Zoo trip; Mother's Day

School field trip to the zoo last Friday. Apparently she thought the zoo would have robots...??? So disappointed no robots. And wasn't too happy to find the zoo full of people either. Other kids were always in her bubble. Always crowding up behind her to look at the exhibits. So she'd turn and flail and punch her way out of the crowd. Picture all the gasps and dirty looks I got. I lost track of how many times I said, "sorry."

If we could have our own private zoo full of robot animals, we'd be set.

Oh, and Mother's Day. She brought home a card from school. The usual hand print and such. It says, "I love my mom because..."

"Yes"

There are only two ways she can answer a question, so 50/50 chance that one came out in my favor.

Tale of Two Freak Outs

Freak Out #1 -

In the car. Put her in the carseat. Shut the door. Walk around the car to driver's side door. Swear I'm hearing screaming. I look around. Whose kid is that screaming? Can't be mine. She was perfectly fine a second ago. Oh. It's my kid screaming. I get in the car, turn to regard my screeching, red-faced, tear-streaming, hysterical kid.

"What seems to be the problem?"

She gestures wildly to her seatbelt restraints--to upset to speak.

Oh, I see that I had forgotten to latch the bottom part. Oops. 

But let's not just calmly let me know--let's....

Freak out!

Freak Out #2 - 

In the bathtub. We're both perfectly happy. Then suddenly--screaming. Hysteria. Like she's in terrible pain. She holds her stomach. I panic. Almost drop my cell phone into the tub while considering calling 9-1-1.

"Where does it hurt? Tell me where it hurts!"

She points to her stomach.

"There! There's a hole in me!"

She's looking at her belly button.

???????

"Well, that's your belly button. Everybody has one."

She has definitely been aware of her belly button since babyhood. But I guess she forgot. So, when in doubt--let's...

Freak Out!

Nothing wrong with different, as long as it doesn't hurt

It's sad how so many parents are completely ignorant about autism--that it's not just quirky traits and what's wrong with my kid being different??? Being different is fine. GREAT! But feeling pain and discomfort is not great. And those "quirky" things your kid does is very likely your child's body trying to combat discomfort or even serious pain. Like the message board post I saw by a mother who, at the time of the post, was not allowing her child to wear a pressure vest, recommended by the OT, because her son walks on his toes. She doesn't see anything wrong with him walking on his toes because he's only in preschool..... !!! WELL, often times preschoolers, and especially autistic ones, are not mature enough with communication to tell us when they are really hurting or uncomfortable--and maybe that's why he walks on his toes! A pressure vest is supposed to feel GOOD to the wearer. It is not a punishment. If it the child doesn't like it, the OT knows it's not the needed therapy and will not continue use of it. A vest is not like a straight jacket. I have seen first hand many kids at my daughter's school wearing their vests. The vest brings a smile to the boy who is otherwise grimacing and shrieking and flailing. It also made another little boy talk and play with friends after months of speech regression. Vests are a good thing if they work! If they don't work, don't wear them. Goooooodddd grief! Seriously. It's outrageous!

Also outrageous is the little boy at our mainstream preschool who has many autistic characteristics but his mom froze in horror when--after she was telling me how he likes to pretend to be other classmates, assumes their names at home, and can perfectly mimic their voices and gestures--I asked if he also repeats things she says, or wants her to repeat what he says. Along with the horrified look she exclaimed, "Oh no! Nothing like THAT! I just think it's because he's going to be an ACTOR." .......

Oh....really....? Okay. Because my kid does all that stuff too, but I don't necessarily think it's because she's going to be an actor (though she might be, who knows). But for now, it's because she's autistic.

Reverse echolalia: a strange parrot

Today's nickname is "Blue Penguin Agent Secret"

It would be a very strange parrot if it wanted YOU to repeat everything IT said. That's what we've always had going on here, different than the usual parroting--if you can even call that usual. I swear, we are even atypical about atypical stuff. *Agent Secret* likes to repeat what people say, but much prefers if everyone repeats what SHE says. And lord help you if you don't.

Side note: my theory about echolalia--either standard or reverse--as being an autistic form of making eye contact is even more plausible now that I've seen it in our 3 yr old blind friend at school. Our blind friend is not autistic, yet she relies on echolalia to participate in a world that she can't see. She loves to repeat any word or phrase-- or encyclopedia page, practically-- with perfect pronunciation, but also has her repertoire of scripted stuff she says as a way to get the attention of whoever is nearby. For instance, she likes to count, and will say, "9, 10" to see if anyone is listening and if anyone will say it back to her. When someone repeats it back she is so happy and will continue the reverse echolalia, probably forever until someone puts an end to it. I believe it is like eye contact to her. And, I have just read on Wikipedia that blind children are also known to use echolalia, and Wikipedia knows everything, so therefore, my theory is sound.

Anyway, so, I'm always the one that is expected to do the repeating around here. But at 5am (that's the time dog and child force me to stumble around tending to their needs/demands), I just don't feel like repeating random crap. I just don't. I'm struggling to make my coffee and at the same time get the right food to the right critters, i.e., the dog food to the dog and not the child. Not until after one full cup of coffee can I utter a sound other than, "Hmmmm" or "Mmmmhhmmm" or "Hmmmm?" This went off like usual today, and at some point, after *Agent Secret* had said, "It's a chicken" or something like that, about one hundred times, I finally said it back--on autopilot because I didn't even know I'd said anything, and was startled by applause and congratulations, "GOOD JOB, MOMMY! Good job! Good TALKING!"

Hmmmmmmm....

And her name is...

Yesterday, she was coloring at the table and I could hear her saying letters: "m.....i......a....." and looked to see what she was doing, and sure enough, she was writing her name. Didn't know she could do that!

Curious how all her nicknames are spelled "M. I. A." Zula. Lady in Pink. Pickle. And the dreaded STEVE! All of these names and others are spelled "M. I. A." Her poor teachers have all found this out the hard way when they have tried to humor her and write such names as "Zula" on her papers. She screams and fits until they spell it right: "M. I. A." Well, obviously. I mean, what is wrong with these people! (poor teachers....)

Snapshot: Communication disorder

Here is a snapshot, a look into our world and the "conversations" that we have, and why our "conversations" rarely go well.

After school, walking to the car. She asked for water.

I said: "Sorry. I don't have any in the car today. We'll have to get some at home."

She said: "No! No home! I don't have a HOME! I have a HOUSE!"

She pointed across the street, to houses.

She said: "Those are houses."

I said: "Yes. They are. People call those their HOME."

She said: "No! No people! I am not a PEOPLE!"

I said: "Okay..." and then "oh boy..." under my breath as I was helping her into her carseat. 

She yelled: "I am not a BOY!!!"

And that's when I gave up the conversation. That's all you can do with her. Just back away and try to disengage, or she'll take you right down the rabbit hole with her. 

Meet Steve

Her name has, unfortunately, been "Steve" all day. I've been trying to get her to attach to a new name before church tomorrow, because that will be really embarrassing. The regulars are used to our insanity. But for Easter there will be newcomers and those who only church it on holidays, therefore a bigger crowd, and one that might think it odd when a little girl with a stunning smile, porcelain skin, dimples, and gorgeous waist-length blond ringlets walks right up and says, "Hi, I'm Steve."

"Stevie?"

"No! Steve!"

And I will be shrinking away into the crowd pretending I don't know her.

The nicknames are fine at home. Or even in public if she was shy. But she's a bold, brassy thing who walks right up to every single person in sight and says, "Hi, I'm [insert ridiculous nickname of the day.]." And if it's a man, she immediately lifts up her shirt, which is, you know, just fabulous.

"Watch me, Mommy!"

When she was 2 years old we were at McDonalds and a girl two months younger ate an entire hamburger, was all over the play structure, very talkative, and calling repeatedly, "Watch me, Mommy!" "Look at me, Mommy, I'm sliding!" I was so depressed because at that time my daughter wasn't eating anything but one kind of yogurt and one brand of crackers, was afraid of the play structure, and wasn't even able to say, "Mommy", let alone an entire "sharing" sentence.

Today, almost 2 years later, she ate chicken nuggets and sweet potato fries tonight for dinner at home. Then outside in the backyard, she was leaping off her play structure and called, "Watch me, Mommy!" I was busy struggling with the hand mower, and for the first time, I had to stop what I was doing so I could turn to watch her. Then I realized that was the first time for a moment like that!

There's still a lot of things we can't do, but we've come a long way!

Context: "people" and "body"

Many, many words cause communication problems for us. Two of those are "people" and "body." As much as I try to define and find a "context" that she can understand, I cannot get her to understand what these words mean.

When she hears the word "people" she yells: "No people!" or "I'm not a people!" or "You're not a people, Mommy, you're mommy!" (yeah, no kidding)

As for body, she understands the names for all the parts of her body, except for the concept of all of them as a whole being called a "body."

And then we have double trouble when I use the words "people" and "anybody/nobody/somebody" too closely together.

That kind of talk sends us directly into the realm of the abstract, and nothing good ever happens for us there.