Angry Birds and Poetry

Damon and Anne like to play Angry Birds on the computer.  (We don't have smart phones or ipads or anything cool--we're so last decade.)  Anne has tried to convince Damon to launch the eagle.  I guess it's an effective weapon against pigs or blocks or something (I don't know.  I've never played.).  Damon refuses.  He says it's disrespectful, the eagle being our national bird and all.

Different topic:  I was in Claire's classroom for a little while yesterday observing her progress.  She liked having me there and didn't want me to leave.  When she got home that afternoon she told me, "I was sad when you left, so I made up a poem to help myself feel better:

If we went to the neighborhood of a hare,
then what would we see there?

A blueberry bush and a kitten,
a horse and a flea,
the the cutest little puppy
that you ever did see."

To help motivate the kids (Claire) in school, we've told them they can earn pet geckos if they achieve their (Claire's) goals--10 days of goal reaching to get the cage, 15 days of goal reaching after that to get the geckos.

Geckos were Ange-babe's idea (Thanks, Angela!).  The kids are excited.  I'm excited, too.  I just found out geckos can live 25 years.

A Typical Dinner

I made tomato soup for dinner earlier this week.  While it was cooking, Claire asked me to lift her up so she could see what was in the pot.

"What is it?"

"Tomato soup."

"I thought it was spaghetti!  Why aren't you making spaghetti!  You tricked me!"  She ran away in a rage.

"If it smells like spaghetti, maybe you'll like it," I called after her.

Later the kids and I sat down to eat.  (Jake was still at work.)  Before the kids could get too far in their verbal abuse of the soup I said, "I don't want to hear anything except 'Thank you, Mom, for working so hard for us every day and making us dinner.'"

Damon and Anne dutifully thanked me.  Claire cried, "I can't do that!"

"Then just don't say anything, Claire."

"I have to say something to make myself feel better."  She dipped her finger in the soup, licked her finger and added, "Nice try, Mom, but it could have been better."  She didn't have anymore.

And I let it slide.  It was better than a melt down, so I'm going to call it progress.

Damon tasted the soup without eating it, but he didn't complain, either.  Anne had seconds and thirds.  I love that girl's tolerant taste buds.

The Presidential Campaign

I've probably mentioned before that Damon is a talker.  If he's not talking about interest rates, demographics, or how much money Jake makes (Jake considers this an intrusion of privacy and refuses to discuss it), Damon's talking about the presidential election.  Yesterday, his comments on the election prompted Claire to say,

"I hope Mitt Romney loses."

[Gasp! My child is an apologist and a socialist!]  "Why, Claire?"

"Because I want Dad to win."

[Sigh of relief...hey, why doesn't she want me to win?!]

"And then we'll all be famous."

Anne was on board with that.  Here's her campaign poster:

Anne gets confused.  She isn't sure if Claire has Jake running for president, king, or prophet, but she does know that when he wins, we'll all be wearing crowns.  And Barrack and Mitt (the colorless guys in the middle) will be upset.

Here's Claire's poster (Jack H! means Jake Henderson!):

Parents who think their children are brilliant are so annoying, but when their children really are brilliant, it's less annoying, right?  The guy on the left is Obama the donkey.  The guy on the right is Romney the elephant.  They're both saying "Boo." How does she know about party symbols?  I don't know!  She had no help or coaching with this drawing.  I love the hands on the bottom.  From left to right, they're clapping, handing Jake a trophy, a ribbon, and money.  So Jake could be a communist, a socialist, or a capitalist, since all three are after accolades and money.  But once again he's being crowned which leads me to believe that although there's an election going on, Claire and Anne are more interested in monarchy than anything else.

It's fun to swim at the YMCA

I thought I was going to be a daily blogger for a few days there, but it turns out I only blog when I'm avoiding something I don't like and that can be put off.  Right now I'm avoiding making a grocery list and going shopping.

Last week was the beginning of summer break.  I bought a YMCA membership and the kids and I swam there a lot last week.  Damon and Anne and I enjoyed it.  Claire is still terrified of the water, even after 10 days of private lessons last summer.  At the Y I strapped plenty of floaties on her, more than Anne had on even.  Anne paddled all around having a great time.  I tried to convince Claire she could do that, too.  She screamed, cried, sobbed "You're torturing me!", and clung to my body or swimsuit like, well, like a drowning person.  (Don't worry--my swimsuit is very sturdy.  Not one of those flimsy things girls wear to showcase their hot bods.  No matter how hard Claire pulled, she'd never be able to expose anything.)  A swim instructor was so concerned she left her class of little kids to give me some tips on how to acclimate Claire to the water.  Sigh.  We're gonna keep trying, though.

Once we're out of the pool, though, Claire really shines.  The girls and I go in the women's locker room to shower and change.  Damon goes in the men's locker room where I hope he rinses off, and then he waits for us, dripping, in the hall.  He WILL NOT change in the locker room.  People would see him naked.  I remember how horrified I was when my PE teacher made us shower in the high school locker room, so I try not to make a big deal out of his shyness.  Even Anne hates getting dressed in the locker room.  She somehow manages to shove herself in a locker (maybe 8"x18"x8" small) and get dressed in there.  It's amazing.  But Claire and I are able to get dressed like normal people.  Claire's an interesting mix.  At the kindergarten program two weeks ago she was very nervous to have everyone looking at her.  She kept turning away from the audience to shelter herself.  But in the locker room she doesn't worry about it, and at the pool, she's not bothered a bit by everyone staring while she screams her head off.

state of being

Damon, AKA mini-Jake: likes money, especially saving it.  Worries about inflation, and believes the government should not allow it.  Sometimes asks if I've paid the credit card bill yet.  Gets upset if he doesn't get to bed early when he has to get up early the next morning.  Master Chung calls him a serious student of Tae Kwon Do, and believes he has the potential to be a black belt some day.

Claire: has a hard time going to sleep before 10 p.m. if I don't give her melatonin, unless she has had a lot of exercise.  Getting her to exercise a lot is difficult.  Is "excited and nervous" for 1st grade. (She met her 1st grade teacher and classmates last week.  From what I can pump out of her, none of the kids I requested are in her class.  I can't get a class list so she can start making friends over the summer because that is illegal.  I swear the school admin's primary goal is to thwart us at every turn.  %#&*@!)

Anne: says she doesn't sleep at night, but does an excellent job lying motionlessly and noiselessly in bed from 9 pm to 7 am with her eyes closed.  Really wants a cat for a pet.  Finally lets me listen to whatever music I want in the van.  We went through a rough patch where songs had to be "wild."
Wild= The Cars, J. Geils Band, Bon Jovi, John Cougar Mellencamp (sp?), The Beatles, The Police, Mad Outlet, anyone with a heavy beat and questionable lyrics. (I like some of their music, too, but I don't allow songs like "Angel in the Centerfold" in my car, which broke Anne's heart.)
Not Wild= Adele, Jimmy Buffett, most classical music.  If she grows up to be a porn star, it won't be my fault.  If she grows up to be a tattooed alcoholic searchin' for her lost shaker of salt, heck, it could be my fault.

michigan beach

Saturday we went to South Haven.  It was a good day.  The kids' willingness to smile for the camera is matched only by my amazing photography skills.  Whoops, there goes Lake Michigan, pouring onto Canada.

Whoa, now it's headed for Indiana, or whatever is south of us.

sandbox

"Aren't the kids getting too old for a sandbox?"

Jake asks silly questions sometimes.  My idyllic childhood included a sandbox, so obviously my kids need one.  "I played in one until I was 10," I told him.

"So Damon will play in this for one year."

Damon is nine already?  Sheesh, those years slip by.  "Oh.  Well. I probably played in it until I was 15.  And if the kids don't play in it, then I'll play in it myself."  And I have.  (Wow, am I awesome at castles and moats.)  The kids have played in it, too, including Damon--he was at school when we got the sand in and I took pictures, though.  So there, Jake.

Here's where I started wishing we'd put the sandbox in the front yard like the garden.

 

If there's some secret to getting your kids to pose in a non-weird way, I wish someone would let me in on it.

Pictures

Damon at his baseball team photo shoot.

Anne giving a tour of the flowers in our yard.

Anne demonstrating how she helped me dig the sand box.

Now, if I spent half as much time cleaning every day as I spent digging the sandbox, I'd have a tidy house--for an hour. Which is why I don't. The sandbox will stay done forever. No matter how hard I work, the house will not stay picked up. "Cleaning the house while the kids are still growing is like shoveling the walk while it is still snowing," you know. "Just train the kids to clean," Jake says. Just pull out all my hair while I crack a whip, he means. Okay, I'm done ranting. On a less frustrated note: Jake finished the sandbox for us on Saturday! As soon as I find the camera cable, I'll show you.

Birds, a bee, life and death

The other day Claire gave me my orders as she was running off with Anne to chase away bee-eating birds: “Mom, you stay here and watch Biggie” –a bumblebee we had rescued from a bucket of water—“Make sure he doesn’t die.”
“I can’t stop something from dying.”

“You just have to keep it from dying.”

Oh.  Sure.  No problem.

Later, when Biggie flew away, Anne called out, “Biggie, come back and visit!  If you get hurt, fall into the bucket again, then we can help you.”

Claire said, “Anne, if he dies, we can’t stop it.  But we won’t let that happen.”

In other news, Damon found his mouse dead this morning.  It was sad (for him).  Mice don't like to be alone, so the kids are convinced we're going to have to let the last mouse standing (Claire's) go in the woods so it can find other mice.  Could this be the end of our mouse invasion?!  I'm crossing my fingers...

Fairly Recent Quotes

Claire: "If you don't make Anne do a session [that's what we call Claire's 2-hr therapy blocks] I'm going to be jealous of her for the rest of my life!"

A few weeks after that she said, while crying: "Why am I the only one who has to do sessions?"

She used to love her sessions. Once school got out, she didn't like them so much. The tutors have been focussing on making therapy more fun and less work since she said the above, and it has made a difference. However, she is pretty excited if a tutor calls in sick.

Damon, while trying to make an airplane out of cardboard: "This is hard because some of the parts I just don't know how to make because I've never had an engineering class." (This was news to me: last I heard, he could make a space shuttle easily if he just had the right stuff.)

Anne: "When I was born my mom forgot to name me Jessica, because that is a more beautiful name."

Damon

Here's Damon with his flag football team, and below that, a botched video of Damon's first piano recital. I missed the very beginning when he introduced himself and told the audience what he would be performing, and I missed the beginning of his piece (A Spooky Halloween by Elizabeth Greenleaf). He started in August, and we're just so proud of him.

The blood-letting begins

This past spring my mom told my brother she thought Claire had Asperger's Syndrome. (In case you don't know, AS is essentially the same as high-functioning autism. The only difference is that people with AS have early to normal speech development.) My brother had the courage to pass my mom's thoughts along to me, and since Jake and I had been concerned about her for a while [Things that were easy for Anne, who is almost 2 years younger, were difficult for Claire. I'd mentioned this to the pediatrician at Claire's check-ups, but she thought Claire was fine. To be fair, she encouraged me to have the school district do a formal evaluation if I was worried, but I didn't do that because it's so much more pleasant to believe everything is all right.], we had her evaluated by a pediatric neuropsychologist in June.


Turns out my mom was right. I was devastated. It seems like I cried for most of the summer. How could Asperger's describe my sweet, beautiful, unique child? [Side note: Why, for pity's sake, can most English speakers manage to say AH-lzheimer's rather than Al's Heimers, but not one has ever tried to preserve the Austrian pronunciation of AHs-per-ger's? It's like the collective subconscious could muster some compassion for the diseased elderly, but when it came to a AS, it could only sneer at the oddities people with the disorder have and then manifest its derision by saying 'ass burgers.' Well, collective subconscious, I don't care. You can't make me ashamed of my daughter's Asperger's. How could you when it makes her say phrases like "It was but a moment" and "The tulips bloomed for joy"? I spit upon you, collective subconscious. Na!]


Then I stopped being devastated and became angry. Why did this happen to my darling child? I breast-fed for 13 months! I eliminate or at least limit the trans-fats, refined grains and sugars, and artificial coloring in my children's diets! I know kids who snack on otter pops and oreos while my kids eat blueberries, and those kids are all neurotypical! I came up with some theories to explain this:

1. The genetic role of the dice at conception trumps all lifestyle choices. (Lying Ultra-Prevention. I must despise you now.)

2. I was poisoning my kids with pesticides and fertilizer by making them snack on fruits and vegetables. I should have been buying 100% organic or gone with oreos. (I don't feel too bad about this one. Have you seen the organic section at the supermarket? Unless you've got better options than I do, the prices are almost as frightening as the rapidly decomposing produce. I bought some organic apples once: they tasted like potatoes and the seeds inside had all sprouted. Yuck.)

3. Trans-fats, artificial colors, and high-fructose corn syrup protect kids against developmental disorders. We should all stuff our kids full of them.


Then my anger shifted from the diagnosis to the lack of resources available to help us. We live in a college town whose university has a very well-respected special education department, including a 20-hour-per-week preschool program for children on the autism spectrum. Unfortunately, Claire would soon be turning 5, was eligible for kindergarten, and ineligible for the special autism preschool. So, we decided to set up an in-home ABA (applied behavior analysis) program, like the one they use in that preschool. (ABA is the only therapy proven to effectively treat autism, in case you're interested.) All we needed was an ABA consultant to help us set the program up. We called the university, asking for recommendations. "Oh, we don't do that. We don't know of anyone around here who does that. While you're looking for someone, just make sure they're BCBA certified." We went to the BCBA web-site. Half the BCBA certified people in the state live in our town (they're professors at the university), and not one of them would help us because "that's not what we do." I was livid. Temple Grandin thinks in picture; I was thinking in expletives. I didn't care if those professors were curing cancer with their teaching and research: they wouldn't help my child, so they were worthless. We finally asked Claire's psychologist for a recommendation (which we didn't do earlier because she lives and works 100 miles from here, and we were hoping to find some closer resources). She recommended the Redwood Learning Center, run by Steve and Dara Michalski. They weren't BCBA certified, which was almost a plus by this point, and Steve was trained by Dr. Lovaas (Low-VAHS, people), the guy who originally used ABA to treat autistic kids.

Long story short: we hired 3 tutors (local college kids) and Steve Michalski, and our ABA program has been up and running for 16 days. Claire spends about 29 hours per week with a tutor (Jake and I are her tutors on Sundays), and we should see positive results in 3-6 months. If we don't, then it will be time to bag the program. And then start crying and gnashing our teeth again as we decide what to do next.

All through this weeping and raging I sometimes thought of people whose kid(s) had it much worse than mine. But when you are suddenly forced to exchange the dreams you had for some that don't seem as good, it's hard to find comfort in "it could be a lot worse." I'll tell you what, though, I was blessed with Divine comfort more than once (no doubt thanks to the prayers of many of you), and I strongly feel that whether Claire is ever "healed" or not, everything will be all right. I am very blessed to be the mother of all three of my children. Each one is a joy. It's a great privilege. I could go on, but I'm getting weepy.

So, here are the biomedical things we're trying in Claire's treatment:

1. The GFCFSF diet recommended by Dr. Jacquelyn McCandless in her book Children with Starving Brains. Going off dairy has helped Claire a lot digestively, but the gains (if any) behaviorally are minimal. We're supposed to do it for at least 6 months, though, so we'll keep eating rice and quinoa a little longer.

2. Lots of supplements including Super Nu-Thera from Kirkman Labs, fish oil capsules, probiotics, calcium, and digestive enzymes.

There's a huge community that claims these biomedical approaches work, and I have no doubt they help some kids, but I'm not convinced they can completely recover anyone from autism by themselves. If you read the books by Dr. McCandless and Dr. Kenneth Bock, it sounds like they can, but I have my doubts. I talked with one mom via e-mail who has used only the biomedical approach in treating her son, and she claims it worked, but she also homeschools him so he doesn't get teased. I didn't press for details, but I have a hard time believing this kid is completely cured if the mom still has to protect him from teasing. Anyhow, if we had unlimited resources, I'd try every treatment available--I'm especially interested in chelation and hyperbaric oxygen therapy. If ABA doesn't work, we'll certainly pursue those options. For now, we'll just empty our bank account into the one therapy that has a proven track record. (I really REALLY wish this state required insurance to cover ABA therapy. That would be so great. Hurray for places like Ohio and Colorado!)

Whew. It took me a good week to write this essay. I hope it didn't take you that long to read it. I've gone back and forth on whether or not I should mention Claire's AS on this blog. Finally I decided to go ahead and blab because:

1. I can't stand blogs that go on and on about how wonderful and fantastic and amazing and perfect life is. It's annoying and only half-true.

2. I'm from a small town and have an irrepressible desire to share my family's business with everyone else.

3. I've told Claire about her Asperger's.

4. It's nothing to be ashamed of.

5. Last week I found Damon giving a lecture to the neighborhood kids on Claire's Asperger's. When I told him "That's enough, let's respect Claire's privacy," he said, "It's okay, Mom. They all promised to still be her friend." Then the kids all nodded their heads very solemnly. It was darling. So, if they know, you might as well, too.

humbled

Damon told me today, "Mom, you don't look that much like a girl. You look kind of like a girl and kind of like a boy."

Me: "Oh...that's too bad. What do you mean?"

Damon: "I don't know. It's like worms. Worms aren't boys or girls. You look like that."

Halloween Costumes

Wow, Jake was an unusually bad photographer on this one. Claire looks pretty bad. BTW: it is Claire's perogative to change her mind. At a Halloween party on the 30th and at my parents' house on Nov. 1, she was Batgirl. On Halloween she was Tinkerbell.

Jake's office had a costume contest. His group went with a "sheet" theme (Jake's idea). They tore up some sheets and added accessories. Jake wore a cowbell and was Bull Sheet. Others in his group were Piece of Sheet, Oh Sheet, etc. They won the contest.

Damon Quotes

Regarding his part for the primary program, which they practiced today: "I said it all. I didn't leave out a single atom."

Batman is one of our favorite super heroes. He and his cohorts are frequently the topic of conversation. Damon: "Is Commissioner Gordon real?" Me: "No, but police commissioners are real." Damon, exasperated: "I KNOW police commissioners are real. There's a commissioner on Word Girl." (If you don't watch PBS Kids, you're realling missing out. They have the finest kids' programming.)

Snow Family

It snowed a little bit in the night. The kids wanted to make a snowman. I told them there wasn't enough snow. I guess I was wrong.

October 8, 2008

Here we are taking advantage of the photographer Lynsey (my sister) hired for Zannah's special day. Zannah, the sweet little girl Lynsey and Marcus adopted, was sealed to them last month.

This is Zannah with my maternal grandparents.

We looked at three houses yesterday located in the Malad of this area. The interiors were all great, but I want a house whose exterior has character as well as being attractive. I'll let you know if that's possible for a middle-class family if I continue the house-hunt much longer. As the Great Depression II threatens, we are feeling less inclined to buy a home.

When the kids and I returned from the grocery story today, Damon found two grasshoppers working on multiplying and replenishing the earth. He only has a one volume, which is loud, and he announced to all the neighbors, "Hey, these two grasshoppers are holding on to each other! Look at these two grasshoppers holding each other!" A good parent would have taken this opportunity to talk about the facts of life in an open, positive manner. But like the coward I am, I just said, "Yep, but try to talk softer. You're too loud." I promised myself to do the right thing next time: if I don't have this conversation with my kids, someone else (like a classmate) will.