Did the thunder got him?

31 May

We went to Ohio to visit the Bishop’s 92 year old grandfather and when we got there, he went into hospice and started dying, and then he did die.

My inclination was to not really tell the kids much of anything about it, but the Experts (our rabbi, someone at the hospice) said that we should not do that, that we should tell the kids that he died.

I sat Curly down first.  “Curly,” I said, “Remember how we went to visit Great-Grandpa, and he was very tired and needed to sleep all the time?”

Curly did remember.  “Did he died?” Curly asked.

“Yes, he did,” I said.

Curly asked, “Did the thunder got him?”

“No, thunder can’t get people!  He was very old and he got very sick and then he died and we won’t see him anymore.”

“Where did he go?”

I tried.  “He went to G-d,” I said.  (Curly knows about G-d.  I told him about G-d in response to the astute question, “Who gave me my schmeckle?”  So Curly knows all about G-d now.)

“G-d is my love,” he said.

“Yes,” I said.  “We’re all very sad because we will miss seeing Great-Grandpa.”

“Is he sad?”

“No,” I said.  “He’s not sad.”

“He’s happy,” Curly decided.  “He’s in G-d’s house and he’s happy.”

OK, good enough.

Now, for Flower.  I sat her down.  She was wandering off, very disorganized, singing, no eye contact.  “Flower, I have to tell you something important.  Great-Grandpa got very sick and he died and we aren’t going to be able to see him anymore.  Do you understand?”

In response, Flower made an exact imitation of the noise that Great-Grandpa had been making at this hospice, this sound that’s like a snore, but different.  They call it a “death rattle,” which is damn creepy.  Technically, they call it “terminal secretions,” which is equally creepy, but anyway, that’s the noise that Flower was imitating, and her imitation was spot on.

We had been at the hospice for most of the day on Sunday.  They moved him over on Saturday and he was full of complaints and seemed uncomfortable, but by Sunday he was much more quiet  They told us he was dying.  He was peaceful and nonresponsive.  His breathing was slowing, his vitals where slowing, his body was stopping.  And he was making this noise.

We didn’t want the children to see him.  So we hung out in the “meditation room,” played Candyland in the lounge, went for walks outside, to the playground, to the garden.  But then Flower escaped us and she ran into Great-Grandpa’s room.  She lay down on the couch in there, and she stayed with him for a while.

She has always loved this Great-Grandfather so much, asking to see him and giving him much affection.  (Which in her case is allowing him to hug her, then pointing at him and saying his name, or getting in his face and saying, “Hi, Flower!”)  We did not know how she would handle his passing.  But she did seem to understand – there was that noise she made, the exact imitation of his breathing at the end.  She’s a scripter.  That’s how she talks and communicates.  She was reciting the script of his passing.

She was quiet at the funeral.  (And believe me, I had a fun time explaining to Curly that if Great-Grandpa is with G-d, what exactly was in that large box we were putting in the ground?)  But Flower didn’t cry and she wasn’t scared and she didn’t act out or ask for him, and even now we don’t really know what, if anything, she understands.

I think that she understands everything.  We’ll miss you Great-Grandpa.  I hope you’re having a nice time in G-d’s house.

The R-Word, in all it’s incarnations

8 Apr

I’ve noticed a trend, in blogs, in speech, where authors or speakers kindly don’t use the “r-word,” because they know it’s not PC, and instead replace it with the more PC term, “Intellectually disabled,” or a similar term.

And yet, they are using it in the SAME WAY. To refer to someone who is NOT intellectually disabled, but IS behaving in a manner that is disagreeable, stupid, illogical, or irrational. There is a world of difference.

Look, thanks but no thanks. You are missing the point. The point is not the r-word itself, the point is the stigma of the r-word. The point is that you use a word to insult someone who behaves in a manner that is disagreeable, stupid, irrational or illogical, and then you use the SAME word to describe someone with an actual intellectual disability, someone who is NOT disagreeable, stupid, irrational or illogical.

Not only should you not use the r-word, (please don’t) you should not use ANY language that describes a person with a disability to describe a person who does NOT have that disability. It is disrespectful, it hurts, and in my mind, it is no better than just using the r-word. Just say what you mean – there are lots of other words – or even better – just be nice. Thank you.

Flower’s Friend

14 Mar

A boy in Flower’s class wants to marry her. He told the other kids that he wants to marry her, and another kid told him that he can’t marry Flower because Flower has autism.

OK, first of all, wait, hold on, HE WANTS TO MARRY FLOWER? I mean, they’re only eight, but still, how adorable is that?

Also, he can too marry Flower if she wants, and if he is prepared to support her in the manner to which she is accustomed and cut her “m’apercados” just how she likes them and provide her store brand Pediasure, chocolate cake and pizza. And nobody should be telling him otherwise.

So we got an invite to this boy’s birthday party and I emailed his mom that Flower and I would come, and she wrote back saying, “That’s great, because S. told me he only cares if Flower goes. He loves Flower and talks about her all the time.”

I did what I usually do in those situations, which is praise the parents for raising such a compassionate kid, and the mom brushed it off, basically implying that it is NOT compassion at all on S.’s part, that he really really just loves Flower. He says that Flower is his best friend, and he talks about her all the time.

When we got to the party, which was at a theater, where they were performing a play that S. was in, and they introduced S. in order to sing him happy birthday. And from the stage, S. was waving. At me? No, not at me. At Flower, who was all smiles. And the second the play was over, S. bounds into the audience just to give Flower a hug. “Flower!” he said, “I”m so glad you came!” He tried to bring her with him to the dressing room, but that was discouraged.

At the party, S. insisted that Flower sit next to him and go wherever he went, including the bathroom. (They’re only eight!) And Flower just loved it, she clearly loves S., and she loves the attention, and she loves, she can tell, that for S., it’s more than being nice or tolerating her because the teacher said to. S. just really likes Flower. He likes hanging out with her. He likes seeing what she’ll do. He hums part of a song, and Flower finishes it. And then they laugh! The first time I met him, he said, “Flower has such a pretty singing voice, I love how she sings all day.”

At the end of the party, I found out that S. is moving away at the end of the school year. I’m pretty bummed out about it. But we can only hope, as parents, as our kids make their way through life, that they will find people who really like them, just for themselves.

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.


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