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.

Wednesday, March 31, 2010

Pesach memories


Little Bird made this in school. It's an afikomen, but she calls it the Matzah Man. Afikomen is a piece of matzah that we break off during the seder (our passover meal) and set aside to be eaten later for dessert. Don't worry, it's pretty symbolic and we eat real desserts, too. In many families, like mine, the head of the household hides the piece of afikomen and the kids try to find it for a prize of candy or money. In my house it was money. My brother and I got silver dollars no matter who found the afikomen. Not sure what we ever did with our silver dollars, but it's a fun memory. Actually, it's more than that. A few years ago it dawned on me that my dad actually had to plan ahead, go somewhere to get the silver dollars (a bank, right? where else do you buy silver dollars?) and keep those silver dollars in his pocket through the whole seder until it was time to reward us with them. That's a lot of trouble to go to just to keep up a little family tradition. I'm fairly certain this was something that went on his own family when he was a kid. Love it! 

Monday, March 29, 2010

Happy Passover

A few days ago a package arrived on our doorstep and oddly enough, it wasn't from my mom. This one was from our friend Mushky and it was addressed to Little Bird. She was so excited!
It was a big box of Passover fun!
She got the Ten Plagues finger puppets

But wait... there's more:

She also got a bag of Passover Frogs and Ten Plague Masks


But her favorite thing is definitely this Matzah Ball!!


Chag Sameach and a Happy, Kosher Passover to all those who celebrate!

Here's the seder plate the bird made at school:


Next year in Jerusalem!!!

Sweater, reincarnated

"If you want to destroy my sweater
(whoa whoa whoa)
pull this thread as I walk away"
-Weezer

Once upon a time there was a sweater. It was pink. It was pretty cute. Then it stopped fitting me. I'm going with the theory that I must have shrunk it. For some reason, I kept it in my closet, which is strange for me because I have clutterphobia (fear of clutter). I literally give and throw everything away. I hate stuff. The Vietnam Vets are on my speed dial (hey, they pick it up!). Still, this sweater sat in my closet. Just awaiting the day it would reach its full potential. Well, my friends, that day has arrived.


I found a website called Reknit. The concept is clear (in their own words):
  1. you send an old sweater to my mom
  2. she unravels and reknits it into something new
  3. a brand-new, handmade, one of a kind item is sent back to you
I love this concept!!

So, just as that ugly ducking turned into a swan, my sweater has now become ....

A hat!!

and it's a pretty cute hat, too!



...And they all lived happily ever after.

Sunday, March 28, 2010

Somethin' in the air

"Something's in the air tonight"
-Matt Kearny

It's so good to know I'm not alone...

Heather just wrote a post called There IS Something in the Air.

Also, is it completely twisted that I'm thrilled to see my bird coughing and sneezing? I'm still pretty desperate to find an excuse for her little bump in the road. I don't want to call it a regression, because I do know that it's temporary and it's not necessarily going backward as the word regression would imply. I know she'll be back, and I'll be here awaiting her arrival.

Friday, March 26, 2010

*This Moment*

Okay, here's the deal... Last week my friend Lady Ren posted "this moment". It's a concept that Soule Mama seems to have started and I think it's fabulous. Here's the idea in Soule Mama's words:


{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember.

So, I'm in. I'm totally gonna participate in this game. So, here we go...



**if you wanna post your own moment, put a link in my comments. SouleMama likes to see the links in hers' too!**

Thursday, March 25, 2010

Going Viral

Took her to the pediatrician today, praying for an ear infection, strep throat, anything to explain the weird, stimmy, scripty, hyper, fussy behavior. The doctor in the practice that we like best (shout out to JC!) wasn't there, so we saw a doc we haven't seen since last summer. First of all, no ear infection, no strep, but he did confirm one of my hopes: a little virus. Last week the bird broke out in hives and then the next day she had massive diarrhea. Funny story, she had massive diarrhea (in her pants) and as I walked her to the bathroom,  with every step, more and more came out of the bottom of her pants. There was a trail on the way to the bathroom. It was awesome. Anyway, looks like it was a little virus that's still hanging on. I'm really, really, really hoping I can blame all the crazy behavior and "turbulence" (thanks Penny!) on a little virus.

Whatever. My most compelling reason to post something tonight is that this particular doctor (who we haven't seen in 9 months), was pretty impressed with the bird. He said this was "the most interactive he'd ever seen her." Hmmm... and this was NOT a good day, she was super duper stimmy in that office, and just plain old 'off'.  I felt better for the rest of the day. Still going on the assumption that this is temporary and she'll be "back" soon. Real soon. (please please please please please please please please!!!!)

Hanging

Today I'm feeling like that little kitty cat on those old motivational posters.
 Trying so hard to hang in there, and looking SO cute while doing it.


Penny's use of the word turbulent in the comments of my last post was perfect. It really did put something into perspective. When I think of turbulence I think of airplanes. I hate flying. I know it's because I'm not in control. Just like I'm not in control here. But, when I am on a plane and the turbulence hits, I know it will pass... eventually. I know things will get smooth again. The bumpiness probably lasts a very short amount of time, but really, it feels like forever. 

I'm having a really rough time right now because Little Bird is WAY out of whack. Her brain is working so fast and she can't seem to slow it down: "hi mommy, i love you mommy, dazzleberry lemonade, the pitcher was empty now its full mommy, elmo's mommy takes him to school, lets go library, lets go bookstore, we went to the bookstore, i want drink juice, can I have juice please?" Yes, all that is in one breath. It's hard to keep up. Her sensory system is so completely disregulated. She's not sleeping well, not eating well, there's so much flapping, and she's suddenly (last 3 weeks) plugging her ears. No, it's not an ear infection. I've checked. Twice. She's throwing tantrums and it's harder and harder to get her "back". 

This is rough. It's probably especially rough because we had a few amazing weeks. We were up, now we're down. I guess that you've gotta ride the lows so you can really appreciate the highs, right? Or gotta have the rain before you see the rainbow? Great, now I really DO sound like a motivational poster. 

Wednesday, March 24, 2010

Reality Bites. And Sucks.

I had one of those "flashes of reality" moments today. She's five years old and this is really, really, really hard. What's it gonna be like when she's eight, seventeen, twenty three? I'm thinking it will be harder. One of the things that gets me through these days is the thought that this cold be temporary and will possibly pass. But, I know it's not really gonna pass. I mean, of course the little things will pass: she'll probably talk more, gain some self-help skills like dressing herself, using the toilet herself, etc but the big stuff isn't going away. I'd be a fool to think it is. This is possibly (likely?) it. Reality sucks. Or is it Reality Bites. You know what? It's both.  Denial, could you please come back now? Quick, someone remind me of a story of a kid you know who has made tremendous amounts of progress and/or is mainstreamed, lives on his/her own, etc. Someone give me a big, tall glass of hope because this lump in my throat is getting hard to swallow today.

Where the F are those windmills and tulips in "Holland" anyway? 

Monday, March 22, 2010

Mommy's Little Skater Chick


"Heaven is a half-pipe"
-OPM

It's finally springtime here, so last week I took Little Bird to the park around the corner from our house. She and her friend, Jolie played on the big play structure and then made their way over to the skate park. LB was mesmerized. She loved watching the skateboarders.

She wanted in that cage so badly, she told me, "mommy, I need scissors" (presumably to cut through the fence). Super cute. I got home and asked my husband to get her a little skateboard ASAP. He did. {Full disclosure: there happened to be one laying around his office}
Even if she never really uses the skateboard, she still looks totally awesome with it. 

Sometimes it's hard not to give in to her  overindulge her  buy her things that might help her along (yeah, that's it). She honestly has the most amazing basement in town and I can totally justify every piece of awesomeness...

Six foot trampoline: helps to provide proprioceptive input
Cuddle swing attached to the ceiling: vestibular input
Drum set: sound/sensory stimulation and coordination
Tunnel: motor planning
Fifty inch plasma up on the wall: well, that's Greg's and I simply cannot justify that one except to say that some boys are kinda dumb.

The thing is, we've been at this since day one (okay, since day 183). Everything we have seems to serve a purpose toward helping her along in one way or another. I am reminded once again of the amazing book called Overcoming Autism by Lynn Kern Koegel, in which she states that's it's okay to give in to overindulge buy our kids with special needs things that might help them get along and be accepted socially. Look, I didn't make the rules, but it's totally true that the kids with the cute clothes, newest gadgets, etc have a better chance of being accepted and included. I remember running into a friend last summer at this same skate park. She was there watching her 10 year old son with Autism receive a skateboarding lesson. How "cool" is that?! It seemed brilliant to me. I do NOT want to think about the bullies, or about the kids who won't play with Little Bird because she's different... or the moms and kids who have left us behind (I know some of them are reading this and yes, if you think I might be talking about you, I probably am). Instead, I choose to think about the Jackies, Jaimes, and the Elisas of the world (there are others, too) who have neuro-typical kids and have come into our lives knowing we're a little bit different, but still ask us for play dates. The world is changing. They way people look at kids with special needs is changing. Some of the "leavers" (I'm pretty sure I just made up that word) might soon be the ones getting left behind (and not in a kirk cameron kind of way).



Wednesday, March 17, 2010

Ding!

Reason #4080 that I'm so happy to be getting my car back today after 3 weeks of it being in the shop following a pretty icky car crash: I don't think Little Bird can reach the door handle from her seat in my car.

I've been driving Greg's car. It's a lot smaller than mine. Little Bird "fits" in it differently. I learned this the hard way. There we were pulling out of a strip mall parking lot (I live in the suburban midwest, so yes, this strip mall had a Bed, Bath and Beyond, a Michaels, an Old Navy, a Marshalls, and a Borders) and making a left turn into traffic. Midway through the turn, I hear a little "ding!" indicating that a door was either not closed all the way, slightly ajar, or opened completely by the five year old in the back seat. You guess which one it was in my case. Yep! Awsome. If you've spent any time reading this blog, you know I'm pretty cool under pressure. Pulled into the middle turn lane, threw the car in park, hit the hazards and climbed over the seat to slam the door shut. It wasn't until we were safely back on the road that I very calmly (yeah right) shouted, "DO NOT TOUCH THE DOOR!!"

I can't WAIT to get my car back...

Tuesday, March 16, 2010

Don't Passover these treats!

Passover falls on March 29th - April 6th this year. I guess that means that it's coming up soon. This is great for two reasons: 1) the Jews are no longer slaves in Egypt, and 2) there are many dairy free options coming to a store near you!! See, many Jewish people honor the Passover holiday by clearing out their homes of chametz, or any product made from wheat, rye, spelt, oats, barley that's been in contact with water for more than 18 minutes. Basically, nothing that is leavened. That means there are loads of things in the grocery stores that are gluten free!!! Also, if observant Jews keep kosher and do not mix meat products with milk products, then if they want a meat meal, they'd better have a dairy free dessert.
Seems like a lot of information just to tell you that I'm so excited that these cakes are back on my grocery store's shelves!!

This company, Osem, makes pretty good gluten-free, dairy-free cakes this time of year for Passover. I stocked up last year, but they were gone before I knew it. These are great treats and they seem to last a really long time. The "best before" date is November 2010. If you've got a GFCF kiddo, you might want to head to your local big grocery store to see if these are available. Just don't hit up my local store- I'm gonna clean 'em out!

If you want to read more about Passover, click here for an explanation geared towards kids. It's way more my speed!

Monday, March 15, 2010

Leftovers

"It's such a gorgeous sight to see you eat in the middle of the night"
-The Cure



Alright look, I'll admit it. I am not a good cook. I blame the circumstances of my upbringing (that's all imma say 'bout that). I've learned to make a few things here and there. Greg has told me he thinks I'm part Italian since for a while there, everything I made had pasta, tomato sauce, and ricotta cheese- mixed together in various ways. I've branched out a bit since then. Anyway, it turns out he's an excellent cook. For reals! He can cook anything a lot better than most.

Since he doesn't make it home til after Little Bird and I have already eaten, I do the cooking most weeknights. But Sundays? Sundays are
his night, with enough left overs for Monday night. Well, last night was no exception. Roasted chicken with veggies and garlicky rice. SFG (so fucking good!). I cleaned my plate so quickly and announced I was going back for more before I'd completely swallowed. Later in the evening, I told him how delish it was and he said, "That makes me so happy. I love when you love to eat my cooking." and that's when it hit me. Damn, I'm lucky. I mean, someone loves me enough to love when I'm happy eating something. Obv I've had this "I'm lucky" thought over the last 13 years with this guy, so this was just Sunday night's "I'm so lucky" moment. Great Sunday night. And Monday's gonna be pretty great too. How do I know? Because I have leftovers!!!

Friday, March 12, 2010

Dreamin' Big

"I'm working on a dream
And our love will make it real someday"
-Bruce Springsteen

I read other special needs mom blogs. A lot. This morning I read an awesome post. I'm talking ridiculously amazing. So, I'm sharing it with you all here today. Please take a moment to read it and enjoy it. I know you will. It's just that good.

Thursday, March 11, 2010

Lady of The Arts

My life has been touched by some pretty amazing women. Like anyone else, I've had good friends come and go (some even went right around the time Little Bird started struggling.... hmmm), but there are some very special ones that are there no matter what. The kind you could not be in touch with for months, and then suddenly you're back in touch and everything is exactly as you left it; the kind you could call on a moment's notice and say "I'm coming into town and need a place to stay"; the kind who will always be there for you no matter how many miles or time zones separate you. I'm a lucky girl. I've got a few of those kinds of friends. One of them is Lady Ren. She's a Lady of The Arts and writes about it. She just put up this post that I just have to share with you. You'll see why this post is particularly interesting to me. Have a look...


shaving cream

My bird is a sensory seeker. She loves feeling things and really getting the sensation of feelings things. She craves that input. Today she played with some shaving cream. I put down one of those plastic mats that we used to "catch" foods that were thrown off of her high chair, then I grabbed a puzzle and sprayed shaving cream all over her hands and the puzzle. Then, I let her go to work. Because the feelings are so intense for her, she tends to lose language when she's engaging in something tactile. That's okay for now. I want her to get the input she needs now, so she can focus better later. 


Wednesday, March 10, 2010

The Mad World of Autism

-Tears for Fears (but obv I like Gary Jules' cover better)***


The Autism world is a Mad World. A mad, mad, mad, mad world. One of the most maddening things about Autism, developmental delay, whatever you wanna call it, is that you never know what you're gonna get. Just like my friend Susan always says, "gimme two days that are the same." You know that Forrest Gump quote, "life is like a box of chocolates, you never know what you're gonna get"?? Well, a kid with ASD is like a box of chocolates, too. Because yesterday was an awful day. Awful. Today? Fabulous. I'm talking a-may-zing. My bird has had no accidents (day's not over, I know), and she had the most wonderful session with her play tutor: initiating, following through, keeping engagement, and really playing. This morning she was at school when the director of special needs was giving a tour to an interested parent. They passed Little Bird's class walking to gym, and the director pointed out the kid with special needs in the class (LB), who was walking along and holding hands with her BFF, looking like any other kid. And right at that moment, as the mom looked over at the bird, LB wrapped her arms around her friend for a big hug. I think she was probably sold on the inclusion program right then and there. I think Little Bird should get a commission, no?
I remember that process. The feeling that my kid should be included with typical kids, to learn and grow along with them and from them; the fears that (s)he'll look, behave, learn differently and not fit in; the 'is this the right thing', 'what if it doesn't work out', 'there's no way my kid could do this... or is there' questions. I felt all those feelings a year ago right now when I first considered enrolling her in the inclusion program. When you're IN IT, it's just so hard to see any progress. But when I look back at that process we endured a year ago, and where she is now at school, it's pretty awesome.


***Do yourself a favor and click on the link in the lyrics. Great video.


Tuesday, March 9, 2010

My beloved monster

"My beloved monster and me
We go everywhere together
Wearing a raincoat that has four sleeves
Gets us through all kinds of weather.
She will always be the only thing 
That comes between me and the awful sting
That comes from living in a world that's so damn... mean"
-Eels

My beloved monster loves me. She really does. We are so completely bonded (and enmeshed- against my better judgment) that she really strives to please me. She does not like when I'm not pleased, and she is always seeking social interaction and a social connection with me. That means that I've had to stop getting "mad" with her. I simply just shut down my interaction. No eye contact, no speech, nothing. Funny, but she will actually grab my face in her hands and try to engage and connect with me. 

"oh man, she's right behind me, isn't she??"




I'm dropping a bunch of supplements today. Little Bird is reacting to something. Cutting everything out except the probiotics and the fish oil. Her system needs a bit of a break. She's just been so nuts. You can't tell from these pictures we took today, but it was a terrible day. For her. For me. For us. 
Just a head's up: when you send me encouraging messages and/or leave me encouraging comments, it means a lot to me and makes me feel good. It gives me a little bit of fuel to keep on keepin' on. Yes, I'm talkin' to YOU. The emails I got today from Kelli, Jackie, and Jaime meant a lot. I am grateful to have some pretty cool chicks in my life.

PS: After the day I've had today, I could kick myself for complaining about 2 little "accidents" yesterday.

"But you don't look disabled"

Connections

"There's only four seasons and this one's almost gone"
-Joe Purdy

Seems like Winter's coming to a close. I know it isn't officially Spring until March 21st, but the snow is melting and swings are just asking for a push. So, we headed over to the park yesterday. I often curse my camera for being just a nanosecond too late, but somehow I caught this shot just in time...


Even though Little Bird has been so stimmy and scripty lately, she's also very connected and very engaged. Maybe that's why I'm getting better pictures of her lately. We're all having no trouble engaging her, but keeping her is a bit harder. If you're a member of our world, you might understand that she opens circles all the time, but she's gone and on to the next thing before I even get a chance to close them. It's like her brain is working too fast! Gotta find a way to slow it all down, help her organize it all. I think I'll figure that out tomorrow...

Monday, March 8, 2010

No Gluten!

Saw this car today. Cute license plate. Do you know this person?

A Journey into the World of Autism... in pictures


What an amazing example of beautiful photojournalism...

Sunday, March 7, 2010

Die, die-off, die!

"See the luck I've had
can make a good man turn bad.
So please please please
let me get what I want.
Lord knows it would be the first time."
-The Smiths

I look good today. Clean, curled hair. Make-up hiding stress-induced acne. Pretty cashmere sweater. Drop earrings that my Auntie Madelyn gave me a few years ago (still love them!). Plus, I look thin today- always a plus. I just wish that my insides would match my outsides. I'm miserable today. My kid is making me crazy. She's so whacked out. Super stimmy (flap, flap, spin, head shaking), very scripty. Incredibly flitty, totally disregulated, and way too hyper. Also, she's already had two accidents today. Wait, do we still call them accidents if she's not technically toilet trained? I mean, she averages 1 pee-in-the-pants a day (sometimes none, sometimes twice); she often tells me when it's time to go and she's just started to be able to go in the bathroom on her own. Still, she's peed twice already. Thank g-d for the SpotBot carpet cleaner. Needless to say, I'm having a rough day.

It's just occurred to me that with the increase in her probiotics (ther-biotic complete), she's probably having some die-off symptoms. I've given her Epsom Salt baths every day for the past 2 weeks (especially since she was just on a round of flagyl), to try to keep all die-off symptoms at bay. I'm trying. I'm trying so hard to make this easier on all of us. I'm not having any luck. This is a really hard day.

I'm looking forward to tomorrow night when my husband will come home after being gone for 2 weeks. It's hard. It's even harder to do on my own. And I feel really, really, really on my own. And with that, I'm off to a big carnival/fundraiser with the Bird to raise $$$ for her inclusion program. Initiate fake, happy, enthusiastic smile. And away we go...

Thursday, March 4, 2010

Child of Nature

"I'm just a child of nature,
I don't need much to set me free.
I'm just a child of nature,
I'm one of nature's children."
-The Beatles

Little Bird's bedroom is decorated in a pretty simple nature theme. Trees, owls, flowers, and obviously, BIRDS! 
These are her sheets


This is the wise old owl that watches over her bed (the B could stand for Bird!)

I was wandering the aisles of Target last weekend and I came upon these cute decals which fit her room so perfectly!

I dropped her off at school this morning and I got to work!





These little guys are so cute!!

Lent

Reason #4080 I am happy to be a Jew:
I haven't had to give up a single thing for Lent.

Wednesday, March 3, 2010

An Open Letter to Autism

"Don't let it take the fight outta you"
-Ben Harper
Dear Autism,


That's All.
-Dani G

Really rough day. Whine whine whine. Stimming on scripts. Whine whine whine. It's been 6 days since we finished the last round of flagyl. It occurred to me about 90 minutes ago that she's probably dumping bacteria. Shortly after, she literally started dumping bacteria. 
Just added an extra dose of probiotics (good bacteria)- that's up to 200+billion if you're counting; and hoping that we can keep the bad bacteria at bay for a while. 

Tuesday, March 2, 2010

Temple Grandin: Autism is a gift, not a disability

My very wonderful friend of almost 20 years, Dina, sent me this link earlier today. It's a great video of Temple Grandin giving an interview on why she believes Autism is a gift, not a disability. If you have a few minutes, you've gotta see this. First you need to sit through a 15 second commercial. You can do it. 




Read the accompanying article HERE.

Want more info on Temple Grandin? CLICK HERE for a little wiki-knowledge!
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See, it's not just my mom! (since Jan 1, 2010)