Facial recognition

Here and there I have read adults on the autism spectrum talk about the difficulty they have recognizing faces. Even if it’s a good friend or a frequently-seen person, there are times they simply can’t recognize a person’s face. Maybe it happens all the time, I’m not sure. I think I read from one person they rely on other features such as hair or height or, perhaps, glasses to trigger that recognition.

I have also read of parents speculating that their child has a type of face blindness. This isn’t anything I’ve ever seen in Charlotte. That doesn’t mean it isn’t at times a challenge for her, but it is not something that I ever witnessed myself.

Until…

This morning Charlotte was very upset about going to school. She claimed she didn’t feel well but when pressed for specific symptoms, she came up short. She started telling me she didn’t think that N wanted to be her best friend anymore. When I probed about that she said N didn’t say anything about not being friends anymore to Charlotte, but that she didn’t sit by her on the carpet during one particular time in class. I continued to probe.

Eventually she shared that when N came to school her hair was cut very different. “And I didn’t even recognize her! She came and sat by me and I didn’t know who it was. Then she talked and I knew it was N. But her hair was really different, and I think it should go back to the old way!”

Wow. It really stunned me that she didn’t recognize her friend because she had a different hair cut. Via email her teacher confirmed that N’s hair was cut in a very different style.

I don’t see this as a hugely debilitating issue for Charlotte. If it were, I think I might have picked up on it sometime in the last 3-4 years. What I do see it as is further evidence that her mind does work in a way that is much different than mine. Sometimes I forget that. She has her challenges, but for the most part Charlotte does so very well, it’s easy to forget that she has an IEP for a reason.

***

Speaking of challenges, things are about to get challenging here at home in the kitchen. Over the last couple of years it has become very clear that Charlotte’s behavior problems are caused by food. The problem behavior is always the same (aggression, which can include hitting and other things, and screaming) and it’s always brought on by a food that Charlotte has eaten a lot of over several days in a row. Recently both mandarin oranges and lemonade were the culprit. I started seeing it go that direction with popcorn recently but I nipped that by stopping the popcorn before things got out of hand. It’s fine to eat popcorn and those other foods … just not every day.

I began to wonder if gluten was the underlying problem with these other foods. The number of foods she has to limit keeps increasing, and the fact that foods affect her behavior is, to me, very unusual. So I ordered a stool test and gene test. The stool test, which looked for IGA antibodies to gluten, came back positive. The gene test identified two nearly identical genes for gluten sensitivity, indicating she got one from each parent.

This weekend is our last big hurrah with gluten before we all go gluten free come Monday. For Charlotte, it will mean gluten free for life. At some point, I’ll have the other two kids tested as well. The whole family is going to go gluten free because it will just be easier if we all eat the same things.

Truth be told, I’m dreading gluten free living. It’s a hassle. I know once we get in the groove, it will become second nature. Hopefully it will be worth it in the long run.

If you’re reading, leave me a comment. I miss interacting with my blogging friends!

 

Food effects

About a year ago my husband became a full-on vegetarian. No animal protein at all. Technically vegan but we don’t care for that term because, to me, it implies a whole lifestyle, not just a diet. I was pregnant and opted to wait till after Nolan was born and I was fully established with breastfeeding before changing my diet.

Since about October of last year, give or take a few chicken sandwiches, I have been mostly vegetarian and dairy-free. My husband is much more hard core than me. But that’s him -he’s always been an all-or-nothing kind of person.

I am always thinking about what I’m eating and whether I’m getting enough of all the important nutrients, especially calcium and protein.

A few months ago I decided to try soy yogurt. I used to enjoy dairy yogurt, especially with a little granola mixed in there. Soy yogurt gave me a daily dose of protein and calcium, and once I got past the fact that it’s not white like dairy yogurt (more gray), I enjoyed it mixed in with a handful of almond granola.

Then the headaches started. Mild at first. Different from the occasional lack-of-caffeine headache that I get. This was in a different place and, as the days wore on, more intense. Much more intense. Holding my head in my hands and rocking back and forth intense. Each headache would last 1-2 hours. It was hard to drive and sometimes carry on a conversation because I just couldn’t focus.

One day, after the worst of the headaches to that point, a thought popped in my head. Could the soy yogurt be the problem? It had been about 3 weeks of eating a daily yogurt, and it seemed like the headaches started within that period. I hadn’t been keeping track, though.

The next day I didn’t eat the soy yogurt. And guess what? No headache. I haven’t consumed any soy product since then (yogurt, tofu, ice cream) and I’ve not had one single non-caffeine-related headache.

***

I made a “summer rule” that I was not going to COOK any lunches. Sandwiches or tortillas and fruit and chips and nuts would comprise our lunches. Charlotte started eating peanut butter sandwiches again. Every day. Sometimes, on a hectic day, she’d have one for dinner too.

In my post the other day, I mentioned we’ve had some behavioral ups and downs with Charlotte. Behavioral downs in our house look like lack of impulse control of hitting and pinching and occasionally biting. It also looks like the inability to self-regulate once that gets started. This might happen once a day, or not at all on a given day. And the rest of the time she’s pretty good. But that once a day is tough. As summer was continuing, it seemed to be getting tougher.

One day, a thought popped in my head. Could it be the peanut butter sandwiches? Her IgG test from about 3 years ago indicated a very high sensitivity or intolerance to peanuts.

We stopped the peanut butter and the aggression tapered off, and has nearly disappeared. Her desire to lash out when frustrated is still there, but she now can stop herself. Her impulse control has largely returned. The difference is, in a word, dramatic. She’s not perfect (what kid is?) but no longer am I wringing my hands in worry.

Although I’ve tried and discontinued a special diet with Charlotte several times, I come back again (and again) to believing that food plays a significant role in her behavior. No, she doesn’t have any GI issues, but that doesn’t mean food is not still at play.

If I hadn’t had that personal experience with soy, I’m sure I’d remain skeptical. I don’t understand why soy gave me a headache. I don’t understand why peanuts and dairy (and soy!) affect Charlotte’s impulse control.

And then I think about other children out there who might be dealing with the same thing. Who, like Charlotte, have language-impairment and can’t articulate that they have a headache (or something), and end up losing their ability to self-regulate and control their impulses.

I hope science can someday figure this out. Until then, I think it’s important that I share our experience. Even if it helps just one person.

 

Debunca

A few weeks ago, Charlotte and I were laying in her bed telling stories. As we quieted down I heard her softly singing, “Debunca, debunca, debunca,” playing around with various melodies.

I asked her what debunca means and she said, “That’s what I do with my mouth.”

She was referring to the tic she does with her mouth. And she’s right,  it does indeed sound like she’s saying, whispering really, the word “debunca.” Whisper that over and over again and you’ll have a pretty good idea of what kind of motor tic she has.

Lately, as in the last few days, she’s been debunca-ing quite a bit. Yesterday we had an interesting conversation about it. I generally don’t ever bring attention to it, but she wasn’t interested in eating dinner and so I asked if she was feeling OK, if her tummy hurt or maybe her mouth was sore (she was really doing the debunca a LOT which was why I asked).

She said no. Then she said, “I was really excited when we had the reading and writing celebration at school, that’s why I started doing it.”

“Oh,” I said, “is that when the debunca started?”

“No, it started at home. I was really excited when we had the kindergarten concert, that’s why I did the debunca then.”

“Do you always do debuncas when you’re excited?”

No answer to that.

Then she started taking deep breaths through her nose and exhaling through her mouth. She said, “That’s what I do to make them stop. I just breathe a lot.”

“Oh, are you able to make them stop any time you want?”

“I can drink water, too, that will make them stop.”

“Does it bother you when you debunca?”

“No, it doesn’t. When I eat hard food, that makes them start.”

“Hard food like what?”

“Like apple slices. They make me do the debuncas.”

[I'm not sure any of that is true, by the way.]

From there the conversation kind of petered out. It’s apparent that Charlotte is very aware that she does them. It doesn’t seem to bother her and I don’t think she feels self-conscious about it. At least I hope she doesn’t.

There are times where it seems like she’s trying to talk and just can’t get the words out because of the debuncas, but that is seldom.

The conversation about her doing it when she’s excited has happened before. She’s also told me that she does it because she likes to.

I’ve grown much more accepting of this. It used to scare me into sleepless nights of worry worry worry. So terrified was I that she might have Tourette’s and even more social difficulty because of that.

But as my husband wisely says, “Not much we can do if she does.”

He’s right. May as well move to a place of acceptance now, whether it’s just transient tics or something she deals with for many years.

*******

In other news, it’s been about 4 weeks of zero restrictions on Charlotte’s diet. We have seen multiple rashes and she is bloated very often. We think it’s dairy. I think Charlotte thinks it’s dairy, too, because she has started limiting her consumption on her own. No pizza, no grilled cheese sandwiches, no quesadillas. She still likes ice cream but we don’t keep it at home so it’s only occasionally when out that we’ll get a cone. Inevitably she will get a light rash and itch like crazy for a day or two.

In terms of behavior, I’ve seen a little bit more acting out and screaming at us but nothing dramatic and I can’t say for sure that it’s tied to something she’s eaten. Could just be phases or testing boundaries. Who the heck knows.

The great news is that there is nothing life threatening going on here and it’s still incredibly liberating to be able to eat whatever we want whenever and wherever.

 

Feels like freedom

I mentioned in the last post, I think, that Charlotte had an upcoming appointment with an “autism friendly” GI doctor. We met with him last week and he is, indeed, very autism friendly. He is part of the Autism Treatment Network which is focused on providing appropriate, comprehensive medical care for children and adolescents with autism. It seems a lot of their focus is on GI and sleep issues.

At first, he talked philosophically with me about autism and GI issues in general. He said that GI issues in children with autism are shown to be in 4 main areas: constipation, diarrhea, alternating bouts of those two, and reflux. He also told me the vast majority of GI doctors won’t even treat autistic children because autism is such an unknown. How sad is that?

He was ‘on board’ (so to speak) with the idea that foods can cause different reactions in children, and because (often times) autistic children have difficulty either expressing that they are in pain or discomfort, or localizing exactly where that is, it is important to look at behavior changes as indicators of physical causes of discomfort.

Prior to Charlotte’s appointment, I had begun some food reintroductions in her diet. I wanted to see if she rashed up (as we call it) so that I could show him what we’re talking about. First up was cheese.

After the first serving of cheese, she did indeed get her infamous belly rash, but no GI symptoms. The rash cleared up in about 24 hours, so I decided (what the heck) let’s try it again. She has now been having cheese for about two weeks with no signs of rash.

At our appointment with the doctor, he wanted her to start eating all the foods she’s been restricted from in preparation for an upper endoscopy. So we went full force and she’s been having gluten, peanut butter and soy ever since. So far, no rash and no behavior changes. Woo hoo!

I haven’t scheduled the endoscopy yet, but if she continues to handle all the foods with no changes in behavior or disposition, then I won’t go through with it. To me, there would be no indicators, and since it involves anesthesia, I’d just prefer to be more conservative.

To make sense of the rash, she does have skin allergy testing scheduled for next week. I have a hunch it’s going to all come back negative.

So then what am I to make of all this?

Why is she able to tolerate foods (so far) that previously were responsible for a significant rash? Did I imagine the aggression that followed?

Honestly, I don’t know what to make of it. My neighbor told me last week that she dealt with hives and stomach problems for a year and a half before she found it was tomatoes. Quit eating tomatoes for about a year, and then was able to resume eating them with no problems.

Could it be something similar with Charlotte?

I don’t know. My pediatrician told me that allergies (and sensitivities) is one of the least understood fields in medicine. She said, “We don’t know why so many kids have so many allergies now. We don’t know why they go away for some, and not for others.”

What’s troubling is that when you have a child who has difficulty with language expression, they can’t tell you when something makes them feel bad (GI doc also told me that autistic kids have been shown to have a high pain tolerance). So parents like myself are left to try to figure out why this rash? Why this unusual behavior? Straight answers don’t come from the child herself so it’s guess guess guess.

I guess I have to take the approach of — it is what it is. In Charlotte’s life, there was a season where certain foods, apparently, bothered her in some way that she was unable to articulate, and now that season has passed.

And I, for one, am THRILLED. Charlotte had started to become so incredibly picky about food, and she just didn’t care about eating. That story has changed.

Yesterday she called me while I was out shopping and said, “Mommy, can you stop at Five Guys and get me a hot dog AND a bun? Because I’m back on buns now!!” Her joy was palpable. This afternoon she found my (hidden) box of Newman-Ohs and said, “Hey, I can have these because I’m back on Oreos!”

She’s excited about eating again. She’s starting to have opinions about what she eats again. There is such a freedom in this that I cannot describe. My hope is that it is as I truly suspect – the dietary changes were necessary for a season and we won’t need to resume it later on. I think it would be very difficult to go back to a restricted diet again.

Fortunately, Charlotte’s communication skills are such that I think she would tell me if something was bothering her. I don’t expect to see a sudden surge in aggressive behavior. More likely, I hope, is that she would tell me that she doesn’t feel well.

Meanwhile we are enjoying quesadillas and Ritz and peanut butter and hot dogs WITH buns.

Life is good!

 

What I have learned lately

My blog has been fairly quiet of late, I know.

Mostly that is because I’m spending a lot of time trying to understand nutrition and the role that nutrients play within the various systems within our body. I’m also trying to understand more about how those systems all work together and how this can affect that.

As a non-sciencey gal, it can be overwhelming. But I persevere.

I do not like having Charlotte on a restricted diet. To me, this is not a satisfactory lifestyle. I don’t believe that all of her nutritional needs can be met with these limitations. No that gluten or casein are so important themselves, but dairy and wheat do round out a diet nicely.

I know there are other ways to get grains and calcium and protein in her diet, and I use many of those ways, but I would also like to have cheese, and whole grain bread, and peanut butter, as an occasional option too.

What I have learned is that there is very little in the way of good, quality support out there. Her regular pediatrician is positively clueless about both nutrition and GI issues. Her solution to Charlotte’s infrequent movements is Miralax. “Just up and up the dosage till you get her to go.”  That is not comfortable to me. Miralax is a chemical and it is a band-aid, not a solution.  We did it for a brief period with no effect and she had some heinous meltdowns during that time. Heinous.

My readings have led me to the hypothesis that Charlotte probably has a leaky gut which would explain why her IgG test showed 29 food sensitivities. The theory is heal the gut then you can reintroduce most of those foods. We know there is some truth to things being out of whack in her gut just due to the fact that the addition of a probiotic cleared up a persistent, itchy rash.

How did she get a leaky gut in the first place? Antibiotics is one theory. Mercury toxicity is another theory. I don’t even want to touch that.

I decided to see if a Naturopath could help us. She was somewhat helpful, although I could tell from her line of questioning that she was on the mercury toxicity path (questioning whether I had silver fillings in my mouth even). I quickly and firmly let her know that I do not believe Charlotte is vaccine injured, that I’m not interested in curing her autism, but I am interested in understanding why she has so many food issues and can we resolve that and her sluggish bowels.

She recommended a protocol to kill the abundance of yeast in her gut. What I learned from that experience is to never never go against my general principles. Always trust my instincts.

My first and foremost rule in helping Charlotte is to go low and slow. I did not heed that rule and ended up following the Naturopath’s advice. It did not agree with Charlotte and we had a rough few days. It subsided immediately on stopping the protocol.

Back to the drawing board. More research. Recognition that what works for one person does not necessarily work for another. For some people, adding in probiotics is all they need to help with movements. For others, enzymes do the job. For others, both of those plus an anti-fungal.

So we go low and slow. I read as much as I can. Choose products that are well-researched and shown to be very safe with no side effects. This is my kid, after all, not a guinea pig. And we only introduce one thing at a time.

I don’t have any answers yet. We are seeing some improvements with the enzymes. Not just with the original intent of helping her bowels, but it seems to be helping in other areas too.

I am committed to figuring this out. It is not normal for a child to have so many issues with food. I am, as yet, not willing to accept this as her (our) reality for ever and ever.

What I have learned is that no one is going to figure this out but me.

 

Leaps

Lately I’ve observed some big communication leaps in both Charlotte and Sarah. It’s been both fun and astonishing to witness. And sometimes, truth be told, a little bit frustrating and annoying. But mostly all good. In my book, development is always a good thing.

What I’ve noticed from Charlotte is her processing speed has picked up, as well as her interest in others. She’s showing that she recognizes there is more going in her world than just what concerns her.

Last night, for example, I was putting her to bed and she knew I was a little frustrated with her (I think my exact words were, “I’m frustrated right now.”). We had had a fairly long day and she had agreed to let Daddy put her to bed so I can have some time to myself. At the last minute, she reneged on our deal and when I didn’t immediately agree to put her to bed (what with the explicit sequence of stories and activities that have to be carried out with it) she threw a huge fit. Including, “but I love you so much and I’ll miss you if you’re too far away. Waaahhhh!!!”

Of course I caved but I shortened her routine (much to her dismay). Up in her room I told her I was really frustrated with how bedtime was going lately. She said, “Mommy, when you have a 3rd kid, who’s going to put that kid to bed?”

“That’s a great question, Charlotte. We need to really start talking about that.”

She’s generally more communicative about her feelings and is showing a stronger awareness of why she’s feeling a certain way. Of course I don’t write stuff down right away, and now I can’t remember any specifics. But trust me. It’s been cool.

Sarah’s communication leaps have come most in the form of talking. Lots and lots of talking. As in, she never stops talking. Non-stop chatterbox. And she’s become a first-class whiner/pouter. It’s kind of amusing really. A few days ago the girls were playing Hullabaloo and Sarah had been the winner about 3 times in a row. Then Charlotte won! She was ecstatic. Sarah runs over to jump on Charlotte’s pad so she could be the winner too.

When I told her that she doesn’t get to win every single time, she was despondent. “Ohhh, I never get to win at anything. I guess I’ll just give up.” And the sad face, and down-turned pouty lips were just too much. I had to laugh.

In other news, I’m ready to throw in the towel on GFCF. Sadly, though, I believe the diet helps Charlotte. Especially the dairy part and the soy part. I’m not convinced yet she needs to be free of gluten, but we leave it out.

The area it hasn’t helped is frequency of her moving her … y’know. I have read that digestive enzymes can help with that, and may possibly allow us some more flexibility in the diet. It would be so, so, so great if I could work some cheese back into Charlotte’s diet. So great.

I HAVE thrown the towel in on the DAN! doctor. At our 2nd (and final) appointment, she wanted to prescribe an antifungal med (Diflucan) to treat Charlotte’s yeast in the gut. When I expressed concern about such a strong med and whether it would be truly effective from what I’ve read, her response was, and I quote, “Quit reading.”

Yeah, I don’t think so.

Several people have asked how I’m feeling pregnancy-wise. I can say: Great! Especially now that I pay attention to my food intake. If I hit the 3-hour mark without eating, I will (literally) slump over and feel unable to keep my eyes open. A little snack though and I’m raring to go again.

I find I have to go to bed a lot earlier and that is really cutting into my blogging time. Hopefully someday I’ll be more active again – and have the ability to process things more coherently.

Until then…

 

Observations on dietary changes

Looking around the blogosphere and the news media it seems there has been much discussion lately about whether diet changes (specifically the GFCF diet) can help children with autism.

I can’t offer up an answer to that question because, other than anecdotal reports, there’s nothing conclusive to show that the GFCF diet is an effective treatment for autism.

What I can offer up is my opinion that dietary intervention, such as removing gluten, casein, et. al., can help children with food sensitivities. If the child happens to have autism, too, it can possibly help manage some of the symptoms of autism.

I do not believe is that Charlotte’s sensitivity to casein caused her to become autistic. Just like I don’t believe that her sensitivity to soy wired her brain to decode words at age two. Or that her peanut sensitivity gave her sensory processing disorder.

Charlotte has some very clear food sensitivities. The ones I’m absolutely positive about are dairy, soy, peanuts, coconut and almonds. I’m not positive about gluten because I never saw a specific change when it was removed, but for now we’re leaving it out.

What makes me positive about these sensitivities is because when she consumes any one of them, she gets an itchy, red rash. This rash has primarily been confined to her belly area, but has been known to spread to her whole body (as we learned when she was eating almond butter on crackers for many days in a row).

In addition to doing our best to keep the offending foods out of her diet, it has been the addition of a broad spectrum probiotic that finally kicked the rash away (so far). This is the first time in 2 1/2 years that she has gone more than a day or two without a rash.

Do I know why that worked? Nope, other than perhaps she has a sensitive digestive system that needs support.

With the rash gone for such a long time, we made some interesting observations.

In the last 6 weeks, the rash appeared one time and lasted for about 4 days. I’m not sure what caused it, but it was there. When the rash appeared, Charlotte’s autistic symptoms escalated. What I mean is that her impulse control diminished (as evidenced by hitting, biting and hair pulling when frustrated). Her eye contact lessened. Her use of scripted language increased.

I asked her special ed teacher to pay attention at school to let me know if she saw anything unusual. She reported that Charlotte was spacier, used more scripted language, and needed considerable more redirection than is typical for her.

As the rash faded, things went back to Charlotte’s normal.

So many questions here. Does the food sensitivity cause the rash, which in turn causes the behaviors? Or did the food itself cause it? Does she act different when she has a rash because she has language difficulties (due to autism) that make it challenging for her to express herself?

Would another child say, “Oh, my belly is itching! This annoys me!” and otherwise go about their day without much else noticeably different?

I don’t know what the answer is here. My gut tells me that the food sensitivity piece and the autism piece are somehow related, but I don’t believe it’s in a “cause and cure” kind of way.

When Charlotte’s diet is “right” and her skin is clear, she still has autism. Ameliorating her symptoms hasn’t changed the actual makeup of her brain. If it did, then she wouldn’t “regress” (a word I use warily).

But changing her diet has had a significant effect on her symptoms of autism.

So I go back to my original statement, that dietary intervention can possibly help children with autism. It has for Charlotte. It has specifically helped her autistic symptoms. But I believe that’s because she has food sensitivities.

If a child with autism doesn’t have food sensitivities, I question whether the diet would be beneficial. What I don’t know is: are the signs of food sensitivity always as obvious as a rash? Or could the signs be more subtle?

The good thing is that dietary changes are relatively simple and harmless. And if it’s helpful, it’s helpful fairly quickly.

 

Overcoming challenges

I have probably mentioned  a time or two on here that things have been a little bit difficult at home with Charlotte.

Well, with Sarah, too, but her challenging behavior seems to be falling in the category of “I’m three, and I don’t need your help, Mom.” Oh the tantrums. Happily, and I’m feverishly knocking on wood as I write this, she is responding well to my experiment of spending a bit more time exclusively focused on her. When I let that slide, it shows.

Charlotte’s behavior has been different than that. With her I was seeing more aggression (albeit, only when provoked by Sarah, but still she must learn a more acceptable way to react). Also less language, lots of resisting everything. It was seeming like she was just off in her own world.

With Charlotte, however, other things go along with the behaviors. In addition to a slow down in removing waste matter from her body, she developed a very bizarre redness and rash on her face which then spread over her entire body.

At first, I thought she had Fifth’s Disease, but the rash on her body didn’t match. It was the same rash, normally just on her belly, that she has been dealing with on and off for going on three years now.

It’s an itchy, red, bumpy rash. We saw a massive decrease, although not total elimination, when we removed dairy from her diet. This time it did not confine itself to her torso, but moved down her legs and arms. A hydrocortisone treatment would take care of it, but it would just appear elsewhere the next day.

She also began to complain of headaches at night. She wanted to fall asleep with me putting pressure on her head. Combine headache, itchy skin, and the other problem, and she was not a happy girl.

Frankly, I would be miserable too.

I began to feel desperate to help her. Clearly there was something going on, and no amount of social stories, positive reinforcement, or the making of plans was going to solve it.

I began to wonder if she was having a yeast problem. In the biomedical world, yeast is right up there at the top of the list of things that ASD kids deal with. She  had a classic physical symptom of it (that I won’t describe here) as well as the others mentioned.

We began giving her a broad spectrum probiotic and began an intensive prune juice  regimen. (I don’t know why the medical profession always goes straight to meds when good old prune juice does the job just fine.)

We also just began a homeopathic treatment of Oil of Oregano (mixed with body oil and rubbed on her feet at night). My husband is also doing the Oil of Oregano. Any homeopathic we give her, one of us will also partake.

The hope was that if there’s yeast overgrowth, the probiotic will get to work on that. And that the prune juice would have the desired effect of just making her feel better.

It’s been 11 days of probiotics and her skin is beautiful. Smooth, soft and white (as opposed to red). She’s on a better (albeit not great) other schedule too. (Am I being coy enough?)

And my sweet Charlotte is back. The communication is a thousand times better. The eye contact is right where she’d left it. She’s even managing the aggression toward her sister-who-provokes better. I can actually witness her stopping herself from biting. It’s a beautiful thing.

She’s just so much easier to get along with. Yesterday she and I spent 4 hours shopping, hitting a handful of stores. While it wasn’t perfect (what is?) and we had to work through a few challenges (one of which involved her having to ask the manager of a retail store if that store was the first store while I mouthed “just say yes”) we had a great day.

We hadn’t had a great day in a long time it felt like.

This is where the communication challenges of autism really get to me. She has a very difficult time, it would seem, telling me when she’s feeling bad. I hypothesize that she started feeling bad, physically, before the rash and other symptoms. She is not one to initiate conversations like that. And I don’t want to grill her on a daily basis about how she feels (she’ll always say she feels “just fine” anyway).

I pray for the time in her life when she can recognize what is happening internally, physically, and can take steps to stop it before it gets completely overwhelming.

 

Middle ground

In the last couple of days the media have hit us with a deluge of articles about a study that appears in the latest issue of the Journal Pediatrics.

In a nutshell, the study says that there is no evidence that special diets help children with autism.

That is usually the leading headline.

What the study reports is that there is not any evidence that special diets help or don’t help autistic kids — or that food allergies, food sensitivities, or gut problems cause autism.

According to WebMD, “The bottom line of the panel’s consensus report is that much more research is needed to explore the intriguing links between gut disorders and autism.”

There’s a whole lot more information in between those two statements. About how the experts agreed that gut issues manifest themselves in a variety of different ways, about how children with autism, because of their communication challenges, may have difficulty expressing their discomfort and so will respond with negative behavior.

Go ahead and click on over to the WebMD article -it’s the most detailed one I’ve personally read and doesn’t appear slanted if you know what I mean.

That’s not really my point today though.

My point really is to serve as a cautionary voice to anyone who is wondering if they should try dietary intervention for the autistic child.

My caution is this: don’t listen to the extremists on either side.

On one side, dietary intervention will be immediately linked with anti-vacciners and people who chelate their children. Apparently there is this false idea out there that parents who try simple alternative treatment like removing dairy or gluten from their child’s diet are also withholding all vaccines, subjecting their children to risky “medical” treatments, and suckers in hands of quack doctors.

That’s simply not true. While it is true that those extremes do exist, it is not true that all biomedical parents are the same. I know many a parent who has removed some foods, added some supplements, and treated for yeast. They’ve not chelated. They’ve not done any other risky medical procedures. And they aren’t interested in it.

On the other side, there are parents who believe every little autistic thing their autistic child does is because of yeast, or a dietary infraction, or a whiff of exhaust smoke (exaggerating there). There are those that spend thousands of dollars, hundreds of thousands, who are maxed out in debt all in search of recovery-from-autism for their vaccine-injured child.

Some of them perhaps are vaccine injured. For some biomedical treatment does wonders. Others were likely born autistic and no diet or supplement is going to change that.

But those are the extremes.

I find that most parents are living somewhere in the middle. Wondering if their child does indeed have gut issues (I never suspected them in Charlotte till this past summer).

Wondering if perhaps the sudden outbursts, the hitting that seems to come and go, the screaming, if perhaps these aren’t linked to something in the diet.

I know I wondered those things. I am wondering those things right now.

My caution to parents who are wondering these things is to not allow yourself to be swayed by either extreme side. Dietary intervention doesn’t mean anti-vaccine and pro-chelation. It doesn’t mean “desperately seeking recovery.”

There is a middle ground that many families are living in. A middle ground of GFCF (and in our case soy free and peanut free too) diet that yields some pretty neat changes in our ASD girl. Better eye contact, began to use nonverbal language, itchy skin diminished, stopped screaming for no reason, better regulation of emotions.

Biomedical therapy in the form of diet changes and supplements is just another tool any parent of an autistic child should have the freedom to choose without hesitation. Without fear of being perceived as a quack. And without pressure to stop vaccinating and start chelating.

We parents don’t all have to choose a side and stand there vigilantly. Middle ground is nice and comfortable.

 

Ignorant no more

I used to think I was doing such a good thing all these years that I’ve been shopping the perimeter of the grocery store.

You know what I mean, right? Shop the edges where the produce, bread, meats and dairy products are located. Avoid the interior shelves where all the boxed foods (“just add water and heat”) and candy and other high-sugar, bad carb products are.

Sure, I’ve had to shop those aisles as well, though, for cereal and tomato sauce, coffee and boxes of pasta. But for the most part, I have planned meals based on what is found in the perimeter of the store.

What a sucker I feel like.

The idea in my head was that by avoiding the interior of the store, I was avoiding consuming industrialized food.

I have since learned something that many of you may already know – the perimeter of the store is just as industrialized.

Beef, for example. I, quite naively, thought that cattle were given an antibiotic only if they  happened to get an infection.

That is not the case. Antibiotics are a regular part of their feed (so is fat and blood from already butchered cattle, by the way). And I didn’t know about CAFO (confined animal feeding operation). I thought the cattle were out on the farmland, eating their mixture of grass and corn, fattening up before heading into the slaughterhouse.

Nope. They are in pens, standing knee deep in feces, continuously pumped full of a regimen of antibiotics to ward off infections, and eating nothing but corn. Cows don’t eat corn. That’s not natural. They are grass eaters.

How disgusting. From both an animal rights perspective, as well as from a health standpoint for us humans that are consuming this beef.

Why is this done? Well how else are we going to get our $1.99 Big Macs (McDonald’s is the country’s largest purchaser of beef).

But it’s not just fast food. When you are shopping the perimeter of your grocery store and you pick up a pack of ground beef, or when you are ordering those delectable Omaha Steaks, you are buying CAFO-raised, antibiotic-infused, manure-dwelling beef.

Mmm. Sounds delicious. Pass me some high fructose corn syrup steak sauce.

Hardly different with vegetables.

We all know about pesticides and that they are bad, but do we really understand GM (genetically modified) products? I know I didn’t until very recently.

I’ll give one example. Soybean crops have been genetically modified to contain a gene that will kill insects. So the pesticide has been genetically infused into the soybean. So guess who else is eating that? Us.

We are eating pesticides in our soybean oil. And in everything else that is made with soybeans. (Unless it’s organic, which does not allow the use of GMOs.)

I don’t know about you, but I feel duped.

I truly didn’t know, and did not understand, what big business has done to something  which should be very simple: food.

I feel suckered. By whom? By everybody, to tell the truth. The government for allowing corporations like Monsanto to own the patent on GM crops and and sanctifying lawsuits against small farms for patent infringement when the wind blows seeds across the dirt road. Those small farms end up folding, unable to compete with the deep pockets of Monanto, DuPont, Cargill and ADM.

Suckered, too, by the companies themselves for putting their financial bottom line above human and animal well-being.

What’s a gal to do? In an ideal world, my husband I would sell our 4 bedroom suburban home, buy some land, and begin to raise our own food.

In reality, we don’t know a damn thing about farming. So instead we will spend 3x what the average consumer spends on food by joining a CSA and buying only organic foods. We’ll only buy beef that is grass-fed ($6.99/lb for ground beef). We’re going to try our hand at canning. We’re going to start a garden.

And we’re going to try to take control of what we put in our bodies rather than let the powers of agribusiness hide it from us.