Ass Burgers?

In 29 days Lily will be two years old.

That almost breaks my heart to say!

The closer we get to this day, the more anxious I become. Why? Because most parents of children with Asperger Syndrome say that's when they started to notice their child's symptoms.

What is Asperger's?

Here's the easy Wiki Answer:

"Asperger syndrome (AS) is one of the autism spectrum disorders (ASD) or pervasive developmental disorders (PDD), which are a spectrum of psychological conditions that are characterized by abnormalities of social interaction and communication that pervade the individual's functioning, and by restricted and repetitive interests and behavior "

When we started doing research about A.S. after we found out that Eamon has it, we learned several things. Like, first of all, AS is NOT Autism. One of the biggest debates going on in the community right now is that there are certain people want to group in people with AS with Autism and label them "High Functioning Autistic". Some people in the AS community find it very insulting, we're not even sure if Lily has it and I've already taken the stance that this should NOT happen. We've also heard the numbers of how many children are going undiagnosed, and MISdiagnosed leading an overdiagnosed population of children with AS, and an underserved population of children who are going without help. [Not to mention the small population of adults who have it, but were just labelled "disruptive" in school who are still struggling with their day to day lives because communication is such a struggle.] Researchers are also finding a link that suggests it's being passed down genetically so for quite a while I've been waiting to see what-if anything-comes up with Lily.

Have you ever noticed how many pictures I have of this beautiful girl's eyelashes?

It's because I have a never ending stock pile of them on my computer. I could post a different picture of this sweet baby looking down every day for the next 3 years. Knowing that one symptom that is noted for children her age is poor eye contact is the first thing that gave me suspicions. Talking to Lily is very difficult. She doesn't look at me in the eyes. When I take her picture, it's WORK to get her to look at me, which is great from a photographer stand-point, since I need all the practice I can get, but the day to day stresses me out. I'm from a "high context" family. Nearly all of the conversations between my mom, my sisters, and me are had with much more body language than words. Being in a house where I've had to COMPLETELY change the way I talk has been extremely taxing on me, but it's easier for me to change than the rest of my family. Anyway, back to Lily. When I talk to her it's this constant "look at mama" conversation because it makes her SO uncomfortable. She looks at me for 3-5 seconds TOPS then trails off, then back again, then darts off. When I see how other kids her age interact with their parents, I get jealous. At first I thought Lily was just disobedient, but now I'm really able to see how uncomfortable it makes her.

Lily also had PHENOMENAL verbal skills for her first...15? months. I can usually understand what she's trying to tell me, but that's because I'm Mama. I can piece all of her fragmented thoughts together to work with her. But then I hear other kids her age and it's just unsettling. Lily knows lots of words, but she doesn't put them together. When I say "Lily asked for an orange" Lily actually just says "Orange?" But I'm finding out that most children her age say "Mama, want orange please." Lily's friend Eliza is four days younger than her and physically developed slower than her [actually, it was normal, Lily just started sitting, crawling, and walking, like a super baby] but her communication is just overwhelmingly amazing. On one hand I really like for them to hang out because they're the same age and have a lot of fun together, but on the other, it always puts a knot in my stomach because all I can think is "Why isn't Lily saying that?" What really killed me is when "Ziza's" daddy said that she told him "I love you" unprompted. I actually started crying. Other than one time when I sat with her for 30 mins teaching her how to say it, and she did say it-ONCE-, Lily's never told Eamon or I she loves us. [aaaaand there are the tears.] I hear that this act of saying these three little words is what bothers a lot of parents the most. 

Which brings us to empathy. THIS is where we might be out of the woods. Is she fascinated with one thing? Yes. Does she get upset if her routines are disrupted? Quite certainly. [I'll tell you about dinner time one day...oy.] Are her fine motor skills something to brag about? Not at all. Does she pretend? If you call throwing flower, salt, raisins, dog food, and water in a bowl "pretend" cooking, then yes. But lack of empathy, one of the biggest indicators of AS, might not be something Lily has. I only say this because when a song with a sappy or dramatic melody comes on, it makes her well up and cry. She doesn't cry when someone else does, it's mostly the music thing, so we'll see.

I'm opening myself up and talking about this because I want to know if any of you parents out there have children who are diagnosed with Asperger's Syndrome. I'm not doing it to have her diagnosed over the internet or anything like that. I've also debated sharing this for quite some time because I don't want anyone to ever treat my child [or anyone in my family for that matter] differently because of who they are. You bet your ass I will never, EVER introduce Lily by saying "This is Lily, she has AS" how unfair is that? That doesn't mean that if she does have it that I'm going to hide it from her...god no. Since I'm homeschooling I want to know as much as I can to help my little girl the best that I can. I love her so much and just want her to succeed.

So anyway...feel free to talk about your experience with AS, what signs did you first notice? What are some misconceptions you had/have? What do you want to know more about?

Happy Thursday!

Mae

Mae Burke Photography

Head on over to the photo blog for today's post :]

Happy Weekend everyone!

Mae

Irrational Fear

Meet Barkley.

The center of many a joke on one particularly hilarious episode of Modern Family.

Eamon and I were watching this episode a few days ago while Lily was in the room.
She turned around. Saw him. Screamed "BAD DOG!!!!" and ran to me shaking.
Eamon and I were so confused and I wanted to laugh and make light of it, but Lily was TERRIFIED. Our dang computer wouldn't even pause the stupid DVD and it just kept showing him. She kept screaming and shaking and saying "NO NO!!!" but the stupid thing would just NOT pause.
We finally got it to stop and Lily was in hysterics.
For the past few days it's been a battle to get her to go into any room that doesn't have a light on without her saying "What about the bad dog?" Every naptime and night-night kiss ends with Lily pointing to the opposite corner of who room pouting "But..the bad dog!"

When I was younger I used to see things in the dark.
It would paralyze me. I was haunted by heavy, heavy stuff and sometimes just thinking about it would get me so worked up I couldn't even bring myself to open my eyes. This happened until I was about 17.
In light of Lily's new paranoya, I've been faced with some of my own irrational fears. The things that rattle around in my empty little head when the lights aren't on that run rampant.

I'm afraid of being raped when I go check the mail at night.
I'm afraid Lily has Asperger's Syndrome. and I'm not going to be able to deal with it.
I'm afraid that the deflated air-bag that now sits between my hips will drive away my husband.
I'm afraid my mom will resent me the rest of my life because I won't move closer.
I'm afraid people will remember me as a liar [I used to lie A. LOT.]
I'm afraid that something will happen to me and I won't be able to feed Norah and she'll have to be formula fed [call me judgmental and a jerk, whatever, I think that's one of the worst things you can do for your babies. There is little on this Earth that could make me give her formula when I have boobs.]
I'm afraid that when I'm on an overpass that it will crumble beneath me.

In general, I guess I'm just a fearful person. That's so lame.
But today I've reminded myself to just take every thought captive and keep going. To see through and know there isn't a 6 ft tall dog standing in the corner ;]

In other news.
Yesterday sucked balls. Giant, hairy, walrus balls.
My twitter feed read like a doomsday calendar.
In short, I started hating all of my recent photography, our food stamps have been delayed til the 12th, which means we have to stop the cleanse, realized I hadn't been taking my PPD supplements since I started the cleanse [moron] Lily crapped her pants in Central Market, had to clean her butt off with toilet water and thin toilet paper [all you moms who still change your 18 month+ kids crap diapers, my hat's off to you. That shit is disgusting. Straight up.] with Norah strapped to me in the Moby, got back to the cart and she pooped again [I think it was the cleanse], got home, put her in the bath, she pooped in the tub and FUH-REAKED out, I had a meltdown with Eamon, went to bed, woke up with pink eye. So ya. it was awful. I've been dropping colloidal silver in my eye all day and it seems to be gone, PRAISE THE LORD.

Here are some pics of our little outing pre poopaplooza
She thinks she's so big and doesn't have to use a straw but when she gets tired...

And my poor husband does NOT know how to use my camera, BUT, Lily makes this face every time he gets it out.

Too funny.

Hope you all have a happy weekend!
Mae