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, June 28, 2009

Gift of Life Walk 2009

"Let's take a long walk"
-Jill Scott
Little Bird and I just signed up to participate in the 2009 MOTTEP Life Walk. It's presented by the Gift of Life Minority Organ Tissue Transplant Education Program (that's what MOTTEP stands for). If you read this blog regularly, you know all about sweet little Shay, whom we adore. We are forever grateful to the donor family who decided to give Shay an amazing gift 5 years ago: a new heart. We are eager to build awareness of organ donation and the importance of being registered. A few weeks ago my friend Maggie (shout-out!) told me that after reading a post I wrote about Shay she went ahead and registered to be an organ donor. She was really excited to put that "donor" sticker on her driver's license. I'm pretty proud of mine as well! It's so easy, all you've gotta do is click here to register. If you want to join us on July 25th for the Life Walk at Belle Isle, just click here. We'll be participating on Shay's Team and you can, too!!

Saturday, June 27, 2009

My Sistas!!

A few months ago I was introduced to J, a mom of a little guy who had been where Little Bird is at the bird's age, but now he's out of this space. He's not qualifying for ANY services through the schools. So basically, she's been where I am and has lived to tell. I love these stories and these connections! A couple weeks ago I got an email from someone who knows her and was "referred" to me. Seems she, we'll call her N, has a little boy who has an ASD diagnosis too. She asked, "would I be comf to talk to her?" Dude, of course!!! I told her this is a sisterhood. As a mom of a kid with ASD, I am now a member of an elite group to which I never wanted to belong. But, here I am. So the deal is, there is an instant connection between any two moms who were or are where we are. We are going through something that other moms don't understand. The just DO NOT GET IT. And really, they have no clue how blissful that ignorance is. I thought about this a few nights ago as I read the book The Elephant in the Playroom by Denise Brodey, in which she so elegantly states that she found it "Draining to try to explain my reality to people who weren't living it themselves." I get this. I feel this way all the time. I know that one of the pleasantries of hellos is asking how someone's kids are, but when people without a kid with sp needs asks, I usually just say "thanks for asking." If someone who does have a kiddo with issues asks, I can answer honestly in a language that only we understand. That's right, we have our own language. "Normies" don't speak candidly about their kids being flappy, floppy, stimmy, scripty, prope or vistibular seeking, having dietary infractions, etc. My whole point is that we do NOT need to explain ourselves, our feelings, our issues. It's ALL the same. Even if our situations are different, the feelings are ALL the same. This is a sisterhood. We warrior moms who are fighting our asses off to save our kids and to ensure a better future for our families are sisters. We get each other like no one else can get it. I am grateful for each and every ASD mom out there- whether we've met in person or not; whether we've emailed or not; even if we've just read one another's posts on message boards. You are my sisters and we are in this together.

Thursday, June 25, 2009

"That's a conversation!"

File this one under miracles happening every day. This morning I spoke with our awesome play therapist and I was telling him that I know he sees progress all the time, just like all Little Bird's therapists do, but since I'm so emotionally attached and NOT formally trained in this stuff, little signs of progress are hard for me to see. I need the BIG signs. It's like with someone losing weight- if you're with her every day, you might not notice as much as the person who sees her after 3 months. Make sense? Good. Okay, so I was talking to the play therapist and saying that I feel like Little Bird's been on a plateau for so long and I'm so freaking ready for a BIG leap. That's her pattern, after all: steady progress, plateauuuuuuuuuu, LEAP! Over and over. It's a cycle, which is totally fine as long as she keep leaping.
Well, I almost didn't realize it, but I witnessed a leap today. Little Bird and I had a conversation. For those of you who don't have kids like mine, let me explain that even though Little Bird talks and has for a long time, her speech has almost always been labeling, requesting, trying to get her needs met. Not really conversational. Plus, she can't ask questions. YET. Here's how it went down: We were in the car on our way to her afternoon ABA program...
me: Are you going to play with Angie?
LB: yeah!
me: are you going to pick out a movie?
LB: yeah!
me: which movie?
LB: Backyardigans
me: oh yeah? which one?
me: what do they say?
LB: Huka Pele!!
I told Angie all about it and she goes "that's a conversation!" OMG, I almost didn't realize it!!! Later in the afternoon, I totally got it when this went down:
LB: meow
me: who says meow?
LB: kitty cat
me: what's your cat's name?
LB: Shugie!
me: yep! What color is he?
LB: black and white!!
These little things are not lost on me, they are HUGE. I am grateful and I need every little bit of progress to boost my confidence and keep me fighting, keep me focused on this journey as Little Bird's warrior mom!

Wednesday, June 24, 2009

From Amy's Kitchen to Mine!

I mentioned once before about how I finally found a pizza that Little Bird can eat (dietary restrictions) and that she LOVES: Amy's Kitchen's Gluten-Free, Non-dairy pizza.
Well today I noticed something on my doorstep and immediately wondered, "Did I order something and forget all about it??!!" But nope, look what the very fine folks at Amy's Kitchen sent me:
Man, they're awesome. I've always really liked this company and its commitment to using organic, healthy ingredients in their quick, easy meals. But, now really love them! We will be very loyal to them as long as they keep making these fabulous products that are delicious and easy while fulfilling our requirements of being healthy and sensitive to our dietary needs.
Thanks, Amy!!!

Sunday, June 14, 2009

from out of nowhere

"it can come from out of nowhere
hit you when you're safe and warm
take it easy, my star
your time is gonna come
your time is gonna come"
-Art Alexakis
Crisis. Tragedy. Turmoil. Out of nowhere. I think that's pretty much how it happens. I went out with my pregnant friend M the other night. She cringed, counting the number of cigarettes one woman in the restaurant smoked (yes, Californians, you can still smoke indoors here in Michigan. I know, right?!); she won't eat cool whip because there are too many chemicals; won't eat anything unpasteurized, etc.
I was totally the same way. I mean, I cut out coffee, artificial sweeteners, no soft cheeses, nothing undercooked at all. Still: Autism. It can come from out of nowhere. I have seen babies born addicted to crack cocaine turn out ok. I have seen pregnant girls eat raw fish, have a few cocktails, smoke a cigarette, their babies have been fine. I nursed my baby for a year and a half. I did all the right things. Still: Autism. It can come from out of nowhere. I still get angry when I think about it. Anger often masks sadness and fear. I've got those. I work harder than any other mom I know. Certainly harder than those who have no idea how easy they've got it. I often feel overworked and underpaid. Trying to keep it up, to keep on keepin' on. Trying to take it easy, and trust that my time is gonna come. My time is gonna come.

Saturday, June 13, 2009

a little perspective

"You worry about the wrong things, the wrong things."
-Kanye West
I know that I'm sensitive and that other people have NO idea what it's like to have a kid with special needs. On the flip side, I also know that I have NO idea what it's like to have a "typical" kid. So, I try to cut others a little slack. Even the friend who, two years ago, on my birthday, had her kid sing happy birthday to me in english, spanish, and hebrew- at the time all I wanted was to hear my kid's voice AT ALL! Did I mention that my kid's older than hers? But I digress.... A few days ago I was at the library with Little Bird. There were a few other moms around with their kids, too. I couldn't help but overhear their ridiculous conversation. Apparently one mom was very upset because she didn't get the date she wanted for kid's Bat Mitzvah in ........wait for it..... 2013. She was really all worked up about it. I giggled to myself because I will never be angry about something like that. I will no longer sweat something so trivial. Having a kid with special needs immediately shifts all your priorities and perspectives. Hmmm, could this be yet another gift of Autism??? ***A little disclaimer: I know that there are some people out there who read this blog but don't know me and that probably means I don't know you. Or maybe you know who I am, but don't really know me. After all, how many moms are there in this little town with Pink stripes in her hair?? Again, digression... ok, so back to the disclaimer: if YOU were one of the moms in the library that day, just know that I mean NO offense to you. Rather, this is about ME. People say it's all relative, that worries are worries. But does that mean that this woman will lie awake at night worrying about her daughter's bat mitzvah date the same way that I lie awake and worry about my daughter living with me forever, or in a group home? If so, I don't envy her worries, but I do envy her "problems".

One year gone

"Those who are dead are not dead
they're just living in my head"
You never know who is gonna change your life.
I was just 14 years old when I walked into this unassuming building in West LA on Wilshire and Bundy. Gene Brody was 63 and an educational psychologist. I was a trouble maker and couldn't stay in a school for longer than 2 years before I'd wear out my welcome. Gene and I instantly clicked. He became a great friend and eventually a mentor. He was so passionate about politics and since that fire had already been lit in me, he was happy to kindle it. He was so proud when in 1996 I was able to vote and I'm sure he was even more proud that I voted for Clinton. We always stayed connected, no matter what was going on in our lives. I was getting married, he was retiring. I was having a baby, he was having surgeries. Fourty-eight years is a big age difference! Whenever I'd call his house, I knew I had to set aside enough time to talk to Gene, then his wife Phyllis, then Gene again. He always grabbed the phone from her and said "I'm not done with Dani yet." He was always very proud of the fact that I'd started out as a troubled kid, but kinda came around and turned out to be a really good person... if I do say so myself! It was LA, and Gene had some high-profile students. We always teased that I was his only student who was NOT in the tabloids.
When I was pregnant with Little Bird, I just knew it was going to be a boy. I just knew it! I chose to name her after Gene. Gene was beyond touched when I told him. He was so thrilled. He sent her a "first words" book and wrote her a little note inside of it. So sweet.
Gene had been sick for a while. He began a pattern of hospital visits, convalescent home stays, and then another illness. Truth is, Gene was supposed to be using his walker and refused, so he'd fall. I know because Phyllis would complain to me all about it :)
During one of his hospital visits, we traveled out to California and I brought Little Bird to meet her namesake. Of course, at 2 she had no clue how special this was, but Gene didn't stop talking about it until the day he died. He was thrilled to see her, fell in love with her, and always kept a picture of her by him.
Gene had a grandson with Autism and was so concerned about Little Bird and her development. Of course, he was really concerned about me, too. On Sunday June 8, 2008 he called from the hospital to check in and it was a great day. We were feeling really good about Little Bird and her progress. Gene was so relieved and felt like I was in a really good place. I'm so grateful for that because that was the last time we spoke. We never hung up without saying I love you and that last call was no different. Friday morning June 13th 2008, Phyllis called me in tears and all she could get out was "Gene is gone. He just couldn't fight anymore."
I'm forever grateful for the difference he made in my life and for the difference I was able to make in his. You really never know who is going to come into your life and make a permanent change.
Gene's obituary put it best when it read that "Gene and the twinkle in his eye, will be profoundly missed."

Thursday, June 11, 2009

School's Out!

"School's out for summer
school's out for ever!"
-Alice Cooper
This is a picture of Little Bird and Ms Geer on the first day of school this year.
Today was the last day of school.
After a very long debate process, we have decided to take Little Bird out of the public schools and the ECSE (early childhood special education) classes. Next year she will go to the JCC preschool. It's a typical preschool with typical kids and one kid with special needs per class. That would be my Little Bird! She'll have a shadow to help her along every step of the way. This is a big step in attempting to ready the bird for mainstreaming. I'm not 100% comfident that it's the right move, but I've gotta give it a try. I think she really does have the potential to pick up on some appropriate social and language skills from these typical kids. So, we've gotta give it a go. Of course my dream is for her to one day be able to fit in to a typical class and thrive in that setting, so I'd prefer to begin that process now (if it works!). So, for that reason, today is a milestone. Little Bird's been at this school in the Early Intervention program since she was 8 months old!! That's 4 school years! I had to capture the moment of her walking in and out for the last time. Well, until kindergarden!!
There she goes...
"All done!"
We will definitely miss her teachers Mrs. Adam and Ms. Geer. They are totally awesome!!
I really can't say enough about the people who work with kids with special needs. There is a level of patience that is unparalleled. I am forever grateful.

Say cheese!

"Could you take my picture?"
I was working one afternoon and Greg took Little Bird to the park. He took the camera with him so he could snap a few photos and videos. Here is an example of Greg's camera work.
Now is a good time to mention how much I love, adore, honor, and respect my husband.... just not his videography skills :)

Tuesday, June 9, 2009

Relay for life

"Round and round
Around we go"
A few weeks ago, I told you about my very good friend Lori's efforts to raise awareness and money for the American Cancer Society through the Relay For Life event
This past weekend, we participated in the event which was amazing. Here are some photos...
Melissa, Lori, and I walking the track 
Lori raise more than $10,000!!!
I posted last week about my friend Tami and the Race for the Cure we did together.
Here's a great photo of Tami, her husband Gary, and the luminary bag they made to honor Tami's dad Sam Rosens who lost his own battle with cancer this past January.
The whole luminary thing is unbelievable. People decorate paper bags with the names of those they'd like to honor, and in support of those fighting cancer. At nightfall, candles are placed in the bags and they light up the track. We all walk around the track as the bags light the way. It's really an amazing experience.
This year I chose to honor the mothers of two of my good friends. Here are their bags.
These are a bunch of Lori's bags...
I'm so grateful to have been a part of this event again. I'll do it again next year. And probably the year after that, too.

Close Shave

"Oh, this mess I have made"
-Ben Folds
Sometimes in Little Bird's occupational therapy, she'll play with shaving cream to give her some of the input she seeks through her tactile system. She loves the squishy, slimey feel and can play with it for hours!
Yesterday she was playing with her Occupational Therapist, Jessica and got the shaving cream all over herself. I'm not the kind of mommy who minds messes, so I'm ok with all that. As Jess took Little Bird to the sink for some clean-up, I heard her say "noooo!" as Little Bird tried to get a little shaving cream on Jessica's face. After having worked with LB for a year and a half, Jess should know that when you tell Little Bird NO, she'll likely try again with more force!! I tried so hard not to laugh when Jessica ended up covered in shaving cream, but it was WAY too hard. Just look how much fun these girls are having together!! It's a good thing Jess loves her job so much :)

Monday, June 8, 2009

pizza party!

"Why'd you have to wait
To find me, to find me?"
-The Fray
Ladies and gentlemen.... I believe I've found it: THE HOLY GRAIL !!!!
That's right, it's a GF/CF pizza that is actually GOOD!!!!
Most frozen pizzas are either GF or CF, but rarely both. First Amy's came out with a GF/CF spinach pizza. However, that didn't go over very well with my 4 year old kiddo!
Thank the good, sweet lord for a good frozen pizza that is both gluten free and casein free AND something that Little Bird likes!!!!

Friday, June 5, 2009

kick, push, coast

We paid a visit to one of Greg's stores and Little Bird ran right over to the skateboards, grabbed a helmet and put it on her Daddy. She was so excited to hop on the skateboard. My poor little motor-planning-challenged kiddo couldn't balance without a hand on Greg's shoulder, but she loved being on the board. My little skater chick!!
She's gonna look so cute all suited up in pads and a helmet!
It's really important for kids who are a little different to do whatever they can to blend in. I once read a book called Overcoming Autism by Lynn Kern Koegel and Claire Lazebnik. They make a great point in this book that it's so important to get some of the cool toys and gadgets so these kids can be "cool." Too often these kids are bullied and teased for being so different. A friend of mine who has a 10 year old kid on the spectrum has him in skateboarding classes. So cool! Anything to help them blend in a bit- but just a bit, because one thing I don't want is for Little Bird to be just like the rest of 'em. We'll settle for quirky, unique and one of a kind :)

Thursday, June 4, 2009

Stop and smell the flowers

"You're my little flower,
flower, flower"
-David Garza
Every year my mom comes out to Michigan on a mission: to plant flowers in my yard. She loves it and when I get compliments from my neighbors and visitors, I get to brag about my mom and her love of all things that grow in the ground.
This morning she was out there digging and planting and picking our worms for Little Bird to look at. Then she showed LB a magic trick: if you accidently slice one worm in half, you get TWO worms!!!

Wednesday, June 3, 2009

Goin' for a ride

"The best thing you've ever done for me
Is to help me take my life less seriously
Because its only life after all, yeah!"
-Indigo Girls
I rode the ferris wheel last weekend. Seven years ago we went to the very same fair and I wouldn't go on. Greg had to go with someone else. This year we walked past it and he asked "wanna go on?"  I looked at him, smiled, and said "sure! Let's go!" 
As we reached the top he checked on me, "You ok? You scared?" Without missing a beat I answered, "I'm not afraid of a ferris wheel, or heights, or any of that. I'm afraid of Autism for the rest of my life."
So you can look at this two ways. Yes, it's sad. Autism sucks. Any time anything is "wrong" with your baby, it sucks- and you don't know until you know. I spent my morning venting to a dear friend, then spent the afternoon handing over $140/hour to cry about the same stuff to a pro. Some days are better than others, you know?! But the the other way to see this is that I have gained a new perspective in life. Fears about things that aren't real or aren't really happening don't dominate my mind much anymore. I guess it's about not renting out space in my brain to things (or people) that just don't matter. If nothing else, Autism has given me an amazing ability to prioritize. Like, really prioritize and let go of the little shit. Once I am able to do that, I can see just how much little shit there is. Now I'm able to keep my focus and some days I can find myself enjoying the ride... even the ferris wheel ride.
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See, it's not just my mom! (since Jan 1, 2010)