diaper geekery

Posted on by Phoebe Gleeson

So I’ve been changing diapers for eight and a half years. Most of the time I’ve had two kids in diapers and frequently three. What I’m saying is I know my way around, folks.

By the time Gloria is toilet trained I’ll have changed something like fifty thousand diapers. Well, 49,998, I forgot what Sean has contributed.

Regular readers of my blog will remember that I have always used cloth diapers. I’ve used old-school flat diapers with pins and high-tech polyester and microfiber pocket diapers and everything in between. Right now I’m using fitted diapers for Gloria and pocket diapers for Trixie and I am loving our diaper system, hence this post.

Trixie is in Fuzzi Bunz, size L. Recently Fuzzi Bunz redesigned their diapers and so everyone clearanced the old models. Like cars! But I like the old design just fine so I got them at an absolute steal, I tell you. About half what they’d usually be. I bought them over about a two month period, and I have a dozen – that’s enough for an older baby like Trixie if I wash every day. Trixie has eczema somethng fierce and even the softest wool + itchy tummy  = sad panda. I was resigned to waterproofed nylon over prefolds, but then she started having breakthrough rashes on her bum too. Hence the move to Fuzzi Bunz with their moisture wicking inner that keeps her skin dry. Love!

Gloria is in Snug to Fit Supreme fitted diapers, snap close. I had used them with Bede and Abby until my stash fell apart. They’re great workhorse diapers, and they are a one-size – they adjust in the rise to fit from about twelve to about thirty five pounds. My mother made me some stay dry liners for them and they are just great. Over them she needs a waterproof cover, and I use wool soakers or the aforementioned nylon ones. I got them at a HUGE discount when a retailer switched hands recently. Again, love!

I’m not giving up my prefolds and pins but it sure is nice to have some quick britches to change. These diapers go on just like paper diapers, zip, zap, zoom. Yay!

Our OT referral

Posted on by Phoebe Gleeson

Came. We’ll be at the OU Health Science (Sciences?) Center. Sposed to be good.

Sigh. Therapy stuff makes me melancholy because of the focus on his ‘cant do’s vs. my usual attitude. Not looking forward to intake forms. It’s not fun to see your kid described as deficits.

Will update as news presents. How bout that Michael Phelps though, huh?

autism goes to the doctor

Posted on by Phoebe Gleeson

I found out recently that our insurance will cover occupational therapy with a referral from our primary physician. I was pleased to learn that because Bede’s never had professional therapists beyond our yearly consult with his psych. But getting the referral required us to go to the doctor. Hmm.

My mom has been very busy for the last month so I waited for her to become available again and then made my call.

Phone lady: Has he been seen here before?

Me: No, you’ve seen his siblings.

PL: OK, we can see you at 3:30 on…

Me: Could you give us a time where we don’t have to wait as much? I mean, I know nobody wants to wait but he’s autistic and he’s going to be screaming pretty much the entire time he’s there.

PL: (nonplussed) Well, um, how about 1:30 on (several weeks away)? And that will be Dr. Name’s first appointment that day, he does afternoons.

Me: Excellent!

So today was the day. Sean went and got the new patient paperwork beforehand and we just handed it in when we got there. Then we waited. Bede tried to turn the tv off and on. He tried to take every magazine out of the rack. He tried to take off his shoes and clothes.

And he yelled the whooole time.

It’s the looks that get you. I understand people looking. Hell, I’d look, hear a kid scream “NOOOOO!! DO YOU WANT TO SEE THE CAR? DO YOU WANT TO LET’S GO HOME? OKAY SURE I GETCHOO LET’S GO HOME!! NOOOOOO!!” but the continual weight of the stares, the shock and disgust and the not looking away part. Well. Urgh.

Then after about 5 minutes in the waiting room we went back to the exam room. Bede was unable to be weighed because he wouldn’t stand on the scale. He’s very tactile defensive especially about his ears so no go on the temperature reading. When we got to the room he climbed up on the exam table and started taking the disposable otoscope covers out of the dispenser. When dissuaded from this he became upset. More yelling. The nurse left and said the doctor would be right in.

When he came in his eyes widened a bit at Bede and he said, over the din “I’m Dave. Nice to meet you!” He sat down (as I detached Bede from the dispenser again) and said “I understand you’re here for a referral for OT. You’ve got it.”

Yay!

Then he wanted to talk about Bede, who was at this point basically insane. He was amazed that Bede could read and write yet not converse and said “He’s like a savant!” He took a history and then left, somewhat shell-shocked. He came back in to ask “Do you immunize?” I got the same general impression I have always gotten from that clinic: no problem, let us know what you’ve decided. We think vaccines are good and safe but it’s up to you. (Regular readers of my blog will recall that we vaccinate very selectively on a highly delayed schedule.) So that was nice to not feel bullied. They also have the individual vaccines there, the nurse told me, for those who want single shots vs. multidisease ones.

Then we left. Bede declared that he wanted McDonald’s so that’s what we got. And that brings you up to date, OT here we come!

place value update!

Posted on by Phoebe Gleeson

First of all, thanks for all the comments on that. It was great to get everyone’s different ideas and tips.

Here’s what we did.

I printed out the graph paper I mentioned in the first post. I cut out ten single squares, ten ten-square strips and ten hundred-square squares. After I put bandages on my blistered hands (ha ha, it was a lot of cutting!) I sat down with Abby the next morning, equipped with my bits of paper and a Magna Doodle.

She was intrigued and got it almost immediately. We counted ten single squares and lay them down on the ten strip. She saw that it was indeed ten ones long. Then we lay ten ten strips on the hundred square, showing that it was equivalent to ten tens. Then I said “How many do I have?” and lay down 3 tens and 4 ones. “Thirty-four!” came the cry. I wrote 3 over the word tens and 4 over the word ones and lay the papers under the words. I asked “How many tens do I have? How many ones?”

I swear you could see the lightbulb appear over her head.

It was nothing then to extend it to hundreds as well, and we played with them for a few minutes more before she lit off with a gleam in her eyes, paper in her fists and headed for the markers.

So that’s that!

unschooling, graph paper and place value

Posted on by Phoebe Gleeson

As most regular readers of this blog know, I am an unschooler. I think children learn best when allowed to follow their interests. I still feel that way – completely – yet I am asking the girls to do enough math drill daily so that they stay approximately at grade level. It ends up being about ten or fifteen minutes a day. They don’t mind it, and have asked for their “school math” before too.

It’s not that I think they wouldn’t learn it on their own given time. I do think that. But I worry that some Family Court judge wouldn’t feel that way, and the more weird things you have going for you the worse it gets. And I’m pretty weird, I reckon. I know I’m paranoid, but we’ve had an unfounded run-in with CPS before and I know what they ask. Is it legal for them to ask my kids “What’s thirty four minus twelve?” No, it is not. Will that fact keep my kids from foster care if some social worker determines on the fly that they are educationally neglected? No, it will not. Hence the math drill. I also want them to be able to enter school at grade level if they ever had to because of some family crisis.

Everywhere else they stay on grade level. We have subscriptions to Ranger Rick and National Geographic Kids; both magazines are devoured the moment they hit the mailbox. They read whatever they want in the kid fiction department, and read Newberry books or quality nonfiction with Sean at night. We have a subscription to Brain Pop as well, which has hundreds of short videos on every topic you can imagine. They write and draw stories and type on the computer constantly. So they stay in the ballpark (schoolyard?) for everything but mathematics. I know they’d get it on their own if I gave them time. I freely admit that this is all me.

I have officially outed myself as an incomplete unschooler! But not really, do you see? If there was no external timeline I wouldn’t be doing this. It’s all fear based, and I’m okay with that. I hope my unschooler friends don’t hate me now. I know the ones who are really my friends will understand.

So after all that, my point. Ahem.

Abby is having a tough time with place value right now. I just printed out some graph paper to see if that will help, to see that ten ones make ten, and ten tens make one hundred, etc. I looked into buying some Cuisenaire rods but they just look like expensive choking hazards, frankly. Lakeshore Learning has some cute little manipulatives that are the same way.

So what have you done to help your kids “get” place value? That didn’t involve teeny killer plastic or wooden bits, I mean.

Hyperlexia: A Literary Journal Celebrating the Autistic Spectrum

Posted on by Phoebe Gleeson

I’m thrilled to announce this to you all: I’m the co-editor of the above journal. You can see more at the journal’s web site, here.

Hyperlexia: A Literary Journal Celebrating the Autistic Spectrum is looking for your fiction, poetry, and personal essays. Our inaugural issue is planned for October 2008. Send submissions to submissions@hyperlexiajournal.com and please include the full text of your writing in the email if you send a PDF or a Word file. Deadline for submissions is August 31, 2008.

Hyperlexia is interested in honest, thoughtful, well-written poetry and prose about being autistic, and loving someone with autism. Our journal is a celebration of real life with autism, both the good and the bad. We want genuine and truthful writing about autism. You can be serious, sad, or funny. We believe in respecting the diversity of the human mind and discriminatory writing or hatred of any kind will not be published. Submissions should be 1500 words or less.

I’m one of 3 editors. The other two are Brittney Corrigan and Kerry Cohen Hoffmann. They’re much better writers than I and I’m honestly just pleased as punch that I’m included.

So, get writing! This thing will only fly if you write for it, after all! Deadline for submissions is August 31.

Twenty days later

Posted on by Phoebe Gleeson

This is what we’ve been doing this summer. Autistic kids sometimes need lots of repetition to get comfy with new things, much more so than nonautistic children. Bede, who loves water, had that reaction to our new aboveground pool, as follows:

Day One: Pool is set up. Bede jumps in the water, freaks out. Will not come near the pool again that day.

Day Two: Bede refuses to come outside when everyone else swims, cries when shown his swimsuit.

Day Three: Bede wants nothing to do with his swimsuit at first but wears it after much cajoling, and enjoys the kiddy pool.

Day Four: Bede puts his fingers in the big pool and dances away many times. He’s smiling.

Days Five-15: As Day Four. A few times I hold Bede in my arms and stand in the pool, but he becomes very agitated so I don’t press it.

Day 16: Bede puts his face in the pool several times.

Days 17 and 18: Bede doesn’t completely flip out when I stand holding him in the pool, and splashes a little with his hands.

Day 19: Bede gets in the pool! Gets out. In, out, in, out. For about an hour.

Day 20: Bede goes swimming!

my secret to easygoing parenting

Posted on by Phoebe Gleeson

I know you’ve often wondered “How the hell does she stay so calm with six freaking kids?”

I have a secret.

http://commons.wikimedia.org/wiki/Image:Disposable_foam_earplugs.jpg

It’s like a little piece of heaven for my ears. Just enough to make me be able to tend to Trixie screaming her fool head off because someone won’t give her a clothespin or a spoon or some trivial object. Without smacking her, I mean. Cause I guess that would be one way to deal with it but I’m agin it, you know.

Highly recommend them if you have the means.

Wherein I plead for votes

Posted on by Phoebe Gleeson

My friend C has a mom, like most of us. Like my mom. And very much like my mom, in one VERY IMPORTANT respect: they both really, really like this guy.

That’s Toby Keith, for those of you who don’t follow country music. He’s a native son here in Oklahoma. My mom and I saw him with stageside seats right as Should Have Been A Cowboy was climbing the charts, for free, at the State Fair, with about a hundred other people. Now his concerts are considerably harder to get into.

Which is where YOU come in!

C’s mom will win four tickets to see Toby in concert if her dog wins a contest. She’s in second place! Here are your instructions:

1. Go here.

2. Vote for dog #9. The little black dog with the enormous tongue. That’s Dog #9.

3. Refresh the page and do it again.

4. Repeat!

Autism Speaks silences autistic people, ironically

Posted on by Phoebe Gleeson

I don’t like Autism Speaks. They produced a film called Autism Every Day that interviewed the mothers of several autistic children, and while there are almost too many vile points for me to list, the very worst had to be where the mother of one of the children, with the child in the room, said she wanted to kill herself and her child, but she didn’t because she had her normal daughter to take care of.

I’m not putting words in her mouth, that’s what she said, with the object of her murderous thoughts right there in the room with her. You can google and watch the video, I don’t want to link to them. And then she said that every autism parent had had those thoughts.

So that’s how Autism Speaks feels about autism. They want to kill it – which means killing the people who are autistic, either in utero or after, it’s okay with them.

Just a few days after they released their movie of hate Karen McCarron killed her daughter Katie.

So, enough with the background on how awful Autism Speaks is.

Over at Aspieweb they’re being told that they can’t sell a t-shirt that says

“‘Autism Speaks’ can go away. I have Autism. I can speak for myself.”

because it violates a copyrighted design of Autism Speaks. Now I don’t know much about that law, but it sure seems that they can’t do that. So I’m posting about it. And later on I’m going to make a shirt available to buy.

Autistic characters in film and television

Posted on by Phoebe Gleeson

Here’s my speculative list of autistic characters in film and TV. It’s just what I think.

Dwight Schrute (The Office)
Sheldon (Big Bang Theory)
Remy (Ratatouille)
Spike (The Land Before Time)
Luna Lovegood (Harry Potter)
Gregory House (House, MD)

I’m sure there are others. Can you think of some I’ve missed?

EDIT:
From the comments we have:
Monk (Monk)
Max (Max and Ruby)
Napoleon Dynamite (Napoleon Dynamite)
Joon (Benny and Joon)
Arnie (What’s Eating Gilbert Grape)
Forrest Gump (Forrest Gump)
Juno (Juno)
Gilligan (Gilligan’s Island)
Jerry Espenson (Boston Legal)

The Good Morning America segment on autism acceptance

Posted on by Phoebe Gleeson

It’s actually pretty good. Really the only part that bothered me was the very last line. And also some garbage from the NIH guy too. Overall though it was good, please watch it. It’s linked in the post below.

The parts that bug me have one thing in common: people without deeply autistic children telling the world how parents of deeply autistic children feel. And furthermore getting it wrong.

ETA: Below I said I don’t like it when people say I’m “strong.” What I dislike is when the speaker means “…and I am weak.” You aren’t weak. If you had a disabled child you’d cowboy up and do what needed to be done too, I expect. I’m not super sainted mom. I just love my kids like everyone else, you know?

the look, acceptance and hope

Posted on by Phoebe Gleeson

So we’ve looked at a couple houses now. We’ve found one we like a lot, on a one-acre lot just south of Guthrie.

We’ve been taking the kids with us to look at stuff (mostly because we have to, and partly because we like to hear what they think too) and therefore Bede has been getting put in situations where he is expected to behave in certain ways: walk at the side of or very close to an adult, be relatively quiet, wear clothes, don’t touch.

Mostly he does not behave in those ways. He has about 3 to 5 minutes (I am being generous) of relatively compliant behavior before he becomes a puddle of yell on the floor, or a bolt of boy lightning charging for a fence. The houses with actual people still living in them are hard, because he isn’t permitted to examine the belongings of the owners to his satisfaction, nor is he allowed to run amok through the house. However he has kept his clothes on, which is great!

Anyway, he has a a hard time. If I am able to give him my full attention he does okay, even good, but I have 5 other children. Sean and my mother are there as well to tend to the other 5 but they still sometimes need me, so it gets kinda tense. Which is the point of my title: the look.

I think most parents are familiar with the look. You all have kids who behave in ways that others judge as bad in public, and at some point someone has glared at you disapprovingly. I’m used to that look, I’ve gotten it for years (I try never to give it, however.) And I’m pretty okay with it. If my job in life is to give someone else a reason to feel better about themselves, well, so be it. Not my problem.

But when Bede goes farther than a nonautistic child would, then I get the OTHER look.

The pity look.

I hate that look. Sometimes we get it with no introduction, but we usually get it when I say “He’s autistic. This is tough for him.” Then their look goes from anger to “Oh, you poor woman!” laced with “Thank God I’m not you!”

We do not want your pity. We want your understanding.

If you are faced with meeting an autistic child in distress, please don’t look sorry for the parents. You can express sympathy for the child in question, who is having a difficult moment, but please don’t look sorry for the parent. And don’t tell us we’re strong, or that you couldn’t do it, or whatever.

We’re just doing what anyone would do. Parenting our kids.

I guess a lot of this was spiked by the Good Morning America segment on autism acceptance. Diane Sawyer ends it with a bit of untrue treacle: “isn’t it [autism acceptance] a beautiful way of expressing heartbreak?”

No it is not. Acceptance is the other side of heartbreak, Diane. Acceptance is HOPE.

first time shame on you, second time shame on me

Posted on by Phoebe Gleeson

We have to move again because the landlord wants to sell this house. Argh! Renting. So we’re going to try to buy this time. We’ve been looking at modular housing from these guys (we especially like this floorplan) and now we need to find some land to stick a house on. We don’t have a time limit yet but I want to be proactive and move out before we have to. And I know how much Sean loves to move in the middle of the summer in Oklahoma! Not.

Oh golly. I didn’t notice what time it was. I have to run to get ready fer dinner at the ‘rents. Ta!

Loose Girl

Posted on by Phoebe Gleeson

Well, today my children were book orphans because I both started and finished a book. That hasn’t happened since the last Harry Potter, I don’t think. What was the book, you ask?

Loose Girl, by Kerry Cohen. It was excellent. Raw, and honest, and ugly, and beautiful. Really good read. Go get yourself one.