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Eczema
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!
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Thursday Thankfulness
Thankfully, the weather has cooperated and everyone is back in school today! That means I can actually make my post at a reasonable time. So this week, I am thankful:
- For only having one casualty of the school cancellation yesterday: our trampoline. DH made the mistake of jumping on it with MM and the rest is history (so is the trampoline). But it could have been worse. There was a sort of chair sculpture, very reminiscent of the one in Poltergeist II, that could have been a real disaster. Gus was feeling particularly creative, but oddly he was not the destroyer yesterday.
- For being able to go work with my prenatal yoga client today. After 2 weeks of Holiday break followed by school delays and cancellations, I really needed to get away for some adult time.
- For Gus learning how to meet some of his own needs even if he can’t always express them. This morning, MM got a bad splinter stuck deep in her finger. As soon as Gus heard this, he started looking for hiding places, because he knew she was going to be crying at some point. When he realized his first hiding spot wasn’t getting him far away enough, he went up to his room, closed the door, and got into another of his favorite hideaways. He’s grown enough to be proactive about avoiding the things that disturb him instead of waiting until he’s at the edge of his rope! Go Gus!
What are you thankful for today?
P.S. Opinions on the new header would be greatly appreciated. I won’t be able to change the layout because Today.com is going to a universal layout for all bloggers, but I can at least have my own header. What do you think?
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Accepting Reality
“I wish it wasn’t raining so we could take the kids outside.”
“Well…it is raining.”
How often does wishing for things that simply are not part of reality make us feel worse about our situation? How often are we not being truthful about what our reality is? For example, my husband’s statement about being able to take the kids out just made him feel worse about the fact that we were stuck indoors today; wishing that it wasn’t raining, sleeting in fact, wasn’t going to change the fact that it was too nasty to go out, so why bemoan it? And he wasn’t being completely truthful: He wanted it to stop raining because he was bored, and he wanted to go outside.
What does this have to do with autism? It occurs to me that at one time I argued with reality. I worried and angsted and wished for some way to ‘fix’ Gus’s issues, and what was worse, I had these thoughts (or so I told myself) because I wanted him to have a better life. Except he wasn’t the one complaining. I think at that time, I wanted me to have an easier life. I wanted the fulfillment of my own expectations. I’ve since come to a place of more (not perfect, but working on it) acceptance.
A few years ago, I read a book called Loving What Is by Byron Katie, and her words about accepting reality have stuck with me since. I haven’t done ‘The Work,’ and I’m no expert on her methods, but I’ve gotten at least far enough that I can deal with Gus’s disabilities without anger or resentment or any of the myriad negative feelings that are often expressed by some people about life with a child on the autism spectrum. And I’m not judging those people who do feel that way - I’m not living their reality; I can only work with mine.
What’s interesting is that there are two realities that parents of children with autism (and other disabilities, truth be told) have to face. There’s the reality that this is your child and you have to love and accept him/her for who they are. But there’s also the reality that your child will eventually grow up and have to function in a society that is not (currently) so unconditionally accepting. So by necessity, we either have to teach our children to navigate the world, or we have to change the world, or we have to somehow do both.
Until those things happen, I will keep entertaining and teaching and redirecting and doing my damnedest to be patient when things don’t go exactly according to my plan. The reality is that my plans are pretty insignificant in the grand scheme of things. I can either go with the flow or fight the tide. But if I get all wrapped up in the fighting, when the sun finally does come out, I’ll miss it and the chance to go out and play.
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Socially Inappropriate or Just Honest?
image by gmbmom on Photobucket
Gus and I have been playing a little game where he pretends to carry me on his back (like I do for him sometimes) and he collapses under my weight. This came about because I said he couldn’t possibly carry me.
This morning, he took my hands and slung them around his shoulders and tried to start the game again. When he collapsed I said, “What’s the matter am I too heavy?”
“Yes!”
After a laugh, I replied, “You’re supposed to say, ‘No, Mommy! You’re light as a feather!’”
Then I explained how he should never tell a woman she’s heavy; it would hurt her feelings.
“But some of them are!”
I can’t really argue with that.
I’ll have a more useful post later in the week after I finish with a monster deadline. In the meantime, feel free to browse this blog & if you like it, why not subscribe?
Have a great day!!
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Having Fun Without being Overwhelmed
Our last ‘holiday’ activity was to take a trip into New York City to visit the Swedish Cottage Marionette Theater located near 79th Street and Central Park West (there’s an entrance across from the Museum of Natural History). You may question, “Why not visit the Museum?” For a kid like Gus who gets overwhelmed with sensory overload very easily and wants to be everywhere at once, the Museum is fun, but it’s also an endurance trial that greatly shortens the length of time that he can manage himself. The puppet theater, however, was just his speed.
We saw a production of Peter Pan. The show lasted 55 minutes, perfect for short attention spans (of a 5 year old and a 7 year old with ADHD symptoms in addition to his Asperger’s). It’s a very small theater, so even at its most crowded, there aren’t but so many kids. It wasn’t very noisy or busy, and even the little bit of chatter before the show started was annoying Gus who was trying to listen to the music playing. He coped. Once the show started, he was thoroughly engaged and sat through it, probably better than some adults who were (very rudely) up and down, in and out of the theater. At one point during a set change, there was music playing and a disco ball shone lights on the curtain, stage and ceiling. It was like when Gus was a kid and used to get mesmerized by the ceiling fan or the wind blowing through the leaves in the trees. Complete fascination. Even MM got a little zoned out watching the lights.
It was a very long car trip for us, but worth it in the end, despite the obscene parking cost and the subsequent back pain I’m dealing with today. We thought about taking the train and then subway, but I was worried about Gus getting overwhelmed and overly ‘bouncy’ in what would be for him a dangerous environment. In the car though, the kids had a packed lunch and chilled out listening to their favorite music. We got there early enough that they could spend some time at a playground near the theater to work out some of their energy before having to sit through the show. Before making the trek home, we stopped in the boroughs to visit with my sister and have a bite to eat. They slept on the ride home - easy peasy.
Many times it can be a challenge to find entertainment for children on the spectrum because of all the sensitivities to their environment. I’ve found that little excursions to things like community theater, the puppet theater, smaller kids museums, or outdoor activities have worked best for us. Both kids enjoy their time without getting sent over the edge. And that works for me.
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Thursday Thankfulness: Brand New Day
Or a brand new year as it were! Happy New Year, readers! Today I am thankful for:
- Getting home safely from our brief New Year’s Eve celebration at my cousin’s. We got hit with a snowstorm yesterday morning, and decided to go out anyway as soon as the snow stopped. The roads were kind of bad, but the kids were so excited about seeing her kids that we chanced it. Her son is a few weeks younger than Gus and has a similar diagnosis. They usually only interact in passing, but yet always seem excited to see each other. They did play together yesterday, so it seems that they may progress toward being friends one of these days.
- I am thankful for a very patient and kind waitress this morning when we took the troops out for breakfast this morning. In my infinite wisdom this morning, it didn’t occur to me that we had waited too late to get moving. Gus has a much harder time with his coping skills when he’s tired or hungry. So he got upset that we had to go to our table before he was ready, and he was quite rude to the waitress. I wouldn’t say he had a full blown meltdown, but he was pretty loud and clearly distressed. The waitress never even flinched or frowned, just went on as if he were being the most docile child on the planet. Had I been less agitated myself, I would have thanked her especially. The world needs more people like her.
- I am always thankful for the chance to start fresh and to try new things. We got some good news yesterday which was a good omen for things to come.
What are you thankful for at the start of this new year?
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Year in Review and 2009 Goals
image by Designed to a T
I usually like to reflect on how our lives have developed over the past year. Gus has had a very up and down year, but I think has come out ahead for it all. Some of 2008’s highlights:
- Tried several dietary adjustments with no significant or sustained difference in Gus’s ability to focus or self-regulate in school. But he is healthy which is always a plus.
- Tried medication, which in my opinion was a disaster. It took my lively and brilliant little boy and crossed the roboticness of a Dr. Who Cyberman with the grumpiness of a Dalek. I don’t see another medication trial in the near future unless there is some extenuating circumstance.
- Gus learned some new self-care skills this year: he can now put on shoes (with Velcro), dress with minimal prompting in the morning, and can put on fingered gloves independently.
- Gus learned to ride a two-wheeler AND within a month of learning completed a six-mile bike tour - a huge accomplishment for any seven year old.
- He joined a soccer team and really enjoys the game.
Those are just a few of the more momentous events of this past year. Gus has expressed a desire to “behave better in school” in the coming year. In addition, we plan to try to get him some more opportunities to socialize, possibly in a singing class or a special-needs bowling league. In the spring, we should be able to start doing some bike riding together and we’re going to join a cycling club as a family. That will open some opportunities for more of those long, scenic rides that are so calming for him, and may also allow him the chance to make a friend if that’s his wish.
One of the reasons I’m becoming attuned as a Kundalini Reiki practitioner is so that I can start using Reiki energy to help Gus to stay calm and focused. If it has the benefit I’m confident it will, I’ll eventually teach him to channel Reiki energy himself.
In terms of the autism community at large, I’ll continue to share my lessons and experiences through this blog for as long as I am given a platform. In the near future, a fellow blogger and author, Adonya Wong , will be guesting here on her virtual book tour. She’s written a wonderful picture book entitled In My Mind and will discuss the book and her experiences with her son’s autism. Adonya’s visit promises to spark some great discussion, and there will be a sweet giveaway as well. Stay tuned!
So those are a few of our intentions for the coming year. What progress have you seen this past year, and what are your plans for the days ahead?
To all my readers, new and old: Have a happy and safe New Year!
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Manic Monday on Tuesday: Tradition
Prompt by Mo at Manic Monday
Got home too late to write a post yesterday, unfortunately, but I wanted to post anyway about the apparent tradition in the healthcare field to dismiss or discount what a patient is feeling (or conversely, not feeling). It has always amazed me that so many professionals can tell a patient that there’s nothing wrong because they don’t see what the textbook says they should; it’s easier to say the patient is imagining things. “That’s not pain you’re feeling; it’s pressure.” That’s my favorite line. But, for someone with sensory processing issues, they may feel things differently than the average person. Pressure, vibration, sound…those things may all equate to pain.
My visit to the dentist yesterday was one example of this tradition in action. I went in to have a tiny cavity filled - should have been a very quick and fairly painless thing, and mostly it was. I told the dentist that my mouth is very sensitive - I’ve lived with it all my life, I think I should know by now what I can and cannot tolerate, right?
I dealt with the injection, but apparently Dr. Dentist decided that he didn’t need to wait for me to get numb and started drilling away. Of course I felt everything. Then he figured he could wait another ten seconds. I was more numb, but here’s the thing - it wasn’t just the physical sensation that was hurting me. The sound of the drill felt like a rusty train spike going through my head. It very nearly brought me to tears each time he used the small drill. I wasn’t annoyed with the dentist at first. He really had no way of knowing.
But once he was done, I gave a small apology for all the ‘jumpiness’ and tried to explain that even after my tooth went numb, the sound of the drill was still painful to me. “I think you’re more sensitive than your teeth are.” His tone was dismissive, derisive. I did not appreciate it.
There really needs to be a nationwide training program for healthcare providers about things like sensory differences and the autism spectrum. It would hopefully serve to make those providers who like to sneer at the silliness of their patients a little more compassionate. Needless to say, Gus, who can’t tolerate the electric toothbrush, won’t be going to that dentist anytime ever.
P.S. This is not to imply that I have ever been diagnosed with a sensory integration disorder, simply that I have enough sensitivities to things that have been discounted by healthcare professionals that I can empathize.
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Yet Another Facet of Sensory Integration Disorder
With Sensory Integration Disorder, there is typically either an oversensitivity to an environmental stimulus like noise, texture, smells, etc. But there can also be an undersensitivity to stimulus as well, which we see when an individual with Sensory Integration Disorder is seeking sensory input, for example, crashing into things.
I’ve written about Gus’s oversensitivity to certain things, but today he reminded us of one of his undersensitivities - high tolerance for certain physical sensations. He took a bit of a spill on a treadmill today and hit his back leaving a nasty bruise. Now if I had done that to myself, I’d probably still be in tears. When I asked him about it though, his response was a very impatient, “It will heal!” If we hadn’t asked about the bruise at bath time, he never would have even mentioned it.
It’s pretty amazing, like his noise sensitivity only seems to pertain to certain noises, his pain threshold only seems relevant to certain types of pain. He can’t have his toenails cut without howling that it hurts, but today’s event was completely ignored.
The boy fascinates me to no end!
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Noise Sensitivity but Not to Singing Plushies
Hope you all enjoyed/are enjoying your holidays! We spent Christmas day visiting family. Although it was a long day involving a good bit of travel, it was lower-key than usual, which was a good thing. The last leg of our journey was to my husband’s aunt’s house.
They have a collection of singing plushies: singing Christmas trees, snowmen and penguins, dancing Santas…the works. There was even a tree that danced and walked toward you. Gus is always fascinated by them. He especially enjoys making them all sing at the same time! So apparently, his noise sensitivity does not extend to lots of different toys singing different songs all at once! But when his sister cries it’s like the end of the world as we know it. As irritating as all the mixed songs were to me, the unabashed bliss on his face eventually made me keep my mouth shut and just let him have his fun.
Always interesting to note all the little nuances of Gus’s Asperger’s and Sensory Integration Disorder.
Did you notice anything new or interesting over this holiday?
