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Dear Senator Toomey

25 Jan

Dear Senator Toomey:

Thank you for your response to my letter. I am writing to you again regarding my grave concerns about Betsy DeVos. Ms. DeVos does not have the background, knowledge or qualifications to be Secretary of Education.

In addition to ethical concerns, I am particularly concerned about her lack of knowledge about IDEA legislation. As a parent of a child with special needs, who receives special education services in the excellent public schools of Garnet Valley School District, I am anxious to see the schools continue to have the ability to offer my child, and children like her, a free and appropriate public education. My child benefits from being in a mainstream classroom, and the other children learn compassion, patience and leadership from having her there. It is vital to her growth that our public schools continue to be the best and safest place to educate all of our children. People with special needs need to be able to function in our larger society, and part of that means learning from her neurotypical peers.

My concern is that Ms. DeVos would attempt to privatize our public education system, leaving children like mine with only the option of private or charter schools, and no matter how good these schools are, they can not replace the life skills she learns by receiving her Free and Appropriate Public Education in a mainstream setting. I am also concerned that Ms. DeVos seems to know so little about the federal laws that govern our education system. As someone who hopes to lead our teachers, she really needed to have done her homework – any teacher could tell you that much!

Please reconsider your support of Ms. DeVos for Secretary of Education.

Constituent, concerned parent
Aston, PA

20 Oct

There are so many things about this election which are “triggering” for me, and I’m not going to apologize for using that language, so if you’re going to say I’m too sensitive, have at me, you’re not wrong, but I’m not sorry.

In addition to having to re-live and talk about being repeatedly groped by my dentist as a child, now we get to this issue of the Republican candidate having no idea what actually happens during a high-risk pregnancy.  And this sends me down down down (as Flower would say) the rabbit hole of reading “It Happened To Me Stories” of people who actually HAD late pregnancy terminations.

This is not that.  I never had a pregnancy termination at all.  I had one, very, very early miscarriage, and we moved on.  Getting pregnant with Curly was the bravest thing I’d ever done, because of everything we went through with Flower.  But here’s Flower now, all smiles.  She’s home with a cold, but she’s happy.  She had her first cheerleading practice last night, and came home full of herself and the joy of tumbling, which she practiced in her room, with my help, before bed.  “Upside down: Funny!” she said.  Heart.  Melt.  So that’s Flower.  She’s almost 10 now, can you believe it?  She’s doing so well.

For some of these women in the late termination stories, they had that awful moment I did, when the tech rubs the ultrasound wand over your happy warm giant belly, looks, looks again, presses harder, frowns, leaves the room without saying anything while you look at your partner in terror.  Then a doctor comes in.  Says things you might not understand, and then THINGS start happening.  Monitors.  IVs.  In my case, 2 horrible rounds with mag sulfate to stop my pre-term labor, but the whole time, the whole terrifying time they’re trying to stop the labor, echoes in the back of my mind:  THERE IS SOMETHING WRONG WITH MY BABY AND THEY DON’T KNOW WHAT IT IS.

See, Flower had a giant tongue.  That was what the perinatologist saw on the ultrasound at 27 weeks.  We’d seen it before, but the doctors had said, “Well, isn’t that cute, baby is sticking baby’s tongue out.”  We, who think to worry about EVERYTHING, had not thought to worry about that, busy as we were about worrying about the Bishop’s new job, moving half-way across the country, and my case of gestational diabetes that I was managing by ignoring it and eating as many cookies as I felt like eating.

But now here’s the doctor assuring us that it is NOT cute, that it is a sign of something WRONG, and they don’t know what it is.  (Oh, and by the way, I was in labor at 27 weeks, so you know, there’s that.)

Bedrest for me, in the hospital, for 3 weeks, where my job was to gestate like a giant oven and starve and worry about what it all meant.  And watch TV.  I watched a LOT of TV.  Starve because hospital food + diabetes + vegetarian + very pregnant = HUNGRY ALL THE TIME.  After three weeks of this, Flower stopped moving.  During a routine morning monitoring, I told the nurse, “the baby’s not moving.”

THINGS happened quickly again, the ultrasound, the same perinatologist telling me they needed to deliver now.  No time to induce me, they needed to get in NOW if they were going to save my baby.  Then I’m sitting on a table getting a spinal.  Then I’m lying on a gurney, paralyzed from the neck down, having a barely alive infant removed from my womb.  “We don’t know the sex,” I told the kind OB, who nodded and squeezed my hand.  When doctors are extra nice to you, you know maybe this isn’t going to end well, not at all.

The whole time, the Kate Bush song “Houdini” is running through my head, do you know that one?  Still can’t hear it without ugly-crying.  “With your life, the only thing on my mind, they pull you from the water!”

And that’s what they did.  They pulled Flower out of the water, where she was drowning, and they saved her life.  They ripped her out of my womb at 30 weeks.  And things were REALLY touch and go for a long time, because it took them a long time to figure out what was wrong, and why she had a really giant tongue as well as other enlarged organs, but she’s fine now, and she’s not sick except for a cold, and she’s fine because they saved her life.  So mine is a story with a happy ending.

Reading these stories brings me back to that day so clearly.  I don’t like going back there.

So many of us have faced these awful moments in our pregnancy.  They don’t always end with a happy Flower giggling along to Peppa Pig.  Sometimes they end with the baby being not able to live, not at all.  Having seen tiny preemie Flower suffer the way she did, I would not have wanted to put her through that if it hadn’t meant saving her life at the end.  If there had been no hope – well, I can’t imagine it and I’m not going to.


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.

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