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.

Sunday, February 28, 2010

Extra! Extra!


A few articles that have caught my eye this weekend...

KNOW YOUR RIGHTS
Too often parents are intimidated by the seemingly knowledgeable professionals in the schools and don't ask for more than is being offered. You can. You're entitled to do so. Your kid needs you to.


WATCH HOW YOU HOLD THAT CRAYON
Apparently, taking your kid to OT is all the rage in affluent neighborhoods. This is a real quote from this article: One father on the Upper East Side said anxiety about his son’s grip — his 3-year-old holds crayons in his fist — propelled him to seek therapy.

“The nursery admission people tell you they want your child to be ready to learn how to write,” said the father, who spoke anonymously so his son wouldn’t run afoul of nursery school administrators. “And I knew they would take one look at the way my son held a crayon and he’d be out of the running.”
Wait, so the kid could grip a crayon at 3? With all his fingers round the very thin crayon? In my house, that's pretty good muscle control :)  I think I need to add that this article was in the New York Times' Fashion & Style section! Well, I sure hope that the real OTs out there still find time in their trendy schedules to see the kids who really need it.


CHRONIC HEALTH CONDITIONS INCREASING IN CHILDREN
More than a quarter of ALL U.S. children have a chronic health condition. WTF??

Saturday, February 27, 2010

Happy Purim 2010

"Arrrrrrggghhh!" and Chag Sameach (happy holiday)! 


Yes, Little Bird chose to wear the same costume she wore last year.

gifts from the gifts in my life

"All together now"
-The Beatles

I've dedicated about 90% of this blog to how much Autism and having a kid with special needs sucks. Here's one of those "other 10%" posts. 
Having a kid with special needs has brought into my life some absolutely amazing people. I've made amazing friends sitting in therapy center waiting rooms, special needs, chat rooms, early intervention programs, etc. There are some moms who have kids like mine who have become MY girls. These women are stunning and I'd never have gotten the chance to know them if it wasn't for Autism. These are people who love me and love my kid for who we really are.

There are others who have come into our lives because of the whole special needs thing who don't really interact with me as much as they do with Little Bird. The freaking love my kid. It's true that every time she's going to start working with someone new, I warn them: you're going to fall in love with this kid. And they do. They all do.

I've talked about it many times before, but Little Bird participates in some amazing programs at Friendship Circle where typical teens are paired up with kids with special needs. Little Bird's volunteer is a fabulous teen named Marni. I swear, I don't know how we got so lucky to have such an awesome volunteer (but between us, and the rest of the interwebs, ALL the teen volunteers at FC are ridiculously fab). Marni went to Israel last week and brought back a little something for my bird:
Super cute! 
Front: someone who loves me very much went to Israel and got me this t-shirt.
The back of the shirt says my bird's name in Hebrew. LOVE it!!!

A couple days ago, Little Bird's advocate (shadow/paraprofessional) at school gave me something very special as well. It's a beautiful kanga that she brought back from Kenya. 


Each kanga carries a message on it, and this one says, 
"ee mungu nipe uvumilivu" which means "g-d, give me patience"
Pretty amazing, right? This young woman has been a wonderful addition to our team. She is the kind of girl who has a beautiful aura all around her; just a beautiful spirit!! The best part of the story is that she was wearing it the first time she met Little Bird. Amazing.

Well, I'm blessed to have such special people in my life. If you're reading this, you count too!

Wednesday, February 24, 2010

CRASH! SLIDE! SPIN! BOOM!

Last year around this time, my husband traveled to Japan for a couple weeks. We were taking him to the airport, but had to make a quick stop at the drugstore. In the parking lot a woman hit my car. It was definitely a pain, but we weren't hurt and that's what matters, right? Today he's off to Japan again. I was planning on taking him to the airport a little early so I could make it to my appointment to take care of my hurt foot. You know that old saying that when you make plans, G-d laughs? Well HAHAHA. There we are, traveling along on the freeway when out of nowhere....

CRASH! SLIDE! SPIN! BOOM!


My heart stopped beating, I stopped breathing, but somehow I was able to say out loud, "we're okay, we're okay, we're okay" over and over and over again until we finally stopped spinning, sliding and landed in the snowy ditch off the freeway. I cannot believe that we didn't hit anyone else as we careened across the freeway. Pretty amazing, considering that we'd started out in the fast lane. We hugged, called 911, met the nicest police officer ever (shout out to officer Welch), got towed out of the snowy ditch, and made it to the airport on time.

For a little perspective... here you can see the tow truck pulling my car out of the ditch, and in the background, you can see the freeway


Yes, it was the other guy's fault and he knows it. He was ticketed, I got a copy of the report and all that will be taken care of. I'm really grateful that my bird wasn't with us, that no one was hurt, and that my heartbeat has returned to its normal rhythm. But, I'm back to square one with the whole foot thing.

Be careful out there, the roads are kinda icy :)

Tuesday, February 23, 2010

Great Blue Heron


Dropped off the bird at school and caught this scene out of the corner of my eye. Reached into my purse for my camera, but alas, I left it on my kitchen counter. Sometimes you've just gotta run home to grab your camera and hope that the wildlife is still there when you get back...


As I was taking a few shots, a car pulled up to me and asked, "do you know what that is?" I had no idea.  "It's a great blue heron. Kind of a junk bird." We talked for a few minutes and as he drove away I noticed the "Papa Romano's Pizza" sign on top of his car. Schooled by the pizza delivery guys again. Of course, then I started wondering who was ordering pizza at 9:42am.




Disclaimer: This video is so much more about the scene and sounds than it is about the handiwork.

Monday, February 22, 2010

My snow angel


This is what we did while the GF/CF chocolate chip cookies we baked were cooling off...


translation:
(inaudible)
I'm stuck! I make snow angels. Mommmmmyyyy! (cough) Help! Help

I'm THAT mom

I'm that mom that dropped off a coughing kid with a runny nose at school today. The only school within about 100 miles that is NOT closed today for a snow day. But, I had to. I had to get to a meeting that took a couple months to organize. I sat down this morning with her psychologist, play therapist, occupational therapist, speech therapist, and others who work with her. Now everyone's on the same page and got to share very valuable information regarding Little Bird and her care. They're even going to keep in touch and meet once a month to touch base and make sure they're all working together to get her where we want her.

So, yeah, I guess I'm that mom, too.


Friday, February 19, 2010

Follow Me

"Come Away With Me"
-Norah Jones


You should, like, totally follow my blog. I mean, you come here often; you read my posts; you comment on them either here or on my facebook page. So, just follow me. For realz. Do it.

Tuesday, February 16, 2010

hop hop hop

I've been limping for three days now. No idea what I did, but I can't bear much weight on my foot. Sometimes I wonder, how is it that I take such fabulous care of Little Bird, but I can't take care of myself? She's on a million supplements,  I take no vitamins. She is at OT twice per week, I haven't been to the gym in weeks. Yesterday, I took her to school, the psychologist, did a round of therapeutic listening at home in the blue swing and then a little scooter-board action, cooked dinner, made it to a meeting last night, etc but made no time to see a doctor about my foot. And so I limp along. 
It reminds me of being on an airplane. My mom was a stewardess for 15 years, you know. Do not call her a flight attendant. She was a stew. My dad was a passenger. Sparks flew somewhere between NY and LA. I think by the time they landed they'd moved in together. Married 37 yrs, btw. Anyway, you know how the flight attendants go through their spiel and tell you to put your oxygen mask on before you put one on a child and/or others?? Well, that's because we need to be able to take care of ourselves first, before we can care for others.
Bottom line: I'm not taking care of myself. My grandma g always put off taking care of herself because she was too busy taking care of my grandpa. And you know what? She died first. Twenty years ago today. I have the yahrtzeit candle lit. I miss her every day. The bird's middle name and Hebrew names are after her. I bet she'd want me to get my foot taken care of.

Sunday, February 14, 2010

Live Through This

"Live through this and you won't look back"
-Stars
It's no secret that things have gotten a little rough lately. That's why we're re-flagyl-ing. I know Little Bird's gut bacteria is back with a vengeance and needs to be hit with a strong antibiotic. I'm pretty sure I've already talked about what that kind of bacteria can do to a little kiddo. Google DHPPA to learn about the strain of bacteria that has taken over my bird's gut. Anyway, the past few days have been particularly difficult. I spent some time last night in tears, certain that there's no hope. My family is doomed. I even had nightmares last night. 

This morning started out so so so much better. Little Bird did really well with her play tutor, attending, pretending, communicating and playing appropriately. She came to tell me 3 times when she had to go potty and was proud of herself. Things were looking up. The afternoon had a few bumps along the way, but still, a better day than yesterday.

And then, something happened...
We were at Whole Foods and Little Bird was in the cart facing me. I was checking out the avocados when she suddenly reached out for me and said, "big hug, mommy!!" I dropped the fruit (yes, avocados are a fruit) and threw my arms around her. We hugged for at least a full minute- right there in the produce section. When we finally released, my bird looked at me and said "I yuv you, mommy." I turned to my husband and asked "are you seeing what's happening here?" It was a pretty special moment. I put it in my pocket for the next time I'm freaking out. It's already happened a few times since and I forgot about it, so I thought if I wrote it out, you'd all remind me later...

I know

"I could never change just what I feel
My face could never show what is not real"
-RHCP

I know some of you walk on eggshells around me. I know you think I'm fragile and you don't want to upset me. I know you choose your words wisely when you're bragging about your "normal" kids. I know you feel bad for me. I know you're glad it's not you. I know you wish you had some of what I have. I know you're a little jealous of me. I know you think you know me. I know that you do not; I hardly know me. I know you know. I know you have no idea.


I know.

(I also know that sometimes I ramble on)

Friday, February 12, 2010

I'm just sayin'

There are a few things in the news today that I'd like to bring to your attention...



The swine flu vaccine has made some BIG money for BIG Pharma. I'm sure they're oinking all the way to the bank. I felt like the whole swine flu epidemic was much ado about nothing. Yes, there were some pretty major cases and some people got very, very sick. But those people were already suffering from underlying issues. If you were otherwise healthy (like I was) and got the swine flu (like I did), you felt like shit for a few days (like I did) and laid in bed reading books and watching TV and playing on the internet (like I did) while your husband stepped up to the plate and took care of your kid (like mine did- thank god it was a weekend). Still, those pharmaceutical companies are freaking genius. They have an amazing spin and propaganda factory. Well done, Big Pharma. 
There's been an outbreak of mumps in one tight-knit community in New York. That's scary. Wanna know what's really scary? "most of the young men who were infected had been vaccinated against measles, mumps, and rubella (MMR) but the mumps portion of the vaccine is less effective than the others the federal report said."


Here's a fun project I found online. It's called The Six-Word Memoirs. The concept is describing an aspect of your life in six words. There are different categories. I liked the "momoires". Of course. Here's mine:
"Stronger than I thought I'd be."


Leave a comment and tell me: What would your six words be?

Thursday, February 11, 2010

Re-flagyl-ing

Just hung up with the DAN! Doctor. About to start the Flagyl again. When you're a mom like me you can just tell when you're in trouble. I swear, I can just smell the bacteria coming back in her gut. I know that sounds weird, but I know my kid. I know it's coming back. C'mon, Flagyl. Let's do this!

I expect to be doing this for a while. I think it's a cycle: bacteria build-up, flagyl to kill it, bacteria re-build, flagyl re-kill. And so on and so on and so on. Like a bacteria merry-go-round. Fun!

Paper boy

That red plastic bag holds my newspaper. I know it looks like it was just thrown onto the snow. Well, that's because IT WAS, despite the fact that I have a little box for my paper beneath my mailbox. The one and only time we found the paper in said "newspaper box" was over the holidays when attached to it we found a card from our paper delivery person soliciting a tip. 
Sorry, dude. Not happening. 

Wednesday, February 10, 2010

It's a virtue

"Every time I see you falling
I get down on my knees and pray"
-New Order


I will try to be more patient. I will try to be more patient. I will try to be more patient. I will try to be more patient. I will try to be more patient. I will try to be more patient. I will try to be more patient. I will try to be more patient. I will try to be more patient. I will try to be more patient. I will try to be more patient. I will try to be more patient.

BTW, I just copied and pasted that. I didn't have the patience to write it all out over and over.


Sigh.



Tuesday, February 9, 2010

Oh, mama!

I had a guy come over and fix something in my house today. I was out at a meeting, so my mom (who is visiting) was in charge of letting him in, showing him the "project" and locking the door behind him. No biggie, right? Well, when I got home and asked how it went my mom said, "well it took him about 10 minutes to finish the project and another 45 to debate politics with me before he left." Oh, Mommy!! Apparently, this fix-it man was (gasp!) a republican. My mother is no stranger to debates with those who travel along opposite party lines- and I love that about her. Never afraid to disagree or be in the minority, always willing to stand up and fight for the underdog. I have said it before, and I'll say it again: I got it from my mama.

Monday, February 8, 2010

It's Lemonade!!!

"Sunrise over troubled waters"
-Fiction Family

Alright, so something happened the other day and it took me a day or so to recognize its importance. It was a busy day, as usual.  We had just come home after an hour of OT and a half hour of speech. I think there were about 15 minutes before another play/speech therapist was due at my front door. I was trying to get laundry out of the machine and into the dryer, then repeat the trend with another load or four. I was also trying to clean up the leftover pancakes (GFCF) on the table from breakfast- this was around 3:20pm by the way. My point is: I was busy. Little Bird started asking for demanding apple juice. "I want drink juuuuuuuice." I ran to the fridge, poured a little something into her cup, headed over to the filtered water to fill up the rest of the cup. I deliver the goods and continue with my endless list of chores. Then I hear it: "Oh NO! It's lemonade!" I guess in all the chaos (in my mind) I poured her lemonade instead of apple juice! This seems like an ordinary, boring story. But wait, there's more!!

It later hit me that this was actually a big deal. She expected apple juice, tasted lemonade, and then told me about it. The fact that she now has the tools to tell me what's going on is HUGE. See, a kid who can't express herself is likely to just scream. And I'm talking SCREAM. Then I'd run around guessing what the problem could possibly be: are you ok? did you hurt yourself? did you bite your tongue? tummy ache? are you tired? hungry? This could go on and on all the while with a screaming kid. When really, all that was going on was that I accidentally poured lemonade instead of apple juice. 

So, this post is about progress; seeing progress and having a little gratitude. It doesn't mean that she doesn't scream when she can't find the words and/or cannot express her frustrations, because trust me this kid can scream her freaking socks off. But it does mean that there's progress and that she's gaining tools. And that's a very good thing.
jumping up and down on her basement trampoline

Sunday, February 7, 2010

just trying to stay game

"Oh I keep pushing boulders
I stay game 'til sun'll shake my shoulders
Oh, I keep feeling older
I stay game, stay game, stay game"
-Harlem Shakes

It was just one of those days where I wonder how am I ever gonna take care of her as she gets older? I'm so scared about the future. How can I care for someone with little to no self care skills? I never thought I'd have a five year old who isn't toilet trained. Will I have a seven, twelve, or eighteen year old like that? As I was washing her hair in the bath tonight I thought, how will I do this when she's bigger? I'm only 5'1" and 100 pounds - ok, fine. 102. But still...  My back is already killing me. No clue what's up next...

Hero Next Door

I've told you before about my friend Victoria Strong, her husband Bill, and their little girl Gwendolyn. They're all fighting to raise awareness about SMA (Spinal Muscular Atrophy), and trying to find a cure. We really are so close to a cure for SMA and when we get there, I hope Bill and Victoria will be able to recognize just how much they played a part in such a miracle. They're heros. So, let's honor them as such. You can go to THIS webpage, vote for Victoria as a hero next door. She's got a shot to win $5000 that would go straight to finding a cure for SMA. So go vote NOW. I'll wait here. Go. 
Oh, and when you're done, check out the Strong Family's website at GwendolynStrong.com

Wednesday, February 3, 2010

I'm no expert, BUT...

There's this thing in the news: The Lancet, an prominent British Medical Journal, which in 1998 published a paper showing a connection between vaccines (mostly the MMR) and Autism, has retracted the paper, stating that the study was flawed. In the past 24 hours since this news item was published and made its way around the interwebs, I've been inundated with people asking me what I think. Well, I don't totally know what I think. I mean, let me be clear here: I am NOT an expert on Autism, vaccines, biomedical treatments, etc.  Yes, my child has Autism. No, I don't believe that vaccines caused MY child's Autism, but I do think there needs to be some vaccine reform. I am not comfortable with the American Academy of Pediatrics' current vaccine guidelines. I believe it's too much, too soon. I believe that one size does NOT fit all. I think we, as parents, need to do more, better research into what we put into our kids and when. I don't let my kid drink coffee, coke, or eat cake and cookies for breakfast. I care about what goes into my kid (whose system is already weakened) and I act accordingly.

So, I don't know if vaccines cause Autism. I don't know what does. I think my kid's system is fucked up so I am helping to restore it and heal it. Yes, I use some unconventional means which some people think are crazy. I mean, I've called it voodoo myself. But, I've gotten to this point of unconventional means because the conventional ones haven't been enough (I still do all those things, I have just added other things to the mix as well).

I have found that the people who are most passionate about the "crazy" parents doing this "crazy" shit to heal their kids are those whose kids are not affected by Autism. The ones whose kids have been affected, seem to have been helped by conventional means alone. Baruch Hashem for them. Seriously. They are the very lucky ones. That's not the story for every family. Many families have tried those straight-ahead methods: therapies, early intervention services, etc, but they're not enough for all kids. It hasn't been enough for mine. So, I'm going to do everything I can to help my kiddo. Not just for her, but for me; and not just for me, but for her. I've seen so so so many families whose kids are so affected by Autism and they need more than speech therapy and occupational therapy. Yes, I think some of this biomedical shit is crazy, but it's crazier to let our kids remain sick. Just because one thing doesn't work doesn't mean we're going to throw up our arms and say "oh well." No, we're going to fight like fucking maniacs to help and heal our kids. If you have 'typical' kids and don't 'get it' like I get it, just trust me, you would too.

Anyway, here's the bottom line: I don't know if vaccines cause Autism. I applaud and encourage every researcher seeking the causes and cures for Autism- and you should too.

Okay, here are a couple links to some posts I've written in the past on the above topics. Enjoy.

In The Trenches of Autism
I do voodoo
Green Our Vaccines

If you disagree with me, that's fine. But don't get all crazy balls on me. I'm tired, sensitive, kinda vulnerable, and I've been beaten down by Autism. By the way, I feel like I need to go watch Jersey Shore or something to balance out all this heavy shit. Here I come, Snookie and The Situation!!

Tuesday, February 2, 2010

Bird is the word







"Everybody's heard about the bird. B-B-B-Bird Bird Bird is the word!"

-The Trashmen





There are old home videos of me as a baby with my mommy calling me Birdie. She has called me that my whole life. She still does. It was only natural for me to refer to my own baby as my baby bird. And from day one, that's what I've called her. My little bird. She knows it and she answers to it. Yes, I just bought this necklace.

I love finding cute, fun, whimsical things that remind me of her and the love between a mommy bird and a baby bird. So, I just had to pick up these hand towels for her bathroom. I got them at Target when I stopped in just to get some toilet paper and sippy cups. I also got some melamine bowls with hearts on them for $1.79 apiece. Of course, I just had to have them. That's the power of Target. 



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