Table Talk

We sent the boys to put on their pjs as my husband and I lingered at the dinner table. Somehow we got onto the topic of what qualifies as a major life event. I cited the kids and Belac's challenges as being real events and challenges, but put a surgery I had 3 years ago in a separate, not life-altering category. He looked at me in a sort of disbelief. "Gimky. That was life-altering for me, and I can tell you that it was for your father, too."

"I know," I told him. "I remember when you all suddenly appeared in the middle of the night and  I heard my dad in the hallway, shouting on the phone. I worried I was dying and told my sister not to leave me."

"Gimky, it was a big deal even before that. Your father was very emotional during your surgery."

"What do you mean?" I asked. By then the news was good and they were almost certain it wasn't cancer.

"Gimky," he explained, " he held it together when the surgeon came but lost it afterward."

"My father was... crying? Are you sure...? Where was my mother?"

"Your mom was with the kids. Your father was crying," and with a little laugh, "in a way that a man cries when he's in the company of another man, silently and with restraint. Your surgery was major."

My husband. He had to take a seat in the middle of our wedding. Someone ran to fetch him juice and a friend found him a hard candy from the depths of her purse. We all chuckled with laughter, he most of all. My husband is not afraid to be himself. He says what's on his mind, he laughs at himself, he shows his emotions. What you see is what you get. But my FATHER. He's a pathologist, used to seeing all sorts of medical conditions. He's an immigrant from another world, strong and disciplined, creative and thoughtful in his own quiet way.  He's a still-waters-run-deep type, certainly not a mush ball in the all-American sense. To hear that he cried over me... I don't know, my eyes got moist thinking about it. I know what it's like to cry over a child and I'm sorry that I made him cry.

It's just a house

Moved a dining table and chairs into our old house, last night. My husband and I met after work. I brought kids and furniture, he picked up food.

We sat in the dining room for the first time in months. Jake asked if he could play out back, but later changed his mind, it was too dark. Belac observed, "I hear an echo!" He didn't visit his old room, this time.

I asked my husband, "do you feel weird being in the house like this?"

"No," he replied, "but it's kind of depressing that it's so empty." (We thought we had a renter when we took everything with us.)

After we finished eating, we shoved everything into a trash bag. I flicked on a few lights and we were gone in a flash.  Driving back to Sunny Patch, I realized that everyone in the family had clearly moved on from this place.  As they say, home is where the heart is.

Like mother, like son

(Belac 10/09)

The dog was shaved, today, due to a serious skin infection for reasons yet to be determined. He looks a little scary, like a hairless rat. I feel so sorry for him. There are several sections of red, swollen absesses on his body, and he has a cone on his head to prevent scratching.

I forgot to prepare the kids for his new appearance and was stunned to witness Belac's reaction. We weren't two steps into the house when he caught sight of the dog, closed his eyes and covered his ears. Then he dropped to the ground and hid under the dog's blanket on the floor. Don't tell me he's going to faint!  I brought him to the couch, where he buried his head in my lap. "I don't want to see Bailey," he told me, "he's hurt."

Okay...! So obviously Belac is my son. And a lot more like me than I ever thought.

Party's Over

I have a house to stage, music to learn, and a family I need to prepare before I leave for 5 days. (I have a performance out of town.)

I don't know why I yearn to have a more "official" kind of job when I clearly have enough on my plate.

Signing off for a couple of weeks.  If I don't return to Snowflake, it's not because it wasn't fun!

Peace to All, Gimky

Je ne sais quoi

Belac ran all the way to school, today. Jake dawdled and lagged far behind. The dog refused his walk.

Go figure.


ON SECOND THOUGHT, I think it's time for a haiku:

Belac ran to school

Jake dawdled, lag'd far behind

The dog would not walk.

Rain, rain, go away

(Belac 10/09)

I nudged the boys up, this morning, and told Jake to hurry. He forgot to do some homework, last night, and needed to finish it over breakfast.  He was assigned to use an "expensive" word to describe a character in his reading and write several supporting sentences.  As I packed his lunch, I saw that he had chosen an adjective for Harry Potter: pessimistic. I was skeptical. Wouldn't you call him brave? modest? sensitive? "Mom," he explained impatiently, "his family is mean and really mean to him! And he doesn't even live in a place with rooms, he lives in the stairs, in a cupboard!  I think Harry Potter thinks his life is not going to go well." I kind of stopped in my tracks. When and how did this happen?  My little Jake has been busy growing up, right under my very nose.

Contrast this to Belac's morning. He buried himself in his covers, "I want a short day in school, I don't want to go to school."  I dragged him through his routine while reassuring him. It was raining and we donned our gear for the walk to school. Jake led the way, 5 paces ahead. I pushed Belac along as he cried the entire trip. He told me, "I'm not saying ANYTHING at school!"  Half way there, he upped the ante, "and I will RUN AWAY from Hebrew School!"  What? I pulled him off the sidewalk and warned him. "If you do that, there will be no Nintendo DS for one month. Do you hear me? I will pick you up early if you want, but there is absolutely NO RUNNING AWAY."

We got to school. "I will do just one thing in Hebrew School, one short thing." I reminded him that I would pick him up early but there would be NO RUNNING AWAY!  Is running away good? I ask. (No.) What will happen if you run away? (No D.S.) And you might get hurt, too. Will mommy be upset? (Yes.) Are you going to run away? (No.)

I jogged home to walk the dog before more downpour. Did I mention, he's biting himself and has recently punctured skin in 2 places. I have a new vet who thinks that it's behavioral and not a skin allergy that's irritating him. Great. Just what I need, a dog who needs therapy or behavior training or a vet that is convinced of it, I don't know which is worse.  I walked around the block and the dog did his business. But just as we were returning home and crossing a busy intersection, I pulled on the leash and there was resistance. I turned to see the dog squatting and crapping in the middle of the road. Of course, as I search my pockets, I'm out of bags. I pulled a wet flier from a street lamp and used it to clean up. A driver gave me a thumbs up.

Joining the Team

(Belac 10/09)

Belac had his first soccer class, yesterday.  He was teamed up with 2 boys with special needs. One boy was fairly talkative, pretty related, and an initiator. He was also a toe walker and got a little lost when there was too much language. The other child was non-verbal, a wanderer, a good kicker, and needed his dad to shadow him. I would describe Belac as a follower and imitator, able to participate in all of the activities, but having difficulties answering any questions and needing a good amount of redirection.

My sister Krista was in town, and we pulled up some chairs on the sideline to watch.  I shook hands with a couple of parents and introduced myself. My sister was quiet and observed. A few times, the parents all cheered loudly when each child had an opportunity to take turns kicking a goal.  I can tell you with certainty, that parents of special needs kids are the nicest, most supportive, non-judgmental people.

As we left the class, Krista told me what an eye opener this experience was for her. She never had the opportunity (even as a medical doctor) to be exposed to or spend any significant time with a child with needs, especially like the non-verbal boy.

"It IS interesting, isn't it?" I agreed, "and it can be sad, too."

Take the father of the non-verbal boy. He was friendly, quiet, well-dressed. Maybe he was an academic, complete with the tortoise shell glasses and corduroy pants. Maybe in his day job people do things for him and run around him. Here, his hands were full. He chased after his son, tried to keep him in the room and made excruciating efforts to get him to participate.  At the end of the class, I overheard the father talking to the coach, who replied "Don't worry, we'll work with him. It will be fine."  Maybe the father was worried the child would not be able to make it in the class.  I understand this very well.

The first time I brought Belac to play baseball at the Miracle League, 2 years ago, I was overwhelmed by everything I saw. Some kids sat in wheelchairs and had obvious physical impairments. Their parents helped them bat and pushed them to 1st base. Every parent there had a child with some sort of developmental challenge. People cheered their heads off, parents were rooting for their kids and everyone else's. I hid in the bleachers and could not stop sobbing, feeling sorry for all of us parents, looking for the tiniest, most miniscule thing to celebrate.  My life plan hadn't included this, I wasn't supposed to be there.

Were it not for Belac, I would have as limited exposure to all of this as Krista. I might have even been smug in that other life. Maybe I would have thought that I was superior or had superior genes. I might have patted myself on the back for being a non-smoker, or not having ever taken drugs, or not having been any kind of risk taker. But here I am, today, even having done everything 'right.'  And those 'other' people now include me and my family. That was my eye opener, two years ago. Now, as I sit in Belac's soccer class, I feel like I am among kindred spirits.

Sky is Blue, whatcha gonna do?

(Belac 10/09)

It's the perfect day to sell a house.  It's a breezy Sunday, the sky is blue and the sun is shining.  We haven't had many Sundays like this, I can tell you. And I only know that because I've been making our house available every week end since Spring and showing it as my own agent since August.

Selling a house is like dating, and though it has been an interesting and colorful experience, I'd like for someone to be swept off their feet already and be done with it.  For every appointment, I take care to dress in stylish but non-descript clothes. I hand out paperwork and photos of the house. I arrive early to clean and tend to the flowers out front. I smile easily, but not too much. I try to be friendly but give visitors space. I make every effort to develop a good rapport with buyer's agents, some of whom have come back for repeat visits. I ask for feedback all of the time and I make sure every minor problem is repaired immediately. It's a balancing act, putting your best foot forward without shoving it in anyone's face and just doing it again and again until the right buyer comes along.

Most of the showings have been serious ones. The visitors are usually couples that have done their research, come with measuring tapes, and spend half their time in the basement with the mechanicals. Others are like the woman this morning. I am certain she immediately recognized the house was not for her but felt obliged to get through the main course. She didn't ask one question, skipped the basement, and was in and out in 4 minutes. What can you do but smile, even if it's a little forced, and send them off on their merry way?

Though we have consistently received positive feed back, we haven't received one offer on the house, not even a much anticipated, ridiculous low ball offer. Over the months, I've met several couples who claim to be very interested in the house. But I believe there is really just one couple among them that is truly serious. It's a couple in their late 30s without children. They first visited 6 weeks ago and spent 45 minutes in the house. Then, the husband and I visited every tree in the yard together. What kind of tree is it and when does it bloom? He really loved the garden and couldn't stop admiring it. Their realtor later told me that our house has been the measuring stick of every house they've seen since. And yesterday, the wife came by herself. She lingered in every room. Before she left, she told me that the one thing she wanted - but that our house lacked - was a fireplace. "Did you ever think about installing one?" I was miraculously prepared to answer what installing a fireplace would require and where it might go.

I admit to feeling a little desperate. I suggested to my husband, today, that we should sweeten the deal for this particular couple. Maybe we could offer to purchase them a wood-burning stove, maybe we could preemptively drop the price for them, something to compel them. But in the end, we ultimately agreed. We don't want to appear too eager or desperate. Plus, there's a long path between an offer and closing, and it's premature to start showing our cards. Let the house speak for itself, I dutifully tell myself, it's a good house. Like a cool cucumber and a self-respecting girl with many options, I sit back and wait.

What's in a Name?

When Belac was just 2-1/2 years old, my mother-in-law thought something might be fishy. Precocious as Belac was with numbers and letters, she saw that it was very hard to get his attention. "Have you gotten his hearing tested?" she asked.  I just thought he was a mini Einstein, absorbed with his own sophisticated observations with things. There was no doubt in my mind that he was special, but little did I know that he would also be special needs.

The evaluation process was an eye opener. My husband and I answered hundreds of questions about Belac's behaviors and our social history. With extreme reluctance, I quickly began realizing that there might be a problem. We used to not be able to get out of the house unless the screen door shut a certain way and when it didn't, Belac could not be consoled. I couldn't get him through the front door of the nursery school without his running his eye a certain way on a fancy heating grate, and he had to do it over and over before I dragged him away, kicking and screaming.  He could go through an entire nursery school class appearing uninterested and behaving as if he were deaf.  I also realized, for the first time, that despite his knowing I was "mommy" and having said that word before, he never used it to get my attention. He had a normal vocabulary but wasn't using it communicatively. He was extremely echolalic. He perseverated on things and could spin the wheels of a car forever. When I pointed at something, he'd look at my hand and not what I was pointing at. And  there was also one of the most telling things that developed around this age of 2: he very rarely made eye contact and was always stimming, looking out of the corner of his eye while moving his head. I will never forget those early, nightmarish ABA trials "Look at me, look at me..." with the teacher waving an M & M between her eyes.

Belac will be 7 years old in February. In the eyes of the state, since age 2, he has always been autistic. Our former school district conducted their own evaluations and also classified him as autistic. We saw two neurologists early on who diagnosed autism. More recent evaluations by the Neuropsychiatry Department at Columbia Presbyterian Hospital resulted in a more specific diagnosis of 'high functioning, atypical autism.'  But basically, the evaluations always resulted in the same diagnosis.  Two years have passed now, and in light of certain developments I am about to explain, I'd love to have Belac reevaluated. If I had a few thousand dollars to spare, I'd have Columbia Presbyterian have another look at Belac. I wonder if they'd say anything different, now.

We're now in a new school district. The IEP was designed and implemented weeks ago, but we just reconvened briefly to change Belac's Autism classification to "Other Learning Impaired."  Autistic children are a kind of protected class in NY and the state dictates how many hours of services and what kind of services a child must receive. With the autism classification, Belac's IEP would be mandated by the state and he'd be required to receive certain services that we agreed would not appropriate for him. His learning environment this year is less restrictive than a typical autistic child's. He is spending most of his day with neuro-typicals and neuro-typicals with general resource needs, albeit with a full-time aide. His current IEP could not be approved with an autism classification and needed to be changed. (Addressing my concern, they did assure me they could always reclassify Belac as autistic if necessary.)

I signed off on the new classification without ceremony. I am concerned about my son getting what he needs, less about what his label is or how he is classified. Maybe someone could take this opportunity to claim that my son has 'recovered' or is not autistic.  But the fact is, no doctor or teacher or therapist has dared to suggest any such thing and I wouldn't believe it myself. (I'd like more than anything to be personally proven wrong, but I am more of the belief that autism can be a successfully managed condition and not exactly cured.) The school psychologist was also careful to iterate that while autism, in their opinion, most accurately described Belac's condition, it was the classification of autism in dispute. In Belac's case, the classification would prevent him from getting the less restrictive environment we agreed he would benefit from. (If you're a bit of a cynic, like me, I also want to point out that this decision was not motivated by cost savings. Belac's full-time aide costs as much, if not more, than giving him a self-contained, special ed class. I also think the district would have received more state funding with his autism classification.)

So this is a first. Belac is now 'Other Learning Impaired' in Sunny Patch. He continues to have an IEP jam-packed with Speech, OT, Social Skills, General Resource, Direct Instruction, and a full-time Aide.  His paperwork still includes his diagnosis of autism by 3 independent neurologists. His IEP from last year has a bold AUTISM printed on the cover page. At home, we continue the way we always have in trying to get him stimulated and engaged by all around him. And though I know full well just how arbitrary these labels can be assigned and that they change nothing about who my son really is (that which we call a rose) and how we continue to work with him, I admit I like the sound of this.  'Other Learning Impaired." What a wonderful-sounding, generic, catch-all classification.

Play Date

(Belac 10/09)

Belac is having his first solo play date in Sunny Patch. We walked home hand-in-hand with the other boy, who has no issues with relatedness but has other disabilities due to a condition that required brain surgery. They seem to be a good pair that balance each other out. The child is very active, high affect, and a little in-your-face about things. Belac is more low affect and introverted.

It was eye-opening for me to see how much Belac wanted to engage with this child. The boy talked constantly as we walked home and Belac listened and chimed in at times. "My dad drives a Honda, too."  "I have a DS, too." "My brother has a red DS, too."  As we crossed the street, they held hands. Belac called out "hold on tight!" The boy walked on a wall, Belac walked on the wall, the boy lept up some stairs and jumped, Belac did the same. When asked if our house was coming up yet, Belac pointed out: "This is 340 and our house is 430."  Now we are home and the boys are upstairs building something.

Now they are down here.  Here's the conversation:

B: If we are tall like trees, we will be giants.

Boy: We will be taller than everyone.

B: People will get scared.

Now they are back upstairs again. They left to go "camping," which means they're taking cover under a blanket draped over the couch. They seem to be having fun. Belac is motivated to stay by this kid's side, though he's not completely engaged. Is it possible that Belac desires company despite his tendency to be on his own? I think he enjoys this boy's directives. I hear the boy rummaging through every game and drawer and pulling everything off the shelves up there. The dumbbells crashed down earlier and I almost had a heart attack until I saw that everyone was okay. The house is going to be a disaster in short time, but for experiences like this I would gladly live in a pig stye. Today, I am overjoyed that Belac seems to have made a friend!

The Big 4-0

(Belac 10/09)

I'm going to be 40 in February. It's really not a big deal. I have been showing signs of this impending milestone for ages. I'm going grey and mushy around the waist. The other day, I pulled on my 15 year old cowboy boots and for the first time, they didn't feel comfortable enough to wear all day.

I've never been great about birthdays. Unless it's my child's, I'm the kind of person who is terrible about remembering them, buying presents or sending cards. My husband shares this same tendency and it's always been fine with me. This time around, though, he has the idea that he's going to throw me a party. I brushed it off. You're going to throw me a party? That's ridiculous! But by the second or third mention of it, he actually got me to throw some names out there. Off the top of my head, I named all sorts of people I'd want to see, some of whom I haven't seen in years and others he has never met. "Who are these people?" he asked in bewilderment. I laughed. Yes, who are these people?

I didn't mention anyone I work with, nor did I bother to name any of our couple friends. You know who these people are? They are people I really care about but hardly, if ever, see. It includes a girl I went to music school with, who regularly made me pee in my pants for all her chutzpah. Good times. I haven't seen her in 4 years.  A mom who shares my name. She knows everyone and everything and shares. Babs, the gal who's going to punch the neurologist's wife for me, she's just become a city girl again. An opera singer in Leipzig and a conductor in Weisbaden. My dear Olivia! A large rat once crossed our path in front of my old building and I never freaked out or laughed so hard in my life.  Ella, we have glorious 45 second conversations before we're interrupted by kids, life, and work and have to hang up. A couple who started a restaurant in the city, we lost touch after it boarded up. Sally, my friend from childhood. T. H., his father and mine were school buddies. My brother-in-law's wife, an inspiration. A talented high school friend who I only recently discovered works in a nearby museum. And definitely S. Our younger boys often played together when they were munchkins, long before either of us suspected or knew that they'd each fulfill the criteria for autism. (That's a story for another time, but it's a pretty weird coincidence I sometimes think.)

It's an eclectic bunch of amazing people. They're all over the globe. Some are married, some are single, each is a different color, some have kids, some don't.... though I'm pretty sure they're all Democrats! But seriously. These people are creative and sharp, funny, prone to thinking outside of the box. There's no BS'ing any of them.... I think they are what you call true friends and what a total blast it would be to see them.

Talking about the A-Word

(Belac 10/09)

I know what my husband would think if he had the time or inclination to read this blog. He'd be concerned that people would feel they had to tip toe around us for fear of saying or doing the wrong thing. I think I feel the same way, as I am not inclined to share this blog with most people we know.

That said, I recently had a long conversation with my mother-in-law. We talked about Belac and a lot of what has already been published here. It occurred to me that I could just share this link with her, she definitely has the capacity and interest to understand all of this. But as much as I wanted to share, I couldn't bring myself to do it. Her friends would surely end up reading this blog and I'm not comfortable with that.

One of her friends sends me autism fliers with post-it notes that say "Hi Gimky, this so-and-so or such-and-such I heard about is amazing!" Or she'll write an email out of the blue with a phone number of some person or program in Montreal. (By the way, I live 5 hours away in metro NY.) Of course, she means well. But she's never had a real conversation with me! She's never spent any time with my son! I don't at all know what she understands about autism. But what is obvious, is that she doesn't scratch below the surface and has no filter. In her mind, Autism = something she has to send Gimky. It means she's sending stuff about prostate cancer to someone who has breast cancer. How about just a "Hi, how's it going?" now and again. That would be so much nicer and normal.

Another of her friends pulls me aside at every holiday and whispers in my ear with the most wonder-filled voice as if he's witnessing the most incredible thing in the world: "Gimky, Belac is sooooo much better! He's talking so well. I mean, he's just soooooo improved! He's really going to be just fine...." etc. etc. I know, he's being nice. He's harmless. But this guy would have never noticed anything amiss with Belac unless someone told him. From the sound of his excited banter about Belac's miraculous improvement, you'd think Belac was once a drooling, speechless boy that was banging his head against the wall. I smile back at him as he drapes his arm around my shoulder and continues on with high affect and not much substance. He's just being nice, I tell myself, but I can't help thinking he wants me to hang on to his every word.

I like talking to people and hearing their stories. I don't necessarily shy away from controversial topics and have even learned to patiently listen to people I don't agree with. But here is what I absolutely detest when it comes to autism as a topic: blatant disregard for science, facts, and plain-old common sense.

If you make a recommendation, try to influence me in any way, or make some statement about autism or autism as it relates to me personally, I offer up the following guidelines. You better not be screaming (Jenny McCarthy), getting a million dollar advance on a book yet to be written (Rupert Isaacson), gushing or ranting excessively, flaunting your child's recovery, or passing along bad or subjective information as truth. You better be able to answer questions substantially, if you are an expert, and at least minimally, if you feel something is worthy enough to pass along. I also might trust you more if you don't stand to gain fortune and fame from autism and if you take extra measures to protect your family's privacy (Catherine Maurice, Roy Grinker, John Travolta), and make the effort to respect mine. Insecurity, anxiety, naivete, occasional irrational behavior, being emotional and just not knowing better or anything for that matter - it's really all normal for anyone in unfamiliar territory and I empathize and have patience. But for sloppiness, flakiness, and belligerence as it applies to this subject, I have zero tolerance and find very little excuse for.

Reading this over, I laugh. It's too much to ask for, isn't it? Who would dare engage with me knowing now that their head might get bitten off? But never fear, I'm not made of sugar (most of the time ) and we have plenty of other things to talk about. I really like the shoes you're wearing, by the way, and your hair looks great! And that crazy snow, last week, could you believe it?

For Sale By Owner

I am selling a house. I get calls every other day. I meet people at the house 3-4 times a week. Anyone want a picture perfect house in lower Westchester? It's a rocking chair colonial from 1902 that has been entirely updated. There are high ceilings and hardwood floors. It's a short walk to the train station and a 35 minute commute to Grand Central. The house is clean and bright. There is a 200 year old White Oak with a swing out back. We've dropped the price dramatically, making it pretty much the best bargain in town. But I know why it's not selling. There is no way around it: the school district sucks.

It would be a great house for a divorcee whose children live in one of several bordering towns with high performing school districts. It would be great for a couple with no plans for kids, though not so much for down-sizing, old-timers because of the stairs. But for a young family with little kids? They come by to visit in droves, oooh and ahhh, and then proceed to sit on the fence in the growing company of previous visitors. At last count, there were 4 couples with our house on their short list.

Any responsible family who buys this house has to know they can afford private school, since there is no strong public school option. We used to think we could afford the package, once upon a time, but that was before we found out that one of my kids has special needs. And now the economy has taken a down turn. What young family, today, really knows they can afford private school in addition to a house? Even a young couple without children (profiles of the 2 couples who came, today) would be smart to have their doubts. Do they really want to face the possibility of moving in 6 years when their child begins kindergarten? Wouldn't it be smarter to get a deal in a better school district during this time when people are so desperate to sell?

This is the tough position we are in with the house. We are bracing ourselves for a big loss but still have no official taker.

I also took a different tactic, this week, when asked why we moved. This time I did not vaguely hint to moving because of my child with needs. I simply told visitors that we moved "north" to be closer to family. I feel okay about saying this because there is some truth in the statement: we are now 30 minutes closer to my husband's parents in Montreal... five hours away!

Star of Photo Booth

Belac has made hundreds of videos on Photo Booth. The computer is always on and when the desire strikes, he'll run over and load up the program. I love all of his clips for what they show. For me, they're like a little window into his mind. He is creative and sweet, and appears happy. He can be charming and quite spontaneous in the clips. He has mastered all of the features of the program and experiments with the visuals. You can also see that he is able to communicate pretty well at times and why - to the unassuming eye - he can kind of pass as a not-too-unusual-person in certain situations. He also derives great enjoyment communicating to some unknown audience. (Hm, sounds like someone I know....)

What you wouldn't know from seeing each clip in isolation, however, is that many of them are almost identical, give or take a special visual effect. He can be very scripted. He has recorded himself singing all of the Noggin Songs on numerous occasions, and imitates the crooning and percussion background with brilliant precision. This video making activity is also all the more fun for him because it does not focus on his very weakness: interaction with his peers. These are monologues. If he were actually interacting with someone, you'd more easily recognize his challenges. In trying to achieve some sort of reciprocity, he would need to focus outwardly, at least intermittently, understand the cues of another person, make use of receptive language skills, and exercise more flexibility.

Given how much he loves this medium, I can see how this could be a useful teaching tool if I recorded him in his interactions.

Making Nice in Sunny Patch

Brought Belac to school, this rainy morning. This time, we went through the doors and looked obediently for his Aide before proceeding further. She was waiting for us near the monitor's desk. "Hello, hello!" we called out to each other. It was his Aide's birthday and she also wanted a hug from him. "We've been having some really good days at school, Gimky, so let's just keep our fingers crossed!" I gave Belac a high-five and they were off, leaving me standing next to the monitor from yesterday.

At that very moment, the monitor asked a passing kid, "Where are you going? Aren't you supposed to go the other way?"

I turned to her. "You have quite a job keeping track of everyone. I just want to say thank you."

"We love your son and just want him to be safe," she explained.

"I really appreciate it," I replied.

Her use of the word 'love' was probably an overstatement, but it was kind and spontaneous and I was glad for the exchange. Unlike yesterday, I left school feeling like we're on the same team.

Jake's Hill

(Jake 10/09)

One day I used to have a house that had a hill in the backyard. When it was winter and the snow turned to ice I would throw on my snow gear and go out. I would climb up the ice hill and get my new circle sled, which was small, fast, strong and invincible. I would slide down and crash into the fense.

Ka-bam!

Crak!

Ka-boom!

(10/21: Actually, Jake just brought home the draft the teacher read to me the other day)

(Jake 10/09)

One day I used to have a house with a hill in the backyard and when it is winter it always looked like  a mountain of marshmellaos and the snow turned to ice. I would put on my snow suit, mittens, hat, and scarf and I would climb up the ice hill and get my new circle sled which was small, fast, strong and invincible. I would slide down and crash into the fense. Boom! Ka-bam! Ka-boom! Crash! Crak! Crash! It was real fun so I went to do it again and again.

Finding Home

(Belac 10/09)

I know why my son likes to be at home. He plays dominoes, he proudly shows everyone the pictures he draws, he loves making silly videos on Photo Booth, he frolics with his brother and chases the dog. He can just be himself, home is a safe place. Fine. That also means that he hums constantly, he flaps his hands at times, he wanders back and forth, and can be disengaged from his surroundings. Nonetheless, he has a family that is interested in everything he does, we're patient with him for the most part, we get his humor, and he clearly knows and feels that we love him. It's no surprise, then, that when we leave the house, the pressure is on.

We walk to school. And as we walk, I talk to him about his day and what will happen and what special there will be. I remind him that he wanted hot lunch which means he's going to get a hot dog. And Remember! There's no screaming at school! Some days I suggest that he could thumb wrestle or play Rock-Paper-Scissors with some of the boys while waiting for school to open or that he could think about who he wants to invite for a play date, and on and on....

We arrived to an empty playground, this morning. It was chilly out, so the kids would be waiting inside. Parents kissed their kids good-bye and watched them enter the school themselves. I turned to Jake, "Maybe Belac will go in with you. Could you hold his hand and try taking him in?" To which he replied with a sigh, "Mom...." "Go on, sweetie pie," I told him, "have a great day!"

Belac and I entered the doors and the kids were streaming in two directions. Younger grades to the library, older grades to the gym. Belac's Aide was nowhere to be seen, but Belac was already holding hands with a buddy on the way to the library. I watched as they walked down the hall. The Monitor stopped him and came back to me "Uh. Where is he going?" "To the library, right? That's where he has to go?" With a wave of her finger, she said "He cannot go by himself." "Well, I'll take him, no problem." "No, no, no," she waved her finger, this time closer to my face, "you can't [for security reasons]!" Another aide was nearby and offered to take Belac and they were off.

Whenever I am spoken to like this and it has something to do with my child, I always keep my mouth shut. "Who in the hell do you think you are?" I sometimes say in my head, but I never hint at these thoughts. It's never productive to give back attitude at these moments and I usually take an apologetic approach. I also want to reduce any risk that anyone would take anything out on my child. But look, I know. This woman probably has my best interest at heart, she doesn't want something to happen to my kid. And if my kid gets lost on her clock, she's in trouble. And she has her very legitimate reasons to be frustrated with me, too: what kind of mom lets her kid walk down the hall unattended when he just 2 weeks ago ran away from school? I really get it. Nonetheless, there are so many ways to talk to people and even talk to them with authority and firmness, which don't involve waving a finger in someone's face, talking as if that person is a dog, and then turning your back without further acknowledgment. I left without a word, unusual for me because I always like to smooth things over.

In case you think that I am so strong and together, as I can seem when I presumptuously dole out advice as someone who claims to have 'been there,' I should clarify that I am not always this way. I struggle with the 'here,' everyday. I try to do the right thing and not care too much about what other people think. But even despite how far I've come, the stern yet arguably reasonable actions of a hall monitor sent me home, today, licking my wounds.

Waving

We spent the long week end in Montreal visiting family. We moseyed around Old Montreal, a charming neighborhood filled with galleries and coffee houses on cobble-stoned streets. On a cold Sunday morning, our family of four walked in twos along the skinny, deserted sidewalks. At one point, we passed a restaurant, where each window framed a pair of people sitting at cloth-covered tables. I looked down at Belac in just enough time to see him wave across the street and call out "Hello!!" I smiled at the sight and saw a couple in a window wave back. I also stopped to wave and exchanged smiles with the couple. We continued walking to the end of the block, where Belac stopped to wave at yet more strangers. "Hello!!" he exclaimed. Another table waved back, all smiles.

As we continued on, I wondered about this. If we were dirty and looked emaciated and hungry, surely they would have ignored us. But what if I weighed 250 lbs. and wore ill-fitting clothes? What if I had a nose ring and my hair was dyed and shaved? Would these strangers have been so eager to wave back? What if Belac was 10 years old or 18? Or 40 and without his mom at his side to soften the effect?

As it was, Belac was dressed in a hooded sweatshirt with athletic pants. He wore sneakers that light up when he runs. He's little for 6-1/2 and could pass as a 4-year old, especially since his hand was being held by his mother, who appeared nice and normal 'enough.' We were as benign a sight as ever. Belac was happy and delighted at the attention and I was, too. And it's at times like these, that I can't help but wish we could remain at this age forever.

Realizations

(Belac 10/09)

Out of respect for my friend's privacy, I have deleted her story which I previously published at "Keeping Face on Facebook." Though she is unaware of this blog's existence and was given a pseudonym, I realize that including her in my story without her permission was a violation of her privacy and our years of friendship.

I also wanted to mention that I've figured out, a little better, what I am doing here on blogger.

I am definitely not looking for personal recognition or sympathy. But what I am seeking is your kindness towards my child. It probably sounds kind of out-there and goody-two-shoes-ish, but it's the truth. I will likely leave this earth before my son. In the meantime, I am trying to give him and teach him everything he needs to be okay. But when I'm not around to protect him or translate his actions for the world around him, I need your help. It really doesn't matter if you don't know what to do, I don't know what I'm doing half the time, either. But maybe by telling our story, a person like Belac will seem a little less strange and a little more familiar, and you won't be as hesitant about lending him a hand.

Telling the Truth

(Belac 9/25/09)

I went to pick up my boys from after school care. The Director was waiting for me. My God, does it ever stop? She pulled me aside and dove right in. "Belac hit a child today, I mean hard. When we asked him why he did this, he said it was because the boy hurt him. But, we didn't see anyone hurt Belac and none of the teachers did either and the boy said he didn't do anything to Belac."

I told her. "I am so sorry! There's no excuse for that behavior. But that said, if he said someone hurt him, then I believe someone hurt him. Belac is a truthful child."

"We didn't see anyone hurt him, " she repeated.

"But that doesn't mean that it didn't happen, " I explained. "It could have happened 5 minutes before on the playground. It could have been that this kid brushed up against Belac by accident. Then again, the kid could really have done something and we didn't see it. I am so sorry Belac hit this kid. I don't at all dispute this and it's wrong. But I do believe my son when he says someone hurt him, he doesn't make stuff up."

I went and found Belac and dropped to my knee. First came the stern "You never hit anyone for any reason, do you understand? Always use your words. If you have a problem, who do you go to?" I pointed to the Director and waited for him to answer.

"Now tell me," I continued, "Why did you hurt this boy?"

"He hurt me" he whispered, as he looked down and pointed at himself.

"Look at me. Tell me, how did he hurt you?"

"I don't know" came the answer after a long pause, while he kept looking at his feet.

"Look at me, Belac. Tell me right now. How did he hurt you?" I insisted.

There was silence.

"He stepped on my fingers. He hurt me" he said, pointing to the 4 fingers of his left hand and then started to cry.

Okay! Now we were getting somewhere. I took his hand and hugged him as we talked a little more.

"Did he do it on purpose or by accident?"

"By accident" he replied.

So you know what must have happened? They were in circle time on the rug. The boy next to him stood up first and stood on his fingers by accident. (The reason why no one saw anything unusual.) And Belac, who was upset about this because it must have hurt, went ahead and hurt him back.

The Director said to me "You are really good with him."

"I didn't start out this way," I told her, "I had to learn."

We talked about some stuff. She had found out from someone that I was a music teacher and that I had gone to Juilliard. She asked me if we could sit down and talk about my teaching a class, possibly on Tuesdays. (Sunday is the designated day for special needs classes so I knew she was wanting a typical class.) "I'd love to" I said, but here was my catch, "but I want an after-school class for kids like Belac who otherwise have limited opportunities." "I'm not sure we could get enough kids [for a special needs class]" she told me. Is she kidding me? "Don't worry," I assured her, "we'll have kids."

As I left the center with my boys in tow, she put her arm on my shoulder. "I don't want you to think that your child is the only one who has ever hit another child." I knew that. But maybe she should remember that the next time she's waiting to tell me something about Belac. Was it my imagination or was she being a whole lot more compassionate knowing that she's going to get music?

Something to Cry about

I met with Jake's school teacher at 7:45, this morning. It's a few weeks into a new year in a new school, and I just wanted to see how things were going. Everything was pretty much where it should be: his reading fluency could use some practice, his reading level was assessed at kind of where it should be.... Fine, good... I murmured, nothing we couldn't work on. Then, before I left, his teacher went to find Jake's writing journal. She was excited to show me something he had written a few days ago.

She turned to the page and began reading aloud, "I used to have a house with a hill and I used to go on it everyday." I came to full attention. I felt my eyes get moist. This teacher is going to think I am crazy. She read on, "I had a red circle sled and it went fast. If you went to the very top of the hill and farther, you could slide all the way down to the fence. I loved this." In essence, he had written a love letter. By page end, I was wiping away tears that had trickled silently down my cheeks. "It's beautiful, right?" she said to me, "I thought so, too, and read it to the class."

You know what's crazy? Belac ran away from school and caused a public fiasco on Monday. Did I cry? No. Last week, he got kicked out of Hip Hop and I understand he might not make it in religious school, either. Did I cry? No. Every month, we dole out thousands of dollars for the empty house with the lovely hill and eat right into our future. We can't sell that house fast enough and may never live in such a place again. Do I cry? Do I cry about any of this? No, not a single tear.

Anxiety

Last week end, our family went to a party. I got chatty with a woman there, who described a condition resulting from the removal of her cancerous lymph nodes. She showed me that her one arm was doubly larger than the other and explained why. She described in detail her pain but also her gratitude that she still had use of this arm. I was already sitting, but could feel my back perspiring and my face get warm. I wished she would hold off on the details, I was feeling a little ill.

Over the summer, Jake had a relatively routine surgical procedure to remove an extra tooth from his soft palate. It was preventing his baby teeth from falling out. At the consultation, I mentioned to the surgeon that I was practically the only person in my family who wasn't a medical doctor or health care professional. Knowing my husband could not be at the surgery in my stead, I joked that maybe I should get general anesthesia along with Jake. "You'll be fine" said the surgeon. Little did he know, that they would later lay me in Jake's hospital bed and strap an oxygen mask to my face.

These kinds of stories, there must be at least a hundred, are endearingly exchanged by members of my family. Thank God she's not in medicine! they exclaim with a roll of their eyes. My good friends give me the rub, too. And I laugh and laugh hard, because it really is truly a ridiculous quirk of mine. (Who else faints at seeing someone else get their ears pierced?) I am pretty confident, easygoing, and not generally nervous. I have a positive outlook. I don't think you would necessarily see me as someone with the ability to keel over and pass out so easily.

What is my problem? Is it anxiety? I would have never used that word, before, to describe this tendency of mine. Take Jake's surgery. I wasn't particularly concerned about anything and slept well the night before. I sat and kissed Jake while they gave him his IV, making small talk with the nurses. While in surgery, I was busy reading magazines in the waiting room. I made a phone call to make sure Belac was fine with the sitter. I was not fretting or consciously diverting my attention from anything. I knew that Jake was probably fine and would most likely be fine and really was not worried. But it was after surgery that I had my problem. His room was hot and dark. There was a fan blowing and there was my little kid laying in a big bed speaking gibberish. "Hi Jake," I said, stroking his hair. "Mom, you look like an alien. You have 4 eyes," he kept saying to me, as his eyes twitched back and forth. It was all normal stuff, I reminded myself. I truly knew that this was all normal but felt my whole body break into a sweat. I told the nurse I had to sit down and before I could help it, I was on the ground.

I never had lymph nodes removed or such a swollen arm, but could easily imagine how painful it was. I know what it's like to be disoriented and uncomfortable after surgery. I have intense empathy for physical pain and discomfort. Belac's challenges, however, were always held more at arm's length. I kind of dismissed them as something so foreign and not mine. After all, I don't know what it's like to not want to talk to or be with people. I don't know what it's like to be so rigid that my day would be ruined if something didn't go just the way I wanted. But it's not really fair of me, now is it? Because if I am truly honest with myself, I do have something, an idiosyncrasy, something I can't seem to help because of the way I am wired. And I know that simply willing myself to not have a physiological reaction to someone else's physical pain has not successfully prevented my body from overreacting. No amount of someone telling me to 'snap out of it' has helped when I start to have that feeling. And come to realize it, I'd probably lose my mind if I had people telling me to be just like everyone else all of the time.

Over the week end, I read a NYTimes magazine article about anxiety: http://www.nytimes.com/2009/10/04/magazine/04anxiety-t.html?scp=3&sq=anxiety&st=cse. A point was made there that the best fit for high reactive babies were moms who were sensitive but set firm limits. I quote: Sometimes, of course, there's a fine line between firm and hardhearted and a fine line between supportive and intrusive. This makes it especially tough to turn research findings... into clear guidance on how best to care for a fretful child. Exactly!

As a parent, setting limits has always been the easier task for me. But truly understanding Belac's challenges and being sensitive to them from meaningful, relatable personal experience has often eluded me. Maybe recognizing my anxiety as not such a far-out experience from my son's will help me better address the being sensitive part of the prescription. Maybe the "fine line" between soft, firm and hard will be easier to find. With any luck, maybe this empathy will also give me something new to faint over.

Changing my Mind

I am a daughter of Taiwanese immigrants. I was raised in a Detroit suburb during the Vincent Chin era. My family didn't have many Asian friends and we may have been the only Asians in our neighborhood, for that matter. From very early on, my parents impressed upon me the importance of behaving properly and working hard. Not just for the sake of my family's honor (it's an Asian thing) but for the sake of all Asians out there. We should never behave in ways that would cause others to discriminate against us, and in order just to be given equal consideration, I was told on many occasions that I had to work harder and prove myself many times over. These were the rules I was taught.

If I had had just Jake or two Jakes, I would probably be patting myself on the back just about now. After all, he's a good, friendly kid. He's pretty good at school. He seems happy. He is interested in pleasing other people. It follows that his good behavior and success reflect a 'good' family background and parenting, right? The irony is, I am such a better mom than I ever would have been because of Belac, but you would never know it by witnessing some of his willful behavior. This morning, he ran away from school again. This time, he managed to leave the school grounds... and then run down a main artery... then cross a street, with a handful of adults running after him. It must have been quite a sight. There were firemen visiting the school, this morning, and it was a fireman who eventually caught up to him. If I applied old logic, what would my child's actions say about me?

It's natural for a parent to see their biological child as a reflection of themselves. He has your eyes, she has your nose, she walks just like you. Those are the things we say to each other and what parents like to hear. But isn't it the same game when there are difficulties and challenges? Between parents it can turn into an outright blame game. He has your temper. She has your rigidness. And with the others come the inquiries: do you or your husband have this family history? Would anyone really believe me if I said there is no family history? It's just this natural thing to look for the child in the parents.

To survive this, to be productive, I've had to take my ego out of the equation. I can't tell you how that exactly happened because I really don't know. But not adding more baggage to Belac's behavior and the interactions with people who could help him has been the single most dramatic thing for me. Maybe it's because I'm 4 years into this and have more perspective than before, maybe it was a cancer scare not long ago, or just my mom hugging me a couple of years back while telling me she thought I was doing a good job and that she was proud of me. However it came to pass, altering my mind set and somehow seeing Belac as his own unique person saved me from unraveling.

Keeping Face on Facebook

[Out of respect for my friend's privacy, I have deleted her story which I previously published here. Though she is unaware of this blog's existence and was given a pseudonym, I realize that including her in my story without her permission was a violation of her privacy and our friendship, for that matter. The following is the conclusion of my former entry. Gimky 10.8.09]

Now I have a Facebook account, which I've had a love-hate relationship with since the start. I've posted things about autism there and I guess you could say I was asking for it. A few weeks ago, someone left me a one-lined message: "You're living with a person with autism, aren't you?" My kids are beautiful aren't they? And how are you? I didn't respond. To be fair, there have been only a few friends so obnoxious at Facebook. But I've slowly come to realize that I don't need 137 random people understanding what an intensely emotional subject autism is for me. And I recognize that collectively inviting people into my life like that was a mistake.

So no more mention of autism on Facebook. My profile there has never appeared more picture perfect and sterile, and I think it's exactly right.

A Facebook Message

Recently, I had been thinking about canceling my Facebook account for reasons I will explain another time. Thank God I did not. Tonight, I received a message from someone who found me on Facebook. It read:

Hi Gimky, It's Albert from Forest Hills.

I didn't have your email or phone number (very strange) but wanted you to know that Regina went to the hospital on MON after suffering stomach pains and no appetite for a couple of weeks. As I understand, they found cancer in her colon. Though she thought she might return home today or tomorrow, she will not be coming back to Forest Hills and will instead be going to a hospice in the Bronx. I know you are close so I wanted you to know.

I have limited information on the hospice but would be glad to give it to you. I am sorry to have brought you bad news.

I hope you and the whole family are all well.

Albert

I spoke with Regina, two weeks ago. She was not feeling well but wouldn't let me take her to the doctor. I once brought her to her doctor. She was so devastated to overhear what the parking attendant was charging me, no amount of arguing with her would allow such a thing again. I did make her promise that if she needed me for the slightest thing that she would call. She obviously broke her promise, though I'm anything but surprised.

Dear, dear Regina.... How can this be happening? I am not ready for this. Leaving Poland for Russia, alone and on foot, saved your life in World War II. You lost everyone and everything but your convictions and your soon-to-be husband. What will become of our breakfasts? I've lost track of all the concerts you took the trouble of coming to. What am I going to do when you aren't here to show me what a strong woman is supposed to do?

More

(Belac 9/09)

According to lore, the mother of legendary violinist Itzhak Perlman once went to his master teacher, Dorothy Delay, in tears. His mother was distraught because her young son seemed to know nothing else but how to play the violin. As a kid touched by polio and growing up on crutches, Perlman did not have a typical boy life of soccer games and tag on the playground. He was different from most other kids, his childhood was different, and I understand why his mom worried. She didn't know then, that everything would work out. In fact, not only would Perlman go on to be a world class Violinist and Teacher, he would become a devoted father and husband, advocate of various social causes and a revered, engaged citizen of this world.

I am a parent of a child with high-functioning, 'atypical' autism. My son is a very bright kid. Maybe he'll be a computer programmer, one day, or a translator of written Chinese. Who knows what his future holds. But sometimes I can't help but fret. Will he be able to converse more easily one day? Will he be happy and make friends? Could he ever have a partner in his life who is not Me?

That's the thing about being a parent, and I never understood it until I became one. You want everything for your child and more.

Compare as you Dare

Without fail, the kids in my toddler music class always ask for "Shake." It's this incredibly fun, musical exercise that my good friend Ella taught me. The kids absolutely love "Shake." The song is never the same and full of surprises and the kids want to do it over and over again. Ironically, it's also an activity that has the most opportunity to present problems. Each child gets 2 egg-shakers and I always announce as I distribute them "you get what you get and you don't get upset." This is a necessary reminder. If the eggs were all the same color, every child would be content enough. But there are four different colors and this can get tricky. A child's favorite color is red so she hopes to get a red egg. Darn, she doesn't get a red one. And now to complicate matters, her friend next to her got a red one, maybe two. Can she make do? Can she move on and enjoy the blue one even though it's not red?

I recently signed Belac up for a hip hop class, which met for the first time this week. We spent weeks preparing for it. We checked out hip hop DVDs from the library, I turned up the music around the house, he copied my moves, I copied his. It was a blast. This kid likes to dance! I thought it would be great for him to move and be with other kids in the context of not much language. The class took place in after school care while I was working. I admit, it was ambitious to think he could go without my monitoring but I wanted him to try and hoped. When I went to pick up the boys on Wednesday, the Director was waiting for me. "I'm sorry, but I'm going to have return your money." Apparently, Belac didn't want to participate in Hip Hop. He was distracted by the mirrors and was wandering back and forth in front of them, making faces. "He was distracting and it's not fair to the other children. I'm sorry." (Ugh. I won't even get into her use of the word 'fair' today.)

Later that evening, I went to Open House in Belac's classroom. Parents sat at tiny desks admiring their children's letters and pictures. Our assignment was to write a letter to leave on their desks. I filled the entire page, quickly, not thinking twice. I then noticed that the parents in our table cluster wrote just a line or two. I saw, out of the corner of my eye, that the mom next to me wrote just three important words: "I love you." Our children's teacher mentioned that kids were both reading and not reading, yet, but that it was okay either way. Each child had a book in his desk and parents were invited to have a look. I pulled out Belac's book, which was clearly quite advanced and something a 3rd or 4th grader might read. It had densely packed words and small pictures. I noticed the woman next to me eye-ing Belac's book and my letter in full view. Was it my imagination or did she flip her beautiful note over so that I couldn't see it?

I felt the urge to reassure her. Your boy is fine and perfect! You're looking at all of this but you don't understand. If you saw my boy, you'd know. He can barely have a conversation with anyone. He got kicked out of Hip Hop class, today.

It is so hard not to compare and it's taken me a long time to learn this. Comparing to a standardized norm is useful only in assessing what a child may need to work on, but that's it with the comparing or you will surely drive yourself nuts. As my friend Babs advised me yesterday (the one who's going to punch the neurologist's wife for me), I have to compare Belac to himself. Where was he before, where is he now, where is he going and how is he going to get there? Maybe he'll manage 5-10 minutes in Hip Hop, then by session 6, he'll manage 30 minutes there. Maybe in 6 months he could be in there by himself. That is a valuable and productive comparison. Otherwise, it just isn't helpful to think too long about how everyone else managed in Hip Hop from the very first second.

So here's to appreciating, working with, and making the very best with whatever color you got! Let's SHAKE it baby!

Making Lunch

When I was in elementary school, I bought lunch everyday and hated it. You always want what you can't have and I wanted my mom to make me lunch. I wanted one of those pink metal lunchboxes with matching thermos inside, a sandwich in a ziploc and some other goody thrown in. There were 3 kids in my family, my mom was not a morning person, nor did she know much about Western food as an immigrant from Taiwan. Sending us to school with 3 quarters for lunch was just easier.

Fast forward to today. The alarm went off at 6:30am and I wondered if I could just send the kids to school with lunch money. I'd then have 15 more minutes to sleep. All month I have been showing them the lunch schedule and pointing out lunches they might like. Look! On Monday there's pasta! Or over here, on Friday there's pizza! Today, I remembered, was chicken nugget day with veggies and a fruit, could I convince them to buy lunch?

"Hey guys!" nudging the boys from their sleep and speaking as if there was going to be a once-in-a-lifetime opportunity not to be missed, "GUESS WHAT?? It's chicken nugget day! Who wants to buy lunch today??" There was eye rubbing and stretching and a moment of contemplation before they both chirped, "Not me! Not me!" Belac wanted his usual salami sandwich and Jake didn't really care what it was "Can you just make me lunch for the rest of the week?"

To be honest, I don't mind making lunch, everyday, in fact I kind of like it. Maybe the very act fulfills some sort of something in me, left over from my childhood. Or maybe I just feel better knowing I can give my kids these small things. However, it doesn't escape me, as I slather mayo onto bread with eyes barely open, that my involvement in my childrens' lives is so beyond what I ever experienced as a child. In other circumstances, maybe I would have adopted my mom's more unsentimental and hands-off approach to child rearing or maybe I would have turned out to be a little more hands on, anyway, but I'll never now for sure. Autism has pushed me to my extreme attention.