Alarmingly Buttery Brown Sugar Cookies

We made these today. Bede loves rolling the little dough balls in sugar (we used red, green and white) and we have now eaten enough to be faintly ill. Oof. He got so into it though, the whole process of dough ball to sugar to sheet, and patiently waited his turn between the other kids. Good times.

Brown Sugar Sugar Cookies – Large Family Edition

5.5 cups flour
2 teaspoons baking soda
1 teaspoon baking powder
2 cups butter
2.5 cups brown sugar
2 eggs
Small amount of white sugar for garnish, optional

Make sure the butter is really soft. Cream the butter and the brown sugar, then add the eggs. Add the flour a cup or two at a time, and add the baking soda and powder along the way. Roll the dough in tablespoon-sized balls, then roll in sugar if you like. Place on baking sheet and bake at 350 for 10 minutes. Makes a lot, but we ate too many to get an accurate count, sorry. 80 cookies? 90?

One day at a time

Having a rough time around here these days. I don’t post much about the extremely difficult times parenting an autistic child can bring, in large part out of fear that I am invading Bede’s privacy, but I don’t want to mislead anyone into thinking that it is all roses here all the time.

In the last month Bede has had difficulty regulating his sensory needs and has been mentally and emotionally inflexible. It started with the toilet woes we experienced. I thought it would improve once it was fixed (ish) but it has gotten worse. He is having meltdowns several times a day and sensory seeking in very problematic ways. He’s biting the skin off of the soles of his feet. He’s unable to move past things without a lot of upset for all.

I’m really worn out.

Usually, he goes through a period of dysregulation and then has an enormous developmental gain. Kind of an autistic quantum leap. The last time this happened he learned to use the toilet consistently, began wearing clothes and taught himself to transliterate Arabic and Hebrew. I told a friend today that he was in safe mode, where none of the network settings are right and the resolution is all weird. But soon he’d reboot and be a whole new version of his OS! She said I was a nerd. I don’t know what will happen this time. I have a feeling it will be a good thing overall for Bede but is so hard for him right now.

When you live this life that I live you have to learn to let go of your expectations. To be pleased when something changes in a positive way and not dismayed by it remaining the same or regressing. I’d say it’s very Zen if I knew what that meant. But I don’t.

I’m still learning to let go of expectations. A while back I let go of the one that said my oldest son would do anything more than what he can do today. I try to be just fine with Bede as he is right this very minute; if he doesn’t change I’m okay with that.

That took a long time to be okay with.

Now I have to learn to let go of another expectation, ironic in light of the first: that Bede will always be the way he is today. Because the other side of that first expectation is the assumption that there will only be stasis or forward motion, no backsliding. We’re backsliding here. I knew intellectually that that’s very common in autistic children but I wasn’t ready for it.

So anyway, that’s where we are, and why I’m quiet. Trudging the road of happy destiny and loving my beautiful kids where they are, all of them.

Complicated Gallifreyan Bede

New haircut.

Such a pretty boy.

food dye: why, again?

We’ve had a rough day. It may be confirmation bias showing to say what I think is the reason why: food coloring. Today, for the first time is a long time, the kids had copious amounts of your friends and mine: FDC Red 40, Blue 1 and Yellows 5 and 6. And Gilbert and Bede were, ah, difficult to parent today.

So there’s that. Or they could be coming down with something. Or maybe they’re just Little Boys 5 and 6.

Ah, Gloria wants to nurse. Perhaps I’ll write more later. Project: Mittens 2009 is coming along nicely, for those playing along at home. I’ll get pictures tomorrow when the light is nicer.

know your market

Some LDS missionary boys came to visit today. They’re so cute. It kills me that they’re “Elder” when I’m twice their age. One was Elder Bill and the other was Elder L-something-Venezuelan. They were pleased with my large brood and the fact that we homeschool, and no doubt disappointed that we’re staunchly RC.

Bede was very interested in them because they offered him a book and some prayer cards but mostly because they had nametags. “ELDER BILL ON YOUR BLACK PIN!!!!” he noted, and then in a delighted undertone, “Helvetica. Mmmhnnmm!”

That’s my boy.

go with the flow in more ways than one

The plumbing issue continues to plague us; we have misaligned pipes. With a little lip of pipe for things to catch upon it’s no wonder we keep having trouble. I think we’re going to see about buying our own power auger.

Sean had a second interview today at the same joint he was at earlier. The intervening days have given me time to get used to the idea and I’m now 90% excited and 10% anxious, and officially hoping he gets the job. I reckon we’ll find out next week. He said the interview went well.

Tonight we had a simple potato soup and homemade bread. One of those delightful plain meals that get overlooked for more sophisticated fare. Potatoes, onions, milk, butter, salt. Honestly, what’s not to love? I made enough to feed our army with a bit left over and then some – I had planned to feed my niece and her boyfriend as well as the Gleesons, and he was unable to make it. So there’s enough for lunch tomorrow as well! Yum. It’s especially good with grated cheddar in it.

Bede had another rough day. He seems to be ‘stuck’ more than he has been in the recent past, and gets more and more agitated as the perseveration goes on. I find that it’s very difficult to break him out of it once he gets started, and even if I do he’ll return to it later with renewed insistence and frustration. Whenever possible we have been trying to avoid situations where we have to bluntly say “no” and instead we are smoothing the way beforehand – keeping things he will become agitated about out of sight, attempting to compromise in the early stages of a ‘moment’ and so forth.

I am not unconditionally saying okaysure! i getchoo whatever it is you want! because I don’t like the precedent it sets in his mind: if I am insistent enough, loud enough, physical enough, I will get what I want. Sometimes there are just “no” moments: you cannot sit on your siblings or assault their persons; you cannot eat food, chew it to a pulp and spit it on the stairs; you cannot do many things. And so on. So when they occur I try to Just Be with him, consistent and kind and empathetic.

The hardest part about these times, beyond the episodes themselves, is the uncertainty of the peace when everything is calm. Knowing that the calm can be shattered any moment by an upset seventy pound autistic boy is more than a little nervewracking. I am on edge and jumpy, which makes things even more tense, and Bede more likely to react in kind.

All the more reason to keep the peaceful, easy feelings in the fore…

There Are Cats In This Book

That’s the name of Bede’s favorite book. Have I discussed this before? I don’t think I have. It’s a REALLY GREAT BOOK. Did you like The Monster at the End of This Book? Then you’ll love this book. Bede acts it out constantly, redraws it with other beasts and beings (There Are PIXAR Lamps In This Book, etc) and it has given us a whole new world of bridging scripts upon which to drape deeper meaning. Abby has drawn several semi-sequels and derivative works. Faith still chuckles at it, at age nine. Trixie and Gilbert love it too.

Go buy it immediately. If you hurry, you can get it hardcover at bargain book price – $6.80. Go on, go!

A story in four parts, by Bede Gleeson

Bede made this little vignette today while we were carving pumpkins. It stars Buster and Babs Bunny, of Tiny Toons.

Buster and Babs Bunny, in Halloween costumes(?)

They see pumpkins, wow!

They go to the pumpkin patch (they seem to have left their costumes.)

And then a pumpkin explodes! Ewwww!

-FIN-

Bede’s speech: October edition

Y’all liked these last time, so, here’s a few more.

Upon seeing one plate of regular and one of silver dollar:
Uppercase pancakes and lowercase pancakes!

Watching me wind yarn with a ball winder:
It’s zoetrope on your yarn!

Climbing a wrought-iron spiral staircase:
Bede! Climbing on your DNA!

After writing his name in the style and colors of Google:
BedeGleeson! Advanced Search! Language TOOOOOLS!

locked up

We have many more locks and gates in this house than most houses do. We’ve taken some down recently, but in the last year this would have been the house you’d see when you visited.

On our front door we have two locks. One is a sliding deadbolt set six feet up. That one is locked all the time, no exceptions. Underneath that we have a combination padlock. That one is locked whenever I leave the first floor of the house.

Moving on into the dining room you pass the stairs, where there’s a gate at the bottom. (All our gates are fully custom Gleeson jobs and are solid boards that slide in and out of place. There are rails for a gate in the doorway to the dining room, but we don’t keep that one up all the time.) So, now, in the dining room. We have rails installed behind the chairs so that babies can’t slide them out and use them to climb over the aforementioned gates. To get a chair out, you lift it up two inches over the rail bolted to the floor. Babies are highly intelligent but they tend to be a.) inexperienced and b.) weak. This thwarts them most excellently.

You’ll see the door to the kitchen there to the right. It’s also secured by two locks, the always-locked deadbolt and the unattended combination lock. In the kitchen is a door that leads to the backyard, which is also double locked, and a door to the basement, which is combination locked.

Other locks include the six foot lock to the coat closet and the lock bolting the TV to the wall. Our old CRT TV was bolted to the TV stand which was screwed into the floor, but we got one a them fancy flat screens now. Other things bolted to things include all furniture large enough to fall and crush someone, so all the bookcases are, you guessed it, bolted to the wall.

And that’s just the downstairs! I’ll cover the upstairs in a later post.

We came, we saw, we left without incident

What’s the Latin for that one?

Bede was pumped about the movie. Before we left, I wrote our telephone number on his back in Sharpie, just in case we got separated. You never know, and he can’t communicate well enough to convey that sort of information.

We pulled into the mall lot and he was vibrating with excitement. He saw the poster as we approached the theater and I let him break loose and go jump up and down in front of it and hum as he chanted the character names and peered through his fingers.

We were getting some looks by this point but so what. He was so happy. Most of the looks were for his unusual, ah, behaviour, but some of them were no doubt due to his clothes: a big red tee shirt, men’s trousers cinched in at the waist and rolled up, blue Crocs, all topped off with an enormous brown hat with a tan brim – his “Scrat acorn hat” he requested I knit for him.

An older woman approached us and said “Is he autistic?”

I resisted my momentary contrarian impulse to say “No” (hee hee) and smiled instead. “Yes, he’s autistic. He loves the Ice Age movies, and this is the first time he’s ever been to a theater, too.”

She said “Oh! I thought he was. I’m a substitute teacher and I just love working with autistic children.”

I smiled and started to guide Bede toward the ticket booth. She said, to Bede, “You are the most beautiful boy I’ve ever seen!” and we parted ways. When we got to the line, a nice man offered to let us cut, and we bought our tickets and headed back to the theater.

The auditorium was dark and the previews were playing VERY LOUDLY when we came in. Bede was a bit taken aback by the darkness and the noise, but came in and we sat fairly close to the front. “You want some turn it down?” he asked me. I said it was loud, but it might get quieter (it did.)

He was rapt throughout, humming and bouncing a few times, but mostly quiet and still. He hid behind the seat in front of us when it was scary, or peeked through his hat. As the movie was wrapping up he said “Ice Age is The End” and smiled.

Then, we left.

Whew! Yay Bede!

ICE AGE 3 ASDFJKL!!

Scene: Gleeson home, dining room.

Me: Hey Bede!
Bede: (skipping by) Hmmhnnnhmm!
Me: Tomorrow, you wanna see Ice Age 3?
(Bede stops short)
Me: In the movie theater?
(Bede smiles widely)
Me: With Manny?
Bede: And Ellie?
Me: Uh-huh.
Bede: And Crashandeddie?
Me: Yep.
Bede: And (hops in place) SCRAT!!
Me: Yeah!
Bede: OKAYSURE! I GETCHOO ICE AGE 3 DAWN OF THE DINOSAURS IN YOUR MOVIE THEATER!! HMMMHNNHMM!! (squeal!)

Soooo tomorrow Bede and I are going to see…

Which is finally at the dollar cinema. It will be his first time ever in a theater. Wish us well!

Sky Walker competency trial

On January 29th, Sky Walker was arrested for assaulting his mother. She died about a week later, and he was charged with her murder. Sky is 18 years old and profoundly autistic. His competency trial was this week.

The whole thing is heartbreaking.

http://blog.cleveland.com/metro/2009/09/kent_state_university_professo_1.html

Where is Sky’s dad?

Bede’s speech

Aside from occasional appropriate use of I and my, Bede’s pronouns are always reversed, and his language is pretty weird. He’s internally consistent though, and he tries so very hard to communicate with us – as we try to communicate with him. Here are some recent dispatches.

Requesting grape jam on his toast:
Grape jelly your jam?

Can’t find his DVD remote:
You want find it your remote?

How I’m awakened each morning:
Wake up Mama! Open my eyes!

Dismay at Trixie’s refusal to wear a certain sweater:
Trixie wear it ON the yarn shirt!

Plaintive request:
You want it pbskids dot org on your Mama’s Dell?

Seeking kitchen entry:
You want go kitchen? Okaysure, I get you go kitchen!

Asking for ten small pieces of yarn:
You want cut with your ten yarn?

He usually gets his point across, and he’s pretty patient for a complicated Gallifreyan boy. Love him so!

Glenn Reynolds, autism expert

I was reading the October issue of Popular Mechanics (theme: disaster preparedness! survival! which really turns my geek crank!) and I ran across this, by Glenn Reynolds – page 48.

Here’s a simple truth: It’s better to bend than to break, and it’s best to be prepared for the worst. This age-old wisdom is going by a new name in slide-rule circles: “Resilience engineering” starts with the insight that it’s smart to design and maintain systems so that they have some give. That means building technologies that offer extra capacity to handle sudden loads, plenty of warning when normal operations are beginning to break down, backup systems in case things do go wrong, diverse digital architectures so that a single bug doesn’t produce widespread failure, and decentralization so that when (not “if”) communication breaks down things don’t grind to a halt.

And that seems to me to be a perfect, perfect description of parenting an autistic child.

PBS shirts

Bede draws the PBS logo a lot. He changes it around and makes a whole family of P-heads. He gives the P-head a different look, like a PIXAR lamp P-head, or a Scrat P-head.

I think he would really, really like this shirt. They don’t come in kid sizes, but he’s a pretty big kid, and he likes his clothes loose. An adult small will be too big but not unwearably so. And all he’s doing is growing… This is going on his Christmas list for sure.

nudgeschooling

The school year is upon me! We don’t stop schoolin’ in the summer. As unschoolers we neither stop nor start the whole “formal learning” gig, but keep about the same non-pace throughout the year. However, when the conventional schools are in session, I try to get a little more nudge-schooly in my approach. I like the kids to do something measurably academic each day, and if they don’t do so themselves I nudge them into it. Hence, nudgeschooling.

I’m definitely going with Teaching Textbooks for Faith’s math. She wants to stay at grade level for math and not fall behind her friends who are schooled, and she really enjoyed the website preview for Math 4. When we can afford it we’ll be getting it, probably early October.

Abby liked it as well, but she’s a little behind Faith in math. She likes Miquon and hasn’t yet finished the whole set of books so that’s probably going to be her thing this year.

Everyone else will just tag along and do what they do with no formal plan. We’re still working through the Sonlight Core 1+2 we started in February, so I’ll pick back up with that. We all love it since it’s reading together and discussing stuff as a family. I kind of forget it’s “school”, frankly! It feels like we’re cheating. Abby’s favorite thing to do for dinner conversation is “Let’s everyone tell about the book they’re reading, and why you like it.” Love me some Sonlight.

Bede has been wearing clothes (!!) I’m still processing. I told Tabitha now he won’t be the weird naked kid, he’ll be the weird kid who wears men’s trousers belted and rolled up at the cuffs. An improvement!

ICE AGE: a desperate plea

My oldest son, Bede, has developed a deep and abiding passion for all things ICE AGE MOVIE. Most super especially SCRAT, the little acorn-obsessed squirrel. Bede is 6 and a half years old and is autistic, and has *never* had this sort of reaction to anything traditionally child-oriented. (His usual thing is fonts and type design.) I am also excited about this because he wants to wear clothes with ICE AGE themes and he does not usually want to wear clothes at all. (He has been naked 90% of the time for the last 3 years. No kidding!)

We are Very Very Poor. We own both movies on DVD. BUT. If anyone has any ICE AGE stuffs they want to get rid of I would love to have it. Any toys, from Happy Meal on up, any clothes (adult sizes fine too), any books… anything! I can’t pay you a single cent because I don’t have it.

A million thanks in advance. I can be reached here or at phoebe@gleeson.us

(crossposted: like whoa, sorry)

cookie coma

Bede asked me to bake cookies yesterday, so that’s what we did today. He asked me by placing a storebought cookie on a baking sheet and declaring “make cookies HOT!”

Oatmeal Chocolate Chip Cookies (Large Family Edition)
Makes About 100 Cookies

4 sticks butter, room temp
4 eggs, room temp
3 cups brown sugar, packed
1 tablespoon vanilla
2 teaspoons cinnamon
2 teaspoons baking soda
3 cups all-purpose flour
6 cups oatmeal
1 package chocolate chips

Preheat oven to 350. Mix butter and sugar, then eggs and vanilla. Add flour and baking soda, mix well. Add cinnamon and oatmeal, oatmeal in two parts. Rest your hands from all the stirring to make sure the cookie sheets are clean cause at my house they never are, they’re on the stove still dirty from the garlic toast. Finally, add the chocolate chips. Drop rounded spoonfuls on ungreased cookie sheet and bake for 9 minutes. They’ll be lovely and flat and chewy with crispy edges. Then eat so many you pass out.

They taste the best if you have a little autistic boy capering about chortling and saying “cookies HOT! ee hee hee hee hmmhnn!” but I understand that may not be possible, pity.

LEGO logos

Bede shows us his latest efforts in movie studio logo reproduction:

Gloria is always ready to assist: