One of the highlights of the past year was the two weeks I spent in Banff, Alberta, at Science Communications 2009. Supervised by Jay Ingram, one of my childhood Science Communication Heroes, we learned a little about a lot of aspects of communications.
One of my favourite sections was science writing. In one afternoon we had to develop a 700 word science story. Several months later, the article I wrote that day in August has become a thousand word article, published by someone else on the web.
Please visit The Mark News to read my article "Autism and the Placebo Diet." A friend of mine, who has a son with Autism read it this morning, and replied:
"Thank you. People like Jenny McCarthy have really put things like the gluten free diet in the news making those of us who don't think its right for our kids feel guilty. Meanwhile the hard science quietly advances with out a celebrity champion and mothers like me and my friends never hear about it."
As you may know, I started this site as a catalogue of my dietary adventures, or occasionally misadventures, as I learned to cook for my son, heretofore known as the Maestro.We started with a diagnosis of Sensory Integration Dysfunction (SDI) and a potential connection between Gluten & Casein and altered sensation.By following the diet strictly, and comparing what happened when we missed something, I have concluded that for us the GFCF diet doesn’t directly make a difference with SDI.The both of us get a headache -or worse- when we eat gluten.A headache makes any condition more difficult to deal with.Over the years, we have seen diet make a huge difference in the Maestro’s behaviour, to the point that eating the wrong thing can turn him into someone else for days.Since we prefer the standard version of him, there is now a long list of foods that he has to avoid if any of us are going to be happy.
He is now in grade one, and for a boy with his mental acumen he has had a surprisingly difficult time learning to read. Partly this is due to what turns out to be a fairly severe case of ADHD, and partly (or so we hoped) it was due to Irlen, or scotopic sensitivity syndrome.I wrote about Irlen Syndrome a few years ago, but it turns out it was on my now-closed chemistry blog.This is what I said:
I have several relatives who have what is called Irlen syndrome in the United States , or Scotopic Sensitivity Syndrome (SSS). The basic gist is that certain wavelengths of light interfere with the brain's processing of visual stimuli. Wikipedia has a good sample of what written text may look like to someone with SSS; in talking to some of my cousins about it, they say that things appear differently to each of them. A few of my siblings have it, but not nearly to the extent that my cousins do. My siblings all seem to feel better when they wear colour-tinted glasses, and they had trouble at math. Looking at the sample text below, which I think is supposed to be Times New Roman font, you might expect a problem keeping track of a negative sign in an equation.
Do I think I have Irlen Syndrome? No, I don't think so. Everything is looking the same as it used to, it just hurts my eyes hurt to look at white things. I suppose that if I get some more sleep this weekend, and it doesn't go away, I may need new glasses. This is just one of those issues in my family that you have to consider, like to eat or not to eat wheat. When half your siblings wear coloured lenses on a regular basis, and your cousins ALWAYS wear glasses and a sun-visor, light sensitivity is going to make you consider Irlen Syndrome. ”
In the spring, we took the Maestro for an Irlen screening, and were told that he had it.They gave us some coloured plastic sheets that are supposed to help when you put them over text you are trying to read, but they didn’t really seem to make a difference.The next step is to spend one million dollars on a full diagnosis of the helpful and harmful wavelengths of light.Then you send away for a pair of glasses that filter the light you see reflecting off everything, not just pages of text.Luckily, the lenses are included in the one million dollars, and you just need to find a pair of Ray Bans, out of which you can pop the lenses.
Even though we hadn’t seen a noticeable difference with the overlays, we felt like a full diagnosis and glasses was the thing to do.This summer, we spent three days in another city so the Maestro could spend time each day looking through colour filters.We spent several weeks combing the city to find glasses that block peripheral light and that the Maestro would wear.We finally mailed them off and spent 4-6 weeks waiting, trying not to get our hopes up that lightly tinted glasses would solve all of our problems.
What problems?Well, the Maestro is at a great school that is really dedicated to working with students on what they need, but it was clear that reading was becoming a big problem.It didn’t seem to matter how much we worked with him, sight-word recognition was not getting much better, nor was his ability to differentiate things like p and d or b, or m and w.Then there was his attention deficit and his hyperactivity, which makes it tough to concentrate on something long enough to make progress, whether you can see the letters or not.His impulsiveness and his noise offends people, who then tell us that we just need to be harder on him more consistently so that he will decide that misbehaving isn’t worth the consequences.Or worse, people get offended and instead of telling us what we need to do better, they complain to our neighbours about our bad parenting.
So how can Irlen glasses help?Well, if you look here (and you really should.I’d put the figure here, but it’s an animation and won’t copy) you can see samples the several different ways that Irlen syndrome can distort what you are trying to read.Scroll down to the distortion effect box, and try out the various options.If getting rid of those visual effects doesn’t make recognizing the, them, and they, easier, I would be surprised.
Then there is the simple overwhelming nature of seeing the world this way.Here is a great picture of a Brain scan, done on a person with Irlen Syndrome.Areas with brain activity are shown in white. The set on the left are done without glasses on.Compare the same brain on the right, when the person puts their glasses back on.With a brain that active, focused on nothing in particular, concentrating on the task at hand is going to be difficult.
Does Irlen syndrome cause ADHD?Can putting on a pair of glasses make it go away?This is the sort of thing we were trying not to get too hopeful about, but the hope was the reason we were getting the glasses in the first place.
He’s been wearing the glasses consistently now for three weeks.In that time, we’ve seen leaping improvements in his reading.He recognizes and remembers words by sight, rather than trying to chant the letter combinations that he has trouble seeing.We got an email from his teacher last week, saying that she could tell that our hard work was finally paying off and that he is making great gains.We’d been working hard the whole time, and it is only now that he has his glasses that the time and effort invested is paying any dividends.
Interestingly, he has also become much calmer.We haven’t had to talk to him once since he put on his glasses about getting in someone’s personal space, which was one of the things that required consistent consequences to curb.(The preceding sentence brought to you by the letter c.)We asked him this morning why he wasn’t invading people’s space anymore, and he said that he forgot all about doing it.I’m not sure exactly what that means, but whatever had driven him to try to talk to people an inch from their noses is no longer there.Reward, punishment, reminders, nothing we have ever come up with for the past five years has ever made a difference for this behaviour, and it simply disappeared.
Not all problems have disappeared.Now that the letters stopped moving, he still has to learn to read.Now he can learn, though, which is a huge improvement.He still has to pay attention to the task at hand, and that may or may not be solved by glasses.When people ask me what difference the glasses make, I tell them that he has gone from having ADHD to just having ADD.
Those of you who have never met us, who only know me through this blog, may wonder why we haven’t just put him on medication.It would be sooo much easier than all the diet restrictions and baking, which haven’t completely worked anyway.Now there are these glasses, which are just weird.Just put him on drugs, already!Many others consider medication a crime against children, and would never consider it.This is almost 1500 words, and medication is too big a topic to sandwich in here.It must suffice to say, for now, that ADHD medication can’t fix moving letters or gluten sensitivity.
Others might figure that the concept of "fixing" a kid like the Maestro is the problem, and he is who he is. Today, the Maestro got himself dressed for church, packed his activity bag and put on his socks and shoes without being reminded. We were on time, and he ended up with the things he wanted in his bag, which then kept him occupied through the meeting. The things he packed, well... those are uniquely him. If he can focus on being the himself that he wants to be, that's progress.
P.S. The child formerly known as The Maestro now wants to be known as Obi-Wan Kenobi. I think I'll call him Ben.
Evan appreciates having treats. I don't mean that he enjoys treats, though he certainly does. He appreciates them, kind of the same way Ben Gunn, the maroon on Treasure Island, appreciates cheese.
A couple of weeks ago we were at a family gathering; desert was pie and ice cream. Evan can eat neither of these so he had a piece of gum. Yesterday he went to a birthday party. While everyone else was eating cake, he munched on a few pieces of what may be the only gluten-free, dairy-free, soy-free*, corn-free, grape-free, coconut-free non-gum candy in the world. He routinely watches other kids have fruit snacks, potato chips and juice boxes that are off-limits because they have some trigger food on the ingredient list.
Today we had company for dinner, and there was wheat-flour carrot cake with cream cheese frosting for dessert. Knowing this ahead of time, I made a rice-flour carrot cake for us. With the lemon glaze from the freezer, It was one of the rare times Evan had it just as good as everyone else. As he finished his second helping, he gave me a big grin and said, nodding, "This is great, Dad. Yeah. Really great!"
After dinner, one of the other husbands asked me what I do for fun. Pretty much the only thing I do is bake, but I don't usually think of this as "for fun"anymore. It doesn't really count as leisure since I have to do it for us to live.
Ben Gunn spent three years on Treasure Island before Jim Hawkins and crew arrived. For three years he lived on salted goat meat and fruit. When he met Jim, one of the first things Gunn did was ask for a piece of cheese. He said that he would dream he was eating cheese, only to awaken and find himself in a cave, with nothing but salted goat for breakfast. When he finally got his cheese, you can imagine that he enjoyed it, but he probably appreciated it in a way that most of us never will. Tonight as Evan thanked me for making him a good cake, it seemed like he appreciated it,
Carrot Cake 3 cups shredded carrot 3 eggs (or equivalent flegg) 1 cup oil 2 cups brown rice flour 1 tsp baking soda 2 tsp xanthan gum 1/2 tsp salt 1 1/2 tsp cinnamon 1/4 tsp ground nutmeg
Mix everything together well, and put in cake pan. One of the joys of GF baking is that you don't have to worry about mixing order so much. Bake at 350 F, until it looks done. Voila!
* gum always contains soy lecithin. I think it is the soy oil that bothers him and soy lecithin seems to be fine, at least in the amounts they put in gum.
