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.

interesting forum

This natural health forum is the latest place I’ve discovered for ahem, “alternative” medicine. I originally wrote a paid review of it for mturk and I’ve since given it a deeper perusal. It’s not too busy, but it has a dedicated bunch of regular posters. Sometimes I don’t want to go to Mothering.com’s boards, or I want another viewpoint. Sometimes I like to rubberneck the biomed autism cure crowd – they have a different perspective than I do, to be sure, but we all have autistic kids who will become autistic adults, and it’s my experience (very limited) that most parents come around to accepting autism.

I like the Nutrition subforum. I’m not as crunchy woo as some of my friends but I try to avoid GMOs in my food (no Roundup Ready for me, thanks!) and high fructose corn syrup when possible. It’s kind of nice to go to a forum where I am absolutely not the weirdest. Although, again, the Mothering.com nutrition forum, esp. Traditional Foods, has this one beat by a mile.

So that’s one of the places I’ve found. Any interesting places y’all have discovered?

Stop the R Word

My son is developmentally disabled.

Every time I hear the word “retard” or see it, or hear someone flippantly refer to something they dislike as “retarded” I wince inside because it stabs me. I have some younger relatives who use it as a default insult word, and I guess this is my passive-aggressive way to ask them to stop.

Stop saying retard.

Stop saying “ur so retarded!” in Facebook comments.

Eliminate the word as an insult from your vocabulary.

Please.

111

Stop using the r-word.

from my backyard

We’re outside today, it being near-spring weatherwise, but without the inconvenience of bugs. Ah! These few weeks each year are among my favorites. The number one attraction in our backyard is the bare earth area under the big tree where everyone goes to Dig in the Dirt. Dirt Digging is a Very Important Endeavor, you see. This year, Gloria is old enough to join the fray and toddles around with a stick and a smile.

Everyone is happy and well! Bede has his yearly check-in with his psychologist next week. I’m looking forward to it. He’s made such great strides in his development this year. He’s gone from the second most dreaded autistic behavior – poop play – numeous times a day, to zero play with poop and well on the way to toilet trained. (The most-dreaded autistic behavior is self-injury, of course, which we have not dealt with here.) He also is learning Arabic (!!) and working on first-grade math.

The other kids are great too. Faith and Abby and I have been doing something academically structured every day, with great results. I worked through a period of Great Navelgazing Angst as I dithered over whether or not I was an unschooler, and gave too much thought as to what you, the internets, would think of me. Then I decided I don’t care what you think, because my kids love it and are thriving and begging for more. So there. Now we’re extremely relaxed Charlotte Mason people.

This is already so long, I don’t think many will read it.

Gilbert and Trixie play together all the time. At 4 and 3 they are delightfully matched and often argue but always make up. Gilbert is very interested in ballroom dancing and airplanes at this time, and Trixie likes teddy bears and Mickey Mouse. They are so cute.

Gloria wants whatever anyone else has, and they tend to give it to her because she’s so darn adorable. Ah, to be the youngest with five doting siblings.

It’s getting a little chilly outside, must be a cold front. Time to head in!

a misunderstanding

Bede has a Dell Vostro 1000 notebook computer, purchased for him as a therapeutic device using his SSI back pay. Bede can be rather rough on electronics, to put it mildly, so we also got the super duper extra warranty that cost money. It has been a lovely little machine, performing just as expected since we got it last summer, and we had no use for the warranty. But it recently lost a few keys from its little keyboard, and by “lost” I mean “had pried off and chewed up.” Sigh.

So off I went to Dell Support, who have a chat support now – which is great. I entered my appropriate arcane numbers and whatnot and soon was connected with tech support. The tech said a new keyboard would be sent, no problem, and then said:

“Can I have the keys that have fallen off?”

Nonplussed, I said:

“You want me to send them to you? Sure.”

“One was eaten by a toddler though, I don’t think you guys want that one.”

Of course the tech said:

“Oh no, but I just need it for my notes.”

Oops! Hee hee. Riiiiight.

update

I realized yesterday that not only does Bede tolerate our singing, he actually likes it. A far cry from the boy who used to scream and put his hand over our mouths. We stopped giving him corn a month ago and I don’t know if it’s connected but he is much less irritable since. I don’t care to find out by testing it! We’re not avoiding all corn anything, just actual corn flour and corn meal. I get a terrible stomachache when I eat corn so we decided to give it a whirl after noticing his mood was horrible on Saturday afternoons – after a 4 bowls of corn based breakfast cereal.

Gloria has three new signs: milk, drink and more. She says mama, dada and points to other things when asked where they are. She has figured out how to push dining chairs over to a low alcove so she can then climb on the chair and reach a shelf. Sigh. It begins.

Abby and Faith will be taking acting and dance classes this spring. And maybe art.

Trixie is adorably contrary.

Gilbert is why? how come?

And now I am needed again!

meltdown

Meltdown: Informal. An emotional breakdown.

Bede had one tonight, and it was a doozy. We were getting ready to leave my parents’ house and he fell apart. Wouldn’t get dressed. Couldn’t tell me what was going on. He did manage to say “I DON’T WANT SHOES!!!” but nothing more specific. He sobbed, he wailed, he flailed, he moaned.

It was exhausting for everyone involved.

He kept scripting from his current favorite alphabet video, “Richard Scarry’s Best ABC Video Ever” “Oops, sorry Miss Honey! T is upside down! Waaah (sob!)” so maybe something was wrong like that. I don’t know.

He cried nearly all the way home. But when we got home, he was fine. He fell asleep about ten minutes later and is sleeping soundly on the futon.

I’m still a bit shaken. Whew.

Please. Use. Fewer. Words. Slower, Too.

Autistic brains process sound slower than nonautistic ones.

…researchers discovered what they believe are “signatures of autism” that show a delay in processing individual sounds.

That delay is only a fraction of a second, but when it’s for every sound, the lag time can cascade into a major obstacle in speaking and understanding people, the researchers said.

Imagine if it took a tiny bit longer than normal to understand each syllable. By the end of a whole sentence, you’d be pretty confused.

Researchers at Children’s Hospital of Philadelphia had 64 autistic children ages 6 to 15 listen through headphones to a series of rapid beeps while under the helmet-like device, which recorded the brain’s response to the sounds. Those brain waves, shown as highlighted areas on an imaging screen, were compared with responses in a group of non-autistic children.

In autistic children, response to each sound was delayed by one-fiftieth of a second.

Yet another reminder to speak slowly and clearly, and to wait for a response. I tend to pile more and more words on, when I don’t think I’m being understood, and in this case it likely just makes it worse!

yer late fer Mass agin!

An eternal criticism here. Sean and Gilbert went this week, a bit late. Sean and I have to tag-team Mass because we haven’t found anyplace that can work for Bede. I wonder if we will, or if it will just be how we do it until he’s a bit older.

It’s a difficult thing, autism and quiet pursuits. My Church compels me to go to Mass every Sunday and holy day, and I don’t get there very often anymore. I spent the last dozen times we went as a family in the church parking lot, walking laps with an autistic yelly boy and a (heavy) baby in the sling. There was nowhere for us to go. Bede is too big for the cry room* and lasted in the sanctuary for about 3 minutes.

When we went to Latin Mass at St. John Cantius in Chicago it was gloriously noisy. The whole place was packed, on a regular day in Ordinary Time. There were people waiting in line for confession during Mass, and at least two slightly unhappy babies making noise at all times. We fit right in there. Even with an autistic yelly boy, we’d have been just fine.

But here I just don’t know. I talked with my friend about it a while back, and she suggested a certain church in Midwest City, east of here. Apparently the priest there was open to a “special needs Mass.” I think that’s a really great idea, but we need Mass every week, and we’d much rather be welcomed and included, in a non-intrusive way, than given our own special Mass. Another priest at the church we used to attend told us that the earlier Mass was much noisier than the late morning one we had been attending. It would take some work to get everyone happily out the door in time for a 9AM Mass on the other side of town, but we should probably give it a shot.

It’s difficult. Bede has no social filter and not much language, so when he doesn’t like something he is very loud. And when he does like something he’s loud. He needs an adult giving him all the attention to be able to do something like that, to not bolt, or fling hymnals, take off all his clothes etc. That leaves Sean with five other children, one a ten-month-old. Not feasible, really.

I guess we’ll keep waiting.

*For my readers unfamilliar with the term, a cry room is a small room, usually pretty soundproofed, with a view of Mass and an audio speaker so you can hear the priest. It’s intended for parents and kids under about 3-4, I’d say. I haven’t ever been to a Protestant church but I’m told that usually kids too young to sit relatively quietly through the service are in the nursery. Some Catholic churches have nurserys but it’s far from  universal, especially given how many kids Catholics have. It’s certainly not unusual at all to see many, many small children in the church during Mass.

busy, busy

I’ve been so busy! I had several friends encounter trials last week and I was trying in my small way to be a help. Whew. I think today I have a chance to take a breath.

So!

I’m told some of you thought my brief protected post (now gone) was because I’m pregnant. I’M NOT! Besides, don’t you know I am unable to keep any secret like that for longer than it takes to get to the computer from the bathroom. Gee whiz.

I’m working on Christmas knitting. I may get Sean’s sweater done, but I doubt it. However I am finally, after I think 7 tries, delighted with the project as it stands and look forward to knitting it. I kept trying OPP (what are you implying? that means Other People’s Patterns!) but you know me. I am unable to knit anything as written. So once I committed to having to write the whole thing myself, and did it, I am in love.

Gloria says “Mama!” I know that’s not momentous or anything, but she is the first of my many children to say my ‘name’ as her first word. I am besotted. She’s also standing briefly without support, and eating anything she can get her little mitts on.

Trixie is copying anything that Gilbert does, even when it makes no sense. And tells us “No! I NOT BE QUIET! YOU BE QUIET! SHHH!” I think she is the most like me as a child…

Gilbert is between the world of Little and Big. Four is hard on a four year old. His imaginative play and plot development have exploded in the last month or so, but most days he is upset because he feels too big for the littles and too little for the bigs.

Bede is so delightfully flexible these days! Such a change from the boy he was a year ago or so. When things don’t happen like he wants, he either gets upset and gets over it or, and this is huge, thinks of a solution. It is wonderful. We can watch movies as a family on the television now, among other things.

I planned to tell you of the big girls too but Gloria fell down and wants to nurse. Faith and Abby are both well, and I’ll give details later. Ta!

Stop Jenny!

Found via Autism Vox: http://stopjenny.com

Good luck with that. I think she’s unstoppable. She bugs me with how she makes life with autism seem to be a fate worse than death. It’s not.

It’s actually quite good.

ETA: In the interest of full disclosure I’ll remind my readers that we delay and selectively vaccinate.

FURTHER EDIT: And Bede was diagnosed as autistic at age 4 and had received no vaccinations.

Closing Logos wiki

I was trying to find the name of that book Bre liked so much, Melissa #2, about PBS? And I found this site which is awesome!

http://www.closinglogos.com

They have all the station idents and studio logos you can think of, and they include the ‘scare factor’ for each one. I thought I was the only one creeped out by that kind of thing.

Bede loves station idents and studio logos almost as much as he loves fonts. He’s been reproducing them as well. So far he’s right on track for a career with his daddy in graphic design. He makes a mean PBS P-head – complete with intoning, “This is PBS.”

toilet thoughts

Bede’s still at it. He’s far from perfect, or consistent, but he’s really doing great.

Dawn asked if it was bittersweet, or if I was just so glad he’s using the potty. Dawn, to be completely honest I guffawed when I read that. He’s been peeing and pooping everywhere in the house for the last two and a half years since he learned how to remove his clothes and diapers, and yours truly has been cleaning it up. He went through a lengthy phase of throwing poop on the ceiling, too. (SOOOO NOT A GOOD TIME. Ahem.) So no, I am not in the least bit anything but 100% thrilled.

Jennifer said she felt a little jealous. Jennifer, I have felt jealous of you guys and Zane’s communication and his relative calmness compared to Bede. I think the lesson here is don’t compare auties. Bede has gotten this because of Gilbert, I’m pretty sure.

Everyone – thanks for your support and well wishes.

stim city

I used to really dislike the word “stim.”

But now I don’t.

That said, Bede and Faith are Stimmy McStimmersons. Bede is running back and forth in the living room shouting out “Cheerleader! So and So! What’s Her Face! The Ugly One!” over and over (yes, I let my kids watch Homestar. I am a baaaad parent.) and Faith is spinning in circles. Faith is getting Aspie-er and Aspie-er as she gets older. Just like her ma. Ahem.

Calm down guys! Gee whiz.

hard day

Today has been very difficult. Bede has been unsettled all day, and inflexible. He used to be like this pretty much all the time, and it’s made me realize how different he is now than he was a year ago or so. With children you don’t see the big picture unless you look for it, because you barely notice the incremental progress each day. That’s true of all my kids, not just Bede.

Anyway, he’s had a terrible, horrible, no good, very bad day, which means I have too. It’s made worse by having no place to put Gloria for a nap right now, so if she’s not in my arms she wakes up pretty much instantly. It’s developmental for my kids to do this at this age – I think it’s related to separation anxiety and learning to be mobile – but it’s not any easier to deal with. Especially in this particular house, where the location of Gloria’s room and the stairs combine to make it damn near impossible to get her to nap. Sigh.

But back to Bede. Since we had to put away the swimming pool he’s been having a difficult time. At least I assume that’s it, since he’s not getting the lovely deep pressure from the water every night. I’m going to get some beanbags I think. They’ll get peed on and drink dripped on and so forth very quickly, so I need a waterproof bag with a washable cover. Also going to get a full size futon for the floor in front of the tv to use instead of a rug. I love my rug but it’s gotten peed on and drink dripped on just like everything else in my house and it’s difficult to clean because of the deep shag pile. If I got a futon the kids could sit on it, fall asleep on it, be rolled up and squished with their heads sticking out while they giggle uncontrollably, etc. And with a waterproof cover with a washable cover for it over that it’s easy to clean.

All of this doesn’t convey the difficulty of the day, and frankly the last week or so. I think Bede has spent about 3 hours crying, moaning and screaming from about fifteen minutes after he woke up to about thirty minutes ago. The climax was Bede biting Trixie on the thigh REALLY hard, enough to break the skin in a few spots, her screaming in agony and me instantly snapping clean. in. two. seeing red and literally chasing him around the house roaring NOOO BITE! while I took about three stinging slaps at his rear end and he cried and cowered. Long time readers of my blog will recall that I am NOT a spanking parent so I see this as a HUGE failure, culminating in Bede reinacting the whole event by biting his arm, saying “No bite, Bede!” and then smacking himself on the leg and crying. Also, “Ouch, Mama!” So, yeah, I feel like a complete and total bullying jerk. I know he hurt Trixie and all but I should not have reacted the way I did. He seems to have forgiven me as he climbed up in my chair and hugged me but he has little psychological choice in the matter, what’s he going to do, divorce me and get a new mom? I guess I need to work on forgiving myself. It’s not likely to happen for a while.

Just generally an awful day. I hope tomorrow is better.

superbrain for superboy

Bede is very intelligent (self-taught reader by age 2, hacks our passwords frequently) very autistic (unable to carry on a conversation, refuses to wear clothes) and very disabled (must have 1:1 aide in public and constant supervision at home.) He is quite the puzzle, to use a tired metaphor. So it was with great interest that I read this in the Telegraph: Autism is caused by a ‘supercharged’ mind.

Children who develop autism have “supercharged” brains that are so clever and sensitive that they make everyday experiences utterly overwhelming, new research claims.

“Our hypothesis is that autistic people perceive, feel and remember too much,” Kamila Markram told the New Scientist.

Faced with this “intense world” , autistic infants withdraw, with serious consequences for their social and linguistic development, she added.

Repetitive behaviours such as rocking and head-banging, meanwhile, can be seen as an attempt to bring order and predictability to a “blaring world”.

Most of the theories surrounding autism involve the idea of an underperforming brain but the Markrams believe the opposite is true with the brain being “supercharged”.

Their research, which included studying their own son who is borderline autistic, is backed up by one of the most replicated findings in autism which is abnormal brain growth.

At birth the brains of autistic children are small or normal sized, but grow unusually quickly.

By age two to three, when symptoms of autism occur, their brain volume is roughly 10 per cent larger than average.

Sounds right to me.

Finger-flick to Autism Vox.

retail therapy

I guess it’s not really therapeutic if you need it. And it’s on super sale. But aaaanyway. I bought shoes for the boys for winter from oldnavy.com – they have some good deals if you’re not picky about specific style. Gilbert got some dragon hightops and Bede got wavy pull-ons. Now they need socks, which I confess confuse the hell out of me with their sizing. So I didn’t order any yet.

And Bede needs a coat, but I think everyone else can get by on last year or handmedowns. In theory Bede could wear a handmedown but the only ones for his size are silver and lilac or pink. And he doesn’t care, but Lord knows he gets enough looks without also getting the hairy eyeball for wearing a feminine colored coat. Boy needs a boy coat, you know? (Anything I can do to painlessly unweird Bede I do. If he insisted on the pink or silver-purple coat that’d be one thing.)

And now Faith needs the computer back!

Sound bite

Everything is Trixie’s. “Hey! At’s MINE dolly!” “Hey! At’s MINE chair!” And my personal favorite, when she sees another kid in my lap if she has recently vacated it, “Hey! At’s MINE holdyou!”

Gloria is commando crawling everywhere. And very interested in food.

Gilbert is reading, thank you Starfall.

Faith is very indecisive about her Halloween costume and has become interested in costume design.

Abby is writing adventure stories, mostly fantasy, and some poetry.

Bede is watching old television station IDs and movie studio IDs on YouTube. Like this, I mean. For hours.

And that brings you to now.

Scarves for Special Olympians!

Coats and Clark is trying to get enough scarves for every Special Olympian in the 2009 Winter Games, and you can help! The scarves can be any design, knit or crochet, but must be in delft blue (885) and white (311) Red Heart Super Saver yarn. More information can be found at the Coats and Clark website.

I think we can manage at least one, with three knitters in the house – Abby learned too!