I have no excuse

7 Jan

But I was relieved to see that my last update was in June, as I was quite convinced that it had been a year.

In July we relocated Mishegas Manor to my dream rental.

I have, it turns out, very modest dreams.  I don’t dream about living in a great McMansion in a gated community in California, because what fun would that be without a staff?  No, I’d need an awful lot of assistants to keep up with a place like that.

And while the wildlife that lived among us in the last Mishegas Manor certainly kept things interesting, and, you know, unsanitary, I wasn’t sad to bid them an unfond farewell.

But let’s not dwell where we don’t dwell.  The new Mishegas Manor is a very modest 3-bedroom townhouse with a lovely tile kitchen and a big bathroom upstairs.  There’s a tiny yard and just enough space in front for me to plant a tiny flower garden, which I did, back when it was warm.

So far, Flower really loves her new school.  She has a one-on-one paraprofessional, and is in a regular, mainstream class, but goes to the special ed room for academics.  The neurotypical kids in her class are really good to her, and Flower loves them.   They fight over who gets to sit next to her, and who gets to accompany her to social skills group.  (She gets to bring one friend.)  The Bishop and I went to her school for her birthday.  We brought cupcakes and the Bishop brought his guitar.  We could tell that Flower was really happy and well-liked.

One day Flower was out-of-sorts because her regular para was out.  It was time for her to go to special ed, and she didn’t want to go.  Her regular ed teacher told us this story.  Flower started to cry because she didn’t want to leave her friends.  “So,” her teacher said, “We all went.”

Yes, her teacher packed up the ENTIRE CLASS and they all walked Flower to special ed.  Flower was satisfied with this solution (I should hope so!) and stayed in the special ed room and the teacher and class went back to the regular room and I was pretty much weeping at this point in the story because it was such a wonderful, creative, perfect, accommodating thing for her teacher to have done.  Just breathtakingly kind.

There’s that.  Curly is Curly.  He still goes to his old daycare, because he likes it, and it’s not that far away, and he’s still his curly self, except for when he’s Batman, of course.


I have the best excuse

12 Jun

My blog is looking like one of those sad blogs that never get updated, and when I see those, I wonder what happened to the person who wrote it. Did they lose interest? Did they meet a bad end? Were they eaten by a pack of passing jackals?

I was not eaten by a pack of passing jackals, but even so I have an excuse.

Flower is such a good helpful girl, and one day while we were meeting with the advocate about the IEP, Flower decided to water the flowers. So she took a cup of water and she filled it up at the sink and she carefully, carefully carried it outside and ceremoniously dumped it into the pachysandra. Then she went back inside and got several more cups of water and also watered a large hostile hosta and some poison ivy.

Then she decided to do some watering inside the house so she helpfully watered the Bishop’s laptop.

It could not be revived.

Eventually, my parents took pity on our plight and they offered me my dad’s old laptop. It’s slow, it’s heavy, it doesn’t have a battery, but the price was right and, well, here I am. Wallowing in first-world problems once again.

We’re all still here, my kids are still vaccinated (and cute!) and Flower ate a homemade waffle today. Could be worse.

Dear Unpleasant Man in Section 19, Row I, Seat ???

20 Jan

I’m sure you’ve read the post that’s gone viral, about how a guy on the plane was nice to a little girl with autism. This post is very sweet and lovely and it has gone viral. I can’t get enough of it. I even watched some news footage, and they had tracked down the guy and he was just some guy and he was just very nice and didn’t have much to say about the whole thing.

And you know what is so remarkable about this story?

What’s so remarkable about this story is how RARE that is, for a stranger to be nice to you and your kid if your kid has special needs.

Oh, sometimes strangers are overly nice, uncomfortably nice. Like the time I went to the zoo with Tracy and her twins, who are also on the spectrum, but tend to be higher functioning than Flower. And since I also had Curly with me, I stuck a sticker on Flower that said something like, “I HAVE AUTISM IF I AM LOST PLEASE CALL ___” and it listed my cell phone. Because Flower has been known to wander. And she’s not non-verbal, but she’s kind of functionally non-verbal. Like she might say, “I want Mommy!” But as far as who Mommy is, that would be beyond her ability right now.

Anyway, where was I? Oh, this nice man comes up to me and says something about how he’s been watching my daughter and he just wanted to tell me how adorable she is. Which was really… I mean, Flower is 7, so she’s kind of past the “awwww, a cute kid!” thing. And Tracy’s kids are just as adorable as Flower, but they weren’t wearing stickers. So I thought he was trying to, I don’t know… support me? Show himself how accepting he is of people with disabilities? Maybe he really did think Flower is adorable… she is very cute, but you know, I’m biased, and she’s 7.

Also sometimes strangers are not at all nice. Sometimes they stare. Sometimes they say things, like, “If I acted that way my mama would have smacked me,” That kind of thing. On Halloween, some lady waved her hand in Flower’s face when Flower didn’t look at her when she was taking candy. And I don’t think Flower’s autism is particularly well-hidden, that is, I don’t think Flower can “pass.”

Today we took Flower and Curly to a basketball game. They love to go. We got seats in kind of a crowded section, and then, lo and behold, in the row behind me, surprise! A friend from synagogue! The bishop and Curly sat down two rows back because our row was crowded and people had put coats on the seats. I’m sure we were being disruptive – not unreasonably so – but there was some passing of drinks back and forth and, at one point, Curly. But it’s a basketball game in the middle of the day, not a Yo Yo Ma concert. So this guy, rather nastily, says, “I feel like I’m intruding on your family conversation. Why can’t you just get seats together?”

We did get up and move. And maybe it had nothing to do with the fact that Flower, who was directly in front of him, was up and dancing instead of sitting quietly. But I didn’t feel that. Maybe it really had nothing to do with Flower. We’ll never know.

I just know that when I am in a position that I have to depend on the kindness of strangers, I worry, because strangers can often be remarkably unkind.

Hello, old bully

19 Jan

Around 5th grade, it seemed like all the girls who had been my friends suddenly turned mean.  I came home every day after school and cried – I felt so betrayed.  One memorable incident involved a girl following me around the gym calling me “birdbrain,” and when I told the teacher, the girl denied it.  There were boys that used to sing a song about me.  They called me “Doobie Dumb.”  They had whole songs they’d sing in my honor.  “Doobie Dumb, Doobie Dumb Dumb Dumb.”  I was bad at the sportsing, so there was a sort of “Casey at Bat,” thing that they would do, only it would feature me at bat.

I struck out.

It was so bad that by my second high school I changed my first name, (first to my middle name, then, pretentiously, to a name that had nothing to do with mine, and finally to my real name but not the diminutive.) I still can’t stand being called the name that I wore in elementary school.  Bad associations.  Whoever I am, I am not who they said I was, and I knew that even when I was 15.  

My first high school was a private school in Manhattan and the kids there were brutal – way meaner than their suburban counterparts.  It seemed like I was the only kid from the suburbs, and I was not very sophisticated, not compared to those born-and-bred city prep school girls.  Oh, they knew just what to say to me.  

The boys were worse.  There was a pack of 10th grade boys that used to follow me through the halls calling me “beast.”  

In the middle of 10th grade, I switched schools to a school in Brooklyn where the kids were nice and I was, generally, liked, and I do not remember being bullied there at all.  But there was damage.  I was a goth (we didn’t call it that back then, but that’s what it was) because I thought I looked romantic and lovely and tough and cool and nobody would mess with me.  It took me the full 90 minute subway ride to psych myself up to walk into school.  I was always braced for those boys to find me.

So, that’s the way I remember it.

Memory is a funny thing, though.  I don’t know if those kids who bullied me, I don’t know if they remember it.  I don’t know if they remember it that way.  

I say this because when I think back on it, I think that even though I never dreamed that I had the power to hurt anyone – that nobody really liked me enough to care what I did, I was a bully too.  

One day, In 9th grade I dumped all my friends.  I had a girl-crush on this one girl who had asymetrical hair and was Greenwich Village cool, and I wanted to be her best friend so desperately.  She was a nice girl, but cold, remote, and that only fed my need to be liked.  Another friend told me that the best thing to do would be to dump my less popular friends and thereby set the stage for having more popular friends such as Greenwich Village girl, and I thought this was great advice and a fine idea and I promptly dumped my friends and then I really didn’t have any friends at all.  Not nice.  

I saw myself as a victim, and any bullying that I did was self-serving, and in the service of getting myself out from under.  But I bet it didn’t hurt the kids who were my victims any less.  

Or maybe they don’t remember.

I bet they do, though.  I bet they remember it just like I do, and nobody says anything about it, because really, what’s to say?  

I’ve seen kids on the playground try to bully Flower, and it makes me so angry.  I’ve seen this more than once – kids play a game where they run away from Flower and let her chase them and they laugh at her.  I want to scream at these kids and at their parents.  I want to say, “Really?  Do you really want to be the parents of a kid who bullies a girl who has special needs, or do you want to step in and teach your kids to be nice, to have some respect?  Because that girl your kids are running away from has been through things that you would not want to imagine.  She is a nice girl and she does not know how to play with other kids, so if you don’t want to play with her, if you don’t want to even try to play with her, then just leave her alone and let her do her own song and dance in peace.”  Bullying is all about trying to lift yourself up by pushing someone else down. I learned this as victim and as perpetrator. 

 “Ignore them,” my parents, my teachers would say, as if I could, as if turning away and pretending it wasn’t happening, pretending they didn’t mean me, as if that would make it hurt less.  Because for a bully, the victim’s reaction isn’t the point.  It isn’t about what you do, it is about how the bully looks to the people they are trying to impress.  So it really doesn’t matter what Flower does, or that she doesn’t notice it at all, because it still happens, and it’s still going to happen.  But Flower seems to be oblivious to it.  In her own way, I hope that she is above it.  And I don’t know if that is better or worse.

One more thing on vaccines and then I will (probably not) stop talking about this:

31 Dec

Curley is currently in the clutches of Cold Quimby, which is hopefully the last cold of the year, and on Wednesday, we can start all over again with the A’s.  He never really finished with Cold Pernice, and then he came down with conjunctivitis.  The doctor prescribed eye drops and antibiotics to help clear out Pernice.  We called the doctor on Saturday when Curley’s eye seriously swelled up and they told us to call back if he developed a fever.  This morning, Curley woke up with a fever and the miserables, so the Bishop took him to the pediatrician who let us know that the antibiotics were doing fine with the Pernice/Pink Eye combo, but in fact, Curley’s fever was the hallmark of Quimby coming in and I. Am. So. Done.  So done.

If there were a vaccine against Conjunctivitis, I would give it.  I would also like a vaccine against gastroenteritis, and every single last stinking form of the common cold.  I would also like a vaccine against bad schools, gun violence, war, peanut allergies, and bad moods.

Maybe I’m not the world’s most realistic mom, but I know what I want.  I hate for my kids to be sick.  I hate for them to feel lousy and for their beautiful eyes to swell up like red grapes and for them to be sad.  I know that I can’t protect my kids from everything, but you see, I want to.  I really really want to.

But since I can’t protect them from everything, I’m still going to protect them from the things that I can.  Maybe it won’t work.  My kids may think I’m all-powerful, and that a single kiss from me can innoculate from all manner of hurties, and you and I know there just isn’t much that i can do in this world.  But I’m going to do what I can.  

Santa Claus is coming to town…

24 Nov

In case you hadn’t heard, in case this is news to you, the holidays are coming and Santa Claus is coming too. But not to my house.

This wasn’t really an issue for Flower. Oh, she knows about Santa Claus, but the whole “Guy in red comes down your chimney,” was something she could take our leave. She likes the music, and the lights, and Flower’s birthday, which is December 8th and is the biggest holiday of all. She also really loves Haunkkah..

But Curley. Curley wants to know about Santa Claus. And everyone will be talking about Santa Claus, and so on. His friends at school. And strangers will walk up to him and say, “What is Santa going to bring for you?” They’ll do this because they want to see Curley smile. People did this to Flower. But the most anyone would get out of Flower would be her saying, “Santa!” and bursting into a rousing chorus of “Santa Claus is Coming To Town,” complete with a special dance and her own lyrics. And I would say, “She’s Jewish. We don’t celebrate Christmas,” and smile to show that I wasn’t offended by someone being kind to my child.

But Curley is curious about this Santa thing. He asked me about it. “What’s that?” he said, pointing to a picture of Santa Claus he found on an old gift bag that was lying on the floor. (What? Isn’t that where everyone stores their old gift bags?) Curley wanted to know all about Santa Claus. Who he is. What he does. What he could do, if given a chance, for Curley. Like bring Curley some toys. Curley likes toys. Or maybe bring Curley a doggie. Curley would really like a doggie.

“Santa Claus comes to the houses of all the non-Jewish children,” I said. “He comes down the chimney.”

Curley doesn’t know about chimneys. He looked unsure.

“He comes down the chimneys of non-Jewish children and he eats all their cookies,” I said. “But you, Curley, are a Jewish child, and you are lucky. You get to keep your cookies.”

“I wanna cookie,” Curley said.

“Yes, that sounds good,” I said. “Let’s go get a cookie.”

This is autism.

19 Nov

It’s some sort of national or international or interplanetary Blog About Autism day, and this is in response to Autism Speaks, who pissed off a lot of people, some of whom have autism, and some who don’t, because the founder posted an article. I’m too lazy to link it, but the gist was, “People With Autism are Not Actually People, Parents of People with Autism are Actually Dead and Nobody Has Bothered to Tell Them.”

Sometimes, when Flower wants something, even if it is something very, very small, she will scream and yell and howl as though she is in the Worst Imaginable Pain. She’ll be screaming and howling and I’ll say, “Flower, what is it? What’s the matter?”

“I want Dora,” she’ll say. “I want Super Babies.”

The howling, see, the howling like she was in the Worst Imaginable Pain, that was to draw my attention to her plight that she wished that her iPad was playing Dora, and it wasn’t. Without the howling, I might not have paid attention.

I think that is what Autism Speaks is doing with this post that got so many people mad. They are howling as though we autism parents are in the Worst Imaginable Pain in order to get some attention.

I hope it works. We could use some attention. Easier access to services? Sign us up! Insurance has to pay for stuff? Heck, yeah! Spend more money on education, early intervention and services? Sure! Free cookies for my friends? I’m all for that.

Meanwhile, can I just brag about Flower? Flower is almost 7, and she is just now starting to eat solid food. You hear me? SHE IS STARTING TO EAT SOLID FOOD!! We’ve been working on it for a long time with this amazing feeding therapist in another state, and Flower has been eating solids willingly enough for rewards, but she has finally started to choose solid foods over pureed foods. Yesterday, she ate her first meal ever that was made up entirely of solid foods. She had canned vegetables and pancakes. I was all ferklempt. I was a wreck. It was amazing.

When Flower was first getting diagnosed, her wise teacher said, “You will celebrate all the small achievements.” That is certainly true. Flower works so hard, and she does amazing things. A year or two ago, Flower’s feeding therapist told us that she might “never” eat solid foods. (I used this pronouncement as an excuse to console myself by buying a Vitamix. ‘Cause, you know, we were going to need to puree stuff! Lots of stuff! Then we started seeing this other out of state therapist and Flower started eating solids and now I’m stuck with this Vitamix, STUCK, and forced, FORCED, I tell you, to make smoothies and pretend ice cream out of frozen bananas.)

Of course, nobody is allowed to use the word “never” where Flower is concerned, because Flower is a surpriser, and she likes to surprise us all by doing stuff when we least expect it. And then we celebrate and we put on “Freeze Dance” from Fresh Beat Band and we all dance around the house laughing – Curley too – And I feel full of joy. So yeah. Scream and yell and howl all you want, Autism Speaks. We know we’re happy and weird here, and we have nothing to prove.

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