We recently had an IEP meeting. Who doesn’t love those? They make my pits a little juicy even though we are in the fortunate category of not having to fight for any services. Ellie went into Kindergarten with only push in services – so, fully integrated.

It’s hard to believe that this is the same kid who, at the age of two, was fascinated with our local St. Louis map. Like for two hours at a time fascinated. She’s also the kid who refused to go to a park if other children were present, didn’t make eye contact, and showed little emotion other than screaming for three years. She would scream in the doorway of her bedroom for sixty solid minutes (sometimes a few times a day) because I would leave the room before her. Or not unbuckle her baby seat the same way. And, she was a bit of a poltergeist (see the parade of objects 1, 2, 3, 4, 5, 6, 7), and well, you get the idea.

This is also the girl whose first word was at nine months. And, it was “pretty”. She had a vocabulary of 250 words by twelve months. 500 words by eighteen months. She could recognize/demonstrate the ASL alphabet, knew all her colors, differentiated her lower and uppercase letters by twelve months. She knew more about bugs by the age of three than I ever care to know.

This is also the same girl who didn’t pass her language assessment last week. I’ve seen first hand how Ellie reacts when not understanding directions or conversations . She wants to understand. She knows she’s supposed to understand, and since she doesn’t, she compensates with the verbal virtuosity of a Michael Jordan. “I’m not sure…Well, let me think…It could be that one…It’s not?…Oh, I see what you mean…That makes sense.” It’s really quite impressive and high-five worthy.

Luckily, her team at school SO gets her. It’s easy for people who don’t spend a lot of time with Ellie to be dazzled by the cuteness and smoke screens. She will be having a more in-depth language evaluation which will then be compared to her I.Q. score to see if she qualifies for language services. It’s another point, in my opinion, to the importance of early intervention. Ellie has made strides that never fail to impress me and it gives me a lot of encouragement to see her with a team of professionals who all understand Aspergers. They are dreamy. I love them and I want to marry them.

I’ve recently discovered a remarkable young lady named Carly. She was diagnosed with severe autism at the age of two. She is nonverbal but has a powerful voice. Along with amazingly loving, dedicated parents and therapists, Carly is currently in an 11th grade gifted class and is an advocate and author for those with Autism.

Carly’s Autism is different than Ellie’s. However, an excerpt from Carly’s book helped shed some light for me on something they do have in common. Eye contact. Or, more appropriately, a lack thereof. Carly described how her mind is like a camera with a photographic memory. When she looks at someone’s face, her camera is taking so many digital pictures that it is nearly impossible for her to process information being spoken while this is happening.

I try to encourage Ellie to look at a person when speaking or being spoken to, but I don’t force it. Carly’s words serve as an important reminder for me, as Ellie’s mama, to respect this about her. It’s something I’ve struggled with continually because to look at someone in the eye means you’re listening, that you care, that you’re connecting. Hearing what it’s truly like for someone with Autism is such a gift for us parents. We want to do the right things for our kids and having people like Carly help us is an amazing gift.

Carly was recently on The Doctors. Click HERE to see a snippet from that interview. snippet from that interview. Also, here is her facebook page. She’s remarkable.

My posting and reading of other posts as of late, has been lame, to say the least. What I love is that my fellow Autism Mommas and Papas are always around (let’s face it…when thrown into the land of Autism, it ain’t like we’re jumpin’ ship for Belize). They make me laugh, help me relate, allow me my crazy moments, and offer so much support. Thanks to all of you.

Big Daddy Autism
Four Sea Stars
The Connor Chronicles
A Chameleon’s Blog
That’s Right I Said it Dot Mom(where the hell are you Grace?)
Solodialogue
Bubble Gum On My Shoe
Autism Army Mom (how’s work?)

Some days I just can’t laugh about Asperger’s and the quirks that come with it. Some days, it sucks the life out of everything. I’m a fun Mom. I like getting dirty, doing crafts, singing songs, etc. Not just like it. LOVE IT! Many days though, I have to gear up for it with Ellie. A simple and fun activity is more than meets the eye.

After I show her what we’re going to do, she wants to take over and have me conform. There are times when I comply. It makes her happy to make the rules. Then there are times, like today, when making marbleized paintings in plastic bags, we follow the directions. And have fun goddammit! So, what ends up happening, is she becomes frustrated that she can’t control the activity at all times. And doesn’t have fun. Then I become frustrated that I spent all this time coming up with something fun to do only to have yet one more thing end up in the shitter. It’s really emotionally draining.

Ellie: Mom. You said we could hunt for snails after school today.
Me: Okay. We can.
Ellie: Remember, you told me that if I catch any, I can keep them in my bug catcher for two days.
Me: I don’t remember telling you that, sweetie. We don’t want to keep them in there for too long cause eeeeewwww snails in my house because they need air, food, and water.
Ellie: But you TOLD me I could keep them for TWO days!!
Me: Maybe you misunderstood me.
Ellie: What does misunderstood mean?
Me: It means that Mommy probably wasn’t listening to your twelfth straight hour of dialogue regarding bugs and would have agreed to anything for two seconds of silence when people don’t quite understand one another.
Ellie: Mom, are you sorry you misunderstood me?
Me: So very much, honey. You have no idea.

Thank you, Strangers, who point out, in one way or another, that my daughter doesn’t make eye contact. Or look at you. Or smile. Or give you the time of day. I hate you. Each of your well-meaning comments meet me at the core of my pain like a knife in an electric socket. Pardon me for being tired of my tired consolation smiles, pitiful small words, and verbal excuses. I truly can’t take it ANYFUCKINGMORE.

On the other hand, thank you, Strangers. Those of you who say kind things to my daughter regardless of her reaction. Thank you for your genuine loving nature and patience. I love your soft voices. I can’t remember what you said, but you got down on your knees, kept your distance, weren’t in a rush, and said something wonderfully beautiful. It means more than you could possibly know to a Mama like me.

Many on the Autism spectrum have difficulty with theory of mind. Presuming that others have unique ideas, thoughts, and feelings different from their own. Ellie definitely has challenges with it. Last night, however, was the CUTEST example of this. EVER.

Ellie was on my lap, head back, under my chin. I was lightly moving my fingertips up and down her arm. When I stopped, she reached over, picked up my hand, put it back on her arm, and moved it up and down, indicating she was not finished with this luxurious moment. I started to giggle and so did she. I told her I used to do the very same thing to my Mom when she stopped tickling my skin. Ellie said, “YOU DID?!?! Boy, you and your Mom were really good guessers.” To her, the only reason my own Mom and I would have ever done that is because we knew Ellie would do the same thing. Funny. In that moment, I couldn’t think of a better explanation. So, we’re going with it.

P.S. I miss you Mom. You would have delighted in your granddaughter.

We may have a replacement perseveration. Is perseveration a word? I can’t be bothered with googling. You know how exhausting that can be. Opening a new window tab, typing, scrolling, blah and blah blah.

Back to perseveration. If it takes the place of the ever-exalted tank tops that preceded (I can’t even be bothered to relink to the thirty seven tank top posts as a reference. Take my word for it. I thought it would never end.), I would be willing to walk on my hands. For the rest of my days. Ellie has taken to showering. All by herself. It’s awesome. She takes two, sometimes three showers a day. AND, she tells everyone else about it. So, it’s a double-bonus whammy, if you will. The cashier at Target gets to listen to the 7-part lecture series on showering while I can kinda zone out, PLUS Ellie’s initiating conversations! I could care less if she scripts or lectures, she initiates conversations. With other people. Often times with some eye contact. I refuse to look further down the path to see when this might become problematic. At the moment, she smells like strawberries and I don’t have to answer questions about tank tops. SCHAWING.

I was at TJ Maxx today and while waiting to make my purchase, I noticed that they are asking for donations to Autism Speaks. It made me glad to see their support. A sign was posted at each register that if a cashier fails to ask you to donate, you receive a balloon. Given the $1500 our team raised in October, and the fact that Autism Speaks in our house daily, I was prepared to tell the cashier “no”. She, however, didn’t ask me. So I said, “I’d like a balloon, please.” She looked at me, blinked a few times, flipped her hair, and snapped her gum. I repeated that I’d like a balloon since I wasn’t asked to donate.

My cashier turned to her neighbor with another combination hair flip/gum snap, and said, “Yeah, so what’s the deal with the balloons?” Once informed, my cashier asked me if I wanted to donate. I politely told her, “No thanks. I just want my balloon. My daughter with Autism will enjoy it immensely and the next 100 customers you have to ask for a donation, will certainly thank me for their impending inconvenience.”

Oh goodness. My friend, Lizbeth guided me to Adventures in Extreme Parenthood, where its owner, Sunday, started “Special Needs Ryan Gosling Fridays”. She made my day and is accepting submissions to create your own. Here’s my Ryan.