Hi. I'm calling about the house....

Belac 2/10

I received many phone calls about the house, this week end. Some were from agents who had clients to bring. Yay! Several were calls by soliciting agents, some of whom happened to be 'friends'. Blech! And one was a call from a royal, first-class, ITCH-BAY, who proceeded to give me a tutorial on the most basic stuff in the world. "You know what happens in real estate, right?" she began with a tone of contempt. (What could she possibly be so irritated about? I had barely said a word, yet, and we were offering - in this market - a generous 3% to the Buyer's Agent.)

"Watch her be the one realtor who closes the deal," I told my husband. Lo and behold, of all the visitors who came, yesterday, her client stayed the longest, 45 minutes, and spoke the least of anyone who ever visited. They scheduled another visit on the spot to bring the husband back. So. I've never been very successful, personally, at being an outright bitch. But maybe bitchiness is a useful approach at times. Maybe it gets results. We shall see....

Happy Birthday, Belac!

Belac 5/09

You make me laugh, you make me cry, you make me a better human being.  These past few years have not exactly been a cinch, but I would not have traded them (or you) for anything.

If, one day, you read Snowflake, I hope there's never a misunderstanding. I write here because it helps me sort through my thoughts. I try to figure it out because I love you with all my heart and want to do right by you. And I want to be clear: you have always, always, always been wanted! Even on the most difficult day, I have wanted you and loved you. 

Some people think 7 is a lucky number. And it seems particularly true as you turn 7 years old. You've come a long way, sweetie pie. We are now living in Sunny Patch, a very nice town. You're going to a good school and you seem happy. In an hour, we're celebrating your birthday with all of the boys and some of the girls from your class! We are so lucky. It's all you've been able to talk about for weeks and you're bursting with anticipation.  Happy Birthday, my dear Belac!

P.S. to yesterday

Belac 11/09

Of course, I was busy waxing on about Sunny Patch and my kids' progress, yesterday. Meanwhile, unbeknownst to me, Belac decided to show his penis at circle time and found himself in the Principal's Office.

I know. It's not the first time in the history of elementary school that a boy has engaged in this version of show and tell. In fact, I ALWAYS laughed at the story about my brother-in-law mooning his class and getting suspended in middle school. In large part, though, because he turned out just fine (and continues to be hilarious). But this is a little different, I think, because my son doesn't have good social judgement (can I say? yet.)  Belac's class had to be told not to laugh about this, and he was instructed to apologize to the class upon returning from the Principal.

So all this to say, it's up and down and up and down....

By the way, not only have we dropped the price of our house, we are now offering $10,000 at closing to help purchase a new furnace and /or convert the system to gas.  We are really operating squarely in the red now and our goal is a quick sale.  It would be terrible to hang on to this house much longer at this reduced price, so we hope for the best.  I just paid to have the house listed in the real estate pages of a well-read newspaper and am quite proud of how the listing turned out with the photos and writing. I would show you, but am not interested in blowing my cover for the second time this week....!

Okay

Belac 1/10

It's snowing huge flakes, today. The kids and I put on our boots and ventured to school in this magical landscape. The boys moseyed along, pushing snow off of every last bench and fence, while trying to catch snowflakes in their mouths. It was the nicest feeling to be out like this, enjoying the moment but still going some place. Sunny Patch is a walking district and town, and there are sidewalks everywhere. I love the freedom of traveling with my own two feet. I have to admit, I like it here.

We arrived to school. This time, Belac ran independently to the library, not once looking over his shoulder. That's progress.

Okay. We're doing okay! We're starting our 6th month of the new school, our 9th month of living in Sunny Patch and renting, and our 11th month of having our house for sale.  Would it be okay to make plans for the future? Can we allow ourselves to think we could be okay here?

The house we recently saw is still in the back of our minds. Though even before seeing it, we dismissed it as getting ahead of ourselves.

Last night, my husband and I went over our finances. In discussing another price drop on the house (it's our 4th drop) and looking closely at the numbers, we were surprised to realize that we still had room to take a bigger loss and afford such a house that we just saw. It's that Sell Low, Buy Low strategy. But would another more significant price drop of our house guarantee a quick sale, in enough time to turn around and buy this woman's house? It's risky. She might get an offer from someone who has nothing to sell. Our lease here ends in late May. Could she be enticed by an agreement to buy at her full asking price (attractive for her because she's now dealing with 5% realtor fees with other prospective buyers) and our renting her house month to month until our house sells? Still risky for us, what if our house continues to sit or we end up not having enough equity? And risky for her, she already plainly told me that she needs to move on.

We are dealing with an icky economy and finicky people, widespread job insecurity and concerns about which direction real estate is headed. On top of that, we continue to not know what Belac's autism means for the future. But interestingly enough, after years of holding back on hope and attachments,  and making some drastic decisions to meet our childrens' needs, we  have somehow found ourselves going through this exercise. Yesterday, my husband and I talked about putting  roots down in Sunny Patch and addressed our future. The last time we had this kind of talk was over 5 years ago, before autism entered our life and our future became muddy and confused and practically unspeakable. I feel like we've come full circle since then, like we've returned to a good and familiar place. It's significant. I realize, house sale or not, this house or not, renter or owner, it doesn't really matter....  We're doing okay.

Wonderful

Belac 1/10

We arrived to school, this morning, and waited for Belac's Aide. She wasn't there.

The Monitor asked, "Is he going to therapy now or to the library?"

"To the library," I replied.

"Okay, Belac," she said, "Go to the library."

I got down on my knee, "Belac, you're going to the library by yourself!"

He was humming and not focusing.

"He knows what to do," said the Monitor, almost dismissing me but in a friendly way, "Go, Belac!"

There was no wave to ride, today. He zigzagged right, then left, and looked back at least 3 times in the first 10 steps.

"GO!" the Monitor and I shooed, both standing and watching.

Then she turned to me and waved me away, "GO!"

"I can't help but look..." I protested.

"GO!!" she said to me, again, with such a force it made me laugh. "He'll go if you go. I'll look to make sure he gets there." She shrugged. "He's just a little slow, today."

And so I was off.

He'll be 7 years old on Monday. He's been in the system since 2-1/2.

Once upon a time, I didn't know better. I just assumed my babies would sail through life and become doctors and teachers. After all, my husband and I both 'made' it without incredible support.  So here we are today, after 4 years of school and intense therapies for Belac. This is the second time ever (and the second time this week) he has navigated into school without holding someone's hand. I never in a million years dreamed that I would one day get excited over a thing like this. I have  obviously done a lot of adjusting these past few years. This morning, when I watched Belac take those unfocused steps down the hall by himself, I found myself smiling from ear to ear. It was like the most wonderful thing in the world.

Hmm.

Belac 1/10

Today, I let a friend borrow my computer unsupervised. I only realized, afterward, what that meant.

If she used Safari to browse, then she went to the Apple Start page. If she used Firefox, then she loaded up Snowflake.  Hmm. Sometimes, you don't even notice what the start page is, right? Maybe if you're impatient enough, you won't wait for the home page to load before typing an address... maybe... right?

Well, if you are reading me, my friend. Welcome to My Life! Yes, Allie, she's you. As you can see, you are part of my Snowflake world. And peripherally, so is... Will, did I call him? (Hesitant laughing.) Don't kill me, please.

Even if you happened to not see Snowflake, I'm thinking it's about time to let you in on it.

A steal

(Belac 1/10)

The house we are currently renting is ideal in almost all respects and we are happy to stay for a good while. The only thing is, it's a little small and awkward for the very long term and we would never buy it. Everything in storage I could do away with in a snap, but the music library I inherited from my late piano teacher, at least 300 scores, is very valuable to me and entirely inaccessible as long as we live here. When my parents or other family come (they all live out-of-state or in Canada) we either give them our tiny bedroom in the attic, only reachable by steep and narrow stairs, with no nearby bathroom, or an aero-mattress in the drafty living room. It's not terrible, but far from ideal for my parents, who are not as nimble as they once were. They've already visited us twice in Sunny Patch and I'd like for them to come as often as they want. My mom had hip replacement surgery on Tuesday....

On Sunday morning, my husband dropped Jake off at a class. As he walked home, a sign caught his eye. It was homemade, with a background made of tin foil. The scrawled out words FOR SALE BY OWNER were barely visible from the street. The house looked strikingly similar to our old house.  We're not in the position to buy a house, of course, but this one certainly appeared to be what we would be looking for if we were. The funky sign piqued our curiosity.

I reached the owner by phone. I introduced myself and got a full description of her house. Surprisingly, the price and taxes were not unreasonable, relatively speaking. We got to talking. She raised 4 children there and sent them all to college. She told me her kids were devastated to sell because they come home often, but the house was too much for her. "Do you know where you're going to move?" No, she didn't.  She asked me about our house for sale, where it was located, even how much we were listing it for. "You're closer to the city," she noted.  (Should I say something about swapping?) I told her that we had just printed up a flyer, offering to swap our house for a house in Sunny Patch. "Oh," I felt her recoiling, "I'm not really looking to buy."

Did she understand that in exchange for her house, she'd be getting our very similar, slightly smaller but finished house with cheaper taxes and price tag, 8 miles away, in walking distance of an express train, AND the difference of the value of both houses AND whatever handsome sum from the 20 year appreciation of her house?  But I didn't push and didn't clarify. Say too much and it starts to sound like a shady scheme.

I told my husband about the call. The house sounded almost too good to be true and seemed worth the look. Maybe the swap idea could be clarified in person, if appropriate. I rang up again. Could we see the house next week? "Couldn't you come today?" she asked.

So that is how we came to look at a house for sale, yesterday. "What the hell are you doing?" my friend Allie exclaimed. "I don't know," I both laughed and sighed, "but just tell me everything about that house when you saw it 2 years ago."

We saw the house for ourselves. The windows were all covered in plastic on the inside, and every curtain and shade was drawn. The house was messy and there were piles of stuff everywhere. A couple of the closet doors had fallen off, and all of the pocket doors were stuck and not functioning. I tripped on the track going into the living room. We knew that a tree fell on the house, at some point, and only the damaged part of the old roof was replaced. The sorry looking aluminum siding would probably have to go, too.  But despite all the distractions, we could see that the house had good bones. You could tell that there was good light and the house was laid out nicely. There was even a little alcove for the piano, with no interfering heat vents to worry about. It wasn't exactly a fixer upper, these things could be lived with, fixed, and replaced over time. I was certain it was the home of happy (and happier) times. This woman lost her husband awhile back, hence the initial attempt at a sale and now, again, but at a heavily discounted price.

We were with her for about 40 minutes and covered a lot. In showing the house, we learned the history of her family. They had 2 happy decades in this house. We peeked into the old barn in the back, that had clearly seen better days and overflowed with stuff. I let myself imagine my piano in there. What a great space to play, teach and have my student recitals (with all of the money we don't have, of course.) As she walked us to the car, she told us, "Now that I am packing up, the house no longer feels like mine." "Do I ever understand this feeling," I murmured in agreement. "Your house sounds lovely," she continued, "but I am looking at condos." We wished each other luck and that was that.

Today, the owner of the house called me. She received 5 inquiries about the house, yesterday, and decided to give the listing to a realtor. "You saw the house on the one day that I listed it myself," she informed me, "so please call me directly if you're interested in the house." And with that one phone call, I knew the house was essentially gone. The realtor will help her clean up the house and get it in shipshape. It's the right thing for her. The house will sell like a hotcake.

Needless to say, I am back to not looking. I still have a house to sell, after all!

Hoping for an unperfect storm

Belac 1/10

The whole house is rattling as the wind keeps whipping by. They are reporting gusts of up to 70 mph in  parts of Westchester County. The wind is whistling between the houses and an alarm continues to go off in the center of town. The lights keep flickering. The dog is upset and barking and whimpering. I can only imagine what a terrible day Belac is having at school. They've probably had to close all of the blinds in his classroom. By now, I bet he's already visited the OT room in the school basement multiple times. And my thoughts keep wandering to our old house. We have a 200 year old white oak tree out back. It is sturdy and healthy, but has shed large limbs during high winds and storms. I've never experienced winds like this. It is a huge tree. Is a falling tree covered by our home owner's insurance policy? I don't even know.

Baby steps

Belac 1/10

It's rainy and there were blustering winds all night. I awoke at 5am to Belac's crying. He's afraid of this kind of weather. We have spent many a sleepless night adjusting a white noise machine, playing soft music, endlessly trying different ways to dampen the sight and sounds of rain, wind, lightening and thunder.

I found Belac sitting up in bed sobbing.

"Mommy, we didn't have popcorn in a long time..."

"You're right! What a good idea, we should have popcorn this week."

"I like popcorn," he added, wiping his eyes with his hands.

"Me, too."

I went to get him some water. "Mommy STAY!!" he shouted to me.

I climbed into bed with him. "If you want me to stay, you need to stop crying, okay?"

I saw him wipe his face with the blanket and listened to his arrhythmic gasps die down.

Me: "Guess what, I found out Matthew is coming to your birthday party."

Belac: "Oh! Yes!"

On and on I talked like this, as the wind continued to blow, with the occasional interjection from Belac.

By the time the alarm went off at 7, my back was killing me from squeezing into his bed. He could barely wake up and was very irritable. By 7:45 when we were leaving the house early because my husband was giving us a lift, he completely fell apart because there was no time to draw. "I HATE school" he sobbed and wailed. "I don't like rain," he kept saying on the way to school, as tears dripped down his face.

We arrived to the hall monitor's desk. Jake headed to the library, where the kids wait for the bell to ring on bad weather days. Belac and I waited for his Aide, as we've done every single morning, rain or shine. His Aide was nowhere in sight. The monitor said to me, "I bet he can do it. Let's have him go to the library, himself, this morning."

To Belac, she said in a loud voice "Can you go to the library by yourself, Belac?"

We've been waiting for this day for so long, but on this difficult Monday of all days? I looked down the hallway. It's about 75 steps to the library.  He'd have to pass the office, with the busy comings and goings, the nurses office, and an intersecting hallway. Could he just ride the wave of kids? On any other day, I would think so.

"Belac," I said, wiping his drippy nose from all the previous crying, "remember you told me you want to be a big boy? Today, you are going to the library by yourself, like a big boy!"

I stood at the hallway and watched him follow the crowd. He walked more slowly than the others and close to the wall. I watched him enter the library. Big deal, right? It's a big deal.

With a grain of salt

Belac 1/10

We had our old neighbors over for dinner. One of their boys is Jake's closest friend.  We haven't spent substantial time together since moving away, last June. Belac was waiting at the door and jumped up and down at the sight of this family. I was busy in the kitchen and didn't come right away. Apparently there were some nice exchanges. The boys all went running upstairs with shouts of glee and excitement.

The mom turned to me and said, "I have to say, Belac has improved dramatically."

"Really?" I asked, as I began cutting up salad.

She told me how she saw him before and why she felt he's different now. "Gimky, he's really so much better! What a good choice you made about the school."

I really appreciate these comments, I really do. Especially when there is some detail behind people's perceptions. But I don't really take most of it to heart. In fact, I am usually pretty skeptical of people's comments. Is he really doing better? I think so. Does it have to do with the new school district?  Partly, I think. But if anyone goes on too long or gushes, I stop listening. I begin to think people have other motives. Maybe they are just trying to make us feel better about our unsold house or the situation we're in. I sometimes think Belac could behave exactly the same as before and people would still say he's better. Your hair looks nice, your son is doing so much better, what a great looking salad that is!

Do I sound negative or paranoid? I hope not. I like hearing good things, I appreciate other people's kindness. But the difference is, I no longer cling to everyone else's every last word, hope, opinion, or promise about Belac. I think it's healthy and a sign that I'm doing okay. We're doing what we're doing, he is who he is, and we're all trying.

Bailey

 Bailey and Jake, 2006

I have always been a little scared of 4-legged creatures. I didn't grow up with animals or pets. When I was in grade school, a German Shephard followed behind my bike while I was riding around my neighborhood. I was scared. I pedaled faster and faster, yelling for it to go away, only for him to keep running after me until I crashed into something.

When I became older, I was able to fake it and be okay with dogs. By the time I met my husband's family, I had no choice but to get comfortable with their bull mastiff. Still, I had this idea that dogs smell bad. They shed. They're gross. They drool. I was a pianist for a Met Opera Singer for many years. She brought her poodle everywhere, sometimes carrying him in a little bag so he could go in a cab, to the music conservatory, to the store. She gave lessons with her dog curled up in her arms. The dog licked her lips often and always slept between her and her husband. And it was often, that I'd be walking with her to and from places on the Upper West Side, this regal, large Diva in her bejeweled hands and designer clothes, and she would be picking up her dog's shit with a plastic bag while not missing one beat in talking to me about anything. It was absolutely ludicrous, I thought, it's just a dog.

Well, we've had our little bichon for 4 years now. We initially adopted him because we thought he'd be good for the boys. During those early years, Jake would have a playmate while Belac was in therapy. Belac could develop a relationship that wasn't so language dependent. Both boys would learn to take care of him. He's now very much a part of the family. My boys love him, my students adore him, everyone remarks what a cute and well-behaved dog he is. But cute as he is, for the past few years I have simply tolerated him. Does it sound terrible? I am not really an animal person, you see, and he was always this kind of extra thing I had to take care of. I feed him, walk him, pick up his do, bring him to the vet, bathe him, get him groomed.... When he was recently on medication for over 8 weeks, I had to stick something down his throat twice a day and apply medicine to his wounds and he hated it. We both hated it. Especially during the first year when he was having accidents all over the house despite all of my training him by the book. I nearly gave him away several times.

Anyway, you know what I realized the other day? Maybe I do love this dog, after all. He comes and curls up next to me when I write my blog, as he's doing right now. He sits at my feet when I practice and entertains my students when they're waiting. He's always happy to see me when I enter the house, wagging his tail and running around in circles. When I tell him "come" because he's taking a little too long sniffing every tree and pole, he just comes. I like to walk fast and he keeps up. There's no nagging to get him to hurry up, no negotiating, no complaining. It's kind of nice to know that a relationship can be so simple.

Jake

Jake 8/09

Wow. With no apparent fires to put out today, my day felt kind of empty and pointless. JUST KIDDING, just kidding, that was a JOKE! For the record, I don't need any more excitement on my plate.

On Thursdays, the kids and I get home around 6:15. There's usually a mad dash to get dinner on the table and homework finished. While boiling some pasta, I sifted through papers that had accumulated on the kitchen table.  I noticed there was a math sheet, only half finished. "Were you supposed to do this?" I asked Jake. He looked it over. "No," he replied. I thought about it. "Wasn't there a day this week when you didn't seem to have math? Isn't this the sheet you were supposed to do?" I asked. "I forgot," he said. "I don't understand. Were you supposed to do this or not?" Silence. "I was supposed to do it," he told me.

After dinner, Jake got into the tub. I reminded him that he needed to hurry. It was getting late and he still had homework to do. He was playing around, he's a kid after all. 10 minutes later I called to him, "Did you wash your hair?" "Yes," he told me. I peeked in to check. I touched his head, it was dry. "What's going on, Jake? Don't you want me to trust you? I know you don't want me to get mad at you. But the thing is, I'll be even more mad if you're not honest with me." We had some exchanges. He burst into tears with his head in his knees. Then he wouldn't leave the tub and wouldn't leave the bathroom and couldn't stop crying. I left him his pajamas, pulled the drain open, and suggested that he get dressed.

5 minutes later, I held a towel open before him and beckoned, "Come on, Jake." He was still crying. This child is a lot like I was as a kid. Confident on the outside, super sensitive on the  inside, needing a lot of encouragement and approval, completely stubborn. "Look," I reasoned, "Telling the truth is important and you know why. You learned from tonight, right? So let's move on."  "No, I didn't learn," he said. "Yes you did," I argued. "If I asked you, now, if you finished your homework yet, what would you say?"  "No" he replied. "If I asked you if you washed your body, tonight, what would you tell me?" "No" he replied. Trying to be silly off the top of my head, "If I asked you if you are a boy or a girl, what would you say, would you tell me you're a girl?" "No," he replied, cracking a smile. "Come on! Get out of the tub before you freeze!!"

He finished his work as he had a sweet for dessert. While brushing his teeth, we agreed that he could stay up another half hour if he wanted to read. (He loves to read, and like me, could stay up all night over a book.) 45 minutes later, I heard him call to me. "Mom...? You didn't kiss me good night yet."

I went to tuck him in. "Mom, my leg hurts. It feels like someone's punching it." I turned on the light to have a look.  He had a muscle cramp. We talked about stretching. I massaged his leg a little and he told me it felt better.  I kissed his cheeks and fussed over his loose tooth.

When I was a kid, I would have gone to bed without another word with my mother.  Never in a million years would I have asked her to come to me, much less ask her to notice my sore leg. Maybe I should have. Maybe she wanted to come but I just needed to invite her. I think going to bed upset or angry is the worst thing in the world.  Though Jake and I have similar temperaments, he's very much his own person. For one, he is often able to tell me how he feels or what he needs. This is something I never learned to do, myself, until I was an adult. I don't know how to explain what I'm trying to say here very well. I have revised these last lines about 100 times now.... What I want to say is. It means the world to me that Jake and I seem to have a good relationship. I love that he wanted me to say good night to him. When I sat at the edge of his bed, tonight, it was as if I was looking down at my 8 year old self. And for those few minutes, I recognized that this was one of those things I never had but really wanted. In these fleeting and sweet moments with Jake, I make peace with that kid in me.

Pep talk

Belac 12/09

As I pace around the main floor, while the heating people try to resuscitate the furnace, I realize that I'm talking to the house. Am I losing my mind? I am talking to the house like it's a person, like it's a lover who has been abandoned. I know you're lonely and now cold, I say, but you need to keep hope! I know it's a lot to ask. Please don't fall apart! I know that someone will come along and love you. (I swear it's not you, it's the sucky economy!) Can you just hang on a little longer? Please?

My miracle workers! 3 hours of tinkering down there and the furnace is up and running.

Shame on those movers and shakers from yesterday! Some of what they said was blatantly untrue. They wanted a new furnace out of me, that's what. One company even took the tactic of "saving" me money. By replacing a box for $1200, they could probably salvage the old thing.

Still, I cannot belittle the problem of an old furnace underwater. The solution was anything but quick and straightforward.

And so on that note, I address Westchester Heat of New Rochelle, NY: Thank you for showing up when you said you would, for the second time this month. Thank you for trying a few things before immediately coming to conclusions. Thank you for performing magic. And for your dry humor, pun intended. Thank you for patting the furnace on the back. And for talking about its replacement only after you went to serious work on the thing and only after I brought the subject up myself. I overheard you tell your assistant that you wanted to spare me 5000 bucks if you could. What decent and outstanding people you are. Thank you.

Keeping Head above Water

Belac 1/10

I met a realtor, today, who wanted to preview our house for a client. Our appointment was scheduled for 1, but he was already waiting when I arrived at 12:30. There was no time to go around the house, turn on all the lights and raise the heat. "Come on in," I cheerfully exclaimed as I let us both in. I flicked on a few lights and began showing him around. I heard an unusual sound in the basement, but didn't think much of it. I just showed the house a few days ago and everything was fine. We walked around the main floor, then went out to the yard. As we headed back in to see the 2nd floor, I again noticed the whirring sound from the basement. "That's strange, let me just check what's going on down there." I unlocked the door. Did I hear... splashing... WATER?  Please wake me up from this bad dream! I saw a pipe spewing water like a fire hydrant in summer. The force was so strong, the water was foaming white. I had Niagra frickin' Falls in my basement!

"HOLY SHIT!" I said aloud.

I waded right in, water filling my cowboy boots and soaking my jeans. I found the main water switch and shut off the system. When the spewing stopped, I finally turned to the realtor, who was watching quietly from the stairs. "I was seriously just about to tell you what a carefree, trouble free house this is!" I told him, as I actually laughed in disbelief.

"Okay," as I took off my soaking boots and socks and rolled up my pants, "let me show you the rest of the house before I deal with this mess!"

You know what kind of kills me?

I had come straight from the bank. I had just inquired about starting Belac an educational fund. His brother has one, which we started at his birth 9 years ago. He was born not a year after our wedding day, and we put every cent of our wedding money into his college plan.  Look, it's not enough money for even a year of college, but it's something. We clearly behaved like we had plans and expectations of Jake. Then came Belac. During the first years of his life, we never got around to starting him a fund. We were preparing to be first time home buyers. By the time of his autism diagnosis at 2-1/2, we were in the position of just trying to meet his needs. He's almost 7 now. And  now and again, when we've come up for air, we've had nagging feelings about the preparations we haven't made. I'm not very superstitious but somehow it feels like a bad omen. He's a smart kid. We should assume he'll make it to college. We should make an account in his name. If he doesn't make it, that's another thing. But we should put some money away towards it and plan for the best (and not always the worst.)

"How much will you deposit?" the bank manager asked me. "I don't know," I responded, "what's the minimum amount?" Maybe we could open up an account this year.

As I waited on the plumber, I made some back of the envelope calculations. My guess was we'd be out 500 bucks over this flood, when all was said and done. I was right. I dutifully wrote checks to the 3 people who came, today. But what I didn't take into consideration is tomorrow. It appears we may have to replace the furnace, as it quite literally drowned. We'll be lucky if someone can repair the old thing, but I've been told to brace myself.

So it's very clear. First things first and that means keeping our heads above water. Belac's college fund will have to wait.

Mish mash

Gimky 1/10

My heart goes out to the Haitians.

Last Wednesday, I visited Regina during her Visiting Nurse Service of NY intake. The social worker was amazing. She delicately and exhaustively covered everything from Regina's medical history to her emotional state of mind to her finances. I heard Regina explain that she does have colon cancer and that she refused chemo. I heard about her difficult relationship with her son. I heard about how she's dipping into her grandkids' inheritance to support her full-time aide. I heard her describe how that really hurts. That she wanted to die in the Bronx hospice, but her friends convinced her to have the surgery.  That she missed going to concerts and museums and felt depressed. I blinked back tears the entire time I was there.

I filled the nurse in on details when Regina couldn't remember, at times making phone calls to confirm appointments and details with others. I asked about getting Regina's full-time Aide respite services. I pointed out that I had noticed about 11 prescriptions on Regina's desk, last week.  Upon questioning, Regina explained that she had thrown them all out. I also got a brief tutorial on Medicaire coverages. Before I left that afternoon, I created a binder for Regina with a list of her doctors and contact info, a list of things she has to do everyday (weigh herself, use her cane, drink Ensure 1-2 times a day, etc), and a list of the people in her life and their phone numbers. When leaving, I kissed Regina  on the cheek. As I walked away, she grabbed hold of my hand and put it to her cheek for a long time. Driving home, it dawned on me what the social worker meant by 'if and when it comes to that time.' What she didn't elaborate on, is that we would only apply for a certain assistance if Regina were still alive after her grandkids' inheritance ran out. I don't know why it comes as such a surprise to me to know that Regina could (and will) one day die.

On Thursday, as an experiment, I put Belac into a small music class I am teaching. I was pleasantly surprised at how Belac kept up and noticed that he was not SO far off from the others. We marched, danced, played, and took turns with the violins, drums and piano. Even though I was the teacher, someone who tends to be very directive when necessary and proactive about keeping control of the class, I was still happy. Frankly, with Belac there, I would teach this class for free. He has so few opportunities for enrichment, and here he gets music and age appropriate peers. So we'll see if he can hang on in the next classes.

Today, we went into the city to spend the Martin Luther King holiday. We wandered around the Museum of Natural History, where we're members, saw an IMAX movie about Michigan's Great Lakes, played in Central Park and ate steamed eggs and waffles at Lalo's, my favorite restaurant. The kids were happy and engaged enough with all the familiar and unusual sights around them. I did not think about autism or the house or anything serious for a second. I walked around my old neighborhood in the sunshine and felt young again and hopeful.

Food for Thought

Belac 11/09

http://www.nytimes.com/2010/01/17/realestate/17cov.html

It's so true. Our house was also not purchased as an investment, but a place to live. And it happened to be a beautiful, happy place, too. 16-1/2 years later or even just 2 years later, I will not regret when someone else sells the house for over a million bucks. We'd stay to make a killing if we could, but like the people in this article, moved because we needed to. We couldn't wait for the economy to pick up. In exchange we've found a school for both Belac and Jake, which in itself is like winning the lottery. We are lucky.

I am overloaded with life and will write soon.

House

(Belac 1/10)

We temporarily took the house off the market over the December holidays. We had a handyman go through the house with a fine tooth comb. I was about to take new photos to begin listing it February 1. Now a family has appeared with an interest in renting it.

In the past 6 months, we've had 2 deals fall through with potential renters. The first time, there were 3 young guys from the city. It wasn't ideal, but as long as all 3 guys were named on the lease and passed credit checks, we would sign them on. They came multiple times to measure and look. But the 3rd guy never came through with his paper work. The application was never finished.

Another family was renting a 2-BR in White Plains' Trump Tower. They had 3 young girls and wanted the privacy of a house. They loved our yard. They also took an application after a second visit. But when their landlord discovered their plans, he dropped their rent drastically. In the end, the reduced rent on their apartment trumped our backyard. Who could blame them? I would have stayed put, too.

Now another family has appeared and wants to rent our house. Honestly, I am shocked. This is not the time of year when someone typically begins a lease. (It's not a bad time, actually, because we could still get the house on the market by Spring 2011 or... dare I say - god forbid -  some future Spring.) Everyone who has come to see the house since September has been a potential buyer. This new family is a friend of our neighbor's, a neighbor who I was upfront with and knows the truth about why we moved. So maybe this is a good thing. At least we would plug up a major leak in our wallet, temporarily. But I also can't help but feel very disappointed. I really want to move on and am not happy about becoming a landlord. Yes, that job would fall to me, and it's not a particular hat I feel comfortable wearing.

Well, let's not get too ahead of ourselves. I know all too well! Nothing is a done deal until it's a done deal.

It's business time!

(Belac 12/09)

Okay. I am just about to go and clean the house. Really, in just a second I am going to log off!

Regina called this morning. She needs more colostomy bags but there is still the problem of reaching the doctor about the wrong prescription. I could bring her more, easily, but the box I bought her was out of pocket and very expensive. At 1-2 bags a day, $5 a bag, it adds up! We need the correct prescription so that she can be at least partially reimbursed for this expense.

I called the nursing center, where she stayed for a month. I got one nurse, asked for another nurse, then asked for the head nurse. I was made to wait for a long while. They aren't nice or helpful at this place. While visiting, I saw patients asking for things and the staff ignoring them. A man needed a napkin at lunch and was made to wait so long, I couldn't stand it and got him one. Another woman waited to get help to pull the cover off her oj. Meanwhile, the staff was scuffling around slowly, having conversations with each other, taking their time.

Being a fast talking, persistent NYer was the only way to go about dealing with these people.  I finally got some information from the head nurse. I called back with a follow-up question, the floor nurse sighed, I had to go through the whole rigamorole to get him back on the line. Before hanging up, I reminded the head nurse I would see him tomorrow at 10am. I expected the prescription to be waiting for me as I was driving from 2 hours away (I exaggerated, it's 1 hour) and had no time to sit around and wait.

I then called the surgical pharmacy that turned Regina away on Friday. "If I come to you tomorrow morning, how long will it take to fill this prescription? Can you call the warehouse and find out if it's in stock? I need it filled within 24 hours and it's a big order. She's been your customer for at least 25 years. I will call you back in 20 minutes, is that enough time for you to find out? I also need it delivered to her apartment when it arrives."

I know why Regina was desperate the other day. No one was making it easy or truly helping her. She was out in freezing weather with her caretaker, physically going from place to place. And the nursing center. Forget them! The fiasco just to get someone on the line, and even then, I was told several times that I had to be mistaken about the prescription. Is this how we treat old people? As nobodies, not in their right mind?

I let Regina know that a new prescription was guaranteed, tomorrow, and that I was looking for a place nearby to fill it. She was quiet. Was she crying? What was going on on her end of the line? "Look," I said, "I will call you back in an hour and go over our plan."

I can't help but wonder. Richard, you came all the way from Toronto to see your mother. Did you do anything nice or helpful during your stay?

Million dollar mommy

(Belac 12/09)

It is my 'free' day, today, and I plan to spend it cleaning and catching up. Our home really fell apart  in the span of one week plus the 2 weeks we were away. Between putting out fires at the other house, going back and forth to Queens for Regina, teaching, and keeping track of the kids, there was no time for anything. I still have to unpack my suitcase from winter break! There are bills to pay, piles of papers to sort through, and loads and loads of wrinkled laundry to be folded. Though my husband and I spent a few hours tackling it all, this weekend, there's much more left to be done. Over the past few years, I have become efficient, organized and tidy. So even though I am quite pleased with the outcome of things outside of home, this current state of affairs at home is hell for me. Just 10 more minutes here and I'm gone.

As I was sifting through mail, yesterday, I looked over an automatic renewal notice for our life insurance. We set up life insurance 9 years ago, the year our first child, Jake, was born. It hasn't been updated since. The company withdraws monthly from the same bank account, for the same coverage, with the same numbers, but our life now is anything but the same. We now live in Westchester County, where we own a house and have 2 children. One of them has needs and everything related and unrelated is just very expensive. I showed my husband the notice. I told him to look around at the 3 weeks of neglect. "We need to insure me for more. Maybe not as much as you. But definitely for more."

Look. I don't plan on going anywhere. I am in good health, knock on wood, pretty happy by nature, and I take care of myself for the most part. But you never know. You couldn't hire someone to do everything I do. And even if you tried, you'd blow through all of the money in two years. If I were gone, I am certain my husband would find a different job so he could spend more time with the kids. His income wouldn't and couldn't be the same.

Over the years, my husband has told me that if something ever happened to him, he fully expected me to get over him, marry again and to do it right away. He didn't want me and the kids to be alone. Who in the world talks that way? Not to mention, how completely unrealistic is that?  He's the one that has the income and would have options, I teased, he'd have women all over him.  "I don't need to adopt another man to take care of," I always joked, "so will you please just get on the treadmill right now!"

As much as this little song and dance is amusing, the fact is, he really needs to insure me for more.

Regina is home

(Belac 12/09)

I have seen Regina 3 times this week and things are very good between us. On Friday afternoon there was a problem with getting her the correct colostomy bag.  On that day, she and her non-English speaking caretaker went all around the neighborhood looking to buy colostomy bags. No one had them in stock. On top of it all, her prescription was incorrect, the model number prescribed pulled up pediatric colostomy bags. She was desperate. I called several surgical places to no avail. I called the nursing care center and complained. The doctor was not to be reached, as she was not full-time at the facility. I waited to talk to the head nurse. How could they have let her out of the nursing care center without a couple of colostomy bags to get her by for a few days? How could the doctor have been so sloppy?

Long story short, I couldn't find a place within a few miles of her that stocked her particular size. Finally, I thought to call the Sunny Patch pharmacy. They thought they could get something to me in a day or two. "Please, I need something by latest tomorrow morning!" I explained my situation. "What can I do?"  They referred me to a surgical pharmacy, a few towns away. Though I called this place as late as 4:30 pm, they could have the bags delivered by express mail and ready for pick-up by 9am.

"Thank you" I told the owner with great ceremony, when I saw her the next morning. "Are these for you?" she asked. I explained Regina's situation as she rang me up. "Bless your soul," she said.  "Oh no, " I explained, "I've hardly done a thing. This woman. Now, she is someone to bless. She ran a soup kitchen and served thousands of meals for the homeless in Manhattan. She spent her life helping everyone. But at her age, you know, there aren't many people left to return her favor. She has a son but he's in Toronto... and does... nothing for her, unfortunately."  "She's probably left him a million dollars, too" she mused, shaking her head. 

I happen to know a little of Regina's plans. A few years back, she had asked my husband for advice. She wanted to leave each of her 4 grandchildren $25,000 but needed to make certain that the money would not end up in her son's hands. Frankly, I was surprised to hear that someone so frugal, whose husband was a schoolteacher and had been dead for 15 years, would have that kind of money to leave. It was incredibly touching that she was in fact saving this money for her grand kids, when she could clearly use the money to make her remaining years more comfortable. She wanted her grand kids to use the gift towards college or to help buy a home, things that she had never done.

On Saturday morning, I brought Regina her package of colostomy bags. She was so relieved. Her son had just arrived from Toronto and was showering. I helped her write her checks in the meantime (she has a broken arm.) Her son emerged, a Daddy Warbucks kind of character. "Hello Richard," I greeted him and gave him a hug. "Oh," he stammered, "I thought you were someone from the nursing care center. I didn't recognize you. Well, hello!"

I helped Regina get some food on the table. She took food out, I sliced bread, made coffee and all the while, begged this independent spirit to just sit down. Her son, in his late 50s, spent the entire time at the living room couch tying his shoes. After the table was set, he made his appearance. His pleated trousers were pulled high up on his stomach, a Montblanc pen peeked out of his shirt pocket.

"Now Richard," she handed him a piece of bread, "take care of me. Put cream cheese on this for me."

He buttered the slice and proceeded to put it in his own mouth.

"Richard!" she exclaimed, "I'm hungry! That's for me!" and pulled the bread from him.

Did he forget that his mom was home for the first time in 5 months? That she had a cast on her dominant hand? That she's almost 91 years old and maybe could use a little help?

I did not say a word.

He continued to drone on, with the exaggerated articulation of an opera singer. Where did he get that accent? Is this how all criminal lawyers speak? There was no substance at all in what he was saying. He sounded ridiculous. Someone called. I picked up the phone, it was her niece from France. At this point, he lept up and took the phone from me.  I heard him speak with a charming telephone voice, "Hello, this is Richard, Regina's son. Yes, I am in for the day." I don't speak French but can understand it fairly well. I heard Regina say: Yes, well, he's tres, tres, tres occupee and cannot stay. He's leaving tomorrow.

I washed Regina's dishes and put the food away, as we talked over a few details. Her son fumbled around with her stereo. As I got my coat on to go, I told her to call me if her full-time caretaker was not back in 30 minutes. Regina was worried. But I pointed out to her that it was Saturday, after all, which meant that the shopping would take much longer than usual. I reassured her that she would probably be home soon (which she was).

When I said goodbye to Richard, I hugged him again. He was so stiff and formal. "I will tell my mother to call you if there's anything," he said to me, as if I were a caretaker and being paid by the visit. Isn't the normal thing to say, thank you so much for your help? I live far away and I can sleep a little better at night knowing that she has friends that care about her? "I know Regina will call me, and I'll check in on her, too."  I turned to look back at him from the door.  "You know, Richard?" I began, hesitantly, "your mother has helped so many people throughout her life."  "Yes...?" Did he sound surprised? Did he not know? I stopped. I was not going to lecture a grown man. "Well, I'm just glad that I finally have the opportunity to do something nice for her."

My face

While writing 'Random,' my husband peered over my shoulder. He noticed a photo I recently posted.  "Can I see that?  It's a photo of... Jake!" His voice hinted of delight, as if Jake's photo was on the internet by sheer coincidence.  "You know," I told my husband, "I write here almost everyday. I think I've posted a hundred entries by now." I also felt a bit defensive. "There are other photos, see? But you can't really see our faces and I don't use our real names. I've posted their artwork, too...."

"Wow! I'm going to have to check this out," he told me as he turned on his computer. He last read Snowflake in September. As he quickly reacquainted himself with the site, he was shocked at how my blog had developed. I was - all at once -  nervous about what he might think. I felt naked in broad daylight.  Nothing written here would come as a complete surprise to him, but would he think I've gone off the deep end? That I was disclosing too much? Wasting my time?

He read an entry that mentioned him.  "Gimky, you make our relationship sound almost... romantic."  Really? "And who is Vincent Chin?" he asked. What does he mean, who is Vincent Chin? I couldn't believe it. I filled him in. He read up on Chin on the internet and was amazed at his story. "No wonder your parents never let you sleep at anyone else's house growing up!" he proclaimed, "This explains a lot."

My husband was also curious about how someone might find my blog. "I think it's kind of impossible to find me," I guessed, "I don't self promote." He tried googling words like autism, blog, snowflake, our real names, etc. The blog kept not appearing. "But how does anyone ever find you then?" he wondered. "I'm not really sure, but I kind of like it this way. Only a handful of people know."

Look, I'm not exactly hurting for casual people in my life. I am a naturally social person and have conversations wherever I go. I know that Doris, the Sunny Patch crossing guard, is a Fox News-watching, Republican. She's hilarious and I look forward to seeing her, everyday. I know that the guy, who came to fix our floor, has a child who is both blind and deaf. He explained how he got her to a special school in Massachusetts. The person we rent storage from, many towns over, used to know my landlord's father. He told me what a good guy he was. My new neighbor, I've barely met, described her messy divorce. My husband asked my sister about the invitation list for my 40th. My sister teased my husband, "You are so in trouble! You're married to someone who makes friends while waiting in line at the grocery store."

If I announced my blog to 'Friends' at Facebook, I would likely accumulate many more Snowflake 'Followers'. After all, in today's virtual world, we hoard friends and followers and display them like trophies, concerned more about their numbers than substance. Thanks, but no thanks. The reason is, I think the majority of my Friends at Facebook would read this blog for the wrong reasons. It wouldn't be with the desire to find out more about autism or to catch up with me. I mean, if they wanted to catch up, they'd write me a note, we'd have some exchanges, and maybe I'd tell them about Belac's autism if it were appropriate.  I tend to feel that most people we know would read for the same reasons people read the tabloids: out of sheer nosiness, boredom, and complete schadenfreude. They might be mostly interested in how this picture-perfect family, who appear to be living the American Dream, is just trying to stay one step ahead. My husband is VP of a Fortune 500 company and I have degrees from Juilliard and performed at Carnegie Hall, last year, but I give you plenty of reasons not to envy us. We have an autistic child, we can't sell our house, my child ran away from school and....

It's not that I want to pretend we're something that we're not or maintain a facade. But I believe the public disclosure that we have an autistic child would be somewhat sensational. I couldn't bear anyone's pity or delight over our struggles. I couldn't stand the extra attention or sudden interest from friends, who otherwise would not be so interested in my life. Maybe, deep down, I suspect that telling this story changes nothing, though there would surely be people coming out of the woodwork martyrizing me as 'such a good mother.' It would drive me nuts. I grew up in a household where my mom had pretty significant problems. I rarely - if never - talked to any one about her. I didn't see how anyone or anything could help us and preferred to put on a good face and fit in as best as possible. I can tell you, this was a very productive way of going about things growing up. But the problem is, if you don't allow yourself to ever be yourself and to feel whatever it is that you're feeling, how do you know who you are? How do you know how you feel?

My kids can drive me crazy, but I remain their optimistic cheerleader most of the time. I usually tell my parents that things are fine. I can't say much or they'll worry. I can say a little more to my husband's parents, but I have to restrain myself or I will be delivered the conversation stopper: 'well, that's how it  goes.'  I have put on a good face and have saved face for as long as I can remember, everyday and everywhere. But the truth is such a wonderful thing. It's a relief to be able to say, when necessary, this is just fucking awful and it fucking sucks. (Oops, did I just say that?) My point is, the truth is such a simple, freeing, and refreshing thing!  What I am trying to say is, I can't be completely truthful to the people in my life because I have roles to play.

It means a lot to me if people read my blog because they are looking for something and found it here. It's with those people, in particular, that I have the courage to say what I say here.  I feel free. It's kind of ironic. That here, of all places, in the company of strangers, where I hide behind a pseudonym, I dare to show my real face.

Random

(Belac's bedroom 12/09)

I received a box of chocolate-covered figs from one of my students. At the moment, I am trying to resist the urge to eat the entire box.

I want to say a few meaningful words about my day with Regina and just can't begin. It was both amazing and awful and I'm going to have to sleep on it. I seem to write better in the morning, so I will try tomorrow.

With all the recent craziness, I have not been paying much attention to the kids. Behind my back, Belac has been having some of his best days ever at school. The reports from his teachers have been glowing and I am one proud mama.

I spoiled myself and went to see Ella, this morning. I picked her up on the Upper West Side and we drove until we spotted the first parking space. We headed to a corner diner and caught up on a million things. Not an hour passed before we had to pry ourselves from each other and get on with our day. I also got a parking ticket, but was so happy I didn't care. The fine was well worth the time.

Tonight, I came home to an email from my best friend from high school. I am so surprised and touched that she wants to come from Michigan to celebrate my 40th.

Life is Good.

The little house that COULD...

Our old house 11/09

All is fine with the house. After 2 full days of worrying, sitting around, waiting for fuel, servicing during and after hours, the heat has kicked on, the water is running, and nothing exploded. Thank heavens! What a great house we have. Do I sound like a broken record?

In the meantime, my husband is still intent on doing something special for my 40th. I told him what I really want is to see all of my friends. We didn't know how to do it, at first. We have limited resources and currently live in crowded quarters. Then it dawned on me! What's the great idea, you ask? We're going to have a party in the best venue ever! No one needs directions, the rent has been paid for and there's even running water and heat....!

As long as the house is just sitting there, we may as well enjoy it to our heart's content. Needing to change the venue due to a sale would be the best problem to have! Could we just apply a little Murphy's law here?

Lukewarm

Angels 1/10

As you know, Jake is a new student in Sunny Patch. Making friends has been surprisingly slow-going for him. As a 3rd grader, most of his classmates have been together for 4 years.  I've been trying to help him socially and arranged a few play dates. They seemed to proceed fine enough, but the invitations were - for whatever reason - not reciprocated. Every now and then, I'd ask Jake about this kid or that kid at school, and there was always the response as if he were doing me a favor. "Okay, Mom, we can invite them over."

Finally, in December, he mentioned a kid on his own. Another day, he told me that he had exchanged addresses with this classmate named Luke. I emailed the parent and never heard back. Over winter break, I overheard Jake talking to his aunt. He told her that the reason why he had so many friends from his old school was that he made kids laugh there. Upon questioning, he said he was more serious this year at his new school. It was also over this winter break, that I suggested to Jake that we invite all of the boys from his class to his birthday party. "But don't forget to invite my friends," he told me. "Of course! I'll be inviting all of the boys." Jake clarified, "I mean: I want my friends to be there, too. You know, the kids I went to school with [last year]."

Conversations like this tug at my heart strings. There's just no way around it. My Jake has had to make sacrifices in pursuit of helping his little brother. Yes, there's good in that kind of life lesson. He'll be tougher, he'll be more compassionate and more flexible, he'll be more this and more that as a result of these experiences. But there's no denying that it's not all been sunshine and roses for him. It's not always been fair.

Yesterday, when I went to pick Jake up from school, he asked if he could go to Luke's house for a play date. My heart sank a little. "Sweetie pie," I explained, "I did say we could have him over any Monday, but we can't today. I didn't arrange it with his mom." (His mom never got back to me, I couldn't say.) "Mom, I'm serious, he said I could come over, today!" He whispered urgently, "Please, mom, can I go?"  By then, Luke had come over with his mom. I looked at this child Jake chose himself. He wore glasses, was very articulate and had a big smile. He was short, definitely not a hyper kid, and looked more cerebral than sporty. I noticed a little hearing device around his ear. I overheard Luke point out Jake's poster to his mom "you should see the cool poster Jake made, it has pictures of real snowflakes." Jake waited ever so quietly as I made arrangements with Luke's mom. When I finally gave Jake the thumbs-up, the joy on his face was immediate and amazing and I saw the most beautiful expression on his face. I was so happy and relieved for him. This was a Luke warm response of the best kind!

(By the way, the play date was a success. It figures! It just goes to show, connections are made between 2 individuals and cannot be manufactured by a 3rd, even if she is the most well-intentioned mother.)

My lucky stars

(Canada, 12/09)

[This is an entry I wrote while on vacation, when I had no internet access. I was inspired by a thoughtless comment. Here it is:]

My father retired at the age of 71 in January of 2009. A big farewell party was thrown for him at the hospital. Then, not two months later, the hospital needed help. Would my father be interested in coming back to work as a consultant? My parents had recently seen some of their retirement vanish and the extra income was welcome. Accepting this offer was a no-brainer.

Believe it or not, this was not my father’s only offer post retirement, astonishing given the high unemployment in Michigan. Part of the reason is that Detroit has been hit hard. Finding capable pathologists willing to make their home in Detroit has proved challenging.  Another reason is that my dad is simply quite good at what he does. His unusual combination of specialties makes him a big bang for the hospital’s buck. The hospital reaps even more savings because my dad, as a consultant, is not entitled to a bonus or health insurance. (He qualifies for Medicare, anyway.) It’s a win-win solution for all.

My dad is a very lucky man. At key moments in his life, he has been at the right place at the right time. He immigrated to the US during Vietnam, a time when there was a doctor shortage in the states and green cards were easier to get. But - it goes without saying -  he also worked his ass off. He came without resources and no initial support system. He took his work very seriously and managed to make a stable life for all of us, beginning his family in a basement Bronx apartment. Everything was possible. Nothing less was expected from his children. You work, you pay your bills, you live within your means, make sacrifices as necessary, you clean up after yourself, and you never, ever make excuses. Those are good values to pass along. Take responsibility of yourself! Look what is possible when you work hard!

My husband and I grew up in households with similar values. A good education was considered the ticket to any success. We studied hard, worked, and accumulated multiple degrees from prestigious schools. Carrying on our parents’ legacy was expected. After all, our paths had been paved for us! But the reality is, my husband and I are not exactly repeating a history we’re both familiar with. He is the eldest of 5. We were the first among our siblings to have children. Of now 14 grandchildren, Belac appears to be the only one with special needs. Instead of serving as a model to the others as the oldest family, I often think we are more a warning of what can happen.

You can have fancy degrees from MIT and Juilliard and be the nicest people in the world, but Autism can still find you. It is possible that your perfectly nice home, once thought of as an investment, can’t and won’t sell. It’s possible that your high income is barely enough to weather the rainy days.  It’s possible that your child will have all sorts of challenges that neither parent ever had. Challenges that no amount of hard work will completely solve. We are in unchartered territory. There is no road map and the search for clarity is ongoing. This is how we plod ahead.

Unlike our parents and our siblings, what my husband and I have paid in taxes is little compared to what the system has spent on my son. The year we funded his education ourselves, my son’s kindergarten cost 48K with all expenses included. KINDERGARTEN. Now, we’ve moved for a public school in hopes of getting ourselves on better financial footing, if the house could now just sell! In the meantime, the entire amount of what we pay for rent in Sunny Patch, for which only a small portion is allocated for school taxes, probably does not cover what the school district pays for Belac’s Aide, alone.

Truthfully, people I previously may have held with some disdain are now the people we are today.  One of my husband's brothers, in a recent debate among family, described a certain “parasitic professional to the public system.” I understand where that sentiment comes from and know he wasn’t even remotely thinking about us when he threw those words out there. But it hit a raw nerve. I replied to all, “You do realize, right, that you’re probably referring to people like your brother and me?” He apologized immediately. “Those” people now include his brother and sister-in-law. Not sloths, not lazy people, not people with a dozen children, not people making up problems or trying to create problems, not substance abusers, not people with a sense of entitlement or people who are comfortable with any of this. We’re educated, law abiding, working, high income earning – but not high income enough earning, responsible, bill paying, tax paying citizens, who previously never had to rely on anyone for anything. We aren’t poor or needy by any stretch of the imagination, but we need the system. We rely on the system in a way our families never, ever had to, in a way our families never needed to.

Well, I could leave this entry just like this. Poor us. The End. But I won’t because it’s not really the whole picture. I do generally feel grateful most of the time. You know why? If we were destined to have a child with special needs, lucky for us that it’s autism, a disability that gets a lot of attention and research.  If we have a child with autism, lucky that we’re living in metro NY, where services and resources are readily available. Sounds like I’ve brainwashed myself, right? But whether I forced myself into believing all this or simply came to it naturally, does it really matter? Counting my blessings is a powerful thing. I can go on easily. Lucky that my husband received a good education and can make most of the money so I can be with the kids more. Lucky for his job that allowed us to move and make this leap of faith. Lucky for my own education so I can better advocate for my kids. When my brother-in-law makes a stupid comment, I am compelled to speak up. Lucky that I had Belac, because he made me find my voice and learn how to truly stand up for someone and something in a way nothing else ever did. When Belac appears before me with another colorful illustrated book that he’s made, I want to just show the world how talented he is. And when Jake and I converse about all sorts of stuff or when he makes me laugh with one of his geeky grade school jokes, I am overwhelmed with gratitude that I could be his mom. You see? Just like my dad, we – too - are lucky. I thank my lucky stars!

Just... perfect

(Jake 12/09)

I headed out, earlier, to run some errands. We were away for almost 2 weeks and - above all - I needed to get some groceries. It was an afterthought to check on the old house. Though I had a car full of food, I knew from previous experience that it wouldn't take long. I'd run a few faucets, pop my head into every room, and I'd be in and out in minutes.

I zoomed up our old walkway and picked up the rocking chairs that had blown over from recent high winds. One of them lost a piece in the crash. Oh well, you could hardly tell and they still rocked perfectly. I let myself into the house and scanned the first floor. Nothing abnormal. I poked my head in the powder room. Check! But I did a double take. Was that... an icicle hanging from the faucet? I squinted and cautiously touched it with my fingertip. Yes, it was ice and it was definitely a problem. Not surprisingly, I could not get the faucet to run. I sighed deeply. Oh my god, I realized, I'm seeing my breath!  Is there no heat? I turned the thermostat up, but nothing kicked in. I went back to the powder room. I noticed the water in the toilet was frozen and - of course - it wouldn't flush. The kitchen faucet ran but none of the others would.

I called my husband to get the number of our new oil company. I was sent to the basement to check on the mechanicals. Everything seemed fine. On-off-on-off... no effect.  "Do you have oil?" the dispatcher asked patiently. "Definitely," I replied with confidence. I had just paid for our last delivery in December. I went searching under the porch to check on the oil tank. I didn't even know what I was looking for but could see what looked like a gauge from afar. It looked red, not a good sign. I got close. EMPTY, it read. SHIT!

It was already late on a Sunday and we weren't officially engaged with the new oil company until tomorrow. They promised to deliver first thing in the morning, but there could be real damage tonight! What kind of crappy company did I sign up for? I took out the phone book and started calling, telling the same story to a dozen oil companies. "Can you make an emergency delivery? No, we don't have a contract, but we'll sign up for one on the spot if you could come.... I'll give you my credit card number.... I can pay you cash if you prefer." Anything would be cheaper than dealing with exploding plumbing. But in short, no one would come out to help us and no one could be enticed.

I said the identical thing to about a dozen companies, and there was only one that went out of their way to help me. Everyone else stopped me in the first minute, telling me that their sales department was closed and that I would need to sign up in the morning.  Even the company we had had for 4 years would not help. "You terminated your contract with us," was all they would say.

So let me tell you. I called, no joke, the Perfect Fuel Oil Corp of Yonkers, NY. They couldn't help me either. But unlike the other places, someone in the office picked up right away, listened and tried to see what they could do. She hooked me up with the dispatcher, who informed me that his trucks were completely out of fuel after being out for the day. BUT he also took 10 minutes to ask me about our system and gave me some helpful suggestions. The plumber, who I pay and only got back to me much later, confirmed much of what the dispatcher suggested to me.

As I drove to Home Depot to pick up space heaters, I thought about my phone calls. The experience confirmed something I learned when initially trying to get help for my son: there are only a few who go above and beyond what is expected of them. Everyone seems competent and good enough when things run smoothly, but you see much more of people's true character when things are not so optimal. Finding people who are helpful and truly productive is a rare thing (in this case, 1 in 12). These are exactly the qualities that make the biggest impact and difference in times of trouble. (So thank you, Perfect Fuel Oil Corp, for trying! You live up to your name.) May we all have positive, helpful people in our lives and BE that kind of person that makes getting through life's ups and downs a little easier!

Tonight, I sit in the warmth of Sunny Patch and think about our old house, sitting in the freezing cold. I hope for the best.

Still cute

(Belac 12/09)

We hiked up Mont Ouareau, yesterday afternoon, just the adults. The kids stayed back with my husband's parents. It was incredible to be by ourselves on this mountain, snow everywhere, glistening pure white and high in the treetops! We raced up this thing and slid down the very steep parts. My brother-in-law and wife were as happy and frisky as I'd ever known them. I loved being in their company. They are 6 months into being parents of - what appears to be - the happiest child in the world. I vaguely remembered days like those. I asked my husband, "are we old and crusty in comparison?" We are 10 years older. Our children are older and the past few years have been more than just a little complicated. "At that age, we were just as cute," my husband reassured me, "and I still think you're cute."

I am so lucky for my husband.