My Autism Insights

Bonnie Sayers, of Autism Family Adventures and coordinator of the recent Autism Twitter Day, recommended that I do a post on Eczema since both my kids have to cope with it.  I intended to write it but kept getting distracted.  Then my sister-in-law sent me some information, and now I figure that’s the Universe’s way of telling me to just write the darned thing already.  So…

Gus and MM have both had to deal with eczema since they were babies.  The Mayo Clinic describes eczema , or atopic dermatitis, as an inflammation of the skin.  Our old pediatrician, when Gus first started displaying the signs, simplified it for me as “severe dry skin.”  It has often been thought that eczema was an allergic condition; however, a New York Times article from April of 2008 suggests a genetic cause.  Since I am by no means an expert on the subject, I’ll just stick to what we’ve experienced with the condition.

Many people experience eczema during the change of seasons or during the cold weather seasons.  That is the case with MM who has had such bad eczema flareups that she’s gotten bad scarring.  Gus gets his flareups in the late spring/summer.  The minute the temperature goes above 70, he gets the patches, usually behind the knees, inside the elbow, the wrists, and between his shoulder blades.  This winter, MM has been getting bad rashes on her wrists and hands, I expect because she is very careful about regular hand washing, which leaves her skin dry.  I send her to school with a hand cream, but what are the odds that a kindergartner will remember to use it all the time?

It has been suggested to me that diet could play a role in the severity of eczema and that certain food can exacerbate the condition namely:  wheat, eggs, milk, shellfish, nuts, strawberries and chocolate.  If you suspect that your child may have a reaction or sensitivity to any of these items, the best way to find out is by an elimination diet, which means removing these things from the diet for at least two weeks to see the potential effect and then reintroducing them slowly, noting any differences.  In terms of my own kids, looking back to when their eczema was at its worst, they’ve only regularly eaten 3 of those things.  When Gus was on a dairy free diet for 6 months, it was during the time of year when his flareups are typically the worst.  The lack of milk made only the slightest difference, if any.  We could possibly try to eliminate strawberries or eggs (MM doesn’t eat eggs anyway), but I think if I tried to remove wheat products from our diet again, I may get slapped with divorce papers…literally…from my husband AND kids. So we will have to leave the dietary interventions alone for now.

Laundry detergents and soaps can affect eczema for some people as well.  Since Gus has always shown sensitivity to anything on his skin (and his father has to an extent as well), we only use fragrance and dye free detergents.  Even when we get the ‘natural’ and eco-friendly detergents, they are always available in a ‘free’ form, meaning no dyes or fragrances.  The same goes for fabric softeners.  We use Dove soaps almost exclusively, only switching if we try some sort of organic soap.  One thing that worked well for Gus was Dr. Bronner’s Hemp/Tea Tree liquid soap.  The rashes actually got smaller almost immediately using that, but neither one of the kids will tolerate it because it smells very strong.  Stinky, but it works.

So, how do we manage the flareups?  Moisturizing.  Lots of it.  Several layers of it, every night.  Because I like to try to use all-natural products as much as I can, one year I tried pure aloe vera gel to manage the rashes.  It worked okay.  It definitely helped, but the rashes and discomfort were always still there, just muted.  And the aloe required several reapplications during the day, which was not all that practical for Gus who was in school even over the summer and couldn’t apply it himself.  For right now, here’s what’s works the best for us:

Immediately after baths - Aveeno oatmeal lotion (or a comparable brand) applied liberally, all over the body, followed by a thick application of good old fashioned Vaseline or some other petroleum jelly.  If there is a particularly bad flareup, I may use the tiniest amount of hydrocortisone before the Aveeno, but we haven’t had to do that much at all this year for MM (Gus isn’t having any flareups at the moment).  During the ‘off’ season, when the rashes go away, I still use Eucerin (or something comparable) after baths because even without the rashes, both kids still have dry skin.

A quick word about petroleum jelly.  I know many people prefer not to use the oil based product.  I tried to avoid it myself (hence the aloe vera).  We’ve tried other means of dealing with the eczema aside from the ones I’ve mentioned.  I have to say - the only thing that has worked significantly has been the moisturizing regimen.  That’s my story and I’m sticking to it.

But since every body is different, I’d be most interested to hear about others’ experiences with treating eczema!  Please share in a comment!

Prompt from Mo at Manic Monday .

Hmm…things that we have a bounty of in our lives right now:

Days off and half days -  These are bountiful this month and next.  Between holidays, parent/teacher conference days, and any other reason the district can find to shut down,  Gus will be home an awful lot.  So much for the consistency and structure that he needs in order to function.  However, we will get the opportunity for some home learning.  Unfortunately, this also means less time during the day for me to work.  And when work does not get done, the paychecks are not so bountiful.

Toys and stuff that needs to not be in this house - Every year when the holidays roll around, I try to weed out toys that are a) no longer age appropriate b) broken c) not ever played with.  The toy chests are overly bountiful.  The purging never seems to work, which is becoming a problem.  Gus has a hard enough time focusing without having a gazillion options.  Also, trying to help him learn to be more independent in cleaning up after himself becomes even more difficult for him when the amount of things he has to be responsible for is so overwhelming.  And his is the more organized of the two kids’ bedrooms.  Don’t get me started on his sister’s…

Cheese - If I had known how bountiful the joy would be just from such a simple thing as being allowed to eat cheese, I never would have stripped it from Gus’s diet.  He’s been eating dairy again for a few weeks now, and I haven’t seen a significant difference in behavior or focus.

So, to sum up, if it was not clear enough, kids on the autism spectrum (and probably kids in general) benefit from structure and consistency, are not helped by clutter, and are not harmed (unless there is some other gastric sensitivity or allergy) by dairy products.  And that’s all she wrote today.  Your thoughts and comments are greatly appreciated!

It’s been a long week and some thankfulness to put things in perspective is in order.

1. I am thankful for the two nights of uninterrupted sleep I got this week.  The third night, last night, was not the charm.  We may have to start taking some other proactive measures before bedtime.  The second time Gus got out of bed last night, I tried taking the bad stuff out of his head - I put my fingers to his forehead and made a vacuuming sound - so he wouldn’t have any more bad dreams.  He seemed to go back to sleep after that.  I think we’re also going to take all these florescent lights out of the house.  They may be better for the environment, but I have a sneaking suspicion that they are not doing very well for him.  I find the noise they make very irritating, so I wonder if they are contributing to some of this.

2. I am thankful to have a husband and father for my children who is relatively engaged with his kids, especially now when the ‘boy’ issues are starting to emerge that I so don’t want to have to deal with.

3. I am thankful that we’ve decided to back off on the casein-free diet.   We’re not going whole hog back to dairy, but I’m allowing cheese back onto the menu.  The pure bliss on my kids’ faces over being allowed to have cheese again made it clear that we’d made the right choice.  It should always be that easy to make kids that happy, so I’m grateful to have been able to do something right by their standards.

Please feel free to share your thankfulness in a comment.  These days it seems more important than ever to remind ourselves of even the smallest blessings.

zen garden image from nationalgeographic.com

I read a lot about autism these days, and one thing that tends to raise my hackles is when people talk about autistic children as broken, kidnapped, lost, or insert bemoaning term here.  When Jenny McCarthy released her latest book, I pretty much ignored her, because I just can’t take her seriously.  Then PETA decided to try an ad campaign exploiting autistic children.  They had billboards with a bowl of soggy Cheerios making a frowny face that read: Got Autism?  This was to imply that if you give your child milk, they’ll become miserable autistics.  That was bad enough, but when I looked at PETA’s website, there were comments applauding the ad campaign from parents of autistic children and blaming the loss of their children on milk.  That was the last straw for me.  There has been more and more evidence to support the fact that autism is not caused by vaccines, mercury, or diets, but that it is predominantly genetic.  So it seems to me that the conversation should be about what to do to help those individuals deal with and environment that poses constant challenges instead of remaining in this false loop of logic.

Raising autistic children can be, often is, hard.  Raising any child can be, often is, hard.  Regardless of what each child’s challenges are, it is a parent’s job to do all they can to prepare their child to function in the world.  As a parent of an autistic child it is my job, to the best of my ability and to the highest capacity he has to learn, to prepare my son to function in this world-not the world I wish we lived in, but the one that actually exists.  And notice, I don’t mention anything about making him “normal.”  He’s perfectly normal-for him.  (And honestly, some of what is called “normal” in our society is pretty despicable and scary, so let’s leave that word alone.) Yet, I do have to help him to be able to go out there and co-exist with others.  Yes, it’s hard, but that doesn’t negate the need or my responsibility.  I absolutely get tired of repeating things thousands of times.  Of course it’s frustrating to feel like he might never “get” what I’m trying to instill, but I still have to try.  And I don’t feel bitter or robbed or any other sort of loss that so often seems to be be the stigma of life with an autistic child.

“You get what you get, and you don’t get upset,” is an appropriate line from one of the dozens of kids’ programs that rule my television.  That’s what you sign up for when you make the decision to be come a parent.  There’s no menu selection tab for “easy child.”  Okay, so my child is autistic…things will be different than I expected, probably a lot harder…move on and deal.  It takes time to get there, but ultimately, for the sake of the child you love, you have to.

When Gus was little, he had a fascination with the bottom kitchen cabinets, where I always kept cleaning supplies.  I tried a child gate to keep him out of the kitchen, but he was pretty wily and always managed to get around/through/over them.  Clearly, he was not to be thwarted, and why should he?  At some point, he’d have to be allowed in a kitchen, and he should be able to do so safely.  So I moved anything remotely dangerous to a high shelf, and made the cabinet under the sink my place for Tupperware storage.  Being allowed to play with the Tupperware was a safe compromise.  I still had to redirect him from other cabinets, which he was not always happy with, but eventually he stuck to his area.  Lots of repetitive, unpleasant redirection that paid off.  He’s asked more than once to take cooking classes.

A more current issue is that Gus has always tended to run around after dinner (in the past it was all during dinner) and unwittingly, he touches anything in his path.  The problem is that 90% of the time, his food has to be covered in ketchup or some sort of sauce.  For a long time, the walls and curtains always looked a mess and I couldn’t see a way to get a handle on the situation.  He’s learned to sit at the table most times, but as soon as he’s done, he goes for a couple of laps around the room.  He should, and wants to, respect his home.  Finally, we just make him stop in the bathroom to wash his hands before going on his circuit.

These are two pretty minor things we’ve had to deal with.  There were bigger lessons that took years to teach Gus like not running into traffic, potty training, or writing his name.  Tough challenges, but things he needed to learn.  They took patience, creativity, consistency, and faith that he’d do it eventually.  There were many days I wanted to just give up, but we just kept re-evaluating where he was at any given time, and working from there.  We have to keep looking at our childrens’ strengths and adapt to them.

I’m not suggesting that I know what the future holds for us, or that there aren’t those parents whose children’s autism is so severe that their only choice is to make the hardest decision to honor where their child is by having that child live in a residential care facility.  All I’m saying is that our attitude at any given moment, the way we view our autistic children, will have a direct impact on the way they view themselves, and that in turn will greatly effect their ability to navigate the world around them.  If we look at them with love, acceptance, and faith we offer them a much greater service than viewing them as damaged or as burdens.  By working with their strengths, we give them the confidence to know that they can interact with an environment that isn’t always so attractive.  By accepting the reality of the present moment instead of lamenting what we wish it would/could/should be, or worse, looking for scapegoats, we ultimately make things a little better for everyone.

Image and meme from Manic Monday

Aw nuts! Just when I thought I was safe, he was up again!  This time he got up twice!  That’s what I get for rejoicing that I would have several days of not having to get up for work at 4:45 am.  That’s what I get for speaking too soon.

Aw nuts!  Just when I thought I might be able to let him eat cheese, he has a totally unfocused, hyperactive weekend filled with running off and all manner of chaotic behavior.  Was it the cheese or the weather or the moon conjunct Mercury in the 11th house?  Who knows?  But cheese is back on the banned list.

Aw nuts!  Just when I can put him in soccer he decides he wants to play football.  And really, is there any nice way to tell him that if he thinks I’m letting him play football, he’s nuts?  And double nuts, now his sister suddenly seems to think she doesn’t want to play soccer either.

Aw nuts!  I thought I could get out of making our costumes for the Halloween/birthday party this weekend, but I’ve been talked back into it. Let’s hope Pikachu’s tail survives and that Ash’s Pokeball doesn’t get lost.  I think I’ll wear a hat instead of the pink Team Rocket wig.  And that means getting all my deadlines met early so I actually have time to do this.  No pressure.

Four aw nuts! moments and it’s only Monday morning.  Have you have any aw nuts! moments today?

image from Royal Society of Chemistry

I’m starting to wonder if keeping Gus off of dairy is really making a significant difference in him.  On one hand, since he’s been off dairy, he’s been more focused (not focused, just more than he was before) and he’s made wonderful progress.  But who’s to say he wouldn’t have made the same progress anyway?  What if the progress was just coincidental to being off of dairy?

If my kids would either drink other ‘milks’ besides cow milk, or if they would eat more calcium-rich foods, I’d worry less.  But the longer they go without eating or drinking dairy, the more I worry that they aren’t getting balanced nutrition.

On the other hand, there are many kids who eat much worse than mine do and those children seem to be just fine.  But as with any other decision there always has to be a period of questioning, weighing options, second guessing…

It’d be really nice if there were some sort of study to confirm whether or not he should be avoiding dairy or not.

On a separate note, my mother-in-law showed me an article from the current issue of ADDitude magazine that mentions a possible connection between ADHD symptoms and iron deficiency.   I doubt that Gus has any issues with iron because in addition to eating fairly well, he also takes vitamin supplements.  I find this particularly ironic considering autism has also been thought to be caused by excess iron in the diet.

image by Jannagraphics

Thanks to Mo of It’s a Blog Eat Blog World for the prompt!

We’ve been on a casein-free diet for several months now, a holdover from my brief dabblings into the world of biomedical treatments for autism.  I’ve let most of that go, but the dairy-free has lingered.  Gus still seems a little more focused when he’s not consuming dairy, MM and my husband won’t touch milk, and I get very ill at the first sip of the stuff.  Cheese is a little harder to do without because we all like it, even if it does put me in gastric distress.  Anyway, one of the ways we’ve had to compensate for the lack of calcium in dairy products is with juice.

Ironically, in terms of absorption, the calcium in juice is probably absorbed better than that in dairy products.  If I remember correctly, it has something to do with vitamin C.  But there’s another irony: sugar and high fructose corn syrup.  I try to keep my kids away from those two things (at least in excess) but without the juice, they wouldn’t get much calcium at all.  Even calcium supplements only provide about 20% of the RDA unless they take something like Viactiv, which is a) gross and b) has milk and c) has chocolate, which my kids also do not get except in the rarest instances.

So we deal with sugar over dairy.  Thankfully, there are more products on the market that are calcium fortified:

Minute Maid makes calcium fortified apple juice and fruit punch available in bottles and juice boxes (no sugar added).

Apple and Eve makes juice boxes of calcium fortified juices that have no sugar added.

Almost any orange juice on the market will offer a calcium fortified version.

Sure there are other sources of calcium, but with picky eaters (and kids on the spectrum are notorious for food sensory issues) juices are usually acceptable to most palates.

Sugar was a problem, so we cut out as much of it as we could. Milk was bad because it has casein, which has a sort of doping effect (reportedly) so we cut it out almost completely. But cutting out milk means that we have to give Gus calcium supplements, most of which, ironically, are made with milk. Enter: the Gummies. Yeah, we give him candy-calcium. And now he’s figured out how to open the not-so-child-proof cap. Half a bottle the other day; seven today by the time I caught him. Is it possible to overdose on calcium? Maybe we should just give the kid some cheese and forget about it.

Gus saw the specialist today and it was his last day on Strattera. Yay. I should feel happier, but the whole encounter was a mite stressful (and if you don’t believe me, just ask the waitress who watched me binge eat my way back to sanity this evening). Let me just say that under no circumstances should a doctor make a conclusion about a child patient who has been sitting in a waiting room for an hour and a half, after sitting in a car for an hour and a half, after being in school for the entire morning. Heck, I needed medication after that!

The kids were off the charts by the time the doctor came in to talk with us. They were fussing so loudly that sitting three feet apart, the doctor and I could not hear each other. He got annoyed at one point because he seemed to think that I was insisting on trying Focalin; I was insisting that Gus stay off meds at least for the summer. Clearly, that was not the right answer either, although he did eventually say, “Whatever you want.”

Apparently, actively listening to patients is not one of the things they test to obtain a doctor’s license. Yelling at patients who disagree seems to be an ingrained skill, however.

He suggested that we consider Abilify. He doesn’t want to go the stimulant route because weight loss is a big issue. But my son is not psychotic, so I am having trouble reconciling the idea of putting him on an anti-psychotic drug. To use the vernacular: WTF?

I really wanted to crawl under a rock by the time we left the office. The children were fairly calm once we left the office. M fell asleep almost immediately (after maliciously dumping water on Gus - they were not feeling warm fuzzies toward each other) and Gus chilled out listening to the Beatles on the way home. We went to a diner and said they could have whatever they wanted (non-dairy diet be damned).

All is calm now and the little cherubs are asleep. More importantly, the little cherubs are both drug-free, at least for now.