Day 5

A local contractor came by to talk with us about our wanting to tear down 2 walls of our kitchen. He could see how there is 'difficult' flow in the house, lots of doorways and tight corners. Just imagine if you were in a wheelchair, I pointed out, you'd seriously be stuck in the living room with no place to go.... He studied the house quietly.

I don't know what's gotten into me. I planned my morning around a run for the 5th time in a row. I am not athletic so this is remarkable for me. I'm also practicing everyday and in spring cleaning mode. I am sick of listening to myself yack and wasting time. I found out about an organization and signed up the entire family to deliver Passover food packages to the old and infirm, tomorrow, all over Manhattan. The idea is that we will not just make deliveries but stay and visit a little with those who are up to it... No one is going to design a well-balanced life for us or tell us what to do. Create and live the life you want and need. Just do it.

Day 4

Out for a run in the crisp air and sunshine. We walked fast to the pond and then spent a half hour, all of us running and walking at different speeds. It was so nice. I ran slowly but managed to run the entire time. Could I really get used to regular exercise in my life? For like the first time ever? It's always been excruciatingly difficult in the past, but so far it's been a much different experience. I loved being out like this today! 30 minutes a day for 30 days is my goal. So far so good.

Girls

Am meeting to run outside with a couple of women in the morn. Also spending the evening with these same women at a play. Was also invited to a girls week end. I've never been invited or done something so... myself-oriented since marriage and without my boys and hubby. I always thought stuff like this was frivolous or something. Interesting thing is that each of these 3 women help me be a better me. They took me to lunch on my birthday and despite a fair amount of crying by at least one other person, it was the most beautiful thing and included even more laughter and sarcasm by all. There's no bs or posturing by anyone and it's exactly my kind of style. Lucky, lucky me.

stuff

Yesterday, I caught up at the NYT and browsed the real estate section. I read stories and saw photos of apartments and their owners, and paused to see a woman pictured in her brownstone. I knew her, but didn't know how. And then it dawned on me that she was a former classmate of my husbands. She has wonderful charisma and I was happy to see her there after all of these years.

Of course, we don't have 2 million dollars to spend on a home but I loved what I saw. The furnishings were sparse, understated and had very simple lines. Nothing looked complicated to clean. The walls were fresh and had nothing on them. Nothing was matchy-matchy or looked cold or too out there. Everything looked to have a purpose and place and it was just so zen. But I also honestly think that any place could look so great. You don't need 2 million dollars, in fact all you need is more thoughtfulness and LESS of everything else. Less clutter, less knick knacks, less material stuff all over the place.

I was inspired to fill a bin and a half of the kids' old papers/old assignments and to get rid of more books. Am I really ever going to open these music text books again? Everyone now carries around their very own library on devices attached to them. And that's the direction we are headed in, paperless. Gone will be a bureau my sister recently gave me that only became a repository for junk. Gone will be toys the kids no longer play with.... and the clothes! It's a chore to keep on top of all this stuff, but I need to go through all of that.

My husband and I recently decided to take down 2 of 4 walls in the kitchen. It will be easier to move around and eliminate a dark, useless hallway. But where will all of your cabinets go? someone asked. How much stuff do we really need? I answered. (Note: I want our house to be wheel chair accessible on the first floor and taking those walls down would achieve this. My husband looked at me knowingly over this comment having just lived with my mom all week....)

I am obsessed with not having stuff. Purge on!

day 2

Belac 3/2012

Ran 2 miles at 5.4/mph today and boy was it hard.

Hubby is helping me get into an enduring mindset. He believes that if I get on the treadmill for 30 minutes everyday for a month, whether running or walking fast - doesn't matter as long as I break a sweat, that I will become addicted to exercise. He's convinced that I'm going to feel great and not want to stop. Doesn't sound too hard, does it? But when I'm on that treadmill and at the halfway point, I start having to seriously talk myself out of stopping early. I try not to look at the clock during the longest 15 minutes I ever have to endure. I hate sweating. I hate panting. But I'm really going to try to do this. 

I am 42 years old and have always gotten by somehow by doing nothing in particular. But now I notice that the skin on my face is changing, inspiring me to wear sunscreen sometimes. I've noticed that despite pretty decent eating habits, I've gained a little every year. And to be utterly honest, I also see my mom with her cane, with her many debilitating ails that keep getting worse, and the at least extra 50 lbs. she's carried around for decades and... I just don't want that to be me if I can help it.  

My good friend - Alyssa, do I call her here? - who is a doctor told me once that if I could get through my 40s in relatively good health and be fit throughout, that I'd be far better off when facing old age. In her experience as a doctor, she told me that certain things that could be prevented start surfacing around this age and really, in our 40s, what we need to do boils down to nothing fancy. Regular exercise and controlled eating.

Last night, our whole family sat down and looked at my husband's "fat" pictures he had collected for inspiration. He runs everyday and has kept 20 pounds off for 2 years. The visuals were astounding and he was so proud. I didn't realize how much heavier he once appeared. He even used to look older! 

So even though my running partner bailed on me, today, it was still day 2. Hoping this gets easier.

day 1

In prep for a run with my new running partner, tomorrow, I decided to get on the treadmill, today. My last attempts at running were last summer, and I just wanted to see where I really am in the privacy of my own home. I ran continuously for 2 miles at 4.8/mph and it was easy enough, but then couldn't will myself to sprint or take another step. (My son runs 8 minute miles, 5/mph is my husband's cool down speed.) Still, it's not bad for me. Also weighed myself for the first time in a couple of years and as suspected, I am the heaviest I've been. At 5' 5'', I am 138 lbs. I'd be quite happy to lose at least 8. I otherwise have pretty good eating habits and don't really plan to change much there. Looking forward to losing some of the jiggle, but honestly care more about my health. I need to run. It's free, it's good for me. Wish me luck!

Tuesday

I love these Tuesday mornings when Jake and I have 40 minutes to ourselves. This morning, he asked me to quiz him for his Science test tomorrow. I happen to love studying science with my kids and wish I had been a better student growing up. However enriching music has been and made my life interesting, I have more than once thought that I should have been a middle school guidance counselor instead or done something in the fields of sociology or neuroscience. If I had taken academics a little more seriously, maybe I would have discovered that I had other compelling interests and strengths besides music.

I am reading another Oliver Sacks book "The Mind's Eye." He describes the most fascinating, unusual and often debilitating conditions with compassion. He tells the astounding stories of how his patients learn to compensate. Anyone who is in the thick of problem solving and needs a shot of inspiration should read Oliver Sacks.

Happy Tuesday.

home

I got a big hug from Jake. Belac ran down, still pulling on his pajamas, laughing and calling out MOM!! I missed you!!  As I sat down to dinner with my husband and sister, my husband joked. It's good, Gimky! We've been on life support all week. It's like we were suffocating and someone just opened the door and let the air in! He poured me some wine and hugged and kissed me like there was no tomorrow. We're so glad you're home.

Memories

Ran from the concert and nearly fell in my heels on the way. But if I could get to the station in time to change my ticket I could hop on an earlier train. I miss my kids. I miss my husband. And my sister is in town and leaving in the morning. Success! In my preferred quiet car and now traveling through Noank, the most picturesque part of the ride. A few things I want to remember - and by the way, I hate typing on this iPad for blogger because it doesn't recognize the return button for new paragraphs.... 1) Someone made a friendly comment about my needing to have another child. These are friends I've had for a long time. I told them I couldn't and they wanted to know why. I guess I never told people in my group about my medical scare/surgery some years back. But it had happened in the summer, after all, off season. In any case, my good friend and fellow pianist told me that her sis-in-law had not shared my same luck and that she had just flown to DC the previous night just to see her for a few hours. SIL had had similar symptoms, similar problems, but when they went into remove the tumor, 1 month ago, not only was it cancerous, it had spread to her small intestine and into her lymph nodes. She is stage 4 and 36 years old with 2 young children. Cancer is devastating and I am so lucky, knock on wood, that my tumor turned out to be apparently nothing. 2) I am now convinced that one of my cousins is an undiagnosed autistic. My cousin Mack is the eldest of 4 boys, all now in their early 50s. The 3rd I had met on several occasions and knew to be eccentric and was the only one to remain in Taiwan. He was also married by a matchmaker and set up with a woman who was told would never have children and had some medical issues. She was considered someone not quite marriageable, but then to everyone's shock, the wife went on to bear 2 girls, really good kids, apparently, and top of their class smart despite parents that aren't really paying attention. The brother could previously barely get through school and then hold down a job most of his adult life. There have been serious fall outs in the marriage. Then when Macks father died, 10 years ago, all the brothers gathered together in Taiwan and willed all of their fathers considerable wealth to that 3rd son. All of it. It's what has kept that 3rd brother's family together, however miserably. As long as they remain together, they are all provided for. Mack, I asked, what exactly is your brothers problem? He does not know how to behave socially, he lacks social intelligence. He is rigid and stubborn. Now, what does this sound like to you? 3) I worried aloud to my cousin about someone. Then I heard more troubling news and I was even more upset. My cousin called me this morning at 9 am. We never talk in the mornings. Is everything ok? Do you need to get into the studio? No, no, no, Gimky. I was just thinking about what you told me last night. I just wanted to tell you. Think positively. Maybe in the end it's not such a bad thing. Can I just tell you, as much as my cousin drives his other brothers and their wives - and his own - crazy, he is an exceedingly wise and good guy. Sharp as anything. Okay, I'll try to think positively. Hopefully you are right about this one. We will wait and see, he told me. 4) Last night, a regular asked me about my boys and the house. She reminisced about her own, now in their late 20s. They have flown quite far away from the coop but both coming home to spend 2 weeks with her for Mothers Day. She told me, they've always been great kids... and time has flown by! Her positive energy made such an impression on me. I need to remember that whatever the challenges they face, I have a couple of great kids, too. I am not jinxing anything by recognizing that a little more. I'm ready for home!

shades of grey

On my way to see my aunt and her grandchildren, I stopped at a most lovely place, the Brookline Booksmith. I get lost in there and it's where I go, every time I meet up with my all of my cousins' kids. None of my Boston cousins are native English speakers or grew up on books in English, and so books are a special fascination for all. I have brought them The Giving Tree and the Missing Piece, Good Night Moon, The Runaway Bunny, The Snowy Day... yesterday, I brought more favorites, Lost & Found and Oh, the Places You'll Go! After paying, I went downstairs to a far away corner to get the books wrapped and noticed rows of chairs and people waiting for some event. As I saw the books being covered with colorful polka dotted paper, I only half-listened to the announcement of upcoming events over the speaker. Then I heard mention of "Look me in the eye" and "Being different" and I perked up. Then an author was being introduced. Who was it? John Elder Robison. I was stunned. He was here? I had to satisfy my curiousity and was now going to be late to dinner. I decided I could stay only 10 minutes, but you can tell a lot by just seeing someone in flesh and blood for a few minutes.... Again, I was harshly reminded why so many people might not believe Belac is autistic. I mean. It's really hard for me, in turn, to believe that this guy is autistic. If Belac could turn out to be as articulate and funny as this guy? I'd be proud and feel like he was definitely 'cured'. It makes me squirm to hear Robison refer to himself so willingly as being autistic. I don't even like to use my son's name and that word in the same sentence.... Not sure if Belac or Jake even know what that word is or means and I would cringe if either kid ever using that word to describe Belac. Even Temple Grandin doesn't offer up that word so easily. But who am I to say that this guy is not autistic? (Who am I to say Temple Grandin is?) Or that this guy didn't once also look like Belac at 5 years old and then developed into a fully contributing person, decades later? His very accomplishments should give me hope, right? I don't know.

gifts

Jake got into some difficulties on Wednesday. Turns out he was missing homework he was supposed to do and showed up to school in a disorganized state. I got an email from the teacher about her general 'concerns' and how he needs to methodically check off his list he brings home everyday. I called Kati. Can I ask you a favor? Could you go to the house around dinner time. Just have him show you his assignment pad, the corresponding assignments he did, and have him show you it's all in his binder? My mom was not able to oversee this and my husband was I got out of rehearsal that night at 9pm and called to wish the kids good night. And it was then I found out that Kati had been over for 2-1/2 hours. WHAT...? I asked Jake why. Well, some of the math was wrong. And then I didn't do the right thing in English. And then Kati couldn't read my handwriting in my writing assignment so I had to write it all over. She was really nice about it, he added. Of course I knew that. She is an amazing human being. I called Kati in the morning. Oh My God, I thought you'd be over for 10 minutes and you stayed for 2-1/2 hours?? Thank you, first of all, and second of all, I am so sorry! We talked about Jake and what they had done together. She had been listening to my concerns about his organizational challenges, all year, and now understood very well what I was talking about. She told me about this face blindness condition she had learned about, recently, a condition that made her realize how complex the brain is and how people can have such difficulty connecting the dots even though it's all there in front of them. She had some ideas and you know what? I had this overwhelming sense of relief that I could share this with someone who not only found it fascinating but was interested in solving (or at least, helping) the challenges. I thanked her again. This is what friends do for each other, Gimky, and you know what? You have helped me so much and it's about time I could return the favor. Last night, I had dinner with my brother in law's sister. Before the bill even came, she gave the waiter her credit card. What are you doing? Come back here, I called to the waiter to no avail. I tried to give her cash and she wouldn't take it. Gimky, I come to you every Thanksgiving and you never let me do anything. Put your money away and let me buy this one. The truth is, I don't really let people do things for me. I don't know why, if it's my pride that gets in the way or if I feel like I might owe someone something I can't return. Anyway. I'm touched.

Men and Women

Met my cousin late last night for dinner. Didn't finish talking until midnight in his apt lobby. He told me some astonishing and very personal things. I also mentioned concerns about my mom's health and worried about someone I cannot mention here. We talked about relationships. He's a bit of an expert you know. He was divorced then remarried, then became a dad. He also knows a thing or two or three about infidelity... You want to know what keeps a relationship alive? he asked. Woman must behave like prostitute and give oral sex. Everyday! I slapped his arm and accused him of being juvenile. I am not kidding! he protested, that's all we need! And women? What do you think we need - do I even want to know, I'm not sure! We men have to listen to all of your problems, of course! he rolled his eyes. I laughed even harder recognizing that truth. Trust me, Gimky, it's how men and women work together.

all about me

You can really tell a lot about yourself when you travel alone. You choose to go wherever your feet take you and stay as long as you want. You spend your money and you eat whatever you want. So what do I know about myself? When I am by myself, I really don't worry very much about anything. I am low maintenance and I am comfortable with making things up as I go along. I take the T always, never cabs unless I am in a dire emergency. I walk fast and long distances easily and willingly. I am always on time. I like looking at people and I definitely do not look like a college kid anymore. All the girls are wearing jeans as tight as spandex. No way I'd shimmy my butt into a pair of those. I like eating at bars, getting a glass of wine over a salad or appetizers. I like bartenders who leave me alone after they've filled my glass and I am a big tipper. I can't help it, I was a waitress once upon a time.... I really respect the musicians in my group as human beings. We've been playing together for a dozen years now and have fallen into a good groove. I like meeting up with friends but only the ones that take no effort. I love my cousin who I have decided is crazy and kind of a train wreck though a weird combination of hugely successful and generous with a cherry on top. He's the brother I never had. There is something endearing about our very late night dinners and me listening and rolling my eyes over his rants about love, real estate, schools, money.... . My cousin-in-law worried there was no working tv in the studio. Don't worry, I never watch tv. If I can't sleep, I read. Actually, I need to read before bed. I also have to be out the door at 8am or I feel claustrophobic. I also don't come home until I need to sleep. I need the sunshine, I need the fresh air. This is how I have always been, I am not a home body.

off I go

On the train, Thank God. There was so much to do to get out of the house this morn. Ran several loads of laundry, looked for a missing shoe, fussed with the furnace - which wouldn't turn off, went over an assignment with Jake due on Friday, wrote a note to Belac's teacher, and then laid down the rules (major bribery!) If Belac never complains about school, homework, and a certain flower all week, both at school and at home, he'll earn a Perplexus on Friday. Just do it! I told him. If Jake signs out everyday, gets all of his homework done independently, is helpful with Nanna, he gets to use his birthday gift card for something at the toy store. Yay! They jumped up and down. But I have to get a good report from school and Nanna, everyday, I reminded them. I'm going to do it! Belac reassured me. By the time my mom and I arrived at the Stamford Amtrak at 9:15, I had been driving 75 mph most of the way with the last 5 miles fidgeting in stop and go traffic on the I-95. I am never late to anything but I was lucky this time. The train was later than me. Just checked. Phew! I have my music. I am on my way and hoping that all will be fine without me.

running

A second person has asked me about being their running partner this Spring. This is absolutely ridiculous because not only do I not exercise or 'work out' on a regular basis, I am definitely not a runner, nor am I remotely built like one. In fact, the few times I run - on the treadmill or the track - I honestly feel like I am going to die. But walking around town with the dog, I also recognize that what I am doing is really not enough. I have an active, outdoorsy lifestyle minus any aerobic exercise. I eat responsibly. But I keep putting on a pound or two a year and slowly but surely I am heavier than I ever have been. I can't stand it.

My husband, on the other hand, has been running almost everyday and has kept off almost 20 pounds for 2 years now.

Let's do it! I agreed, but I am warning you. I am not as capable as I must somehow appear....

We start next Wednesday.

401K

Our first ever tax guy told us I should set up a 401K for myself. Who...? me??? I laughed. Just recently, I moved my little 'business' out of a shoebox and onto the computer for the first time.

Let's just say that money-making is not my forte. I teach about 15 hours a week and my most steady paychecks come from the nursery school, a few performances and a handful of students. One family owes me for a ton of lessons and I'm not sure what's going on there. A couple of years ago, another bounced a check for 3 lessons. I never said a word about the fine I had to pay or the money I never received and nor did they. We simply carried on and they haven't bounced a check since and the boy plays beautifully....

I'm great at saving and making do, but I'm just not a big or demanding earner. But then I have to remember my dad, who for 20 years was a pathologist at an inner city hospital. He was not paid much given what pathologists generally earned at the time, but he was very valued where he was, did some interesting work, and there were good benefits and a pension plan he paid into. He told me, recently, that he never in a million years thought that the pension would ever really amount to anything. Now, however, at a time when some of his retired colleagues - who had been in private practice and enjoyed very comfortable lifestyles - are reeling from investment losses and counting their pennies, he tells me just how shocked he is to have that pension which actually amounts to something pretty helpful.

401K?? SEP...? These things sound like nothing at all to do with me. But why the hell not? Okay, then.

Rainbow Connection

Belac 3/2012

Dinner with old friends last night. They hadn't been over since we were in the rental, more than 2 years ago. Belac made place cards for each person, a new tradition now when we have people over to eat. Jake ran off immediately with his buddy since nursery school, doing what I don't really know. Belac worked on a story nearby, "The Giant Octopus," and popped in every few minutes to ask how to spell a word. Everyone else caught up. Eventually, the daughter was playing the piano, then I joined in, my friend, then my husband, then her husband, improvising and singing the Rainbow Connection, songs from the Muppets, Beatles, Les Miz, Evita, Twisted Sister, Coldplay.... all at the top of our lungs, with bumbling weird harmonies at the piano at times and cheesy half-step modulations. At 10:30pm, I thought to look at my watch. Oh my god! These kids have to go to bed! Why haven't we done this since like forever?

As I cleaned up, I realized that the last time I made this chicken dish, it was slimy and in the company of people I so desperately wanted to impress. There's something to be said about being with people with whom you have little to hide or prove. Or to be with people (the overwhelming minority) who aren't in the habit of thoughtlessly yacking about other people and telling others your secrets, while they're at it. What a nice night. What good friends.

the standard

Belac 3/2012

Early morning meeting with Belac's teachers.

Comments were very measured. Overall improvement in all areas. Reading score was 67 in September, 80 a few weeks ago, and now at a new high of 100. Annual goal is 115. Talked about his internal motivation in certain areas but not others, math vs. english, for example. His rigidity and his need for a better attitude in some areas. His difficulties with stamina.

Brainstormed some ideas about helping his reading. I realize I must really sit with him for 20 minutes a day and make him read. And I realize that I need to find some apps and make better use of technology in this area. He loves the math apps, surely there is something for the reading....

Mostly, though, there was talk about this NY Standardized Test coming up. 7 reading passages with questions. Aural comprehension component with questions. All things that are going to be hugely challenging for Belac and of grave concern to his teachers. The truth of the matter is, I do not care about this test. He is improving and going in the right direction and that is what matters. For the first time I said aloud, it's a shame that the teaching this year is all about this test! I think I offended at least one teacher and then had to listen to why learning to take this test was so good for Belac. I bit my tongue and listened politely.

It is ludicrous how important this test is, but I get why that is. It's a test that grades the school and teachers on how well they're doing and effects state funding. Of course we need certain benchmarks, standards and goals, but the constant teaching to the test has really gotten out of control. Frankly, we've lost sight about what education should really be all about.

Of course, Belac is the wrong kind of kid to reliably help the school ratings. You see, this test takes into account nothing about where Belac once was. I can say with confidence that Belac has probably come farther than most every kid in the entire 3rd grade of his school, based on where he began. But in the eyes of NY State, he will be a child that wasn't taught properly by his school or teachers if he doesn't get at least a 3 out of 4 on this test. Let's remember. In Kindergarten, we only dreamed of his being in a typical classroom. That he's now present enough and in the position to be expected to take a standardized test for typical students? That he's even gotten to this point is a testament to the individualized support, specialized instruction and quality teaching he has received from this school. The NY Standardized 3rd grade test, however, is not going to capture any of this. His story will be lost in the numbers.

It's stress that I see on all the teachers faces sitting around this table. It's me knowing there is nothing I can meaningfully say to help his teachers put this all into perspective. And mostly, it's pressure for Belac. The pressure to perform and practice each and every single day, fighting against his tendencies, and dutifully filling in hundreds of those little circles with his lead pencil. Like a dolphin at Sea World.

another morning

Sent Belac off to school and then it was just me and Jake. Threw an egg, leftover salmon, and frozen peas into yesterday's rice and fried it all up with a little sesame oil, soy sauce and garlic salt. It was breakfast and also lunch in his thermos. He sat with his bowl of fried rice in the porch, marveling over our new printer with me and watching it xerox a whole stack of his tests and projects since mid-January. It's such a ridiculous system. You get all of your graded work of like 8 weeks in one day to look over for the first time, and then you send it all back on the very next day, not to be seen for the rest of the year. How do you learn from your mistakes if you can't go through your graded work carefully and within days of a given test or assignment? Is that all that matters, ultimately, the grade? I have complained a few times about this system, already, but to no avail. It's the way it's always been done and so we just make do with this nonsense.

Packing up, I noticed that Jake didn't do part of an assignment correctly. He erased and corrected. It was now getting late. What time is it? I asked, as I helped him wet down his hair. He didn't have his watch on (again.) Grab your watch, I'll pack your bag and you have to scram, sweetie pie!

See you later, Mom! he hollered as he ran out the door with just 3 minutes until the bell. He was going to be late.

Have a good day! I called after him as I watched him run down the street.

knick knack paddy whack

Jake up at 7. Had breakfast together as I quizzed him for his science test and shooed him out by 7:35 sharp. Then went up to nudge Belac along. Back down drinking coffee as Belac ate and talked about wanting a perplexus and playing with Lily, well-worn topics.

Look, I told him, firmly and unemotionally, she needs to ask next, okay? She'll ask us for a playdate when she's ready.

But what if she never asks?

I really didn't have what to say. Maybe she won't and that would be sad and hard. But as my husband has said. Belac is not a charity case. His friendships need to go both ways and he needs to learn to wait.

You know what, Belac? You play with her at recess sometimes and you also have plenty of other fun kids to play with. Let's appreciate what you have and the time you do have with her at school. Okay?

As I helped him cross the street and sent him off the rest of the way on his own, I felt overwhelming love for both of my boys. I actually really like spending time with them. Our trials and tribulations have made our relationships stronger. I always wanted and thought I'd have my own huge family. But I can honestly say, today, that I'm so grateful and fulfilled with just my two. It's just right.

summer, how I love thee

Got my check to circus camp in just enough time to get the early bird discount for Jake. Then found out that movie camp was just about to close out for Belac and signed him up immediately. Was happy to get a 10% discount there, too, and I'm so glad. These are activities the boys have had their hearts set on. I am piecing together activities for summer and doing the math, we are also spending precisely half of what we did last summer on their old camp. Nice, because it also appears this summer will be more enriching for the kids. I plan to take the boys to see their grandparents for most of August. We are so very lucky.

let's roll!

intro to all of Belac's movies 3/2012

I love Mondays! I love movie-making class! I'm so glad it's Monday!

Ever since Belac began this class, a few weeks ago, he has made half a dozen stop animation films at home. It's a painstaking progress he relishes in and some of his stories have required 250+ photos. A couple of weeks ago, he showed me his first homemade movie. Alien Conquest, I read. I watched as a little lego man approached the evil ship. He neared with briefcase in hand. But then - to my surprise - the movie cut to the evil ship and I saw this tiny man getting closer and closer from the edge of the table.  Then he cut back to the man until finally both pieces were in view of each other and more within one frame. With some heaving and winding up, the tiny man smacked the evil ship with his little brief case, and the evil ship fell over. The End. Pictures by Belac Snowflake. Black out. I made my husband watch. Isn't that incredible? Maybe he was taught to do that but the fact that he is showing an event from multiple perspectives is just awesome!

This afternoon, Belac was literally counting down the minutes with his stopwatch and making sure he had the new movies he wanted to show his media teacher. I watched Belac run into the lab like it was an emergency. A stranger laughed at the sight saying 'that's amazing!' Yes, I chuckled, it's always a long wait for Mondays.

It's weird to think how in other classes, camp and school, Belac has needed additional adult support. Like his whole entire life. And yet somehow, here, in an area which he has high interest and big dreams, he manages well enough on his own. Without prompting, he is interested in other kids' movies and then wants to share his own. He pays attention because he wants to make bigger and better movies. He also has been dying to make movies with humans and I understand, for the first time since the start of class, felt particularly compelled to be in a collaborative project which necessitated his acting in a clip with 3 other boys. He had to steal a hat off of some other kids' head and run away....  It's seriously better than any therapy or social skills where he is prodded and prompted every step of the way. Here, however awkwardly and immaturely, he is constantly putting his social skills into practice because of his strong interest and desire, already in place. Not because a hovering adult is always redirecting him or forcing him to care about something just because you're supposed to.

Of course, I am in close contact with the teachers. There's a detailed letter describing Belac's quirks on file, which the center has permission to show anyone of his teachers. And it goes without saying that the teachers are simply spectacular.  I am just so happy for Belac. He vanishes into his room everyday to make up another movie or to make some drawings to animate. He has something he loves that helps him relate with his peers. He carries his camera around everywhere. He's having the time of his life and honestly, I've never seen him so happy.

small talk

Dinner with Kati's family. Somehow, as Ramesh and I were cleaning up, he admitted to me that his dad -- who I have met on a couple of occasions- was an alcoholic for as long as he could remember. We talked about it awhile. He told me his father had told him at some point that he did not believe himself capable of love. But do you ever think that it wasn't the alcoholism, it was his Asian culture that made him feel that way? He is an immigrant from India, right? Hm, was all he could say.

 I used to think Asians were not capable of expressing love, but then I arrived at Juilliard, the land of Asians, and was shocked to see how loving some Asian mothers could be.... What I mean to is, I also used to think that no mothers could truly get along with a bunch of her hormonal daughters. But now at 42, I look at Kati and your girls. I know they have reason to drive her crazy and that she, too, wishes she handles things better, but there's a lot of love going on there and it never ceases to fascinate me. My point is, we tell ourselves things to cope, things that make sense but may not even be true in the end.

You know. My dad's mom died when he was young. And I know -not even from my dad - that his dad and stepmom used to beat him....

God. That's awful!

As we brought pie to the table, Ramesh asked everyone at the noisy table, Who has perfect parents? Me!! cried Izzy. I cleared my throat at Jake and looked at him expectantly. Well! I shrugged non-chalantly to everyone's laughter, obviously Jake did not hear the question!

Number the Stars

Jake had to step into the mindset of a character, last night, and write a letter to his best friend in a book. I was touched to read the sentiments he expressed there, which I found to be pretty convincing. He may not have followed the assignment as prescribed, and public school is all about following directions, but the content is A+ as far as I am concerned. He is truly a kid that never ceases to surprise me.

He often manages to do well, but has to try really hard and take his own time. Sometimes I believe he is his own worst enemy. He doesn't always believe in himself and has difficulty performing to his ability under pressure or in competitive circumstances. And with his nightmares and poor sleep of this past year, I have found myself being very careful with him.

Recently, there were tryouts for the middle school talent show. A gazillion kids auditioned with their musical instruments. A gazillion more kids sang and performed dance routines. These are all kids who had been taking music lessons for years and/or had very outgoing personalities. And there was Jake, who - I was surprised to find out - signed up to perform with his Chinese diablo. Really? I was kind of nervous for him. Nervous about a potentially disappointing outcome and what that would do to him.

The audition time was post-poned several times and the honest truth is, I was going to be almost relieved if he forgot his diablo at home. The audition finally happened on Monday and apparently went well enough. Thursday, the results would be posted. The whole night passed, last night, with no mention of the results. He had a lot of work to do and I wasn't going to bring it up. He was off to bed soon, after all, and I wanted him thinking about only good things.

Hey, my husband asked as he passed by, did you hear the talent show results?

Oh, yeah, Jake said and stopped what he was doing, I made it into the talent show!

He did?

Yeah, almost everyone in my class auditioned, and I think I was the only one picked....

Have I really come to believe that the whole wide world will not stop to recognize either of my children's talent and so it's okay if they don't even bother trying? Or in my attempt to protect Jake emotionally, have I begun expecting that much less of him? Of course it's all wrong and backwards. Nothing ventured, nothing gained is what I tell the kids over and over. You become stronger every time you pick yourself up. The important thing is to just try. You know what, I realize? I need to own what I say.

done

Belac 3/2012

I opened up a college fund for Belac, today.

You did?? I texted back.

Yes! He now has a 529 plan. 

new room

Spent most of the day clearing things out and making Belac's room cozier. I built a bookshelf to display his lego creations, previously cluttering the floor. I pushed his desk under the window. I emptied out all of his drawers and got rid of a ton of crap. I worked on making his bottom bunk a clubhouse.

Belac ran home from school and then stood at his doorway, staring at the transformation.

What do you think? I asked.

I love it! he told me.

ask your mom

Belac 3/2012

It really is the sweetest thing. He's going to be the most devoted and loving partner one day. But right now he has to learn not to smother his little friend and I am determined he's going to learn. Today, he had a letter in his hand as we were leaving the house. I tugged it from him and unfolded the square. We looked at it together. I told him the letter needed to stay at home. Just talk to her at recess, writing letters like this everyday is not necessary. Okay, he surprisingly agreed without the usual further protest.

Now, I continued on non-chalantly and quickly while stashing the letter in my pocket, while you are at school, today, I'm going to finally build your shelves. Which wall do you want all of your lego creations?

learning to let go

A call from Sunny Patch and discussion of silent tears over a girl. He's always been attached to her, too much. He wants to be in her class. He barrels over kids to get her attention from afar. He yells hello to her across the way when everyone else is standing quietly at pick up. He writes her letters and writes her more letters. Begs me to see her. Wants to sit next to her. Wants to be her next door neighbor. Mom, he tells me, she's my best friend and I love her. And all year I have had to manage this, talk about giving someone space even if you love them, understanding everyone has the right to have other friends. For God's sake, it's like he's 16 years old or something. And you know what? I think the little blue pill. It makes this part of it worse. Everyday I've gotten the report that he's doing his work, lately, and doing it well, but everyday I also hear that he just can't stop thinking about and talking about her.... I told the school psychologist. We have no choice but to break this... 'habit'. Introduce and replace with other things and people to think about whenever possible.

It's a common kind of issue with kids with Belac's diagnosis, she murmured.

Ugh. Why do people make these kinds of comments? So we're going to give up on him, is that it?

It's what happens when any person loves someone else deeply... I corrected. Everyone has to learn to manage their emotions.

They were in the same class, last year, and it was easier and healthier in so many ways because they were always near each other and there was that security. Now he barely sees her in school and overreacts upon seeing her and is always looking for her. It's endearing in a way, he chose the sweetest kid, but he also needs to learn how to just deal. And so that he was crying silently but still doing his work and not disrupting others? That's coping. He's dealing. He's learning.

ELEVEN

Jake gave little half hugs to his buddies, the other night, as they left with their moms. Awww...! I heard one of the moms murmur. Where did he learn such a cool kind of gesture? It was not formal like a handshake, not contrived or attitude filled like a hand bump, not embarrassing like a full out hug or anything forced. Just this natural kind of gesture, an almost-hug that was just right. Jake was so happy, I could tell. He had just spent some hours celebrating his birthday with a bunch of both new and old friends.

The week end was all his. We had a party at an indoor facility and a few kids noticed what a strong climber Jake was. Thanks, Jake said, you guys are good, too! There was a sleepover with a couple of his life-long buddies outside of school. Moseying around NYC on a lazy Sunday afternoon, salivating at the LEGO store and dinner out with soda and a mountain of onion rings....

Last night, he didn't ask me to stay or when I'd be coming back when I kissed him good night. This morning, he deflected my shooing him out the door with a simple and unemotional 'ok, calm down!' That was a first and I wanted to laugh....  He was fully dressed for school and had been building with lego for at least an hour by the time I came downstairs at 7.

Happy Birthday, my boy!  Full steam ahead.

normal

Day 1. Belac is normal.

At 2-1/2 my MIL thought something was amiss. At 2-1/2 his nursery school teacher noticed he appeared deaf. We noticed that he did this funny thing with his eye while running back and forth incessantly. He became increasingly echolalic and we began noticing obsessive type behaviors. But I seriously just thought he was really bright. Before he was two, my husband and I accidentally discovered he knew all of his letters and numbers.... A psychologist for Early Intervention suspected autism after an evaluation. He also flunked a speech eval and was not processing language. He was severely delayed in every which way he was tested. Then a neurologist gave Belac a formal diagnosis of autism at age 3. I cried everyday, scared out of my wits. What did any of this even mean?

The diagnosis immediately gave Belac 35 hours/week of ABA, social skills, floor time, OT, self-contained nursery school, family counseling, family training, and speech over 2 years. Most of it was paid through the state, some of it was paid for privately, particularly the Floortime. Belac qualified for everything, including summer programming. When we weren't out for school and services, we were chained to the house for more services. Every now and then we came up for air only to be reminded that we were in a bad school district to deal with all this. We were overwhelmed emotionally and financially and what a mess. People were telling us to get a lawyer to fight our district (the one with the best track record takes a 15K retainer) and this would be an annual fight, someone else recommended the Rebecca School (85K), others kept selling their developmental pediatricians, a listening program at the McCarten school.... Did it look like we were made of money?

And that is how we came to the Neuropsychiatry department at Columbia Presbyterian. The evaluation included play observation, IQ testing, medical, psychological and neurological evaluations, parental interviews and social screening, and cost us thousands and thousands of dollars. Most of which was not covered by our insurance. We were at the end of our rope, though, and sick of the endless advice from everyone who knew someone who knew someone who might have had a kid with autism and what they did that saved him.  We also wanted and needed a team of experts specializing in autism to get to the bottom of this from every angle and make sound recommendations about what we needed to do. So what happened?

In our very first visit, the chair of our team prematurely told us there was no way Belac was autistic. Even though she had difficulties engaging Belac, she saw how he came to me at one point and told me, there's no way he would have done that if he were autistic. But lo and behold, a few weeks later, we sat down with the committee over reams of official looking data and what did they tell us? He's autistic. He's atypical and is high functioning, but he does in fact meet the criteria for autism. We were told Asperger's Syndrome was the highest functioning form of autism. Is he Asperger's? No. Is he PDD NOS? No, we do not recognize PDD NOS as a diagnosis. Can he outgrow his autism? No, autism is not curable and a life long condition.

They put Belac's name into a national database of autistic kids, which would qualify him to be studied by various autism centers and participate in various studies. But later, we consulted with the neurologist on Belac's team over a sleep study. What did she tell me? If Belac had simply shown up at her office for a consult, he would have left with a PDD-NOS diagnosis. What...?

Sometimes I just wonder. Why hasn't Columbia Presbyterian ever called, 5 years out? Aren't they curious to see if the diagnosis they gave Belac is really sticking like they said it would? Isn't that what you do when you have a database and when you're in the business of advising families? You follow up? But they're too busy. Too busy adding their many more and new 1 out of 100 boys into their database. It is a business after all.

The fact is, anyone can identify problematic behavioral symptoms but there is no definitive test for the overall disorder. The autism diagnosis is truly subjective. And look what's happening. Everyone now knows someone who has self-diagnosed Asperger's, these days. I'm of course skeptical, but with no scientifically-backed evidence to prove or disprove anything, what does it matter? Not to mention that there will soon be no more Asperger's Syndrome anyway.

Yes. My kid does not look at people easily, he has perseverative behaviors, he's internally distracted, socially awkward, often listens poorly, is rigid, and his speech tends to be over-articulated and off topic. But so what, I say at this point. He's somehow hanging on in his typical classroom at the moment - albeit with a pill, has a few friends, has a great sense of humor at times, and although he doesn't necessarily seek my approval, he absolutely hates it when I'm upset with him. Of course I'm going to set up a special needs trust fund for him just in case. Of course I want him getting whatever extra he needs to succeed in school. I do know full well he's not like everyone else. But today begins a day of no excuses for him except that he's different. The world is going to have to broaden their definition of "Normal" anyway after the DSM finishes their rewriting of Autism Spectrum Disorder. A very good thing, if you ask me.

It's day 1. Belac is normal.

future planning

This is the year that we get our affairs in order.

It means that we finally write up a formal will which acknowledges potential circumstances for both boys, particularly as it pertains to Belac's disability. It means that my husband and I are each insured for a lot of money. It means that we set up a special needs trust for Belac, to be financed mostly from life insurance, and for which Jake will likely later be named Trustee.  It also means that both boys became Canadian citizens, last year, just in case they end up with family in the north. It also doesn't escape us that attending college in Canada is substantially cheaper as citizens than simply the international students they would have been.... It means that the house - or whatever place we last live in - will likely go into the trust. And knowing that, we are refinancing. The interest rates are so low, now, that our monthly payments will not look that different even when paying the house off in half the time.

Does it sound like we're millionaires? Absolutely not. But I'll tell you what we are. We are the inbetweeners. Neither here nor there with autism, to some he is and to others he's not. So neither here nor there with qualifying for benefits. And overall, too rich for consideration, but not rich enough to pay for anything easily and without sacrifices and a lot of planning. 

We are in a sort of no man's land and need to protect what we have. I want everything wisely spelled out. It means we have a plan for Belac in case he can't meaningfully support himself yet can't qualify for government programs. It means the plan protects Jake and allows him to be less burdened in taking care of his brother when my husband and I are gone, and that it gives him something, too, from us. And you know what? I will sleep better at night knowing that we finally did this, formally acknowledging and planning for - and to a certain extent, accepting - the worst. Then maybe I can shrug a little and think, that's it, I'm doing the best I can and it's enough.


PS - I think this is also the year my husband will apply for US Citizenship. We recently found out that as long as he's not American, in the event of my untimely death, he would be forced to pay at least 35% inheritance tax on my portion of every asset that we own together, which is every asset we each have. The IRS would not recognize us as married because he's not American and I am. Crazy. The money is really all his, he's the primary bread winner! Ouch.