My Autism Insights

Just got back from an IEP review meeting for Gus to discuss whether or not he was approved to received physical therapy services.  It was clear to all that he needs them, so that was the easy part of the meeting.

Then came the discussion about what the behavioral specialist found.  A while back, I posted about our request for Gus to have a one-to-one aide.  Instead the district wanted him to be observed by this behaviorist.  She saw him once (and I still have not heard from her directly, although I was assured that I would) and seems to be of a mind to think he needs a different program.  Do I sound like I’m bristling just a little.  Hell yeah I am.

So my initial concern was that they would try to move him back to the program he was in 2 years ago.  Silly me - I should have known better.  They actually seem to be gearing up to push him into the program I rejected for this year.  This would be a less structured class with 2 more students in the class.  I bit my tongue, expressed my initial concerns, and promised to at least go see the program.

Here’s the problem I have right now - distractibility and sensory issues are the biggest challenges he’s facing now.  How would a more distracting, more stimulating and less structured environment possibly be a good thing?  Am I missing something?  Oh wait - yes - the main thing: it’s better for their purse strings.

I’m definitely past ‘bristling.’  But I shall play nice and go see their program.  I hope no one’s holding their breath for me to change my mind, though.

I very nearly missed that it was Thursday; I was somehow running a day behind!  Anyway today’s gratitude:

I am thankful that whatever virus or germy thing is attacking my body, it’s being held at bay and hasn’t knocked me out completely.  It would probably be wise to get to a doctor since I’ve probably jinxed myself by writing that.

I am thankful that Sesame Street has never wavered in its quality or entertainment value.  Gus and MM are watching now - Pre School Musical - and I don’t feel the need to beat my head against the wall (unlike when I watch Blues Clues).  Sesame Street rocks.

I am thankful that today is only a school delay day and not a full snow day.  Gus really needs to go to school and get some of his energy channeled into something more productive than building structures out of furniture or testing the recliner to see just how much force it can stand before snapping.  I think he has a possible career in quality control.  Or demolition.  Or comedy.  Or gymnastics.  Good to know he’s got options.

Must run now - I totally did jinx myself.

Please share your thankfulness in the comment section and have a great day.

  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?

  image from Webweaver’s Free Clip Art

Since Gus didn’t have school today, it was a perfect time to get him in to see the doctor to make sure his eyes were all right.  They are fine.  The eye exam says that he has 20/20 vision, although I think I annoyed the assistant when I asked if she wasn’t sure he hadn’t just memorized the line. (Which he did and he proved it by reciting it to me after we were back in the exam room.  Not my fault he has such a good memory.)  The doctor gave me some information on tics and said that we should probably not worry about it, but she gave me the name of a neurologist anyway, in case we were interested.  Gus has an appointment at the end of February to see the neuro.

From what I read on tics, they’re not as uncommon as I had thought.  They are defined as “repetitive, rapid, involuntary muscle contractions or vocal outbursts that usually involve muscles of the face, head, neck, shoulders or respiratory tract.” ~Disneyfamily They can last anywhere from a couple of weeks up to a year  before becoming a serious cause for concern.  The movements are frequently transient, meaning they can start in one part of the body and move to another, and generally end on their own.

The cause of tics is unclear, but has been associated to physical growth, stress and nerve disorders like Tourette’s Syndrome (which can include chronic and severe tics).

Apparently up to about 20% of school-aged children may experience some form of tic, and one study showed that the incidence of these movements increased during the winter months.

The advice for dealing with the tic that we received mostly said to help the child relax and to ignore it as much as possible unless it starts to interfere with daily functioning.   We’re not going to freak out over this.  We’ll try to find out what might be causing stress for Gus and will try to help him relax. Any other information or suggestions are welcome.  Otherwise, we’ll wait to see what the neurologist says next month.

   Now as for our Manic Monday on Snow (prompt from Mo of course), here’s a silly conversation I had with Gus at the bus stop while waiting for MM to get home:

“Did you want to play out in the snow today?”

“Yes.”

“Yes??  What do you mean yes??”

“Can we play in the snow?”

“No!  It’s too cold!”

“Why did you say that?”

“I didn’t expect you to say yes.”

Fortunately, he wasn’t too attached to the idea of going out in 20 degree weather, or else I’d be standing outside cursing my own big mouth.  He actually got a laugh out of it, so it’s all good.  Happy Monday!

Because we couldn’t possibly keep the kids cooped up for another weekend, we spent a couple of hours at the children’s museum today.  Gus loves it and MM seems to be gaining an appreciation as well.  Two of the favorite attractions today were a Revolutionary period exhibit and a DJ booth where Gus could play music while I pressed some buttons to turn on some funky disco lights.  He looks good in a sound booth and he loves mics, so maybe…

I’ve been noticing for over a week now that he’s blinking excessively.  He says his eyes don’t hurt, no headache, and he can see.  It may be that he’s tired or that his eyes are straining.  Or he could be developing a tic.  He made a comment the other night just before bed that he was trying to open his eyes.  That freaked me out quite a bit until I was convinced that he could in fact see me.  The problem is that if his vision is getting wonky, he doesn’t have the expressive skills to articulate what’s going on.  So he resorts to language that only makes sense to him.  Still, I think I’ve watched and waited long enough.  I’m taking him to the doctor and hopefully can get the name of a good opthamologist to take him to.

So that’s the update for this Sunday.  Anything interesting with your weekend?

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.

A conversation with my yoga client, a licensed dietitian, brought up this question.  She specializes in working with children with special needs, particularly those on the autism spectrum, and recommended to one parent to try melatonin for her daughter.  The daughter is sleep deprived and suffering quite a bit because of it.  Yet, Mom’s pediatrician warned her against using melatonin , saying it is addictive.  So I decided to do some looking into the subject…again.

A search for the long term side effects of melatonin mostly produced results that said the same thing: no one really knows the long-term effects because sufficient studies have not been done.  There was one study that seemed to indicate that the levels of melatonin produced by the brain over an extended time could be reduced with the use of the supplement.  Again, no one knows for sure, as it is also thought that melatonin levels decrease in the body naturally with age (also not studied extensively).

Gus has been taking .5 mg every night since mid-November, so for a little over 2 months.  I did a little experiment to see if he’d sleep without it now, since many people use it to regulate the sleep cycle and then stop using it.  Last night he had none and slept just fine.  No dependency! I wasn’t really concerned.

I generally err on the side of “use as little as possible for the least amount of time possible.”   Since the jury is still out on long-term use, perhaps that should be a consideration when trying it with children.  Certainly think twice if your child is on any kind of medication, as the two may react poorly together.  But a very low dosage for a while just to try to get your child’s sleep cycle regulated will probably not do any harm.  That being said, I’m not a doctor, so you may want to check with a medical professional first.

Further reading:

Mayo Clinic

University of Maryland Medical Center

Long-term study (full article only available via purchase - this links to the abstract)

If you’ve got any further information about the long range safety of melatonin that I haven’t uncovered, by all means, please share!

Manic Monday prompt from Mo

The other day, someone was asking about tools to help a teenager with high-functioning autism get more organized (I apologize for not remembering who/where this came from).  Kids with high-functioning autism, Asperger’s syndrome, ADHD, and other learning challenges can find it overwhelming and frustrating to keep track of all their responsibilities as they get older and expectations increase.  There are a few tools and strategies that may be helpful.  Some of these I use in my own home office because I seem to have a harder time keeping my own brain straight with every passing day.

Young Students & Pre-readers

When Gus went into kindergarten, he transitioned from an ABA program to a TEACCH program.   Each student had an office, a desk walled in by tall file cabinets that held the student’s instructional materials and files for the year.  The front of the student’s cabinet held his schedule, small laminated image cards to represent each segment of his day (think of PECS cards).  Each card had a Velcro back and the student could remove each task as it was completed.

With the help of Gus’s teacher, we adapted this system for home to help Gus in managing his routine without constant verbal cues from us.  For example, at bedtime, he could put up his cards and then remove each one (bath/pajamas/brush teeth) as it was done, right up to the point of getting in bed.  Until he was able to set his own schedule up, I could do it for him and he just had to follow it.  It was very helpful at the time.

Older students

There are several computer applications that work wonderfully for getting organized.  I personally use the calendar in Microsoft Office Outlook 2007.  But I also spend a great deal of time in front of my computer, so this type of tool is great!  Google offers a free calendar if you have a Google account.  If your child has a cell phone, many of them have some sort of calender function, or information from an online calendar can be imported into many of them. This may not seem appropriate for a special needs student, but it largely depends on the child.  Some students are much better interacting with technology than others.

The computerized calendars may not be practical for other special needs students, so my next best suggestion would be the Flylady system.  I have no affiliation with Flylady, except that I’ve used her suggestions, and even though I fall off the wagon regularly, they’ve helped me a great deal.  She offers a section of her site geared toward kids including tips specifically for students that can be customized any way they need to help get organized.

You can also get creative and work with your child to create the organization method that best suits him or her.  You can have loads of fun with a large desk sized calendar and some stickers, or perhaps your child is tech savvy and responsible enough to handle more sophisticated tools.  How do you help your child learn to become more organized?

image from Wikimedia Commons author: CJ

Yesterday, I spent a rare day out with my sister and left Gus and MM at home with my husband.  On my way to pick up Sis, I called the house to check in (not something I should do when on the highway).  First, the phone rang and no one answered; the second time, Gus picked up.  And here’s where the literal thinking took hold.

“Where’s Daddy,” I asked.   Gus was trying his best to have a conversation with me, but wasn’t modulating his voice well enough for me to hear all his words.  (Note to self: don’t try to comprehend the Asperger’s son while driving through an area you haven’t seen in over 5 years - you will waste lots of gas on wrong turns.) In between mumbles, Gus got distracted, but to his credit he kept coming back to me, “Are you still there?”  That I understood, and wow - way to focus, Gus!  Finally, I asked him to bring Daddy the phone.  The line went dead.

I had assumed that Gus was on the cordless.  (Second note to self: why would you assume anything with Gus?)  Guess again!  In an amazing attempt to follow my very vague instructions, he disconnected the receiver from the wall phone and brought it to his dad in the shower!  He did what I asked, quite literally.  Next time, I should be a little more specific.  Gotta love that he’s following directions, though!

Do you have any amusing stories about a literal thinker?