My so called bloggy life

"Our struggle still feels wonderful tonight"

-The Hold Steady

Okay, so the struggle doesn't feel so wonderful, but it is ours. You really need to live this life to get it. I do have nice support and love from my family and some friends, but the most amazing support has come from the people who are living this life, too. There are so many of us out there. You can be in a large crowd, not know anyone and somehow bump into someone whose kid has special needs and you're immediately bonded. Sisters.

I have sisters who are walking through this with me in real life: Melissa, Susan, Jen, Arlene (there are others). We've met sitting in therapy centers, waiting rooms, etc. But there are others, too. Others I've never met in for reals. They're my sisters, too. This is where I go when I need support, empathy, understanding and compassion. Humor, too. A lot of humor. We'd be pretty effed without our humor.

Loads of people sell ad space on their blogs or review products or do giveaway contests. I think there's absolutely nothing wrong with that- especially as therapy costs add up! I've been approached to do this, but that's not what this is about for me (for now, anyway). This whole blog thing started out as a way to showcase our life in Michigan for my friends and family out in California (look! here we are in the snow!). It kind of morphed into this whole Autism thing because, after all, that is our life. Then something happened: I started meeting other moms online with similar situations. And there's that instant bond. That's what this blog is about for me. It's a fun way for me to tell you what's happening in my life (with and without Autism); a way to share funny anecdotes; a way to help inform others who aren't so familiar with Autism; it's a plea for support. Thanks for being there. And thanks for not being creepy.

The two most powerful words ever spoken are "me too". There's so much comfort in knowing I'm not alone. I've made some pretty great connections over these interwebs. Without a doubt, Lynn is one of my favorite "special" moms. I am so glad I got to meet her in person last weekend. She already wrote about it (she's quick) and she's way funnier than I am. There's no pretense: we know each other. We are bonded by something that is bigger than we ever expected. Plus, it's fun to laugh about some of the quirks we deal with and the abbreviations we live by: ASD, LRE, OAT, GFCF, etc.  It's beyond comforting to know that there are people who totally get it just an email (or a 4.5 hour drive) away. So, thank you to all of you "special" moms with just a little bit more on your plates. Thanks for the support and keep it up, ladies. I need it!!

This picture is Lynn's but I had to use it because I'm standing sideways in the one on my camera

This is me with Lauren, whom I will be stealing from Lynn to come live with my family and work with my bird. Don't tell Lynn.

Alright, now go read Lynn's post. It's a good one!!

*This Moment*

{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. -SouleMama

Another day, another doctor

Raise your hand if you had a rectal exam today

Sucks, huh? Well, I took the bird to see yet another pediatric G.I. doc this morning. Actually, after reading my posts about the last doc we saw, my friend Fawn suggested that I see this guy (thanks fawn!). Then, I remembered my other friend Hayley say she'd taken her kid there, too. Well, this guy is the head of the G.I. dept at Childrens Hospital of Michigan, so hopefully he knows what he's doing. He was very nice and is definitely onboard with the idea that the gut can affect the brain. Hallelujah! He said he sees a lot of kids with Autism and that shows me that he's heard from a lot of crazy warrior moms like me. Still, he did say that he's impressed with what I've done and my knowledge of the gut and her issue. It's nice to hear and I hope that means he'll take me more seriously than the last guy who suggested we just use laxatives every day "indefinitely".

First order of business: after this round of flagyl (yes, we're on day 8 of flagyl and I love this drug!!) we'll take her off the probiotics (because that's technically a bacteria) and then do a retest of bacteria levels in the gut. If he finds that there are real bacterium in there, he'd suggest we treat more aggressively with the flagyl, more often. He also wants to have us work with a nutritionist to be sure she's getting her needs met. Sounds good to me. 

Back to the rectal exam... my daughter is a champ. She kicked and screamed and fought the shizz out of that doctor as soon as she saw that finger coming near her tushie. That's my girl! And when it was all over (which was really in a matter of seconds), she demanded to play with my iPhone. And she got it. 

Social Stories

My friend, Arlene, just sent me a link to a great site for personalized social stories. Those of us with kids with special needs know all about social stories. We tell them, write them, etc to help ease our kids into a transition or something that might bring on some anxiety. It helps to set up some realistic expectation and alleviate fears. But, this is the kind of thing that people with normal, boring kids can do as well. Yes, I had to slip that in there.

I always see people asking for suggestions for how to prepare their kids for the dentist, or a vacation, or transition to a new school, etc. Social stories are a great tool. This website helps you to create a personalized story about your kid. So, you can do that, or you can just make your own with construction paper and crayons. What do I do? Neither. I talk about it. I set up the expectation by talking about it. First we're going to ____, then we're going to ____. That kind of thing. I did just buy a little dry-erase board at Target (helloooooo dollar bins) so I can start making a visual schedule and social stories. Lindsay, an OT that works with Little Bird uses one to make a schedule and she finds it helps LB stick to the plan better and get "distracted" by other things less. She draws pictures and numbers them. So, she'll draw a picture of the blue cuddle swing, then the trampoline, then the books, then the table (ugh, table time!), and then mommy. Something to keep her on track. This program of making a schedule is great for a lot of kids. We are very lucky that LB doesn't need to stick to the schedule and can be flexible if they run out of time or something.

Go check out the site if you want to. Or don't. Whatever. And thanks, Arlene!!

*This Moment*

{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. -SouleMama

Your Sugar Doll

Well, the hits just keep on comin'! I got me another award! This one came from Nikole over at A Happy Simple Lovely Life. Here's the award:

The Fabulous Sugar Doll Blogger Award

It's a Sugar Doll award. What do you think that means? Yeah, me neither. But, nonetheless, I'm flattered! Sure, I'll be your Sugar Doll!

As with most of these awards, there are rules. The thing is, the rules are to list a bunch of things about yourself. But, since I just did that...

I'm going to make a list of things I am NOT.

1) A sorority girl

2) A minivan driver

3) A minivan driver with stickers depicting family members and pets

But if I was, this would definitely be the way to go:

4) A rule follower

5) Giving up on my Little Bird

I lovingly bestow this award upon some sa-weeeeet bloggers:

Heather

Lynn

Tulpen

Sugar Magnolia

Jennifer

Congrats, my little Sugar Dolls!! And a big ol' thank you to Nikole!

Walk 4 Friendship 2010

Imagine a place where everyone is your friend. A place where no one is smarter or more popular than anyone else. A place where everyone understands you and appreciates you.


Friendship Circle is this place, and we have never felt more at home than we do while at Friendship Circle. The staff and volunteers give my child the opportunity to socialize and make friends with other children and local teen volunteers. My child comes home feeling confident, happy, and most importantly accepted by their community. What a gift for a parent like me! On September 5th, my family will participate in Walk 4 Friendship, benefitting Friendship Circle and kids with special needs like MINE.


You can visit our Team Page here, my Personal Page here. But most importantly, please watch this video.

Oh, and you can also help us spread the word! Link to this post, share my link with others (www.walk4friendship.com/DaniG), share this video with the world!! 

Do it!!

Last year's team!

*This Moment*

{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. -SouleMama

Packages on the Porch

You've heard about my mommy before here and here.

There are always packages on the porch. My mom loves internet shopping. A new package arrives every couple weeks. Last week was no exception. Little Bird got some new t-shirts:

She also got some more Dora The Explorer underwear. Which reminds me of another time she'd sent Dora undies to the bird. She didn't want Greg to feel left out, so she ironed a Dora decal on a pair of boxers

*This Moment*

{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. -SouleMama

And the award goes to...

ME! That's right, two awards have been bestowed upon yours truly. Woohoo! My lovely friend Lynn has honored me by calling me both beautiful (I'll take it) and versatile. I guess that last one is because of the wide range of things I talk about here: poop, stimming, weather, and more poop.

There are rules for receiving these awards. I have to pass them on to seven other bloggers and I have to reveal seven things about myself. Well, since one of my many talents is breaking the rules, I'm only doing six of each. Yes, I could probably come up with seven of each, but rules schmules, ya know?!

So, here are the six bloggers I'd like to bestow both of these honors on:

Lady of the Arts
Leelee News: All about Katie
The Gentle Giant
The Quirk Factor
To Kid or Not to Kid
Ticky and Mimi

Listen, if you don't have time for this stuff, I get it. No worries. But at least know that I think you are ALL beautiful and versatile :)

Ok, for the 6 things about me...
1) Often times I think in lyrics - occasionally in Yo Gabba Gabba lyrics (I know, FML)
2) When I'm in Michigan I call Los Angeles home, but when I'm in Los Angeles, I call Michigan home. I'm lost.
3) I am super open and honest here, often fearless sometimes, and even though I love when people I know in my real life tell me they read this shizz (a girl needs a boost sometimes), I get really shy about it.
4) I switched schools every two years beginning at 7 years old. And by "switched schools" I mean "was expelled"
5) I married my high school boyfriend's best friend. That ex-boyfriend was a groomsman in my wedding.
6) I count some of the Autism/Special Needs moms I've met on the interwebs among my biggest inspirations and closest confidants.

The next level

Well, I've written about how frustrating it is when we parents aren't taken seriously by the doctors who are meant to be caring for our children. They think we're nuts for trying some of the things we've tried. They don't know our kids like we do. They probably also don't know desperation.

When the "best pediatric GI doc in town" told me last week that he's certain the Little Bird gets extra scripty, flaps more, spins and bangs her head, can't focus or sit still after going 2 or 3 days without pooping, he suggested that it must be because she's not comfortable. Moms like me know it's has a lot to do with the toxicity of the leaky gut (something I'm certain this doc is not willing to learn about or acknowledge). After all, his long-term solution was to give her laxatives and stool softeners every day. When I asked "for how long?" the answer was, "indefinitely." Do you agree with me that this is not the right answer? How can someone tell me to keep my kid on laxatives AND softeners forever? That's your answer? I'm blown away. Here's a kid on his case load with chronic constipation and his answer is laxatives every day? No interest in discovering WHY this is happening and helping to fix the problem? This seems like a trend to me: trying to treat symptoms alone without getting to the root of the problem and working on it from there.

I'm giving up on this physician. It's time to take it to the next level. I'm ready to head to New York to see the doctor who wrote a book I love, a book that my friend Susan and I call "the bible." Healing the New Childhood Epidemics" is by Kenneth Bock. He runs a clinic out of Rhinebeck, NY. We will head out there in December. That's when we could get in. I've been thinking of going to see him for a few months now. But, this experience last week paired with this post by Heather made me realize that it's time. So, I'm going to look into airfare and get a room in Rhinebeck. Special thank you to Chelsea Clinton's wedding coverage for giving me great ideas of where to stay and things to do on my visit to Rhinebeck!