My Autism Insights

Recently, Mia from General Hysteria guest posted for us, and now we would like to reciprocate.  I will be posting at her site later in the week about how Asperger’s and neurotypical siblings benefit and hinder each other.  Some points I will touch on include:

• increased compassion for the NT sibling
• increase in socially inappropriate behavior for the NT sibling
• social skills practice partner for the Asperger’s sibling
• sense of abandonment in the Asperger’s sibling when the NT sibling develops outside relationships

My comments will be based on my own experience of living with this dynamic for the past six years.  Please stop by and check out the post!

Mia Hysteria shares her inspirational, humorous and sometimes heart wrenching journey of raising 3 young children, one with special needs, while managing a life of chaos, in her blog: General Hysteria .  Mia has been blogging on General Hysteria since September 5, 2008 about her son, Ben (1), her daughter, Violet (2) and her oldest son, Alex (6).  Alex has cerebral palsy, autism, sensory processing disorder, developmental delays, epilepsy, and ADHD.  Mia is a mother, wife, blogger, and practicing writer.  Candid about her current and pre-insanity-brought-about-by-children life experiences, Mia’s writings will leave you shocked, laughing, and reminiscing. On a laptop, in a cul-de-sac, somewhere in Colorado, she is single-handedly attempting to share her stories, thoughts, frustrations and elations so that no person feels isolated, forgotten or unworthy of their own journey.

He is my first born.  I can still recall doing as many things as possible with him.  I would cut open yard size garbage bags, carefully taping them to the floor before inviting him to sling paint all around.  He wasn’t as interested.  Or placing him with me in the kitchen while I pureed his food rather than buying jar food, talking to him all the while – giving him words to all the crazy things his mom was doing, thinking that would all make me a better mom and him the best raised little man in the world.  I’m far from those ideas these days.

Though I gave up the pureeing of food, I have not wanted to stop the art projects, but those have been hard for us.  The projects that make you feel as though you’re showing your delicately developing child all that the world has to offer; giving your child things to feel, experiment with, explore.  For various reasons, they’ve never worked out for us.  An unfortunate admission from me is years after his diagnosis, and too many times of these best of intentioned projects ending in turmoil or not beginning at all, I threw up my hands and stepped away from showing him this world.  I was wrong.

Today, I am back to wanting to show my Angel more of his world through art projects.  Much of this has come from a better understanding of how his mind works, what his limits are, what he is capable of and what he likes.  Alex has cerebral palsy, autistic features, developmental delays, and more; fun activities can take some planning.  Alex doesn’t have a huge attention span, he can paint with assistance, and patience is a consideration.  This, along with a little sister who interjects herself wherever she deems she’s needed, is perfect:

You’ve all seen these, right?  If you haven’t, go check the dollar bin areas at your local Michael’s Craft Store.  This is Alex’s favorite project. The first hurdle we had to get over, which took just a few minutes…the plane is not in one piece.  We had to work through this one time and now he is versed on what to expect.   The fun begins.The way we work it is to take the pieces out of the bag and then choose our paints.  I encourage him to pick more than one shade of blue (his favorite) and if he’s feeling real good about the project, more colors will be chosen.  We distribute the pieces to the appropriate people (remember his sister is ‘helping’).  Alex always gets the wings.  We paint.

Why this works so great for him is that by the time we need to think about letting it dry so we can paint the reverse side, his attention has been caught by something else…or dinner is ready, or my one year old is pulling at my leg…we can leave the project for later.

Usually, we paint again the next day to its finish.  I glue it at night while he sleeps and in the morning, he’s greeted with a new present, yet another airplane, that he has pride in knowing he made (with his sister’s help).  It’s special for him.  It’s what he loves.  It’s blue.  I showed him another piece of this world.  And he molded this world to fit into his.

What about you?  Are you able to do project activities?  Are there projects that work for you?

Do audio books help individuals with auditory processing disorders to strengthen their listening and processing skills?  It would seem that they do.  According to Christie Berry, Ed. D., in her essay “Reading with your Ears ,” “Listening to unabridged audio books while following along in the book improves language skills, auditory processing, and contributes to an increase in overall cognitive abilities.” This was heartening to find as it validated 2 things I’ve been thinking about.  First, I’m noticing that Gus has a greater ability to focus on something auditory when he’s being read a story and following along (as opposed to listening if I’m asking him or giving an instruction).  So I started wondering if audio books might start to increase the length of time that he can sustain listening. This question was brought about by a second observation I recently made,  this one about myself.

I have terrible listening skills - always have.  Unless I’m very interested in what someone is saying, I zone out pretty quickly.  You can see how that might have been a problem in school since I often didn’t pay attention to what my teachers were saying (except the especially interesting one).  Fortunately, I’m a much more visual learner and a combination of reading and writing things down allowed me to excel, at least through high school.  College was a different story.  I had one teacher, my accounting professor, who droned on so badly that I could not stay awake in his class no matter how many coffees I had beforehand.  Only class I ever flunked.  When I became a teacher years later, there was always a running joke between my co-teacher and myself because neither of us was ever able to listen in the professional development meetings. We’d always say, “we don’t do extended listening.”

Then a few years ago, something incredible and completely unexpected happened.  Harry Potter on CD.  I was already a crazy obsessed fan, so I figured I could listen to them while driving and even if I missed a bunch of stuff, I knew them almost verbatim anyway.  What a surprise to learn that Jim Dale is a wonderful narrator and that I actually did have the capacity to listen to something for a long stretch - if it was interesting.

I’ve since become very fond of audio books and listen to segments of books almost every day.  Even the books I find less engaging to read (Jane Austen) hold my interest with the help of a good reader.  I’m fairly certain I’ve increased my capacity to pay attention to auditory information.  I’m thinking of trying some audio books for Gus (not Harry Potter - my kids don’t share my enthusiasm).  Perhaps they might help him to be able to focus in the classroom a little better over time.

For additional information on how audio books can help with auditory processing disorders, check out “Improving Auditory Processing - Listening to Language” by Sharon Hensley.

Have you had any success with using audio books to develop auditory processing skills?

Tomorrow: guest post from the author of General Hysteria on art projects for special needs children.  Don’t miss it!

Prompt by Mo of Manic Monday

Does allowing an individual with obsessive tendencies to enjoy the object of obsession to a limited degree add fuel to the fire of said obsession? This is what I ask myself all the time.  Let’s use Pokemon as a fairly harmless example.

Gus loves Pokemon.  He’s got encyclopedias of Pokemon memorized and can tell you anything about any of the creatures. Sometimes when he lacks focus in school, the use of Pokemon as a teaching tool has proven effective (add these numbers and find the number of Pokemon in this region).  But there’s always a downside.  Even the most contained fire, if given the right opening, can consume a forest.  He will play his Pokemon video game to the exclusion of many other things, including outdoor activity when the weather permits.

Now, am I really all that concerned about Gus and Pokemon? Not now.  But what if it goes on for the next, oh, 20 years or so?  Is there a point where someone should step in and say, “this is no longer appropriate, so stop now.” And if there is such a point, it would be great if I could get one of those postcards like you get from the dentist when it’s time for a cleaning.

Left field is looking a little too attractive today, so I’ll end here.  Have a great Monday!

And for more on obsessive tendencies, check out Bonnie’s post at Autism Family Adventures .

And later this week, I’ll have a guest post from my buddy at General Hysteria .  Stop by ad check out what she has to say!

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!

  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!

Prompt by Mo over at Manic Monday !  Thanks, Mo!

The Mystery of the Ghost

as told to me by Gus

In a haunted mansion in Transylvania, on a Thursday, in March, there was a weird sound.  It was a ghost.

“What an emergency!” one of the people shouted.

First, it threw a rock.  The rock was almost thrown into deep space.  It wasn’t like it was elementary or something, but the ghost said, “WOOOOOOO!”

“One North America…two North America…” said a voice.

“What was that?” said another voice.

Then another voice went, “Ya ya ya!  Ya ya ya!”  That was just a bunch of people in daycare.  The ghost got confused and went back into the grave until all that, “Ya ya ya! Ya ya ya!” stopped.

The End

P.S. Have you seen Transylvania?

My son, budding mystery/suspense author…or comedian.  I swear, I did not change a single word.  I’m struck by the fact that the ghost didn’t like noise, and also very amused by the opening line.  If only I could remember to have that level of specificity in my own fiction…

Anyway, try having your kids make up some ghost stories & let us know how it works out!  Happy Monday, y’all!

A few days ago, I posted about the Seymour family in Canada who was asked to leave a family style restaurant when their autistic daughter succumbed to a meltdown.  I put a link to the post in my private journal, and my good friend left a comment that moved me so much, I felt it should be seen by a larger audience.  So here are the words of Spindlewand:

“There are places where I can understand patrons expecting a level of silence and others where I would not. A family restaurant is no place to expect silence.

DH and I, when we had the chance, would frequently go to Applebee’s on a Friday night. We were usually the oldest people there, unless a grandparent showed up after a dance recital or something, and while I was occassionally annoyed by loud patrons, they were clearly the kind of loud patrons who are just - loud. No particular “reason” for it other than inconsideration. Even so, we never complained. Some people are going to speak loudly. The local Soccer/Track/Wrestling team is not going to be subdued unless for some bizarre reason they are out celebrating a loss. It goes with the territory. Any restaurant airing sports events on a TV patrons can see is going to be a noisy place.

One of the most impressive things I have ever seen happened at a wedding rehearsal dinner. It was an informal affair, with a lot of people who did not really know each other very well, and the bride’s aunt went into an epileptic seizure. One of the Groom’s friends looked up, said something like “Do you need us to do anything?” and when she was told no, everyone went back to their previous conversation and ignored it - not because they were insensitive, but because they felt that the person involved would prefer not to be the center of attention, and they were perfectly correct. It was a perfect handling of a difficult situation.

I don’t think most people really know that much about Autism. Eveything I really know about it I’ve learned from you. People in general may not realize that what they are witnessing is to a larger or smaller degree involuntary. However, once they are aware of that, they should understand that involuntary means you can’t help it and either politely ignore it or politely and quietly ask if any help is needed.

One would hope that the days of hiding the disabled away behind closed doors is long behind us, although so many things we wish were long behind us aren’t quite yet. Some people who are not disabled assume that they will always be young, healthy, in control of their lives and actions, etc. But you know what? I have been in at least four car accidents that you would have thought might have left me physically disabled. I have been blessed by God to walk away from all of them, one way or another. That can happen to anyone at any time. Maybe Autism can’t, but a number of other things that affect mind/body connection can.

I suppose it comes down, like everything else, to two simple things - your view of what people are and therefore what they are entitled to, and how close to that ideal you manage to keep yourself. I suppose these people feel that the “unhindered” are more deserving of the opportunity to eat outside the house than those who are in some way “impaired.” If not, they are not just inconsiderate, they are also hypocrites.

Yes, there are places I don’t take my own kids, who are each totally capable of wrecking a high Mass in their own way. We did not go to the tea shop I’ve been dieing to go to for Mother’s day because one look at the interior on the website alerted DH to the number of things the baby would be in danger of breaking, never mind whatever general mayhem he might set in motion. I can’t afford to eat in the kind of restaurant BH’s occasional loudness might really disturb, but if I could I might ask for a very early sitting, or a very late lunch - timing it when the fewest people would be around to be disturbed, if I thought it was a good idea at all. That said, those places are few. He goes everywhere with me and if anyone doesn’t like it the only reason I would not ask them to kiss my *ss is that they would not be good enough to.”

I read another comment on a similar issue that suggested parents of autistic children were too personally involved to see how these companies (airlines, restaurants) could be justified in their decisionmaking.  Well, Spindlewand doesn’t have an autistic child, and she seems to have a very clear understanding of the heart of the matter.