My Autism Insights

Right now I’m thankful that we all got through the morning with no tears.  We came close!

Otherwise, today I am thankful for:

Having a night off from any obligations.  As grateful as I am to have my job, it’s also been a tiring week, and I’m happy for the rest.  Gus had a rough day yesterday and a difficult morning, which was a bit draining for me as well.  Heaven would be to get to sleep before 10:30.

PARP - Parents as Reading Partners.  This year both kids were involved in this reading program at concurrent times.  It’s been lots of fun, and we’ve really enjoyed going through several chapter books together.  Gus’s pick has been the Magic Treehouse series by Mary Pope Osborne.  Historical/fantasy, extremely well researched and loads of fun.  She even wrote reference books for some of the later works in the series.  Another series he loves is Time Spies series by Candice Ransom, again these are incredibly well done historical fantasy, which seems to be the genre of choice lately.  (I’ve even learned quite a bit from both series.) We’re going to try Encyclopedia Brown when we’re done with these.  Both kids also enjoy the Junie B. Jones books by Barbara Park, which are hilarious, and even though the character, Junie B., is probably not the best model of socially appropriate behavior for Gus, he seems able to recognize her lapses in social skills, so they are helpful in that way.

Finally, I’m thankful for all my visitors, readers, EC droppers, commenters, Twitter followers and pretty much everyone who has supported this blog!  I don’t always reply to comments because the interface is clunky and annoying, but I just wanted to throw out a big THANK YOU!  Your presence and support is much appreciated!

And now, please share your gratitude as well!  Have a great Thursday!

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.

I mentioned in a previous post that My Autism Insights will be hosting Adonya Wong on her Virtual Book Tour promoting her book, In My Mind, and spreading autism awareness around the blogosphere.

“She will be sharing her thoughts on living with autism, writing, getting published, and future works.  In addition to these interviews, you can read reviews of In My Mind and listen to an audio interview by Autism Hangout.”

Adonya will also be conducting a giveaway - a pretty sweet one - for commenters along the tour route.  My Autism Insights will be stop #6 on Saturday January 24, so please be sure to follow along!  Here’s the rest of the tour itinerary:

Monday, January 19

Host: Bonnie Sayers, Autism Family Adventures

Tuesday, January 20

Host: Matt Gilbert, Doctorious.org

Wednesday, January 21

Host: MaryTara Wurmser, The Bon Bon Gazette

Thursday, January 22

Host: Katrina Shanks, The Queen’s Pen

Friday, January 23

Host: Sunshine Boatright, Rawtism

Saturday, January 24

Host: Andrea S., My Autism Insights

Sunday, January 25

Host: Lori Guthrie, Rainbow Project DFW

Monday, January 26

Host: Tim Welsh, Tanner’s Dad’s Blog

Tuesday, January 27

Host: Kari Wolfe, Imperfect Clarity

Wednesday, January 28

Host: Tammy Lessick, Autism Learning Felt

Thursday, January 29

Host: Adonya Wong, Healing… Through the Eyes of Autism

Please check out all Adonya’s stops!

And a small disclaimer, while I may or may not necessarily agree with everyone’s opinions, I do fully support their right to be heard and respect their contributions to the autism discussion.  We’re all interested in the common goal of raising awareness and furthering the discussion, so each perspective is a worthwhile one.

Have a great day!

“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.

Manic Monday prompt by Mo!

This is my least favorite time of year for so many reasons, but shopping is right up there on my personal Seven Levels of Hell list.  That’s probably why I do most of my holiday shopping in September and October.  Today is supposed to be Cyber-Monday, the Internet equivalent to Black Friday, I suppose, but I did my online shopping yesterday.  Thank you, Barnes & Nobel for your coupon deadlines!

Gus will be getting (courtesy of his grandparents) the Scholastic Children’s Encyclopedia and a boxed set of Encyclopedia Brown novels.   What could be a better gift for a kid who wakes up asking about things like the 4th dimension and time travel?  When it gets closer to the date, I’m also going to download Encarta 2009 for him, particularly cool because we get to avoid the packaging for this gift!  Go green gifts!

Our purchases for Gus have included: a few Pokemon themed gifts, my old MP3 player loaded with his favorite music (because we recycle) and assorted books for the stocking.  There may be a DVD in the works, if so, it will be High School Musical 3 and will probably be an impulse buy from Walmart while food shopping.  This may seem like a scanty list, but our goals this year were to give the kids more meaningful gifts that they will actually play with (as opposed to just stuff that will sit around cluttering up our already cluttered space) and also to make sure they enjoyed their holiday without being too materialistic.  We want to make sure it’s not all about a gazillion presents under the tree.  MM already gets as much pleasure from giving gifts as she does getting them.  They both love doing holiday baking and delivering dishes of cookies to their friends.  There are other traditions we have that are always much more memorable than what they opened from under the tree. Hopefully, we’re doing a decent job of instilling the deeper significance of the holiday season.

After all, you can’t shop for memories.

A good friend (B. you are made of awesome!) linked me to a wonderful radio program produced by American Public Media entitled Being Autistic, Being Human.  The program runs about an hour, but there’s a two-hour version of the uncut interview available on the site as well.  In this segment, Krista Tippett interviews Paul Collins and Jennifer Elder(Different Like Me: My Book of Autism Heroes; Autistic Planet), both authors and parents to Morgan, an eight-year-old boy with autism.

Many elements of this show resonated with me and mirrored much of my experience not only with Gus, but with members of both sides of our family.  Paul talks here and in his book, Not Even Wrong: Adventures in Autism, about how many ‘traits’ often run through families of individuals with autism even if those family members don’t present with full blown autism.   I actually had a laugh this morning at an incident, fairly typical for me, at my daughter’s school.

I had gone to the school book fair and gotten completely engrossed with looking at all the shelves (books = crack for me) when I realized that everyone had stopped moving.  The Pledge of Allegiance was being said over the loudspeaker and I hadn’t even heard it.  By the time I stopped to place my hand over my heart, it was almost done.  Paul speaks about this kind of single-minded focus that is common among people with autism and their families, who are often found in, “solitary professions which require deep focus and abstraction.” He had mentioned that when he gets involved in his work it is like turning his ears off. I regularly see this level of intense focus and inability to switch gears in my family, and I’m sure my mom has loads of stories of how rude I can be when I get interrupted from something I’m engaged in.

I was struck by the couple’s candidness about when they first learned of Morgan’s diagnosis.  “His normal was normal to them,” and they really didn’t have any other frame of reference, something that I blogged about just a few days before hearing this show.

Another aspect of the show that touched me was Paul’s discussion of his decision to put Morgan on medication.  This has been a topic that’s come up again and again regarding Gus, and I’m sure it hasn’t been put to rest for good.  He wrote an article about what finally helped him resign himself to the choice: The Vanishing Boy.

While it doesn’t make the edited version, during the interview the question of controversies within the autism community was addressed.  Jennifer explained that she is not of a mind to want to find a “cure” for autism.  “Before we eliminate this, what are we going to lose?” And quoting Paul’s book,

“Autists are described by others — and by themselves — as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of what is missing. … But autism … is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.”

Without the particular abilities of autism, the world might not have had any Newtons or Einsteins, Andy Kaufmans or Andy Warhols.  Hopefully, with shows like Being Autistic, Being Human,  the conversation may start to change more toward how people with the challenges and abilities of autism can be better accepted and integrated into society instead of feared and excluded.

As I was all geared up to start ranting about Dennis Leary’s disgusting comments in his new book, Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid, my husband made a point that completely defused me, “Why is anyone surprised?  He’s a twit.  He’s always been a twit.”

Well…yeah.  Can’t argue with that logic.   The offensive material:

“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

Some links to a few of my favorite blogs discussing the matter:

Autismvox , A Life Less Ordinary , Memoirs of a Chaotic Mommy , and Marla Baltes.

In fairness, here is a link to E!Online in which Leary feebly attempts to defend his words.

You know, I had gained a little respect for Leary when I watched a few episodes of Rescue Me.  I thought that maybe he’d grown up.  Apparently not - he still goes for the cheap shot and the easy target.  I may not be surprised, but I am still offended that he would call so many moms “inattentive” who are really giving their all to help their children, and that he would refer to so many awesome kids as “stupid.lazy or both,” who have to work infinitely harder to get through a day than their typically developed peers.  I mean really, how much more attentive could we be?  If I was any more attentive to Gus, the poor kid would get a hernia from lugging me around like a backpack.

I think this moron got his C’s mixed up.  A comedian is someone who makes people laugh with things that are actually funny.  A coward is a loser who would take a cheap shot at someone, turn tail, and then hide.  Don’t hide behind your lame excuses and justifications, dude.  Just admit that you were wrong, recognize that you weren’t funny, and let’s all move on - without my, or probably any autistic child’s parent’s, money in your pocket.  I prefer not to deal with people who “suck” as you so clearly do.

image from ALA website

Every year during the last week of September, the American Library Association celebrates Banned Books Week.  We all have the right to choose what we read, and I certainly want my son to have that freedom as his reading skills develop.

Books are challenged - proposed for banning - for several reasons, but some of the most common have to do with content that could be construed as offensive.  I find this ridiculous.  The world is an imperfect place, and there are things in it that are less than pretty.  There is violence and sex (which is not in itself something I would consider problematic) and foul language interspersed among the more beautiful aspects of human existence.  While I may shield my children from some of these things, at some point, they should be exposed to them.  They should be able to ask questions and look at those things critically.

Gus is an avid reader.  Gus will probably have to deal with ugliness in his lifetime: discrimination, possibly bullying, heck, as much as I don’t want to think about it, sex will be an issue at some point.  Should I put him in a bubble so that when he is confronted with confusing situations he’s completely shocked by them?  Or should I let him experience them in a safer way when we can then deconstruct them together?

For kids on the spectrum, things like social stories have been regularly used to illustrate behavior in a wide range of social situations.  This shows that reading and processing that information can be helpful in helping them understand how the world works before being confronted by situations.  I think for many kids, on and off the autism spectrum, some of the books, classics of literature, that have been consistently challenged can offer great value.

The Junie B. Jones series is #74 on the list of the Top 100 Challenged Books of this Century .  I think we’ll break out Boo! And I Mean It and re-read it this week in celebration of the freedom to read.