My Autism Insights

Manic Monday prompt by Mo

This weekend we met up with my sister’s family to celebrate her birthday at a new Japanese hibachi restaurant nearby.   Gus has had a sort of love/hate relationship with Japanese hibachis: when he was very young, they were no problem, at around 2 they traumatized him, and now he loves them again.  It was a great time, especially since he spontaneously decided he wanted to try sushi!  Fortunately for him, my nephew eats it and ordered some so Gus could try it.

He shoved a piece of raw white fish (it was either squid or halibut) in his mouth, and with a full maw exclaimed, “I wike it!”  The salmon didn’t get as positive a reception.  I was so impressed he actually ate it without spitting it out, that I didn’t bother to remind him not to talk with his mouth full.  We had a great time and he must have eaten his body weight in food. MM tried some new things too: edamame (soy beans), soup, and fried rice.  It was a win all around!

Which gives me a nice segue into the Lemonade Award I received from 2 bloggers: Caregiving Daughter and More Than a Number.  So, I’d like to thank them for the recognition and will pass the honor on to a couple of bloggers who exhibit a positive attitude:

Healing…Through the Eyes of Autism

Autism SucksRocks

Spectrum Siblings

Have a great day, everyone & try to keep it positive!

Prompt by Mo of Manic Monday .

I haven’t been able to come up with anything for the last couple of Manic Monday prompts, but finally, I’m back in the game.  Today’s word is candy.

We managed to get through Valentine’s Day with a minimum of candy incursions into Gus’s diet.  MM came home with a dragon’s hoard of candy, which I quickly had to confiscate.  So much for the ‘healthy’ drive at her school.  She ate more candy last Thursday than she, cumulatively, in several months.

We learned something interesting when we went to Gus’s school though.  While he wasn’t bombarded with Valentine’s candy (because he was home sick) it has been suggested to his teacher that he be given Starburst as a motivator.  This came from the behaviorist.  Because of his oral sensory issues, chewing on something helps him to focus.  He likes Starburst.  So that seemed like the best choice on short notice.  Carrots were another option, but since he tends to hum when he’s eating them (maybe the crunchiness is a factor?) it’s distracting to the other students.  Since the Starburst is working, I don’t really want to step on the teacher’s toes, but at the same time, I don’t want him eating candy.  He doesn’t process sugar well.

We came to the agreement that she will try to get him to chew fruit flavored sugarless gum (Wrigley’s Extra recently came out with a line) to see if that can replace the candy.  If not, I may allow the Starburst, although I will dislike it.

Any thoughts on what he can chew (he likes fruity flavors) that won’t wreck his teeth and send him into overdrive in the afternoons?  Ideas would be much appreciated, and I’ll thank you in advance if you leave a comment!

P.S. A word on comments: all comments are moderated, so if they don’t show up right away, don’t fret.  They will as soon as I approve them!

It seems there have been quite a few things to be thankful about this week, but I’ll stick to my usual 3:

1. I am thankful for the amazing weather we’ve had.  It’s been like springtime and I can see the difference in mood and energy level for all of us.  The fact that he just caught a cold will not dampen my glee and having a whole week of not having to wear 20 layers inside the house.

2. I am thankful that Gus received a People Respecting Others award at his quarterly assembly yesterday.  I thought it was an academic award, but I really like the fact that he got a reward for something more related to social skills.  It’s an awesome positive reinforcer.

3. I am thankful for the great conversation I had with the teacher of the class our district has been trying to get me to agree to send Gus to.  I’ll be visiting the class next week even though I doubt I’ll want him to move.  But I’m going in with an open mind.

I am also thankful that giving up sugar hasn’t killed me in the…one day I’ve been off it, but that’s a story for another blog!  Please share your gratitude below and have a great weekend!

  image from Wikimedia Commons

I will preface this post by making it very clear that I do not in any way think that my son’s Asperger’s has anything to do with mercury.  So let’s be clear that I do not generally jump up and down about mercury exposure.  But today I read a blog post by High Quality Mothering about an article from yesterday’s Washington Post online about two studies that found mercury in high fructose corn syrup, which is the sweetener of choice in (disturbingly) many foods.

I had heard something about traces of mercury in HFCS a while back but could never find significant information to back it up.  Here’s what creeps me out: it’s not that there has been mercury found in a rather high number of foods containing HFCS; it’s when you take what could be a tiny amount and consider just how much HFCS gets consumed on a daily basis…that’s an awful lot of badness in food!  Isn’t the corn syrup bad enough?  I know that trace amounts of mercury have been said to be innocuous - it occurs in nature after all.  Still, if I’ve been told I have to clear a room for 15 minutes if a tiny bit of this stuff gets into the air in my house, I certainly don’t want to eat it!

I knew there was a good reason we started removing high fructose corn syrup from our diet.  This just makes me feel better about it.

What do you think: is the food industry poisoning us, or is this an over-reaction?

Adonya Wong

As promised, today is the big day!  Adonya Wong, author of In My Mind and also of the blog Healing…Through the Eyes of Autism , joins us to share some experiences with her son Nicholas, her feelings on inspiration, and her thoughts about her book, which sheds light on autism and the way Nicholas may see the world.

Adonya’s had a diverse professional background, and started writing in her youth.  In My Mind is her first publication, just released earlier this month.  Her intention is to raise autism awareness and tolerance for those with differences.  She currently home-schools Nicholas in Oklahoma, and is donating a portion of her book’s proceeds to the Autism Center of Tulsa.

Without further ado…

Describe a “typical” day with Nicholas?

I am thankful that we do not have typical days.  However, we do have some days where it seems like I’m in a forever tailspin of déjà vu. 

There isn’t a whole lot of  “structure” in our lives.  I know… it seems as if everywhere you read, folks are telling you that our children “crave structure and routine”.

During my early homeschooling days, I learned that it was the structure and routine that frustrated Nicholas most.  Since incorporating more of an unschooling approach, life has been very relaxed.

For the most part, we spend our days traveling the information super highway or engaging in a favorite board game or reading stories or drawing or whatever HRH (aka His Royal Hiney) feels like doing.

Life is good!

Have you attempted any biomedical intervention?  If so, which one(s) and what was the outcome?

When Nicholas was in kindergarten, I put him on the GFCF diet; he was on it for 3 months.  I didn’t notice a single change in anything he did or said.  His baby tooth was also tested for toxins by the Autism/Asperger’s Research Center at Arizona State University, and the results were very interested.  He wasn’t overloaded in any way, so I didn’t bother trying anything else after I reviewed the results.

We’re pretty organic and holistic now, and we no longer eat junky foods or drink junky stuff.  I also no longer clean my house or launder our clothes with toxic chemicals; I use vinegar & water with a touch of essential oils to clean my house and natural washing soda & Borax to launder our clothes).

I’m doing my best at keeping his environment as toxic-free as I can.

Your husband is Nicholas’s stepfather, was the transition difficult for Nicholas?  How has their relationship grown over time?

Nicholas is very intuitive which makes him a pretty good judge of character.  If he doesn’t like the vibes you’re emitting, he won’t have anything to do with you, or he’ll shy away from you.

During our courtship, I told my husband that if Nicholas didn’t take to him, there wasn’t going to be a “he just has to get to know me” phase.  Fortunately for him, Nicholas greeted him with a hug.  {wink}

Their relationship has since grown into one of great strength and love.  If you didn’t know them, you would naturally “assume” they were biological father and son.

Are you easily inspired to write?  If not, what do you do to keep the writing fires burning?

Not really.  My past writings have come from great love for the recipient.  What I mean is I don’t write unless I have deep feelings for my muse which is why it should come as no great surprise that I wrote In My Mind.

Nicholas is such a joy; he inspires me every day.

Is In My Mind the beginning of a series or theme?  If not, do you foresee chapter books in your writing future?

I see In My Mind as the pilot for other stories written about autism; there’s definitely a theme.  I’m not sure at this time if I’ll transition to chapter books.  My imagination is vivid and child-like, and me likey pictures too much.  {giggling}  Picture books are such a joy.  Given the subject matter of my work, I’m going to always want to educate children about autism while these children are still very young (K-4).  I want to teach them about “differences” and about the importance of patience, compassion, and tolerance before they’re taught how to judge others.

The tour doesn’t end here!  Please follow Adonya to her next stop: the Rainbow Mum Forum.  Don’t miss out!

Thanks for joining us, and thanks so much to Adonya for sharing this wonderful book with the world!

I will veer slightly off topic for a moment to say that first I am thankful that President Obama’s inauguration went well!  I’m also thankful that Gus’s school made it possible for the kids to see it.  Gus was excited about it, but his only comment when he got home was that the speech was too long.  That’s valid coming from a seven year old.  My five year old was a bit…disgruntled about having to watch “the bad news” at first, but then became more engaged after I explained, “We have to watch this because it will never, ever happen again. No matter how many African-American presidents we have after President Obama, we’ll never be able to see the first again.”  She seemed to get it!It was an awesome day.

I am thankful that Gus’s behavioral evaluation (evaluation done by a behavioral specialist)  went relatively well, according to his teacher.  He had a good day on Tuesday and didn’t have his rough day until yesterday.  She’ll be back, but at least she’s seen that he can have a good day, and often does.

I am thankful that my buddy Adonya Wong, author of In My Mind, will be here in just a couple of days, stopping for her Virtual Book Tour!  She’ll be discussing a typical day with her son, Nicholas, biomedical interventions she tried and their effectiveness for Nicholas, and other very interesting topics!  Save the date and stop by on Saturday January 24th and see what she has to say about life Through the Eyes of Autism!

And as always, please share your thankfulness below.

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!

  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!

image borrowed from Sheppard Software

So we were doing this vegetarian experiment for a week to see what the effect would be on the family: Would Gus focus better or would he start having sleep issues again?  Would MM start eating more?  Would I have more energy?  DH was just going along for the ride and wasn’t looking for any changes to occur.  Last night, after dinner, we took a vote.

“So, what do we say?  Vegetarian or cAAAARRGHnivore?” I said in my best squinty-eyed pirate voice.

I looked at Gus and he didn’t answer, so I figured he was just going to ignore the question, but then he said, “Omnivore.”  Sounds right.

MM: “Omnivore.”

I didn’t even have to ask DH who was trying his best not to laugh.  He admitted he’d already abandoned the experiment earlier that day.  “Omnivore.”  My vote was unnecessary because I’d have been outvoted anyway, but it would have been unanimous.  We all want our meat back.

The Details

The week started off well with individual veggie pizzas.  That was the night Gus wokeup in the middle of the night, but I think if I’d made a whole grain crust (very easy to do with a bread machine as long as you plan ahead) that might not have happened.  For day 2, we had a 3-bean chili, which I’ve made before.   That went over well.  Monday was bad.  That was the meatless loaf day and I can’t even write about it again.  Just.  Bad.

We recovered on day 4 with pasta served with a portobello & black olive marinara, and thankfully I redeemed myself in my family’s eyes.  But then we hit a snag.  Thursday turned out to be a really crazy day that included lots of manual labor.  By the afternoon I was exhausted, I  didn’t feel like cooking, and I was in a very blah mood.  Normally, that would be a hot dog night - no thought or effort involved.  It would have been safer.  We had agreed to have salmon cakes one night during the week, but I didn’t have the energy to make them, so I improvised.  The result was a sort of weird fisherman’s pie (like a shepherd’s pie with salmon and potatoes instead of lamb).  We will never speak of it again after this post.

The salmon debacle signaled the beginning of the end.  I think we were all starting to crave a burger, but we carried on into Friday for a whole wheat spinach and cheese lasagna.  Epic win on that one!  And if I had known how easy it would have been to make, I would have done it on Thursday.  Hindsight and all that.  We wrapped up the week with a whole wheat baked macaroni and cheese served with a huge helping of broccoli.  MM demanded leftover lasagna, but it really wasn’t bad.  She wanted orange cheese and I used white.

Changes?

MM ate spinach and she started requesting lettuce in her salads.  Otherwise, she’s not eating any easier and will manage to find something wrong with whatever I make.  No big change there.

Gus did better than expected in the sleep department, but as far as school, his week was so-so.  He did break out of his passive mode on Monday to berate me (deservedly) for the meatless loaf monstrosity, so it was good to see him stand up for himself.  Otherwise, no change.

One problem I had was that our diet suddenly included a lot more cheese than usual.  My stomach was not too pleased.  Beyond that, I didn’t feel too different.  My energy level seemed more effected by the weather than by our diet.  However, a week is probably not long enough to really feel a difference, and since I have tried this before I know that after a time, I would have had more energy.

DH wants a burger.  Or at least some chicken.

Conclusions

We can handle a few vegetarian meals a week, but ultimately, at this point in our lives, we still need some meat in there as well.    For a long time, I’ve avoided vegetarian cooking altogether because I thought it wouldn’t work for Gus, but some simple adjustments in the types of carbs we give him made it work.  So it’s straight to the middle of the road for us.  Perhaps less red meat, better carbs and more willingness to eat some veggies.  I’d say the experiment went pretty well, all things considered.

Amazing how I’ve been up since 4:30, got up at 5 to make this post, and it’s almost 6 and I’m just starting.  I blame my new toy, Twitter.  Anyway, on to thankfulness:

I am thankful that Gus got dressed this morning without me having to ask more than three times.  No fuss, no drama - that’s the way I like to start the day!  Of course, now he’s pretending to be a rock star, Reggie Rockout, complete with green shades, blue striped hat, my clogs and acoustic guitar (he’s in disguise).  His first song will be entitled Rock it Out, and the first album will be The Best Rock Tunes Ever!  I may have to get some t-shirts and hats printed.  Is it possible I can get him out of his disguise before school time?  Can I at least get my shoes back?

I am thankful that my kids love music so much.  Even if one of them doesn’t have the most melodic voice in the world, she makes up for it with enthusiasm and incredible creativity.  Some of MM’s lyrics are pretty cool!  So at any given time, one of them is always bursting into song as long as they think no one is paying attention.  Yesterday, Gus’s song was What a Day for a Daydream. There’s a voice and acting school somewhere nearby, I think.  If things pick up economically, I may just sign these guys up.

Finally, I am thankful that I have an extremely patient husband because I think the vegetarian experiment is really wearing on him.  I won’t even discuss last night’s meal right now except to say that I did cave in and we had salmon.   It was maybe a step above the veggie meat(less) loaf.

Oh, and one of the reasons I joined Twitter was to take part in Autism Twitter Day on Tuesday, December 16th organized by Bonnie Sayer of Autism Family Adventures .  So if you’re on Twitter and connected to the autism community in some way, check it out!  And thank you, Bonnie, for such a great idea!!

Comment with your gratitude, please!