I just as boldly dismiss his outlook and assume that both of my kids have potential. It is my goal to try to get my boys believing in themselves even if the others don't. Dare and strive to be great, dare to dream!

And on that note, I sign off on this entry with a beautiful and inspiring link to Eric Duquette: http://www.gnn.com/article/eric-duquette-a-salutatorian-who-has/1124477. I encourage you to watch the video. I couldn't say any of it better.

chocolate

Over the summer, I took a certification course at NYU. On the train, one day, I noticed a parent I had briefly met before. I remembered that he had a child with what appeared to be autism. We ended up chatting awhile. I found out he is an avid biker, like my husband, and regularly traveled the same 25 mile route on the North County Trail. I suggested that they ride together and they've been meeting up ever since.  Over the months, and through my husband, I also found out that this man is almost 10 years older than my husband and extremely fit. He ran the most recent NY Marathon. He hikes and climbs. He belongs to a fitness club nearby. And he's very successful professionally.

A few weeks ago, we invited his family for dinner.

We greeted them at our driveway with hugs and handshakes.  We met the younger boy, who was slender, had a beautiful face, and limited language. He ran off right away to check out the entire house without a word or a glance. His parents were apologetic.  "No problem," I shrugged, "he can roam around and touch whatever he wants." Then we met the older boy, who I was - to be quite honest - astonished to see was obese. Later, at dinner, the wife made a self deprecating comment about her own weight, saying she was the heaviest she'd ever been. I really liked the wife. She was articulate and charming, generous and sweet. And yes, as she pointed out, heavy. The husband, who I remembered to be very chatty on the train, now seemed quiet and somewhat disengaged.

After they left, I looked at all the goodies they had brought.There were bags of fancy chips and dips, leftover, which we had begun to eat earlier. Also a sweet card and not one, but TWO boxes of fancy soaps, which I recognized from a fancy store downtown. It seemed a bit much and somehow indicative of how this family was pulled in so many extremes. I also felt emotional for my husband's new friend. That he couldn't and didn't share in his excursions out in nature with anyone in his family, especially as a dad of two boys....

I asked my husband if he thought his friend's family was happy. My husband didn't know and was silent as he thought about it. Did I really need an answer from him to know? And what business was it of mine, anyway?

Every family has their own box of chocolates to reckon with.