Remember what a great thing pizza was for Leo? How it took an aeon of therapist-led food chaining to get him to eat it, how then he became such a fan that we we had pizza cake for his 10th birthday?
Unfortunately, Leo now likes pizza so much that he's developed a severe case of Pizza Anxiety. If he knows there's pizza in the house, he can't think of anything else, can't focus on anything else. If he knows there's leftover pizza from dinner, he gets agitated and has a hard time going to sleep. If he knows there's pizza in his lunch box at school, he cannot think or talk about anything else, not until that pizza gets nommed. No amount of visual supports, reassurances, or distractions help -- not at home, not in the classroom.
So, we've banned Wednesday Night pizza for now, which as a routine lover myself makes me fairly sad -- and also sad that this is so hard for our boy.
We can still get pizza in restaurants, at the Costco food court even -- any place the pizza loop opens and closes on site. But we can't have pizza at home, or at school for the time being.
Leo doesn't seem to mind so far, as again it's only when pizza is present that Pizza Anxiety escalates. And we'll try again in a few weeks.
We are coming off one of the busiest two weeks of all time, which is why I haven't been present in this particular blogspace much -- I've been bustling on every imaginable level, dabbling in surreality such as getting quoted in the Wall Street Journal on my birthday (the digital edition goes up a day early, and there's video of Leelo in the attached Digits interview). It is odd and overwhelming and wonderful too.
I also interviewed Monica Holloway, author of a book I frequently recommend: Cowboy and Wills.* Her story recounts her son's struggles with autism and severe anxiety, the variety of approaches she explored, and the successes Wills continues to enjoy due to his and his team's hard work. I wasn't able to include all of our conversation in the BlogHer interview -- Monica is a charming conversationalist, and we talked for a long time. But her pointers, the ways she and her son's longtime therapist came up with to help ease Wills through transitions and other manifestations of his anxiety, are worth your time. It's especially warming to hear how beautifully Wills is doing now that he is thirteen, approaching puberty, and a self-taught and very successful baseball player. Even though Wills and Leo are so different, I tend to feel that any one of our kids' successes is a victory for us all. I'd like to thank Monica for sharing her story, and encourage you to leave a comment if you feel the same way.
I also wrote a guest post for SFGate, by invitation of Laura Shumaker, about an incident in which Leo accidentally touched the ass of a lady in a video store without me noticing -- and how badly both she and I reacted. Mostly, I want a do-over so I could calmly ask that lady exactly how Leelo touched her, explain that he has autism and that it was unintentional, and apologize -- even though she was rude -- because we are supposed to be ambassadors for our children and loved ones with autism when they aren't able to fill that role themselves. I'm fascinated by the range of reactions to the post -- the comments on the original article come from both inside and outside the autism community, and range from pleasant to dickheaded, ignorant to supportive. The comments on Laura's own Facebook page are varied but mostly warm and understanding. Then Autism Speaks shared the post on their Facebook wall (scroll down) which has generated more than 100 comments, from varied perspectives. Again, fascinating.
Our lives have been wacky-busy outside the computer as well. I don't know if I can even remember everything! Um. SEPTAR put on a great presentation on incorporating music into your child's therapy and life, including segments from Radiolab's episode on musical language. Leelo's such a musical boy, it shouldn't have surprised me how many of the therapist's suggestions we were already applying, such as singing Leo through scripted transitions, and using mnemonic devices to help him remember words and phrases. But I'd like to see if she can work with Leo, perhaps arranging musical lessons with his sisters to give them an activity they can all participate in and enjoy.
Speaking of his sisters and music, Iz slam-dunked her several-degrees-harder than previous years science test, on cell biology -- in part through cell processes songs that she and her friends made up. She also did a lot of studying via IM, which made Seymour dubious -- but she asked him to let her try it, and if it didn't work, she wouldn't use it for the next test. Let's just say that she couldn't have received a better grade, so Seymour is convinced. Iz is currently in love with amoebas and determined to be a microbiologist.
We spent the past weekend with our dear, dear, dear friends Floyd and TLF, who flew most of the way across the country to celebrate TLF's 40th birthday with us, bringing their extra-cute Talia the four-year-old towhead along. She and Mali were desperately in love with each other's playtime presence, and refused to be separated during waking hours. Even when Jennyalice's Lucy joined them on a Floyd attack:
This week was also the fruition of several weeks' worth of long, long days for Iz: her school put on a production of A Midsummer Night's Dream, relocated to a high school -- with five Pucks! -- in which Iz played the head fairy/cheerleader. MND is probably the most audience- and young-actor-friendly Shakespeare play to begin with, but Iz and her friends were also really good -- especially the eighth-grader who played Bottom.
TLF and I spent a joint-birthday Saturday near Sebastopol at Osmosis spa, getting our heads heat-fried and our hard drives wiped -- we emerged as entirely new people. If you're ever in the area and want a transformative massage, I recommend Joe H. at Osmosis, highly. And of course we went to Willow Wood afterwards, where I managed to not treat my bowl of polenta with goat cheese at though it were a trough. Barely. (TLF and I were extremely grateful to Floyd & Seymour for watching all of those children so we could have a day out together.)
TLF and Floyd are former Deadwood residents, so there was a trip to Suraj as well, of course. Mali & Talia turned all available placemats into works of art. I particularly like this one, which is an alien family with a pet "mummy bird." I swear, if I had time, Mali could have a very busy Zazzle store -- her artwork is consistently zany and awesome.
More posts coming, soon. Leelo and Mali have both found lots of new apps that they like and keep returning to, plus Mali's been given a couple of excellent books she wants to share. And don't forget to visit The Thinking Person's Guide to Autism -- the phenomenal posts keep coming, though we've moved to a M-W-F posting schedule so we can actually get the book done.
I'm off to take the kids to our annual pumpkin patch excursion. I am grateful that the weather deities listened to my pleas, and turned off the heavenly taps so we could pick pumpkins under blue skies, instead of this past weekend's rain sheets.
How has your busy been?
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*Disclosure: Monica's publicist sent me a copy of Cowboy and Wills several months ago, but I initated the author interview. All stated opinions re: Monica's book are my own.
I took Leelo in for a fasting blood draw this morning. By "fasting blood draw" I mean our boy went twelve straight hours without food -- a real challenge for a kid who wants to eat the moment he awakes, cries real tears if that wish is not fulfilled, and who has recently resumed early waking.
I was nervous. Which is the short version of, "By 7 PM last night, I had developed constant chest pain, as is not uncommon with an impending panic attack."
Thankfully, our boy was brave, and the blood draw swift and smooth.
The positive outcome was not entirely a matter of luck. We kept Leo up a bit late, so he was still asleep at 6 AM when I needed to wake him. I whisked the snuggly sleeping boy out of bed, onto the pot, into his clothes, and out to the car before he was truly awake, while Seymour sneakily put together a morning meds PB&J sandwich and slipped it into my purse.
We also arrived the moment the lab opened, so as to be first in line and avoid a waiting-fueled breakdown. Leelo didn't have time to get agitated, so he only tried to pull out the phlebotomy needle once, and it only took three of us to reassure him and help him stay still rather than the usual five of us to hold him down. By the time the last blood vial had been popped off his line, even the nurses were chanting, "First needle, then sandwich."
He sure enjoyed munching on that sandwich. And I enjoyed a peaceful and side-effect free morning with Leelo, even though he'd started his day off-routine with an empty stomach and a stab.
Part of his emerging ability to tolerate unpleasant scenarios is maturity -- his kind of autism means developmental delays, not developmental stasis -- but another part is the medication Risperdal, which Leelo has been taking for just over a year. And Risperdal is the reason his blood was being tested in the first place -- last month's non-fasting and therefore less reliable blood test indicated that his blood sugar and cholesterol levels are elevated, putting him at higher risk for diabetes and cardiac issues. If he shows the same elevated levels while fasting, then we may need to switch him to another medication.
I'm not thrilled, because we went through some fairly fiery hell to find Leelo the right medication, and I don't want to risk a repeat. But I'm also not surprised. Though a very low daily dose of Risperdal brought Leelo (and, so us, his family) almost an entire year of relative bliss, we're starting to realize that the drug's effectiveness is fading. He's slowly resuming the challenging sleep patterns of his first eight years, and he's starting to have less patience with adversity or the unexpected.
We know why the Risperdal is becoming less effective. He has grown a lot, gained a lot of weight over the past year, while his dosage has remained constant. But neither we nor his doctor want to raise his dosage, as it could skew his blood sugar level even further, it already makes him hungrier than usual, and we don't really want to find out what lies beyond "constantly, desperately ravenous."
What will our options be? Most other medications in Risperdal's class of antipsychotics have similar potential side effects. The best option so far seems to be Seroquel which usually brings more sedation and less weight gain, and is usually fairly effective in terms of stabilizing mood. Another occasional choice is Geodon. It's weight-neutral. But it can also change blood chemistry and electrocardiogram readings, so we'd have to do periodic EKGs -- not something Leelo would likely submit to.
Another option: sometimes when kids with autism have intense behaviors or stims, they are rooted in anxiety. The anti-anxiety drugs typically prescribed to kids like Leelo are SSRI meds like Zoloft or Prozac. Their side effects are usually not significant: sleep disturbances or increase, appetite increase, stomach upset, headache, and very occasionally they have the opposite of the intended effect.
They're worth considering, because Supervisor M thinks Leelo's lingering, cycling, currently escalating, and always present stim behaviors -- which at the moment include raspberry-style spitting, repetitive slapping of or stomping on hard surfaces such as car interiors or wooden floors, needing to slam the toilet seat several times after each potty drop, and spinning -- are actually an OCD or anxiety manifestation.
I have to admit, I'm bummed that we're having to consider switching Leelo's meds at all. He had such a great 2009, and I took none -- none! -- of it for granted, as his late-2008 Abilify-generated tantrums and violence were one of the worst periods our family has ever experienced. I am grateful to Risperdal every time I'm able to sit down with my son and watch even 15 minutes of a movie or video, if he also puts his head on my shoulder, and for the 90% certainty that he won't randomly turn around and punch me. Even though his behaviors are ramping up and his sleep is eroding, I'm still loathe to make any changes. What if it doesn't work? What if things get worse? What if, what if?
We won't know what path to take until we get the Leelo's blood test results back next week. But any interim input, opinions, experience, or citations are welcome.
Disclaimer: Don't rely on me for medical advice, duh! Also, I know plenty of people whose kids had positive experiences with Abilify. Just not -- really not -- my son.
