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.

Ode to Wheat

Wheat the wonderful, wheat the divine,
Wheat upon whom the happy multitudes dine.
Wheat, I left my praise for you unsaid
until I tasted gluten-free bread.

Spring and Summer Pics

Jake all muddy after mountain biking. My neighbor goes mountain biking with her husband all the time. I wish I had it in me to do that, but it's more than my legs can handle going uphill, and too scary going down.

Anne likes to dress herself for church. Sometimes that means we have to negotiate: she takes off the sparkly Tinker Bell shirt, and I put mascara and lipstick on her. Now that I think about it, I'm not sure mascara and lipstick on a 3-year-old is less gaudy than a Tinker Bell shirt in the chapel. Anyhow, sometimes it means we let her go to church in black shoes, brown tights, and her dress on backwards.

Five ponytails are better than one.

Damon the Architect

Arches National Park.

Jake, your hat brim isn't wide enough. The sun is touching your face--run for cover! That arch should do.

Claire's birthday party and the gluten-free, casein-free, soy-free, taste-free cake. Just kidding. The frosting was good.

Damon and Anne with Claire's pinata.

Claire avoiding the pinata she specifically asked for. She refused to to take a single swing. Maybe the violence got to her.

No picture of Damon on his first day of second grade!!! Sign me up for worst mother of the year.

Damon holding his newest cousin, Baby Max. Can you believe that hair? Some babies (not mine) have all the luck.

Claire after the first day of kindergarten, 8-24-10, with a face to make any mother seriously consider homeschooling.

Anne looking chic in Knifty Knitters, 8-30-10.

recent quotes

Damon:

"What if there was a hotel floating through outer space?"

"What if the wind blew so hard it carried people away?"

"What if we jumped off the roof and started to fly around?"

"What if [fill in the blank]?" x1000

"What if I ask so many 'what if' questions my mom goes insane and has to be institutionalized?" is the only 'what if' he hasn't asked.

Claire:

"If we're not having meat for dinner, I'm running away from home!"

When Anne wouldn't give her a toy she wanted: "Anne, you look like a toilet!" I was going to wash her mouth out with soap for that one, but I had food poisoning (never drink almond milk that's been on the counter in a hot house all day) and only had the strength to give her a time-out.

Anne has had plenty to say, too, but "Can I got to Bekah's house?" is the only phrase that comes to mind, because I hear it almost as much as "Can I go to Grandma's house?"

Life on the Fringe + Recipes

I'm a pendulum swinging from one extreme to another.

It looks like Claire has some food sensitivities, so we're putting her on a GF/CF/SF diet. (That's gluten-free, casein[dairy]-free, soy-free, for those of you who aren't weird diet savvy.) It's rough. For breakfast and lunch, the rest of us eat the way we usually eat, and for dinner we're GF/CF/SF. I've had to add eggs and more meat to our lives so Claire and the rest of us don't starve. We haven't had a gluten-free day yet, because Claire is a scavenger and cleans up after Damon and Anne if I don't do it fast enough, but she's been dairy-free for about a month, and we've seen some definite improvements in her health.

We're also supposed to limit her refined sugars, so here are some dessert recipes that aren't exactly healthy for you, but healthier than real deal.

Strawberry Ice Cream

2 cans coconut milk (full fat: I like Thai Kitchen brand)
2 1/2 C frozen strawberries
1/2 C agave nectar or honey
1 T vanilla (most vanilla extracts have gluten in the alcohol, so be careful with this one)
1 tsp lemon juice

Blend all ingredients in a blender, and pour into you ice cream maker (check what your capacity is-mine can only hold half of this recipe). In 20 minutes or less, you'll have a pretty darn good treat. I'm something of an ice cream connoisseur, so you can trust me on this one.

Black Bean Brownies

Now this recipe is for kids/people with undiscerning taste buds. My kids devoured it, but the fact of the matter is it tastes like black beans. That's not a flavor I like in my brownies.

Pre-heat oven to 350.

1 15 oz can black beans, rinsed and drained
3 eggs
3 T oil
1/4+1 T cocoa
pinch of salt
1 1/2 tsp vanilla
1/2 C agave nectar or 3/4 C sugar
3/4 tsp baking soda

Blend everything until smooth in a blender and pour into a lightly greased smaller-type pan--maybe 8x11 or 8x8? I used a 2 1/2 qt souffle dish. Bake for 30 minutes or so. There should be cracks on top and a tooth pick should come out clean.

skip this one--you'll be bored, guaranteed

This is Damon's last week of school. He's excited. I was his soccer team's assistant coach in April and May, and I'm ashamed that I don't have a single picture to post. We do have video footage, but I haven't had any luck uploading videos. He had a good time, but he's more into socializing with his teammates than actually trying to win games, so watching was frustrating at first, until I learned to calm down and control myself. During his first game I was swearing under my breath, which is ridiculous! It was a first grader's soccer game, for crying out loud! What's wrong with me? One major thing that's wrong with me is that I don't know the rules of the game. So, when the kids weren't chasing the ball, I told the 15-year-old referee I needed a time-out, and she gave me one. I explained to the boys that they were supposed to try to score goals, and they couldn't do that if they were all stopping at the center-field line. They did better after that, but I found out later that there are no time-outs in soccer. I say that's dumb, and that you can do whatever the ref let's you get away with, like calling time-outs when there are no time-outs allowed. Overall, the kids were lucky they had me. The head coach was a good guy, and he actually knew how to play the game, but he wasn't any good at yelling at kids. I am. And I let those kids know where they were supposed to be and what they were supposed to be doing. I was hoarse after every game.

Claire took creative momement dance classes from January to April, and once again, I only have video footage. In April the entire dance ensemble performed in the opera house. It was great. I wish I could figure out how to upload video so you can see it. The best part wasn't captured with the video camera, so I'll tell you about it so I don't forget: there was one number that all the dancers performed in (ages 3-30 something). A girl was asleep dreaming, and the rest of the dancers were part of her dreams. The little kids were dressed up like monsters. It was darling. Near the end, the older dancers were lined up facing the audience and they were lifting the little kids up and putting them down one by one, passing them down the line. You should have heard Claire's delighted laugh as she was lifted up and down and passed from person to person--it was the best thing ever. She has a great laugh.

Claire and Anne are taking a little dance class together this summer--they've only had one class so far, and if it's any indicator of the future, Anne will be the class miscreant. She's really great at not following directions and being a pill.

blah, blah, blah plus successes and failures

My dad says the word "vegan" gives him a stomach ache, so I'm not going to use it anymore. Instead, I'll say "eating healthier." Really, I'll never be v****, because I don't think it's necessary to completely eliminate animal protien from your diet. For one thing, plants don't have vitamin B12, which is essential. That's why we'll always eat beef--good source of B12 and good things like iron, and I have a really good, inexpensive source of it ;-)

Furthermore, in the China Study, they refer to this rat experiment where half the rats were fed a diet that was 20% animal protien, half were fed 5% animal protien, and they were all injected with a toxin that induces cancer. All of the rats on the 20% diet got cancer, none of the 5% rats got it. So, the 5 percenters didn't have to be v**** to be healthy, just 'eat but very little meat,' like Eliza R. Snow said.

So, here's how eating went down last week with the help of my new cookbook, V****omicon:

Damon stopped crying because we don't have any real milk, but he's still not happy about it, and doesn't eat cereal anymore because soy/almond milk taste funny.

Claire finally tried almond milk and likes it! I was afraid she'd never eat cereal again. (I love cereal--my mom was a saint for making us a hot breakfast every morning, but I can't handle that much cooking. Getting one meal on the table a day that's not peanut butter sandwiches makes me a hero in my own mind.)

Anne is an eating angel. She tries almost everything I make (even the eggplant dip!) and often likes it (even the eggplant dip!). Bless her little heart.

Here are some of the recipes we tried and how we liked them:

Broccoli-Potato Soup with Fresh Herbs, page 138--yuck. No one liked it, even though I tried to salvage it by adding cheese. It calls for mint, which is just a weird herb for potato soup in our opinion. Plus, we're used to potato broccoli soups with butter/milk/cream/all three, so it's hard for a v**** soup to compare.

Mexian Millet, page 118--My brother Lex even thought this one was all right, and had two helpings.

Nachos with refried beans, guacamole, and cheese (will we ever be able to live without cheese?)--the only 100% successful meal of the week. Don't need a cookbook for that one.

Pumpkin baked pasta with carmelized onion--I thought it was delicious, Jake thought it was weird, the kids wouldn't touch it. First thing I've ever made with tofu that tasted good. But no one else liked it, so I'll probably never make it again.

Potato and Mushroom Blintzes--not bad, but WAY too labor intensive. If I'm going to spend that much time making something, it better be fantastic. It wasn't. And soymilk gives a strange flavor to crepes, in case you care to know. And I ruined the mushroom gravy that was supposed to go on top. Apparently apple cider vinegar is a poor substitute for white wine. Be quiet. Don't look at me that way. I'm sure you do stupid things, too, sometimes. Claire ate the crepe part, Damon hated the crepe part and wouldn't try the filling, Anne (whom I thought was my best eater) wouldn't try it at all.

So, there you have it. It's been a rough week due to some other things going on in our lives, and I'm wiped out. If things don't improve dramatically next week, I might consider bagging this new diet, or at least get milk for Damon.

If you've stuck with me this far, you must have too much time on your hands.