Beyond highschool

(Belac 11/19/09)

This morning, we began our walk to school and caught sight of a girl changing her clothes in front of our house.  "What is she doing?" Jake asked me, as he watched the girl shove her winter coat into a huge backpack. "I think she was adjusting her outfit," I hesitantly explained. We all crossed an intersection together. As she stepped in front of us, clutching her cell phone and hurrying to school, I noticed her bare heels sticking out of fuzzy house slippers! I almost laughed out loud.

I am so glad I am not in high school anymore.

It's not because I am any less an outsider, these days. In fact, I could argue that my differences are even more pronounced. The advantage of being older, though, is having more perspective, a certain confidence that comes with age, and the recognition that you can't control everything. I don't know how I got from being a girl wearing fuzzy house slippers in winter to where I am now. But I'm glad for the sake of my sanity and also for my children, that despite all the ways in which we might not fit in and the disappointment and scariness of life not unfolding exactly the way I wanted, I recognize that we're all doing pretty well. We are, of all things, a pretty happy bunch. If you've been reading me, you'll know that I don't say this lightly. I am very proud of my children.

Interlude

(Belac 11/09)

Took a walk at sunset, earlier. The path brought us around a lake and it was beautiful, stunning, really. The moon was rising and bright, and just beginning to glimmer on the still water. The air was crisp and strangely fragrant of something minty. The boys lagged behind, often meandering off the path. Belac found a stick and gleefully called out 'abracadabra' and 'look at me!' as he found different rocks to stand on. Jake threw pebbles in the water and zig zagged through the trees. The dog ran ahead and my husband and I chatted a little, but mostly we were quiet. In finding a little peace, time stopped briefly

The day after

(Belac 11/19/09)

I am always overwhelmed by regret after a visit with my mom. Why wasn't I more patient with her? Why do I let her get under my skin? My sister told me, "if it's any consolation, I think you're better with her than I am."  It isn't any consolation, nor do I believe that's even true.

If my mom were confined to a wheelchair, I'd  probably never pull her out of the chair and assume she could walk or dare think that I could teach her. Nor would I be mad if she didn't try to walk or just couldn't after even the feeblest of efforts as her physical limitations would likely be scientifically explained away and plain for all to see. In fact, I'd probably accept her physical challenges readily and focus on helping her compensate and manage. 

Though Belac's diagnosis of autism can be scary, in the absence of seeing his challenge in physical form, his diagnosis provides comfort. This diagnosis allows Belac to receive support and accommodations at school. And when he often doesn't respond, look or notice because of internal distractions, scripts from videos instead of using his own words, falls apart over seemingly small things, and basically behaves pretty eccentrically, I have some basis to understand him better. Subjective as the tests can be, his diagnosis prevents me from taking offense or thinking he is selfish or (always) blaming myself for being a bad mother. I can understand (and accept to a certain degree) that he has a condition. It's not about making excuses for him or me. Instead, it enables me to be more productive about his behavior and to be more compassionate. He's sitting in a wheelchair, I can tell myself, so how can I coax him to walk? 

The thing about my mother's 'thing' is, we don't completely understand it or know what it is. We are 3 daughters who have spent the better part of our lives wrestling with our very complicated relationship with our mother. And in trying to come to grips with it, we've analyzed my mother's behavior and relationships with a fine tooth comb. Over the years, we have woven together snippets of her social history from extended family. Constantly, we've tried to walk that fine line of protecting ourselves while protecting our fragile relationship with her. If someone had come along and diagnosed her with something, it wouldn't change who she is, but we would certainly understand better what was going on and how we could help her. Maybe compassion would come easier for us. In the absence of that, we have been pop psychologists trying to make sense of all of my mom's layers, tightly intertwined with the social customs and traditional beliefs from a faraway place, foreign rules of pride and shame, impulsivity and heightened emotions (a.k.a  her rage), the complicatedness of having daughters who had opportunities, the stubborness that comes with age and the make-believe that this couldn't possibly be all that bad because it's always been this way and we're all still alive and well, aren't we?

I recognize that we are a society that is guilty of over-diagnosing. We are a people obsessed with labels and as a result, 'normal' is this increasingly shrinking population. However. When something is amiss and you can't figure it out and it's not going away, giving a name to that something can be... an enormous relief. I see it as an opportunity for positive change. If we could acknowledge that what is going on with my mom is not normal and figure out why she's sitting in a wheelchair - actually, if my mom could find the  courage to try to see herself, I am pretty certain we'd all be better off.

A sighting

 (Belac 11/17/09)

Spent some time in an indoor playground, today. My kids and about 100 others ran around like maniacs. The noise was slightly deafening. My boys played a game. They tried to pull each other’s socks off and then ran away with the sock when successful. Amidst all of this, I couldn't help but keep track of one particular boy and mother. The boy was autistic, wearing a bright green pressure vest. He was maybe 10. He ran around the periphery of the large room and went in and out of the bathroom area. His mom followed and redirected. Every now and then, she led him into the playground area and not a few seconds later, he would leave. All the stimulation was too much for him, but I understood her attempts at socialization. 


Most all of the other parents, there, sat around enjoying mochas, conversation, and free wi-fi. Most of the moms had probably bothered to brush their hair that morning, put on a little make up, and pull on a pair of jeans they  bought within the last year. This mom had her hands full and her life was clearly not like the others. Though her situation could have easily been mine or any of ours by luck of the draw, most people didn't notice either of them in all this chaos. She spent her 8 dollars like everyone else but her child probably did not stay in the playground for more than a minute. When leaving, I saw that she carried her son out on her hip, like he was 4 years old, while kissing him on the cheek and whispering in his ear. What an incredible mother I saw today.

Too

Belac was coloring today. As I peered over his shoulder, he said "Mommy, I love the USA."

Me: What? [Was he reading? I looked closer at the Sponge Bob he was coloring.]

Belac: I love the USA.

Me: Well, that's good because you live in the USA. Do you know what I love?

Belac: What? [Still coloring Sponge Bob.]

Me: I. love. YOU! [I poked his chest dramatically.]

Belac: I love you, too.  [Still coloring and not looking up.]

Well. That was a first. His entire life, whenever I have said "I love you," he has either not said anything or responded with a barely audible "yah." I have sometimes suggested "you could say: I love you, too, Mommy" even practicing the exchange with him. Today, this spontaneous statement came without prompting. Though practiced through the years as something he could say, the response still felt somewhat genuine and meant something to me.

But, look. I certainly don't need him to tell me he loves me to know. Every night he will not sleep until I come and tuck him in. If I take too long in getting to him, he'll call out "Mommy, hug me good night!" When I arrive at his bedside, he squeezes me a long time. That's "I love you" right there. Still, I think if someone says something nice, it's important to respond with something nice (or a simple thank you) and that reflex takes practice with him.

Now, if he could ever say the initial "I love you" unprompted, that would be quite something!  (You see? It's never enough.)

The shtick

(Belac 11/17/09)

We are leaving for the Midwest, this Saturday, and I really need to sign off! There's so much to do. But before I take a break from Snowflake, I feel the need to say something.

Despite my moaning and groaning, I have come to recognize that my life is not any more difficult than anyone else's. Appearances are not always what they seem. In fact, there are probably millions out there with lives more difficult than mine.

During the first months that we lived in Westchester, in our 'house with the hill,' we met a family at a nearby bed store. Jake made a fast friend and they were bouncing from bed to bed. I liked how nicely the kids were playing together. I became chatty with the mother, who I discovered lived in our new neighborhood and we exchanged phone numbers. We didn't call each other for at least 2 years despite living within blocks of each other and having children of the same ages. There was something that I liked about this woman and I should have called, but I didn't have the courage to expose myself. I couldn't bring myself to explain why I was chained to my house (35 hours of therapies/wk) and couldn't easily arrange or oversee a play date. Little did I know or even imagine, that there was something going on in HER house. Something just as serious as, if not more than, the something in mine. Today, we are very close friends.

Last year, around this time, I met some classmates from 20 years ago. It was interesting and fun to catch up, many of my classmates had done well for themselves. But by night's end, I also knew that one of these successful people was probably an alcoholic. Another declared her life 'boring' and would not talk about it. Someone else brought his long time partner, no surprise there, and when asked about his brother, mentioned that he had come down with debilitating MS. The super successful lawyer, a local celebrity of sorts, told me that he lost his children in an ugly custody battle and that his kids were living out-of-state. I also found out that his brother was struggling to properly educate his 2 autistic children.... My point is, everyone has something they are dealing with. And no matter what that thing is, when it's yours to fight, it's huge.

I can't promise that I won't again wallow in self-pity, here, though I must admit I'm pretty tired of listening to myself in that state. But what I want to say is this. I know I haven't been given the short end of the stick.

I wish you all peace. Happy Thanksgiving!

Gimky

Some Enchanted Evening

(Jake 11/17/09)

Picked up Belac from after school, today. "How was he, did he behave himself?" I asked, hesitantly.  "He was beautiful, today. So cooperative!" was the reply from both the director and teacher.  Belac cried out to me "Mommy! You're here! I had a good day, today. I didn't hit anyone!"

Went to get Jake from his Mad Science Class. "Mom," he took something out of his bag, "this is for you." It was a box made out of popsicle sticks with a painted top.

"It's beautiful! Did you make this in Art? Is this for Mother's Day or something? Were you told to give it to your parent?"

"No. I just knew you would like it and I made it for you," he replied.

We came home. The kids did their homework at the kitchen table without complaint. There's "Wee Mail" at school. Belac wrote his friend Billy a letter to be delivered. I asked Jake if he wrote to anyone, yet, and he told me that he wrote Belac a letter at school. (I bit my lip. At his old school, I would have thought that was so sweet given his many other options. This time, I casually suggested someone else he could try writing to next time.) At dinner, Jake said, "you always make me food that I like and that means it's tasty!"  "Noodles taste so good," Belac added.

My husband came home, already knowing from my phone call that the boys had had good days and were demonstrating an unusual degree of thoughtfulness. He packed his bag and announced, "Let's go to Carvel before I leave for Boston tonight!"  The boys each chose ridiculous, toxic looking flavors and we all exchanged tastes. My husband smiled, kissed us good night and drove off. We went home and Belac ran around while Jake and I read about fire ants being decapitated by flies. I kissed them a million times when I tucked them in. My sweet boys!

Filling the Void

(Jake 11/12/09)

"I don't want my legacy to be raising Belac," I told my husband, "I am not a martyr and I don't want to become one."

"You need to do something for yourself," my husband agreed. "But what, you don't think that being a good mom, wife, teacher, pianist, friend counts for anything? What more do you want?"

"I want to change the world," I blurted out. After a split second of shocked silence, we both broke out into hysterical laughter. I know, it's like a little kid saying "I want to be President of the United States."

"Gimky," he reasoned with me, "I don't want to change the whole friggin' world. But if I can make a difference in my own small world or influence something positively, well that's something.  Maybe I need to be home and you need to be out there. But look, if you want to change the world, what's stopping you? Go out and do it. Are you trying to tell me that you're having a midlife crisis?"

I am an overachiever. And I do some of my best thinking and working when the chips are down and the odds are against me. The challenge gets me going. If someone says something cannot be done, it only makes me work even harder to prove them wrong.  I don't go down without a fight. My tenacity and people skills have helped me my entire life. "Where there is a will, there is a way" the old saying goes. BUT. I have met my match.  I really have, this time, and you know what I'm talking about.  I cannot get rid of this thing that has hold of my child. I cannot change his nature. And can I just say, it's damn exhausting.

I know I have other things. I teach a dozen pianists and a bunch of classes and play concerts 6-10 times a year. I have good friends. I am also a mom, a wife, a dog walker, a class parent, Cook, an event planner, the Controller, a negotiator, a realtor, someone who runs a mean vacuum cleaner, and now I am a blogger.... What more could I want? he asks. I am looking for something else to do. An easier fight, a fight to fight that ends happily ever after. Something, anything, to distract me from my inability to cure my son and to compensate for that void.

By the way, I think the label "autism" at upper right is about to explode!

Population

(Jake 11/11/09)

Jake appeared at breakfast, this morning, with his new Diary of a Wimpy Kid in his arm. He declared, "this book will help me with population." Huh?  After talking a little, I figured out that he thought this coveted book would help him be more popular at school.  Of course, we had the obvious discussion. I pointed out to him, you could share it, loan it to someone when you're done, read someone a joke from it... but making friends is not going to happen by virtue of just having something.

By the time we said good-bye at the playground, he told me. "I have my book and it's going to help me with population. It will get other kids' attention and I'm going to do something good with it." This statement made me suddenly sad and silent. Hasn't he been adjusting well?  He had a lot of friends at his old school and kids who wanted to be with him. I didn't realize that he might be having difficulties here.  Is he okay? "Look, Jake," I told him. "Even just one or two good friends is an amazing thing. Let's focus on making ONE good friend at school, okay...? So think about who you like being with and we'll invite him over."  He was quiet and looked at the school.  "You're new and it's a bigger school, so it's just going to take time for the kids to know you. You're smart, you're funny, and fun to be around," I declared, "but it's going to take time to get comfortable."

Welcome to Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

OPEN HOUSE

12:45 - I'm ready. The signs are up, balloons wave at every corner, and the cookies are fresh out of the oven. My i-pod is playing pretty music. The house looks and smells great. It's a dreary day, though, and I am not sure anyone will come. My husband should be here soon and together we will wait.

1:23 - My husband is off to get us coffee.

1:35 - My husband is heading to Jake's soccer practice. No point in both of us twiddling our thumbs here.

2:05 - Just showed the house to a Japanese-American couple. They asked good questions and carefully looked around. They were almost out the door before they wanted to check out the basement. I thought they were somewhat serious, but they declined to take any paperwork. Maybe they had a half hour to kill on their way somewhere.

2:28 - Waiting. It's now pouring outside.

2:59 - Pulled up the OPEN HOUSE sign and threw out the cookies. Though I ate about four of them, they were baked too long. Now waiting for a 3:15 showing.

3:10 - The 3:15 shows and I am at once skeptical. They're a tall, handsome couple driving a shiny, midsize Mercedes. It would be one thing if this were Greenwich, but this is a neighborhood of Honda/Subaru types who do their own yard work. I greet them with a big smile and happily show them around. But in the back of my mind I think: this is impossible! There's no master bath or central air. None of the bedrooms could accomodate a king sized bed. Most of all, it seems a bit indecent that the unattached garage, originally built for a horse, would be home to a Mercedes.

The lime green house

Sunny Patch is a walking town. There are sidewalks on every street in the village, mom and pop stores in the downtown area, and a Metro North train station. My kids walk to school and the library. I can go to the vet, post office, get my haircut, eat Indian, buy groceries, all without a car. I also recognize the same people on the street everyday and we exchange niceties. The lifestyle is social and extremely convenient, but it comes at a hefty price of course. Village housing is scarce, prices are astronomical and the taxes are downright scary. Whether we come away from our own house sale with enough equity or not, my husband and I agree that continuing to be renters is the right choice for us.

That said, there is a house in Sunny Patch that captures my imagination. I only noticed it a couple of weeks ago, though it sits right near the school. It's lime green, small,  and kind of sorry looking. I think it has a lot of potential. It's occupied, but a fixer upper. I know, what am I thinking? I am kind of handy, but my husband is not at all. It's also located on a main artery and there is a good amount of traffic there on weekdays because of the school across the street. Why would I possibly be interested in this place, you might be asking.

First of all, it's obviously not a million dollar house like others nearby, not even close. Second, it's in easy walking distance of everything, with designated "crosswalks" at every nearby intersection because of it's proximity to the schools. The location is anything but isolating. Third, the taxes have to be less on the house because of it's location and age. But even these three things are not compelling enough reasons to buy. It's all of that and the sizable garage-turned-apartment behind this house.

Look. Maybe Belac will go to MIT like his dad and one day become a rocket scientist. But I don't know that I won't also have to drive him to work everyday. I don't know if he will find a life partner or what is in store for his personal life.  He's going to be 7 years old in February and hopefully, he'll have the next 11 years to figure out how to get himself to school everyday, develop life skills, and make this community his own. Maybe he'll get a job in the city. Maybe he'll scoop ice cream in Sunny Patch, shelve books at the library, do data entry for the town, bag groceries. I don't know. But I think for someone like Belac, living as an adult in a town he grew up in (and in a small place like Sunny Patch) offers a certain security and many possibilities. And if true, I want it to be possible for my grown-up Belac to live in this wonderful but expensive place.

So I have these ideas, premature as they may be. First, I'd figure out how to buy that house, which is  currently not for sale. If money is tight, we could rent out the apartment for income while living in the house. Or the apartment could house my music studio, where I could give lessons for the next while and continue to grow my business. Later, it could be where Belac lives as an adult. He'd be independent but close enough for me to supervise as necessary. Even later, he could move into the house and rent out the apartment for income or vice versa. If we could pay the house off in our lifetime, the rental income would likely be enough to cover taxes on the property. Jake could help him figure it out.

Isn't it a good idea? Maybe I could even convince those owners to trade their fixer upper for our 'done' house just 10 miles away!

The lime green house is such a nothing house to probably everyone who passes by. There are quieter streets, bigger houses, houses set farther back, and places that are 'finished.' But in my mind and for what we need, this one is the best house in town.

Getting by

(Belac 11/09)

My husband is worried about his job. They let go of 40% of his company, last year, and there will be more cuts before year end. Our country is reportedly in recovery, but my husband's particular industry may need years to recover. Those who remain are fearful; morale is low and everyone is putting in extra time.

This morning, the director of a nursery school I work at told me that she and all of the teachers were suddenly called to attend a board meeting that day. (I am on contract.) She was beside herself nervous about what this could mean and was on the verge of tears. "My parents don't have college degrees, Gimky, but they somehow made it. I have a college degree and we (with husband and daughter) live with them. We can't afford not to." I caught up with a friend, today, who confided that she and her husband had a balance on the credit card and they were stuck and scared. And just when I thought I had heard enough in one day, I bumped into another person with another story. She was let go from her teaching position in June and her husband was just laid off. "Life is a party at my house," she remarked dryly.

My own family's reality is that we are living month to month in a rental as we try to sell our house, several towns away. We moved so that our boys could be in a more appropriate school district, particularly because my little one is on the autism spectrum and needs educational services he otherwise would not receive. I am grateful we could do this, but it's a little scary living on the edge as we are. These are riskier times. I have always been frugal and fairly resourceful, but this is for real now.

Jake

(Jake 11/10/09)

I know you're not supposed to compare your children, but sometimes I can't help it. My two boys could not be more different. It's almost as if they were conceived by different parents.

My older one is emotionally intelligent and takes things in stride. He makes friends everywhere he goes and knows how to make people feel comfortable. He is truly a gifted people person. He smiles easily, laughs with others, and jumps in and participates in activities.  He's sensitive, too. When I yell or am really upset with him about something, it affects him and he sometimes cries. He cares about other people's feelings and how they view him. Though confident in nature, he shies from outright competitiveness and needs a good amount of encouragement. Academically, he is pretty even across the board and does well in school.

My younger one has an extraordinary visual memory. He writes very well for his age, and is an advanced reader. He is extremely consistent and reliable. Every afternoon, without fail, he greets me with a huge smile and laugh, calls out "MOMMY!" from wherever he is, and comes running for a  bear hug.  He has the makings of a devoted friend and partner. His rigidity, however, also means that he has trouble brushing things off and tends to fall apart when things don't go his way. He has a good sense of humor and wonderment, but tends to be internally focused. It's hard for him to make friends, he misses a lot of social cues. Things are more black and white with him, making social interactions challenging. He gets lost in bigger gatherings or when there is a lot of noise, and tunes out. Getting him to participate in activities takes effort. Unlike his brother, when I yell, he pushes back. Compromise does not come easily.

Their contrasting personalities pose certain parental challenges...  Jake is the older, less squeaky wheel, so you know what happens. He had my undivided attention for the first 2 years and then my concerted effort to do right by him after my younger one's diagnosis. I hope it's enough to spare him the psychiatrist's couch later in life, and any feeling that he was not given enough by his mother.

A cloud, part II

Tonight, my husband insisted that Belac write down what he should and should not do.

A cloud

Whenever I see "Sunny Patch School" on my caller ID, my heart sinks. What is it this time?

It was the Asst. Principal, "Hi, how are you?" began the conversation.

Today, my Belac took his shoes off at circle time. He was told to put them back on and he wasn't happy.  So he went ahead and punched his teacher in the stomach and then proclaimed "I hate you."

I was absolutely appalled to hear this and silent.  "I am so sorry," was all I could say for at least a minute or two.

When brought to her office, he could not explain himself, though they felt confident he knew what he did was wrong and why.  "Should I suggest to him to stomp his foot when he gets angry?" I asked. "Or better to use his voice or words," she suggested, "we talked about that a lot."

He's 6 years old, small for his age and not very strong yet. But one day soon, he's going to be bigger and stronger. I cringe to imagine him as a 13 year old with problems managing his anger. Can we nip this in the bud? Please, dear God. Can this be just a passing cloud and not a warning of what's to come?

The sweetest thing

About to arrive at the Stamford station. Just heard that my husband, boys and mom are waiting for me. It's late and almost bedtime for the kids. My mom and husband delayed their dinner.

"You're ALL here?" I asked in bewilderment.

"We're all here and waiting at the curb," my husband confirmed. "We all wanted to come and get you!"

That is the sweetest thing!

Intermission

Going home for 18 hours between the dress and concert. I have had several long days of rehearsals and meals with friends. While fun and totally absorbing, I miss my boys. Nevermind that I didn't make it to see my aunt, that my cousins asked me to dinner and a really good friend had a free evening without her kids.... Even my mother and husband could not convince me to stay. I'm heading home.

Wish list

I am on a train to Bos. Using my pda to write.  No kids. No husband. Just a small bag (and my thumbs.) I traveled just like this years ago. Ate on the cheap, traveled w/o map or itinerary, saw friends at will. Now I am traveling not exactly for pleasure, but it might as well be for all its novelty. I admit this freedom makes me nostalgic for the time when I only had myself.  I am searching for something. Recently I have been feeling like something is missing. Do I sound like a midlife crisis in the making?

While at Juilliard, my mentor Albert Fuller had me write a 1-, 3- and 10-year plan. What are your goals? How are you going to get there? I have no idea what I wrote, anymore. I probably wanted an academic job, to get married, and have a house full of kids. 15 years later and going through this exercise, today, I wonder what dear Albert would say to me.

At the top of my list are now impossible things. Cure my child of autism, for one. Second, sell the darn house. The beyond-my-control like nature of my wishes make me sigh. 15 years ago the world was my oyster. I was excited and had no idea what amazing things were in store for me. Today I am in a much different position. I find myself trying to make the best of what I've got.