LIFE IS A SPECTRUM

I try not to politicize my blog. I want it to be a place where people from across the ideological spectrum – provided they communicate civilly – can feel welcome to discuss and share stories about living with autism. I will share my views with anyone who asks, and I will defend people’s right to share their opinion.

I've deviated from this rule a couple of times. I have strong opinions about health care. And I refuse to believe in the existence of Sharron Angle.

 

I will also remove you from my news stream on Facebook if you rant a lot or pick political fights online or call people “stupid” for having different political opinions than your own. I invite and encourage healthy, well-informed debate, but I don’t want to spend my day being angry or listening to angry. FYI, I won’t hang out with people who do that In Real Life either, but the fact is, people will say a lot of stuff online that they’d never say in person.

 

But this is why I remained blissfully unaware of Ann Coulter’s ignorance until recently. OK, not unaware, but I was able to avoid her until the last 24 hours when she tweeted the following message:

 

 

ann coulter tweet

Wow, I'm really glad this woman now has a channel with which to instantly communicate her wisdom with the masses.

 

I know that people are going to use that word. Ignorant people. People who don’t have extensive vocabularies. People who have had no reason to be integrated with people with special needs for whom that is a hurtful, hateful word. When I was a ridiculously naive teenager, I'm ashamed to say that I thought that word was hilarious. I grew up, and I stopped doing a lot of immature things.

 

I don’t know a lot about Ann Coulter, but she hasn't been a teenager for a while, right? I thought she was supposed to be some kind of communicator. Isn’t she paid to talk on TV somewhere?

 

Was that tweet supposed to make people laugh? Why? Because she was comparing the President of the United States to a person with cognitive disabilities? Would we laugh if she used a word like “cripple” or a hateful racist word that I can’t bring myself to type?

 

@AnnCoulter, this is a picture of my beautiful son with autism, the one I plan to make sure is never exposed to people like you so he doesn’t hear that kind of language:

002

Future voter

 

 

Thankfully, Billy is too young to use Twitter – and too smart and loving and open-minded to ever follow Ann Coulter.

 

Reader Comments

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If anyone had told me this moment would be possible even a year ago, I wouldn't have believed it. But autism or no autism, we have no idea what is possible ... Life is a spectrum, yes, but it is so much more. It has dimensions we can't see and takes us on a journey that has as many ups and downs as it has steps forward. Ask a parent to describe a moment so joyful that she can't swallow the tears fast enough, and we realize how inadequate words are to describe life. Luckily, we have more than words. We have iPhones. And we have music ...

Luge_at_the_2010_Winter_Olympics-image-6

INT. BILLY'S BEDROOM – NIGHT.

I open the door to find Billy lying on the floor, arms at his sides, legs together, toes pointed. There is an intense look of concentration on his face.

ME: Billy, what are you doing?

BILLY: (without hesitation) I'm playing luge.

A beat.

ME: You mean the sled thing that goes down the ice chute?

Another beat.

BILLY: Mama, will you play luge with me?

CUT TO

A few moments later …

Both of us are now lying on the floor, side-by-side, with our toes pointed.

BILLY: Mama! Are you winning?!

 

Yes. Yes, I am.

Reader Comments

Its so cool to hear he is imagining!! I miss him and willow!

Snippets 'N Stuff

I can honestly say I have never heard of anyone pretending to luge. :)

We were just playing sled using a couch cushion down onto an air mattress! Luge would have been so much cooler.

That's Awesome!

What great imaginative play! You must a proud Mom!

I love watching the lugers, even though I think they're crazy to want to do it!

Wendy

That is awesome! I never woulda thought luge, but now that I'm seeing it's really just like a huge marble run with people instead of marbles...I bet some YouTube videos of that could make Caleb's day! Thanks for the idea! =)

Love love love it! Are there reruns of the winter Olympics playing on some obscure channel or what? I love that he even knows what the luge is. Great creative play...by both of you! :)

Total 7 comments

Billy has become really interested in feelings lately. "Mama, how do you FEEL?" is a frequent question.

feelingschart

And he squints his big blue eyes and seems to really concentrate as I give my answer.

He seems dubious of simple emotions lately: happy, sad, silly and tired no longer cut it.

So I've tried to introduce slightly more complex emotions like frustrated, peaceful, confused, etc.

Which brings us to ...

INT. BILLY'S ROOM - NIGHT

It's bedtime. We've just tucked in, had a final story and he has said his prayers.

BILLY: Mama, what are you feeling please?

ME: (thinking about it) I feel peaceful. That's a quiet kind of happy that's good for bedtime.

He squints his eyes as though he doesn't believe me.

ME: And hungry. I have to go have my dinner now. How do YOU feel?

He considers this for a moment, staring thoughtfully at the ceiling. Then his eyes return to mine.

BILLY: I'm concerned.

ME: Concerned? That's a big word. Do you have a problem?

BILLY: Yes.

ME: Tell me about it. What are you concerned about?

BILLY: (emphatically) Mascara.

A beat.

ME: Mascara? Why are you concerned about mascara? Do you not know what it is? Do you not understand what it's for?

Another beat. He considers.

BILLY: Yes.

ME: Well. Mascara. It goes on ladies' eyelashes to make them ... um, darker and longer ... it's kind of like ... paint?

Billy's look has evolved from concerned to what I would call "alarmed."

ME: It's dress-up. Let's just leave it at that. No cause for concern, OK? Absolutely nothing to worry about with mascara.

Then I kiss him on the head and turn out the light.

BILLY: (in the dark) Mama? Are you peaceful?

ME: Yes I am.

berenstainbears_doctor

Both my kids have stomach flu again ... which reminded me of the last time this perfect storm of illness hit our family. Because everything in this post pretty much still applies, because my kids have probably passed this on to any number of other unwary children in their classes, and because I'm just this lazy, I'm going to repost my thoughts on ...

Sickness and Autism

Originally posted: 02/19/2010 10:55 am

I'm starting to think our family is being targeted by some insidious form of biological warfare. Their weapon of choice: stomach flu. Brilliant when you think about it: no one suspects foul play and you slowly sap your targets of their will to dress themselves.

I'm not sure what the goal is of this particular terrorist cell, considering we have most of our assets tied up in our extensive collection of Thomas the Train engines. [update: We have diversified into solar system toys and iPad apps.] And we don't have time for any political activism. Heck, we don't even have time for physical activism.

But we're sick again. And when Billy is sick, it's like living with a dozen sick children. Everything is so much worse, so much more terrifying for him. For a child sensitive to the slightest changes in his sensory input -- vestibular (balance/gravity) and olfactory (smells) being some of our particular bugbears -- having a stuffed up head and upset stomach is his idea of living hell.

Actually, I should say that it's one step removed from his living hell: True Hades would be sickness and a visit to the doctor. He has an absolute terror of the pediatrician's office, or any office that looks like it might be harboring a pediatrician somewhere. He had a complete meltdown the first time we visited daycare, because they had a window at the front much like the doctor's office.

We don't go to the doctor unless absolutely necessary. He does get vaccinated -- we have that to look forward to again on his fourth birthday. [Note: we survived that visit amazingly well in the end.] And he's had stitches and antibiotics at various times in his life. But finding a doctor with the patience and bedside manner to deal with what some people see as histrionics is rare. Our hometown doctor, Dr. Greg Sloan, was always amazingly patient with Billy, even though pediatrics and certainly autism were not his specialties.

We've adopted a certain routine when it comes to the doctor, which doesn't eliminate the problem, but does seem to minimize it to a degree:

1. We make sure the doctor's office is well informed about Billy's autism and how autism manifests itself in Billy. Every autistic child is different, so they should know ahead of time that he's strong, likely to be very scared, and may scream. We also warn them not to touch his head unless absolutely necessary.

2. We start talking to Billy about visiting the "Nice doctor" early in the day. We get out his toy medical kit, give his bear "Tah-Tah" a quick check-up, read a few books about visiting the doctor, and let him give us a checkup, checking our heart with the stethoscope, checking our temperature, etc. Then we let him take his doctor kit to the pediatrician.

3. Whenever possible, get the last available appointment of the day. If he does get upset, then we don't have to worry about upsetting quite so many children in the lobby. Also, it means that it we have to wait, the lobby isn't crowded with other new people, which can upset him when he's sick.

4. Weather permitting, one of us strolls him around outside, while the other waits indoors to hear his name called.

5. We insist on the thermometer that can be gently run across his forehead. He still doesn't like it, but it beats the pants off the one they have to stick in his ear.

6. If the doctor is wearing a white coat, ask them to please remove it before coming in the room. And we give them the warning about touching his head again.

7. Whenever possible, we touch Billy for the doctor, such as holding the stethoscope against his chest, using the thermometer, etc. We obviously can't vaccinate him, but the less he gets touched by a stranger, the better.

8. Hold on tight and keep telling him we love him.

With any luck, we won't have to go to the doctor with this round of flu. But I've been reading "The Berenstain Bears Visit the Doctor" just to be on the safe side.

Reader Comments

I hope everyone is feeling well soon!

I hope the kids are feeling better soon, and that no visit to the doctor is necessary...

Hugs,
Wendy

Awwww...Hope everyone is feeling better soon. Sending virtual popsicles for the kids and vodka for mommy. =)

Total 3 comments

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