Order Restored (for One Tuesday)
May 28, 2008 by Kristina Chew, PhD
Filed under Health
A friend had asked both Jim and me to speak to his Tuesday night class, on religion in America. We had planned that Charlie and I would meet Jim somewhere near where the college where our friend is teaching—up in Bergen County, not far from the George Washington Bridge—and first have dinner at a diner, then take turns walking and hanging with Charlie, and talking to the class.
Ah, how the best laid plans do go to waste.
After the long weekend, it was clear that Charlie needed a return to order: He didn’t have school on Friday or Monday; by Saturday afternoon, Charlie was asking for school (two days off and back to waiting for the yellow bus, right?). Usually he and I start the week with a trip to the grocery store; Tuesdays we go to the YMCA pool.
Today—a kind of Tuesday that was kind of like Monday—we did both. Charlie had a very happy day at school and a good cello lesson (though I felt a bit sad as he only has two more lessons and then he moves onto middle school and it’s not clear what might happen). He took his time getting off the bus and then was unsettled, going from smiling to crying and moaning in the space of less than a second. (And the weather—alternating sunny and humid and then rain falling down in buckets—matched his changing moods exactly.)
We did get to the pool where Charlie floated around with two multicolored beach balls and tried to go up the water slides (the water wasn’t turned on). I stood in the water in my flip flops and after forty minutes he asked for a towel. The weather still kept swinging between sunny and storms as we walked through the parking lot to get groceries. Charlie wanted brownies and I found some gluten-free mix and bought a dozen eggs, one being needed for the recipe (and none of us are egg eaters).
Once home, he quickly ate a pack of sushi and then took out the brownie mix. I turned on the oven and Charlie helped pour and stir and got out and put away some ingredients. I finished the mixing (Charlie’s mixing was 50% tasting the batter) and spooned it into a greased pan. Charlie licked the spoon and I wiped down the counters, told him to put grapes in his lunchbox, and did the dishes, carefully rubbing at the inside of a white melamine bowl that was a wedding present.
I used to bake and cook quite a bit. Cookies, the occasional pie, bread and pastry and lots of what you’d have to call “California/Asian cuisine,” heavy on the gorgeous vegetables. I still have all kinds of pans and utensils and cookbooks with sticky covers, but they mostly sit in their cabinets or boxes. I do make most of Charlie’s lunch but I rarely cook for the three of us. It wasn’t putting Charlie on the gluten-free casein-free diet at the age of 2 that changed things, but realities. I’ve worked full-time for most of Charlie’s life and hasty stir-fry and rice are the usual dinner option. And, until fairly recently, Jim worked up in the Bronx and had a daily, epic commute on trains and subways and afoot, and could never be home in time for dinner.
Tuesday night, Charlie sat on the kitchen table as we waited for the brownies to bake. He used to do that all the time when he was younger, his feet on a chair—-now they dangle just above the floor. He ate too many brownies, still hot from the oven; I tasted one too–gooey and sweet. Then it was brushing teeth, running around, bedtime wrapped tightly in a big fleece blanket. I cut straight lines through the rest of the brownies, now cooled off, and tore up sheets of waxed paper, and wrapped them up, small treats for tomorrow.
I like cooking but don’t have the time at the moment, sadly.
50% tasting the batter seems like a good preparation method to me, except if it puts you off eating the finished product.
Schools don’t usually offer private lessons in middle schools. Could you pay privately so that Charlie may continue cello lessons?
I’m looking for a teacher and his current teacher has some names. She had a good recommendation, too, to just have a lesson once a month—I think it would be helpful just to know I could “check in” with someone.
I ran across this website…it may be of interest to you. It’s a mom’s story about her autistic son. So Cool! http://www.recoveredfromautism.com No sales! Just pure love and information.
Since I learned about this on TV, I have searched through a lot of websites regarding this issue. Sadly enough, I found “too many” comments from individuals who apparently are uneducated and/or ignorant about potential undiagnosed conditions or syndromes. My sister and I are raising my two grandsons since my daughter’s disappearance/death five years ago. Both of my grandsons experienced behavioral problems before starting kindergarten. After many visits to doctors, psycologists, psychiatrists, laboratory testing we finally were given the diagnosis which is FRAGILE X-e (mutated chromosome(s)). This was determined through a blood test. Finally we have found so far that four out of five tested in our family also have this same condition. This message is to help people try to understand that not all children who are unruley are just acting out as brats or unmanaged by their parents/care givers. This message is also directed to everyone who has concerns, from experience I am advising those to have an individual tested by laboratory methods (blood tests) and not just an individual’s opinion. If only the world could learn about this and not have to wait so long to find out like our family did.
@Linda Sue Taylor,
Hope your grandsons are doing all right now—-thank you writing here. We had my son tested for Fragile-X and he does not have it (he was only 2 at the time). Yes, as you wrote—
“not all children who are unruley are just acting out as brats or unmanaged by their parents/care givers”
—have to second your words.
Comment back to Kristina Chew, PhD
Thank you for reading my comment. I am very interested in getting this info out to the world and sometime ago actually started a “free website” about it. The main reason I commented in the first place is because some of the potential characteristics of Fragile X-e are Asberbergers, Autisum, mental retardation, speech and language delays, and more, BUT this doesn’t mean they all apply to any one individual. My oldest grandson who is nearing 17 not only had behavioral issues, speech and language delays, but also had overactive salivary glands. However, with surgery two neck glands were removed this past Fall 2007 and he is doing 100% better with that problem, his speech has improved 99.9% over the years and his behavioral problems subsided as he matured during middle school including all of his drugs at his choice have been eliminated as of last Fall. It was just announced at my eleven year old’s IEP this past Spring 2008 (for those who are unaware of this acronym, it means Individual Education Plan) just graduated from speech and language April 2008 and also does not need to revisit with his Psychiatrist who managed his behavioral medication. For those who do not know what kind of blood work to ask their doctors to check for, it is a blood panel for: lead, iron, glucose, thyroid and chromosomes (in our family’s genetics the issue is chromosomes, I too have this condition). Unfortunately, some doctors only order a test for Fragile X-a and not X-e.