Just a little odd

What good are stuffed animals?

Oh how I love my darling, sometimes socially clueless child.  Twice this weekend he made me laugh but had no idea why.

Friday night he came home after a week of being in Florida with his dad.  As he walked in the door, he didn't hug me, but went straight for the computer, saying "All I could think about all week was - man, I can't wait to get home and play computer."  And I just looked at him and said "Seriously?"  Then he looked at me for a second (no doubt thinking - WHAT?!), then he said "Oh.  And I missed you."  Thanks, man.

Then Saturday morning I was preparing some boxes to ship to Montana, as the region I'm from is being ravaged by wildfires.  It's heartbreaking how much damage has been done.  Anyway, Jake noticed some of his old but practically brand new stuffed animals going in the boxes along with clothes and shoes. He asked me what I was doing, and I said there were people where I'm from who lost their homes in fires, so I was sending them some stuff. He looked at me like I was crazy and said "You can't build houses out of stuffed animals."

Then I said "No, but I think kids who lost all their toys would like one to hold on to."

And then he muttered, "I'd send bricks."

What's for dinner?

A snapshot of parenting Jake:

Jake, let's do Sonic for dinner.  What do you want?
Nothing.  I'm not hungry.
But you like tater tots.  Do you want some tater tots?  And the chicken is good.
I liked popcorn chicken.  They don't have it any more.
Jake, the chicken strips taste just like the popcorn chicken did.
Yeah, but they're the wrong shape.
But it tastes the same!!!
I don't care.  It's the wrong shape.
Fine.  
*I proceed to order a chicken strips meal with tots for myself.*
*We arrive home.*
*Jake eyes my food.*
Hey, what are you gonna do with those tots?
Here, Jake, you may have them.

aaaaand /scene.

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(am labelling this in the "autism" category because his refusal to eat food that is the "wrong shape" is an example of rigid thinking that can accompany autism.)

Coping with death

So it's been a weird couple of weeks.

We found out on Nov. 8th that my older sister died.  We were two years apart, and she was just 33.

Jake met Mary once, when he was 3, so he doesn't remember her.  I think this is a bit of a blessing in disguise - were something to happen to my other sister, who Jake is best buddies with, he would be inconsolable.

The day we got the news, Jake spent the night at his dad's house so I could have some time to myself.  This was a Monday, and Jake typically spends the night at his dad's house only on Fridays.  The next day, my good friend Jen was watching Jake for the afternoon.  When I picked him up, I asked how it went. 

She told me that when she told Jake was she sorry that his aunt died, Jake shrugged and said "I didn't know her.  But Monday I wasn't with my mom and that made me sad.  I missed her."

I kind of laughed when she said that, and responded that it was a typical autistic response if I've ever heard one.  She said "But he said he missed you!  That's good, right"?" 

I told her that he didn't miss ME, he missed having a normal day.  He was upset that his schedule got disrupted - and do you know, he talked about that Monday being wrong for a full TWO WEEKS!!!  I'm pretty sure if it comes up in conversation, he would still tell me that's not the way Mondays are supposed to go.

. . . . . . . . . .

I set up a blog with links to our memorials and pictures about Mary; it can be found here: Mary Ellen Strange.

Great NPR piece - Lisa Daxer

Can I just say how AMAZING it is to hear a THIRTEEN MINUTE LONG story about autism on NPR?  I love NPR anyway, but that was awesome.

Autism Gives Woman An 'Alien View' of Social Brains

Speaking of awesome, Lisa Daxer - the subject of said story - is amazing.  What a great piece - the online text summary is ok, but listen to the piece for the full effect.

I found myself really relating to Lisa when I heard this story; much of her experience is similar to Jake's. When she talked about not having any friends, I shouted at my radio: "I'll be your friend!" I wish everyone knew this: when you are patient with anyone who isn't "typical" and give them a chance, they can really surprise you.

*****

I laughed out loud when Lisa said she describes her brain as "weird" - I'm not anywhere near autistic, but I would DEFINITELY describe my brain as weird as well.  All of you people out there who feel the same way - there is a place in this world for weird brains!  Sameness is boring!  Everyone sees the world just a little differently, and it's those differences that enable you to do great things. 

When I think about Jake, I see a boy who struggles in some areas, yes - but to me his abilities BECAUSE of how differently his brain works are what make him so interesting.  Math homework takes about 20 seconds because his brain just GETS math.  He sees patterns and internalizes details quickly, which allows him to be a whiz at electronic games - and this will transfer into all sorts of skills as he gets older.  Embrace your weird brains, folks.

*****

I got frustrated reading the comments to the story, because many people suggested that since Lisa is so high-functioning and well-spoken, she must not REALLY be autistic.

So let me say something that everyone needs to internalize:

Just because someone doesn't fit YOUR understanding of autistic, that doesn't mean they don't fall on the spectrum.

Do we need to talk about what the word SPECTRUM means?  Our friends at Wikipedia can help us here: "Spectrum is a condition that is not limited to a specific set of values but can vary infinitely within a continuum."  It's not "the autism box," it's "the autism spectrum."  IT VARIES, people.

Ok, rant over.  For now.  :)

Thank you, NPR, for the great story.  And thank you, Lisa, for sharing so much of yourself.

Serious over-reactions

Jake seems to have a hard time processing challenging situations.  It's typical for children on the autism spectrum to have problems with empathy - to not be able to see a situation through the eyes of another.  Some professionals call this "mind-blindness."  (See Wikipedia summary here.)

Jake apparently REALLY cannot understand what teachers or doctors are thinking as they interact with him.  I have two stories to illustrate this point.

Jake was in swim lessons for the third summer in a row last month.  He has been a little hesitant to learn some skills, but on the whole has enjoyed the lessons.  He came home one day, clearly upset, and said "My teacher tried to KILL me today."

Now friends, I want to be a parent who listens to her child and takes what he has to say seriously.  But I knew this could not be true.

I replied "I'm sure he was trying to teach you something, Jake."

He was persistent.  "NO!  He tried to KILL me!"

"Ok, buddy, tell me what happened."

What Jake then told me was that the teacher had him push off the edge in the deep end and swim toward him.  But the teacher wouldn't let Jake go back to grab the edge, he was trying to get him to swim a bit in deep water.

I told Jake "It sounds to me like he was trying to help you learn a skill."

Again I got a "NO!  He was trying to KILL me!"  I DID get Jake to admit that the teacher did the same thing with all the other students and none of them reacted the way he had, so that was progress.

Miraculously, Jake felt ok about going back to lessons and finishing the two weeks we had signed him up for.  He didn't pass level 2, thus will be in the beginner's class again next year, but I'm ok with that.  He's getting a *little* more confident in the water and I think if he fell in somewhere he'd be able to keep himself afloat, which has been my main goal for swim lessons.

Ok.  So.

Onward to this week.

I took Jake for his first eye appointment on Tuesday, just to make sure he doesn't need glasses yet.  He isn't showing any signs of eye strain, but his dad and I both have horrid vision - and both started having problems in 2nd grade - and I want to stay on top of it.

Jake was fidgety as usual as the exam began, and became more and more uncomfortable as it progressed.  At one point during the exam the doctor had been shining a light into Jake's eyes for what must have felt to Jake like forever.  He kept squirming and shutting his eyes, and we told him if he'd just cooperate, it would be over faster. 

When he had finally had enough, Jake reared back in his chair as far away from the doctor as he could get, and cried out "He's trying to destroy my eyes!"

We did finish the exam, and Jake doesn't need glasses right now - but literally the second the exam was over, Jake ran out into the hallway and curled up in a ball on the carpet while I talked to the eye doctor for a moment.

Nope, that wasn't embarrassing to me in the least bit.

Pillow Pet silliness

I don't let Jake watch T.V. with commercials (we watch DVDs or play Wii), but he watches T.V. at my mom's house.  She has been watching him this summer while I'm at work and he's out of school.  Something new on T.V. has caught his eye.  I have not seen the commercials, but apparently they are quite convincing in making children think they NEED a Pillow Pet.

Jake actually has been reciting/singing: "It's a pillow!  It's a pet!  It's a Pillow Pet!"

Jake and I were at Walgreens picking up a photo order last week, and suddenly he exclaims "PILLOW PETS!  THEY HAVE PILLOW PETS!"

I told him that under no circumstances was I buying him one.  One, we have pillows at our house.  Two, he has over 100 stuffed animals that we are in the process of paring down.

"But mom!" he protested.  "They're made of ultra-comfortable chenille fabric!"

Really, Jake?  Ultra-comfortable chenille fabric?  Like you even know what that is, dearest.

This is the perfect example of how Jake will hear something and then parrot it, regardless of understanding.  Also an example of how he does NOT understand advertising, no matter how much I explain it to him: some folks' entire jobs are to convince people they need to buy an object (at a 200%+ mark-up) that is absolutely not necessary and not one bit a need.  Nope, Jake just thinks everything he hears is truth.

Jake spent yesterday with his Nana, and sure enough he came home with a Pillow Pet.  "How much did you spend on that?" I asked my mom.  "Twenty bucks," she told me.  *sigh*

As we walked into the house together, Jake proceeded to tell me we could get online and go to Pillow Pets dot com and "view their entire selection."  HE ACTUALLY SAID THOSE EXACT WORDS.  

I'm glad school starts next week.

What causes autism?

I found myself just now following a link from my Google News "autism" category to the New York Times website.  The title of the article is "Autism: A Disease of the Rich?" 

I'm always interested in such articles, but I usually end up leaning more towards feeling amused at the people grasping at straws.  The phrase correlation does not imply causation always goes through my mind when reading something like this.  (Interestingly, that phrase has a Wikipedia page!  Who knew?)

Anyway.  I felt the need to comment on the article.  I decided to post my thoughts here, too -- what I wrote is a response to both the article, and to the six comments already posted.  (The comments brought up other popular theories regarding the causes of autism: parental age? parental education levels? vaccinations? a too clean environment?  strong parental left-brained tendencies?)  My main point, I have enlarged and colored, below.

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My son Jake has Asperger’s syndrome (on the autism spectrum), and our situation doesn’t fit with any of these theories. I was 24 when I had him, I only have a bachelor’s degree, and I am CERTAINLY not rich. (I’d describe my situation more as clinging desperately to the bottom rungs of the middle class.)

We do not have any “hyper-clean, ultra-strict and low-activity diets” happening at our house. I follow the good-enough theory for house-cleaning AND for parenting – the house is mostly picked up and nothing hazardous? Good enough. My child isn’t in physical harm? Good enough. A little dirt won’t hurt.

Jake did get all his vaccines on schedule, but he was showing signs of sensory sensitivity in the womb (for example, startling and jumping every time an automatic stapler went off nearby), and from the moment he was born he wouldn’t make eye contact, even while nursing. He never had a single reaction to a vaccine, and I don’t attribute any of his issues to them.

Nor do I (or Jake’s dad) have ANY math/engineering/science ability (seriously), although my dad does.

I agree that figuring out what causes autism would be helpful, but I think we also have to just accept that it is what it is. Sometimes there isn’t a reason.

Asperger's in the news

I read a news article today about a book I have noticed in bookstores -  The Best Kind of Different: Our Family's Journey with Asperger's Syndrome.  (Well done on the book title!  And I do have to say that I love whenever a new book comes out that will grab people's attention --more people understanding about Asperger's, autism, developmental disabilities, etc., can only be a good thing.)

Anyway, some of the things in the article caught my attention, and not necessarily in a good way.  I think that the book author - and article author, for that matter - was trying to make the point that it's confusing and frustrating as a parent when you don't know why your child is acting the way he does.  But the quotes kind of bothered me:

“I was stuck in a place of sadness,” said Schilling.

and

"... giving a poignant speech at a charity dinner, detailing the trials and tribulations of raising a child that they did not know had this disease..."

Doesn't that give the impression that parenting a child with Asperger's will leave you depressed and flailing?  I'll completely admit that it IS confusing and frustrating when you don't understand your child . . . but I think it needs to be said that there is JOY, and there is love, and there is every-day routine and familiarity, even with a not-so-normal child.  It's not like we're in a refugee camp trying to ensure our survival.  It's rough, yes, but all parenting is rough. 

Maybe I'm being defensive.  It wouldn't be the first time.  On one hand I do want people to understand that raising a non-neuro-typical child is an obstacle course.  But on the other . . . well here, story of a recent conversation I had:

I have a close friend - also named Jen - whose 11 year old daughter has Down Syndrome.  We often talk about disabilities and parenting, and she gives me great advice about Jake.  We were talking once about how really, our kids are pretty great - and she told me, "If you're going to have a child with special needs, Down Syndrome is the way to go.  She's verbal, she can do things on her own . . . you will never meet a more loving child.  It could really be a lot worse."

. . . and I feel the same way.  I was thinking about this the other day as we left Target to drive home.  I don't think about special needs or burdens when I'm with Jake.  I think about keeping up with him if he darts away from me, yes, but mostly I'm thinking about how funny he is, what he might tell me next, which game he'll ask me to play with him when we get home.  And typical mom stuff - when's the last time he had a bath?  is he hungry?  thirsty?  Because sometimes he forgets to tell me.  We talk about math and video games and how fast he can run.  He tells me something completely random, and I remind him to not chew on inappropriate things like the water bottle cap in his mouth.  When we're almost to our driveway, I ask him if he's going to check the mail for me.  He usually says yes.

He's my kid.  He's just who he is.  And we are happy.

Sarcasm doesn't compute

Last night Jake and I were leaving our friends' house and getting in the car to go home.  He had some cake left from his earlier visit to the family bakery, and as he grabbed the box he said he was going to eat it.  "Yeah," I replied, "because THAT'S not going to make a mess."

Not understanding, he asked me to repeat myself.  I did, and he said "What does that mean?"

I said "I was being sarcastic.  Sometimes people say the opposite of what they mean, to make a point."

"But why would you do that?" he asked.

Sighing, I said "Never mind.  Just don't get crumbs everywhere, ok?"

Celebrities and public awareness

I saw a news story today that Rosie O'Donnell has co-written a book about Auditory Processing Disorder and her son's experiences with it.  (It's actually a REALLY good article, and a great overview of how APD affects a child - go read it!)  Jake doesn't have APD, but he definitely has similar issues from time to time. I did wonder for a while whether Jake had Auditory Processing Disorder, but I think his issues are a matter of symptoms from ADHD and Asperger's overlapping.

Here's a link to the book by Rosie O'Donnell at Amazon: The Sound of Hope: Recognizing, Coping with, and Treating Your Child's Auditory Processing Disorder.  It actually looks like a really good book.

...

Sometimes the attention span of the American public frustrates me.  Even though most people in their everyday lives will come into contact with children with developmental disorders and learning disabilities, the public is sorely ignorant of how these issues affect children and manifest in their behavior.  (Not to mention what a strain it is on the parents of these children!)  But hey, suddenly a celebrity comes out with the information that THEIR child has a certain issue, and HEY! It's a news story!  Suddenly it's interesting and worth reading a book about!

The most annoying example of this - to me - is Jenny McCarthy and her books on her son's autism.  I read "Louder Than Words: A Mother's Journey in Healing Autism" and have seen several T.V. appearances related to her autism books.  I personally don't like the way she approaches autism - particularly her opinions about causes and treatments and how to "cure" it.  And she's so loud about it, insisting that her views are THE authority on autism and that people should listen to HER.  Even experts can't agree on causes or treatments, yet the fact that she used to prance around on MTV half naked somehow gives her the attentive ear of the American public.  Way to go, guys.

Ok, I'm being snarky, and that was not my intention when I started this post.  She is certainly entitled to her opinions . . . I just don't agree with a lot of them.  :)

The point I'm trying to make is that yes, it's good when attention is brought to developmental delays and learning disabilities for ANY reason . . . but I wish that it didn't take a celebrity experiencing it first-hand for the general public to sit up and take notice.