A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Saturday, January 30, 2010

Happy Birthday Trees!!






We're Jews. You probably know that by now. Today we Jews celebrate a holiday called Tu B'Shevat. Wanna know what that means in English? Well, it literally translates to "the 15th of the month of Shevat." Not nearly as exciting as you thought, huh? It's basically and otherwise known as The New Year for the Trees. So, we celebrated this week by making a family tree in Little Bird's school:
Every apple was meant to have some facts about trees. I think the bird's was the only project that said "trees are fun to hug."

Two nights ago there was a program at her school in honor of the holiday. The kids came in PJs and decorated vanilla wafers with green frosting and sprinkles (little trees). Of course, I'd checked ahead of time so I could come prepared with our own GFCF version. Well, my girl wasn't so into the craft of it all, but she sure did like the frosting I'd made for her

and the sprinkles

So cute, right?

When we'd arrived at the event, some of the kids came running over to Little Bird shouting "[Little Bird]'s here!" She was like a freaking rock star!!
Then came the storytime. A librarian read some books about the holiday and Little Bird crawled into my lap. Before I knew it, two other girls from her class had crawled into my lap, too. Now, I'll be honest. I'm no Mary Poppins. I'm obviously an outrageously amazing mommy to my bird, but I don't think I always give off a kid-friendly vibe. Maybe I'm wrong...


Those kids freaking love my bird. I'm desperately hoping that continues. I'll need those kids (the ones she knows now and the ones she will know) to advocate for my little bird; to fight off the bullies; to help her along when I'm not there.

If you want to know a little bit more about Tu B'Shevat, you can CLICK HERE for a quickie overview.
Also, for some reason when I think of this holiday, I can't help but think of 
Bob Ross and his "Happy Little Trees"





Monday, January 25, 2010

hunting for hope

I did something big today. Really big. I cleaned out the storage room in the basement and filled my car with stuff I don't need anymore. Baby stuff. The bouncy seat, bumbo seat, jumparoo, boppy pillows, portable high chair, infant car seat, first potty seat, etc. Then I drove it over to a place where people turn when they're in need. I know these things are better off in someone's hands who will actually use them. The lady at the facility asked, "how old is your child now?" I said five. She casually replied, "ahhh, school age." Insert knife in heart. "yep," I responded. When she grabbed the baby potty seat she chuckled and joked, "I bet you're glad you're done with that!" Twist said knife in heart. I smiled my fakest smile and reminded myself to breathe. Greg was with me this morning before he hopped on a plane. We loaded up the storage area of this charity and I took a second to look at our stuff. Got a little sad. Not because of the whole I-want-another-baby-but-dont-want-to-risk-it thing. But, because that was MY baby's stuff. I miss that new baby feeling when there's so much hope and happiness and everything is exciting.

This afternoon while meeting with the psychologist who treats Little Bird, I asked him the 3 questions that I ask everyone who works with her from time to time: 1) do you think she'll be a functioning member of society? 2) do you think she's gonna live with me forever or do you think she'll be able to live independently one day? 3) do you think she'll end up in a group home?  His answers: 1) I don't know, 2) I can't quite tell yet, 3) I can't tell that, either.
Heavy, right? I walked out of there and couldn't even remember those feelings of hope, happiness, and everything is exciting. Of course, no one could answer those questions for me. Ever. There's no crystal ball. I've heard it a million times. I'm still hunting for it, though. I'm hunting for hope.


Hope and Help for Haiti

"Is there a home for the homeless?
Is there hope for the hopeless?"
-Brett Dennen

My friend, Catherine, is on her way home from Haiti. She's been there for the last week. When she told me she was going, I told her to bring a journal because this would be a life-changing experience. I just checked my text history. My exact words were "wow. this will change your life. you must keep a personal journal to look back on and to share with others."

Please spend a little time reading her pieces for the Detroit News

There are so many places to donate funds for Haiti's Earthquake Relief. I like Anderson Cooper's list.

Sunday, January 24, 2010

Run, Forrest, Run!

We're flipping through the channels. Well, I'm on my Mac and G's on the other couch with the remote in his hand. Forrest Gump is on TV right now. We landed on the scene where Forrest is speaking to a rally/march on washington, announces his name, then Jenny comes running through the crowd calling out "Forrest! Forrest!"  I said to G, "Don't you hope that Little Bird has a 'Jenny'?" He gave me a sad look. Then I got teary.

And that's all I have to say about that.

Yes, it's her birthday

"Go shorty, it's your birthday"
-50 Cent

I'm sure some of you have checked in here today, looking for something about Little Bird's birthday. Well, I don't have much to say (I know, right?!) so I'm going to let you re-read last year's Happy Birthday Little Bird post.  I still feel and think all the things I wrote last year. This year is a bit harder, so I have a bit less to say. Plus, haven't I said it all already? So here are some pictures from Little Bird's big day...
It was pretty painful getting through that cake thing. But, I baked it (yes, it's GFCF), so we were gonna blow out the candles and smile for the camera, dammit!! We got through the first "happy birthday to you"and she started screaming, so I put the cake in front of her and let her blow out the candles.
I am not in favor of having huge parties for kids, so I usually don't throw them. Plus, it's HARD to have a party and fake happy around all those typical kids and their typical parents. I fucking hate kids birthday parties. I usually RSVP no. The other thing is, I wouldn't know when to stop inviting. You have to invite the whole preschool class (18 kids), plus if you invite this kid, you have to invite that one and that one. Before you know it, you're having a way-too-big-for-a-5-year-old party. The other reason not to throw a big party is this. But, I digress.

Happy Birthday Little Bird

Saturday, January 23, 2010

The High Cost of Autism

The New York Times featured an article on something so many of us know SO much about: The Financial Burden of Autism. 15 states—Arizona, Colorado, Connecticut, Florida, Illinois, Indiana, Louisiana, Montana, Nevada, New Jersey, New Mexico, Pennsylvania, South Carolina,Texas and Wisconsin—specifically require insurers to provide coverage for the treatment of Autism. I don't live in one of those states.


Six Miraculous Years!

I just got home from the gym where I was trying to work off the pizza and cake I ate last night at Shay's 6th birthday party. It occurred to me that I can't let Shay's birthday go by without mentioning her and what a miracle that little girl is. PLEASE read last year's post on Shay's birthday (just change the 5 to 6 in your head, ok?). When you're done reading about this great love in my life, please go donate your organs, ok? Thanks.

Friday, January 22, 2010

team effort



This is how I blog....







"Do Not Door"

"Break on through to the other side"
-The Doors


Alright, so I'm picking LB up from school and bundling her up: coat and hat. She starts staring straight ahead. What is she looking at? It's just a door! But it's not just a door. There's a sign on the door. 

"Are you looking at the sign? What does it say?" 
"DO NOT DOOR!"



I had no idea she was reading little bits here and there. We came home and I asked her what a few more things said. Yep, she got a bunch of those, too. Not all, but enough to prove her point. I always figured that every word would be a sight word for her. Meaning that, she'd memorize what a word looked like and would associate that with that word; as opposed to sounding out words to learn to read. But, lately I've noticed her sounding out words a bit. I have never worried about whether she would read or not. Hyperlexia was one of our first red flags. I'm sure many of you have heard the story of Little Bird being 2 1/2 and not able to say "mama" or "dada" but upon stopping at a red light next to a gas station, I heard from the back seat, "M-O-B-I-L". And that's when I discovered her first splinter skill (a skill learned out of the normal developmental sequence). 


This reminds me that kids with ASD are such puzzles. We never know what they can or cannot do because they often cannot show us. Well, yesterday my little bird showed me just one more thing that she can and will do. 

Thursday, January 21, 2010

Brother can you spare a..... brother?

Little Bird is my only child. My first pregnancy, first born, only born. Since we discovered some of her "issues" at her 6 month check up, and started this journey when she was so young, I never really had the full fun, stress-free (or less stressed) mothering experience. Although, when I look back at photos of us from 0-6 months, it's really easy to see just how happy I was.



 I can easily see the change after that. Yes, I faked it pretty well, but I can still see it. Anyway, since it was kinda tough from the beginning, I never got to the point where I was ready to have another baby. Then five years went by and it just got harder and harder. Now I'm even further away from thinking of having another kid.

I'm writing this post for everyone who asks me at least once a week when and if I'll have another child

People really do ask all the time. Every time they do, I have to swallow the lump in my throat and remind myself to inhale and then exhale again. Of course I'd like to have another child. My husband would really like to have another child.  What holds me back from going for it is the fear that this could happen again.... or worse. I've seen way too much sitting in waiting rooms and googled so many horrible things that my little bird has been tested for over the years. In short, I know too much. Plus, how could I possibly take care of LB and another human being? I couldn't give to LB what I give now and another kid would get so gypped (my apologies to any gypsies reading this) for attention.  The biggest bottom line is that I cannot risk this happening again. Some (most) days I'm barely hanging on to sanity with one kid with sp needs. Two would send me over the fucking edge. 

I have often said that I'd rather regret not having another child, than having one. Sad. I know.

Sometimes I wish we didn't know until LB was older because I probably would've done it again. Then, she'd have a playmate, another at-home teammate, someone to learn from, someone to protect her as she gets older and gets teased in school or life. I know that my friends will make their kids be nice to her and (if she can go to school) protect her from bullies. But, it's probably not the same as a sibling. The biggest reason I wish she had a sibling is - breathe - because someone's gonna need to take care of her when she's a grown up. Of course, I also want desperately to have the experience of raising a typical kid: soccer games, birthday parties, dance recitals, playmates, fun times. Those pics people post of their little kids' recitals or soccer games, or the cute things they say, or them with their friends (REAL friends)- they fucking kill me. Don't get me wrong, I have fun times, they're just slightly bittersweet. I've changed my definition of fun and normal.

I'm the only mom of an autistic kid that I know without a sibling for that kiddo. I have a lot of friends with one kid with ASD and another who is neurotypical (NT). But, I know a lot of moms who had more than one with ASD. I'm just not willing to take that risk. Trust me, it makes me sad to even type that. If someone could give me a guarantee that a kid would be NT, I'd go for it today. I never thought I'd have kids, but I also never thought I'd have just one.

So I wonder: brother, can you spare a brother?

Tuesday, January 19, 2010

five away from five

"But you, you came to break me.
Oh you, you came to save me."
-Zee Avi


I've been thinking about this all day. Today is January 19th, which was my due date five years ago. For 9 1/2 months I thought of that date and talked about it every time anyone and everyone asked the two questions they ask every pregnant lady: when are you due and what are you having? There are so many expectations you have when you're having a baby- especially your first. I mean, look how happy I was...



Well, I didn't find out what I was having, but I just knew it would be a boy. In fact, I only picked out one name, fit for a boy. Well, the baby didn't come that day and when it finally came out, it was a girl! She got the boy name anyway- it was the only one I liked. Just the beginning of expectations not being met. 

These are very flattering prego pics, I assure you. I really was enormous


She's gonna be 5 in five days. The dreaded FIVE. I am not happy about it. I was supposed to be done with all this by five. We all were. So many moms get their kids into therapies around 2 (though Little Bird started at 8 months), and we're often told that by 5 we'll probably be done. That way, our kids can enter school with their peers, doing all the typical things that typical kids do. When five comes around and we aren't done, it's a knife through the heart and a reminder of the one thing we all dread: that this is forever. Well, so far I think five fucking sucks. Can you say sucks here? 


I'm grieving. It's part of this whole process. I don't think you just grieve once. It's a part of the process that comes and goes. Well, it's here now. I'm grieving the loss of the expectations. The loss of the dream. That stuff comes up all the time. It happens a lot when parents of typical kids complain about total bullshit, even though it's a big deal to them; or when they talk about their kids doing the most mundane things that I'm spending thousands of dollars to teach and train my own kid to do; or even worse, when they brag about things that seem like everyday things, but that my kid might never ever be able to do. But, the other times we grieve are when the milestones come around. Like five. I'm sure I'll go through it all again when all the kids she was a baby with go to real school and she'll be repeating a grade (if she's able to go); then again when they start their dance classes, hebrew school, get bat mitzvahed, get drivers permits & licenses, take college entrance exams, etc. Should I keep going? Because I can. Trust me, I can. I'm not where I wanted to be when she turns five. That's pretty tough.


But, of course, I'm able to find some bliss in the little things. Today as we walked down the stairs to her classroom, I was impatient and frustrated that it was taking her so long. But, it occurred to me that there was a point when we weren't certain she'd ever walk; when we spent so much time, effort, and money to teach her basic movements like rolling over, crawling, standing alone, then taking steps. Now she often runs away from me and as I chase after her, I giggle as I curse the physical therapist who has worked with her since she was 8 months old. I know another mom would've just been frustrated that the kid wasn't moving quickly enough. 


I am not the same person I was when I started this journey. I'm a little sadder, a little harsher, a lot more compassionate toward others. I'm a better friend, a WAY better mom than I ever expected to be, and a much better person. So, she's changed my perspective on life, love, and what those two things really are. I'm pretty fucking awesome. It's true. But the real truth is that it's all because of her. She came to save me.

Monday, January 18, 2010

It's torture!!

In honor of 24 coming back on the air this week, I just wanted to mention that Jack Bauer is pretty awesome. But, if he really wanted terrorists to talk, he should consider putting Little Bird in a room with them while she's whining. I swear, that would get anyone to tell you what you want to hear. Anything to make it stop! It's torture!!!

Sunday, January 17, 2010

Freeze!!

This is so fabulous, I just had to share it....


Wasn't that great??!

Friday, January 15, 2010

Another way to help kids with special needs like mine!




You've probably gotten tons of the Chase Community Giving promos via friends on Faccebook. It's kind of a big deal. They're giving away loads of money ($1M) which can make a huge difference many charities. Last month they narrowed it down to 100 charities from around 500,000 contestants. My home away from home, The Friendship Circle was chosen as one of those top 100 charities. Now they're in the running to win the BIG prize. This contest is running only via Facebook, which you're probably on since you're A) breathing and B) already on the interwebs. Please check out www.votefc.com and find out more about how to vote and how to help secure this huge prize which will help tons of kids with special needs like mine (and maybe yours, too!).
Friendship Circle is a non-profit dedicated to enriching the lives of individuals with special needs through critical life skills training, promoting advocacy in the general population through our strong volunteer core and play-therapy based programs that pair teens and special friends together to form a life-changing bond of friendship. There are Friendship Circles all over the world. Maybe even in your town. This prize would help promote the Friendship Circle commitment to helping kids with special needs and their families all over the world. We need your help. Vote. Just do it. Seriously. You're still here? Go vote already. Sheesh!
Ok, here's something you should know about all this Chase Community Giving stuff. You actually have 5 votes. But only one per charity. This is really good news because there are some pretty awesome charities. There's one more I want to tell you about....
My old friend Victoria Strong and her husband, Bill, have a gorgeous little girl named Gwendolyn. She has Spinal Muscular Atrophy (SMA), which is the leading genetic killer of children under 2. Victoria and Bill started a foundation called The Gwendolyn Strong Foundation and they're in the running, too! Researchers are this close to a cure for SMA. $1M could help make a difference!! Visit their website, learn about SMA and consider giving a vote to them, too! 
Alright, it's time to vote!! DO IT! Voting starts today, January 15th and runs thru January 22. 

Thursday, January 14, 2010

Trees


I drove past these trees today on my way to drop Little Bird off at school. I thought it looked like a mommy tree and a baby bird tree, so I grabbed the camera and took a shot on my way back home.

Wednesday, January 13, 2010

Pure Joy


Here are a couple pics of me and my little bird at the park in the California Desert last month.






Pure Joy.

I posted once before about a pretty cool experience we had at this same park back in April of '09. Click Here to read it.

When it's too much, tune in

"My headphones. They saved my life"
-Bjork


I just read this great post by another blogger mom.  People with ASD often have a hard time making sense of the sensory input all around them. Sometimes people without ASD even have a tough time- you should see me when the vacuum cleaner is on! In fact, last week when the vacuum cleaner was running, I turned on the radio and I turned it up LOUD just to drown out that sound. For me, it's really just the vacuum cleaner. And fans. And all white noise in general. But, for people with ASD, it could be just about anything. I've never posted a video of Little Bird when there's a lawn mower anywhere within a 2 mile radius, but it's not pretty. It's flappy, spinny, stimmy, and out of control. Literally. 


This mom's idea is for people to send in their old, out-of-date iPods so that they can be given to people with ASD to use when they're feeling overwhelmed by the sensory input around them. Think about it. What's your old iPod done for you lately anyway?

Tuesday, January 12, 2010

Just Because

I got it from my mama

My mommy makes me laugh. She's totally awesome. If you know her, you're probably nodding your head in agreement. She's where I get a lot of my umph from. She sent me an email today with this picture attached (it's bras in the little girls' section)...




"Saw these at target and tried to take the picture from the side to show how small they are. So suck.... I mean sick..  But suck too!"


That reminds me.... I wrote once before about the fact that I got it from my mama.

Monday, January 11, 2010

Who's afraid of the big bad B-12?

I've been feeling so nervous about starting the Methyl B12 shots again. My plan is to give half the dose and see how Little Bird does. Last time around, she got really hyper and super stimmy.  Don't want to deal with that again. Just in case that does happen again, can someone tell me how long it stays in the system and how long it will take to get her back?

Okay, so anyway, I've been nervous about it but I decided that today I would do it. After all, she had an amazing weekend. Actually, an amazing week. Yes, that's right! I had about 6 days in-a-mutha-freaking-row of a happy, high-performing bird.

Dropped her off at school this morn and she massively melted down. Massively. Tears, snot, sobs. Her awesome shadow directed her over to the computer and then worked to calm her down. Apparently, she was a bit "off" all morning, until she made a huge pee- in her pants. She also laughed like a maniac during story time at school today. Not sure what that's about. I'm not thinking yeast, though. So, the crazy tantrum paired with the random hysterical laughing leads me to want to wait another day before giving her a shot. If anything happens, I want to make sure I can identify the culprit. Plus, I've added a few supplements in the last week and I think it's so important to do things slowly so that its easier to tell what's doing what.

Right now she's slightly different from how awesome she's been for the past week. Still, I'm gonna call her awesome.

Friday, January 8, 2010

extraordinary efforts

I recently wrote in an email to a girlfriend: "I know, I'm crazy!" 


and she replied:


"i wouldn't call it crazy, i'd say you are just doing everything possible to help your kid. you're a normal mom (who happens to be a tough chick) put in extraordinary circumstances, which leads you to extraordinary efforts."


It's really nice to have supportive friends. Thanks, Jessica!

Thursday, January 7, 2010

I do voodoo

"Ordinary don't mean nothin', no how
Look what's ordinary now"
-Monsters of Folk

Voodoo: noun- a charm superstitiously believed to embody magical powers. 

Seriously. I looked it up on thefreedictionary.com. I'm bringing this up because today I saw the man I refer to as my voodoo doctor. See, I'm one of the many moms who never, ever believed in the biomedical approach to healing Autism. When I was pregnant, I read Jenny McCarthy's Belly Laughs about pregnancy. Then a year later, she put out Baby Laughs about the first year of mommyhood right when I was there- in the first year of mommyhood. I even read the third, not-so-good-one: Life Laughs.  I was well into my special needs journey when she wrote her Louder Than Words book, sharing with the world that her son had "recovered" from Autism with the help of supplements and diet. Yes, I thought she was nuts. Completely freaking nuts. Then, her best book was published a couple weeks after Little Bird's big bad official ASD diagnosis. I bought Mother Warriors the very day it came out. Never had I ever heard so much hope. Still, I thought it was nuts. Vaccine toxicity? Heavy Metals? Gluten? Casein? These were all new terms to me. I was so sure that these were desperate, crazy parents. And then, I became one. Little Bird became GF/CF within weeks (in 2008).

That brings me to voodoo. See, I'm looking for a miracle. I'm looking for magical powers. That's how I came to the DAN! (defeat autism now!)/biomedical world after 4 years of conventional medicine's therapies and doctors who continuously shrugged their shoulders.
I call Little Bird's DAN! doctor the voodoo doctor. We saw him yesterday. After the success of the flagyl therapy and the supplements she's been on for a few months now, we're ready to add more. 


Alright, here's what she's on:
-Creatine
-Carnitine
-Vitamin D
-Magnesium/Calcium
-Fish Oil
-Therbiotic Complete (powerful probiotics)


Here's what we're adding:
-CoQ10
-Vitamin E (antioxidants)
-Isometrix (multivitamin)
-folinic acid


I'm going to try the B12 shots again. She didn't do so well the last time around; very hyper and stimmy with a side of scripty. This time, I'm going to give her half the dose and I'm adding the folinic acid, which should make a difference. Now that her gut is healed a bit, she might be able to better absorb the B12. We'll see. 


I was reading my bible last night, Healing the New Childhood Epidemics by Dr. Kenneth Bock, and I found that CoQ10 was thought to be extremely beneficial for kids with neuromuscular conditions, especially those with mitochondrial issues. Well, then why didn't my bird's neuromuscular neurologist suggest we give her a little CoQ10 2 1/2 years ago when he was so convinced that she had a mitochondrial disease that we did a muscle biopsy and cut a chunk of her thigh muscle out for testing??? Normal, by the way. Why didn't the specialists suggest creatine supplements back when they said her low muscle tone is so significant, they've only seen winging scapulae in textbooks?! 


Well, they weren't moving us forward, so we're moving on. That's how I've become one of those crazy moms. But guess what?  That's what's ordinary now. In my world, crazy moms are the new normal. 

Wednesday, January 6, 2010

Just For Today

I love to watch Eirik Solheim's work. He does these fabulous time-lapse videos. 




There are reminders all around me that change is constant and that this too shall pass.

My Life is Average

So, I have this friend. In the interest of protecting the innocent, let's call him.... "Ben". Ok, so I was telling "Ben" something I experienced a few nights ago. It went something like this:
Little Bird was in the bath tub. I was sitting next to the tub on the floor, reading a book and maybe enjoying a cocktail (yes, it was after 5pm). Little Bird was happily splashing and playing in the tub when she said the two words NO mom ever wants to hear from a kid in the tub: "stinky poop". MLIA.
Ok, so some of you are wondering what's MLIA? It stands for My Life Is Average and is a very fun website wherein people share anecdotes of their daily "average" lives. Its done in the same vein as FMyLife.com. F My Life. Get it?
Anyway, so this friend "Ben" replied that it was interesting I used MLIA instead of FML and that warrior moms probably use MLIA for situations which normies (my word, not his) might consider more FML moments.
The point is, this life changes your perspective. On everything. Poop in the bath tub? Trust me, that's not going to be the craziest thing that happens around here this week. It probably wasn't even the craziest thing that happened that day- I'm just so tired, I can't remember the rest of that day!!

Tuesday, January 5, 2010

Back to reality

"And one of these days, things are gonna get better.
You won't have to worry no more."
-Tom Petty and the Heartbreakers
Back to reality.
Today was Little Bird's first day back at school after a loooooong winter break. I was nervous about how she'd react to going back. We turned the corner to her classroom and she buried her head in my thigh. Two classmates ran up to her with delight, shouting her name and coming in for hugs. They love her. And I love that. I can't wait to hear the report upon pick-up because this is the first day back after our first round of flagyl therapy. I've seen a change. My very skeptical husband has seen a change. I hope that change continues and we can ride this wave a little longer. 'Cause when you're UP, you're UP.
I've said before that kids with ASD are like snowflakes. No two are alike. So many kids on the spectrum have a hard time sleeping through the night. I have friends whose kids have NEVER slept through the night. Not our story. My little bird first slept through the night when she was 4 months old and has ever since. Side note: the first week she ever slept through the night, we were visiting family in Colorado at 8500 ft, and I always thought that had something to do with it! Anyway, at 4:30am this morning, Little Bird walked into my room with a "mommy mommy!!" Looks like we forgot to latch the gate on her door last night. I went ahead and took her back to her bed, where I tried to snuggle her back to sleep. But, nope! Not happening. She was up. No interest in going back to bed. She was so UP, so chatty, just wanted to play. I wasn't ready to play. We hung out in her room for a couple hours before going downstairs and indulging in our morning drinks: coffee for me, watered down apple juice for her (spiked with creatine and carnitine). Interestingly enough, she stayed UP the whole time.UP means engaged, fun, interactive, talkative. I have a whole new respect for those moms whose babes are up all night or a few times a night. Really, I do.
As I close this post, I tune into what's playing on my radio. It's Tom Petty singing "and one of these days, things are gonna get better. You wont have to worry no more." Amen.
UPDATE: first day back to school went well. She was quiet, but fell back into the routine very well!!

Friday, January 1, 2010

Happy New Year

Peace in 2010 !!
Happy New Year from me and my little bird.
It's 2010- where's my hoverboard and jetpack?
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See, it's not just my mom! (since Jan 1, 2010)