I Wanna Be Sedated

21 Sep

Hi, I’m sleep deprived. You don’t have to fix it. You probably can’t fix it. I mean, you can try to fix it, but you probably can’t. What am I saying? I’m sleep deprived!

Our sweet Flower has decided that sleeping through the night is just not her thing. She decided this a few months ago. I can’t remember exactly when it was… she had been sleeping through the night for a while and then she stopped and now she doesn’t do it. She goes to bed just fine at bedtime. Falls into a deep sleep. You could stick her right in the middle of one of those Ramones shows I used to go to in the 1980’s, I loved the Ramones, and those were some loud shows. She’d sleep through it.

But then, and why? We don’t know. But then… 7/8 days a week, she gets up in the middle of the night and comes into my room. Sometimes she wants something. Most of the time she wants to be put back to bed. By me. Then she falls into a light sleep. Me just thinking about those Ramones shows will wake her up. If I don’t creep out of the room silently enough, she wakes up and I have to start all over again.

We tried melatonin. It does nothing for Flower.

We’ve seen some specialists. According to them, it’s my fault. (Really? Name something that isn’t.)

They’re full of solutions. They’re full of the kinds of solutions you can find by googling “Supernanny” and “Sleep.”

We’re taking her for a sleep study this week. But I’m not overly hopeful they’ll find anything that they want to treat.

But poor Flower. She must be so tired. She must be as tired as I am

Five Schools in Five Years

9 Sep

Today was the first day of school for Flower, at her fifth school in five years.  They say kids on the spectrum don’t adjust to change well… at this point we wonder how Flower would adjust to being at the same school two years in a row.

Of course, Flower does do change just fine as long as she can anticipate it.  As long as it is on the schedule.  And she did her Extended School Year session at this school, had the same Special Ed teacher and everything, so she was pretty OK with it, except for missing her best friend S., who moved to San Francisco, and her favorite lunch lady Mrs. Larkin.

She really did love Mrs. Larkin.

She learned to write her name and everything.

It takes each school a while to adjust to the Ways of Flower, and that means that I’ll get an awful lot of calls from the nurses’ office, an awful lot of mildly disturbing notes home, until they’ve adjusted.  Because she’ll howl for no reason.  Existential angst.  Music stopped mid-song makes her absolutely wild, for example, but how do you explain that she might not actually be in dire pain, but just upset about a premature song ending?  Or having a pimple on her lip?  Or (as happened today) a mosquito bite.

She’ll howl for a reason too.  So how can they differentiate?  I can’t, and I’m her mother.

But every time I see the school nurses’ office number come up on my caller ID, my heart contracts with fear.

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.


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