Thursday, September 23, 2010


Hard to believe I could have possibly left anything out of the last gargantuan blog, but I did. I forgot to list the warning signs we didn't recognize.

1. She turned her head away/cried/screamed/yelled "Go away"/put her hand up (stop-in-the-name-of-love kind of motion)/all of the above when someone unfamiliar or unexpected addressed her or walked in the room.

2. She liked to play by herself for more than twenty minutes at a time and would tell people to go away if they tried to join her.

3. She never played with blocks, legos, or puzzles. The animal toys she did play with were played with for time periods too long to be appropriate.

4. She paced, flapped her arms, and engaged in other self-stimulatory behavior ("stimming").

If we'd known then what we know now, we could have gotten Claire help when she was three.

You're probably wondering how we managed to let things go for two years. We ask ourselves that every day. Here are the answers:

1. We thought she was just shy and that everyone should respect her personal space. She never avoided making eye contact with me, and we never had any reason to doubt she loved us.

2. Damon and Anne were so demanding, Claire was like a dream come true to be able to play by herself. And she often played very well with Damon and Anne, so it's not like she never played with anyone else.

3. She was unique. So what if she didn't like the same toys other kids liked.

4. She'd been flapping her arms since before she could walk, and I thought it was a darling expression of excitement; her pacing seemed harmless.

About the time Claire was three, I read A Child's Journey out of Autism by Leann Whiffen (a fellow Maladite). Leann's son was so much more severe than Claire that I never identified him with her. I never associated Claire's shyness with "avoiding eye contact." It never occured to me her cute arm motions could be classified as "arm flapping."

If you're still shaking your head at our stupidity, give yourself a pat on the back for being smarter than we were, and keep your mouth shut: I can't stand a know-it-all.

Wednesday, September 15, 2010

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.