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.

Friday, April 30, 2010

*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

Thursday, April 29, 2010

Very sneaky!

Heather over at Living, Learning, Laughing & Loving With Autism commented on my last post about how she's tried to sneak supplements into her son's diet, but he's way too smart for her and refuses them too often. So, I want to share with you some of my secrets...


In the morning, I pour her a cup of juice and spike it with a capsule of creatine and a teaspoon of liquid E (vitamin E); both are flavorless. Plus, first thing in the morning she's thirsty and might drink just about anything (except the Natural Calm magnesium drink that I'd love to get in her). 


I make her pancakes for breakfast. And by "make", I mean microwave. They're the Trader Joe's GFCF pancakes and she loves them so even though I've added the Gluten back into her diet, she can still eat the GFCF variety. I put two drops of Vitamin D on a piece of pancake and always make sure that piece gets eaten. I pour maple syrup all over those pancakes, by the way. YUM!


As soon as she comes in the door from school, she wants to spend a few minutes on the computer. I make her pee on the potty and eat her "applesauce medicine" first. It's a 1/4 tsp of TherBiotic Complete probiotics (100k billion) and one capsule of saccharomyces boulardii covered in applesauce. I do this again before dinner, but I leave out the sacc b. Then either with her lunch or as an afternoon snack, she gets strawberry yogurt. I mix in a teaspoon of Nordic Naturals Children's DHA (fish oil), which is strawberry flavored!! I also open up a softgel of CoQ10 and squeeze the oily stuff right into the yogurt.

That's it. That's all the supplements I'm giving to her right now:
Vitamin E
Vitamin D
Creatine
CoQ10
Fish Oil
2 types of Probiotics

Am I forgetting anything?? Probably.



update: Reintroducing Gluten

I've gotten a few emails from friends regarding Little Bird's diet. So, here's a little update to the Reintroducing Gluten post:

It's been about 2 weeks of adding gluten back into Little Bird's diet. She's still eating more than before. But what's interesting is that when she shouts for chicken nuggets, I make the ones in the freezer (they're gluten free) and she eats 'em up! She did that before, but I think her overall appetite is better these past two weeks.  She's absolutely loving eating real bread again- especially challah. Oh, and those Ritz crackers she is always asking for? She takes those suckers down! I feel really good about her eating. I really want her to eat eat eat and gain strength so that she can move a little bit better and even have an easier time getting her sensory needs met. Here's the tradeoff: constipation (yes, I'm gonna talk about poop again). For those of us in the Autism world, a day doesn't go by when we don't talk about poop at least 10 times. It's really impossible for us to deny the gut connection to ASD.

I gave her Miralax a couple times and that does the job, but I don't want to make a habit of it. So, I've also started adding Benefiber to her foods or to her juice. There may be no real difference on the system, but I just feel better about the benefiber than I do the miralax.

When we made a visit to our DAN doc earlier this week, I was kinda nervous about telling him we've given her gluten again, but he was totally on board. Of course, he'd rather I give her magnesium than the benefiber, but the magnesium tastes pretty gross and I just can't get her to drink it. So, tasteless Benefiber wins!

We're still going through a rough patch with the bird, and we're waiting for her to emerge like the beautiful butterfly she is (too much?).

Tuesday, April 27, 2010

Telling the truth

"What would they say to make you feel ok?"
-One EskimO

I have a lot of friends. Well, I have a ton of acquaintances. I bet some of them think they're my friends. Maybe they are. I do have a lot of friends. For some reason, people like me. A lot. Weird. I have a nice amount of good friends. Like, really good friends. Not all of my friends are good friends. Some are just friends. And that's okay. Some of my good friends are amazing friends. Friends with whom I'll share secrets, to whom I'll show my true colors. Those are some of the best friends a girl could have. I feel really blessed to have some really good friends.

My friendships have evolved over the years. Some friendships have grown apart. Some have gotten stronger. Some have remained intact despite major changes in lifestyle. I've said before that some friends kind of dropped me when my life started to be 'special needs-centric'. It's true. Some did. But, I'm getting more and more honest with myself and recognizing that I've done a lot of dropping, too. I'm not sure I've been as abandoned as I thought. I think I've let go of some friendships that just weren't serving me. It really is a healthy thing to do, but I don't think I've been quite so honest with myself about it.

Telling the truth. That's all.

Friday, April 23, 2010

*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



Thursday, April 22, 2010

Reintroducin' gluten

At the urging of a GI doc we recently saw (and waited four months to get in to), we're gonna try to reintroduce gluten into Little Bird's diet. It's been a year and a half without it. I never saw any real substantial changes after we removed gluten. However, there is no doubt in my mind that she can't tolerate dairy. No-freaking-matter-what. Since every kid is so completely different, what works for one kid won't necessarily work for another. So, you try it all. And believe me, we mother warriors try it ALL.

The deal is she is a tall, skinny bird. 44 inches and 32 pounds. Well, 32 pounds with clothes on. She hasn't gained weight in the last year (pretty much since being on the diet), but she HAS grown taller, so I'm not worried about malnourishment or anything. However, this particular doc was pretty concerned about her lack of "reserves". You know, because if g-d forbid, she got sick, she'd have no fat reserved. So, we're gonna try to fatten her up. It's been suggested to me that she doesn't eat much because doesn't like the taste of the GFCF foods (shout out to my mom and mother in law!). So, we're reintroducing gluten, seeing if there's a reaction (we're already neck deep in regression, so why not, right? FML), and hoping she'll be more likely to eat, eat, eat.


It's been about 7 days. Here are the changes I've seen:
-she tells me "i'm hungry" a lot more.
-she eats a lot more.
-she's needed a laxative twice (miralax).
-she hasn't pooped in 3 days**

I'm gonna give her a little more time before I worry too much about the laxative use. It's possible her gut needs a little time to adapt. I will never, ever deny the very close connection between the gut and the mind because I have SEEN it. She eats dairy---> she doesn't poop for days----> eye contact, interaction, engagement ends -----> spinning, stimming, and head banging ensues -----> she finally poops ------> she's back! It's really an amazing connection, and different for every kid.


**In the time I took to sat down and tell you all about her poop, she dropped a load.

Unravel

"While you are away
My heart comes undone
Slowly unravels
In a ball of yarn
The devil collects it
With a grin
Our love
In a ball of yarn
He'll never return it
So when you come back
We'll have to make new love"
-Bjork


Sometimes I have so much going on in my brain but I can't quite get it all into words. Then, I can hear a lyric that helps to make it all make sense. And that's when I can tell you about it.
The "while you are away" part is kinda hard to for someone who doesn't live like we do to understand. So, here's the best way for me to articulate the notion of my bird kinda "going away"...
Here she was when she was so "on"; really thriving and making good, solid progress; and taking a lot of initiative to be both very engaged and interactive
It was her school picture and you can see that she's totally right "there" and "with" you.

Here is just a couple weeks later


I know this happens with any kid, but we have about 3 pictures of this same pose when we're constantly calling her name and she never really "joins" us. 

Actually, I've looked through my pictures from the last month and there really aren't that many of her because- well, because she's just still long enough to take a pic. And that's just her physical body- her brain is on WAY overload and I think she's having a really hard time making sense of the world around her. Her sensory seeking behaviors are on hyperdrive. I'm anxious for her to come on back. It seems like 2 days ago was our bottom and that she won't really get any worse. But, I thought that a couple weeks ago, and again about a week later, and even again last week. Everyone who lives like we do knows that these periods come and go. And they come again. 

And it's true: while she's away my heart comes undone. I become a different person. It really only takes a tiny glimmer of hope to help me feel better. So, I guess I haven't completely given up. 

She's had two good days, so maybe she's making her way back. Stay tuned...

Wednesday, April 21, 2010

my darling honey bee


I’ve been thinking. Scary, right? Well, it happens now and then. Who am I kidding? I think and think and think and then I think a little bit more. It’s true. Analyze, over-analyze, lather, rinse, repeat. Here’s what I’m thinking… Oh, and this one’s probably just for the other mommies like me. Sorry normies, you’re just not gonna get this.

I’m beginning to think that hope is overrated. See, part of why I’m so heartbroken all the time and why this is such a struggle for me is because I’m getting mixed messages. Some “pros” (meaning they get paid for this shit) say my bird seems to be high functioning and that I shouldn’t worry so much about her having to live with me forever, or in a (gasp!) group home. Others give me the same crystal ball answer, as in “I don’t have a crystal ball.” Well, then what am I paying you $120, 140, 165 and hour for? For reals! Some even tell me they have a hard time with the Autism diagnosis because my bird is so driven by social interaction. The thing is, she looks really good once you get to know her and not so good in crowds or with new people. In fact, a friend (actually a sister) told me recently that the larger the crowd, the less high functioning her girl looks. Yep, sounds about right. Anyway, when I’m with her and she’s on a good kick, she looks great. I’m talking like, really freaking great. Like, we start thinking that maybe, just maybe we can make it through this. My friend D says that one day Little Bird is going to be all “grown out of these issues” and she’ll say to me, “big deal, mom. So you took me to some classes.” Obv she’ll never be able to belittle the experience since it’s here on the interwebz for all to see. But I digress. The possibility of Little Bird saying something like that to me is my fucking dream. DREAM! When she’s not doing well, like the last 32 days (who’s counting?!), all bets are off and no one around us has any right to hope.

That’s kind of what this is about. It’s about the dream and all that freaking hope I have. I wonder if I didn’t have so much hope, then maybe it would be easy to accept things they way they are. Like, if I could just accept that my kid is NOT going to snap out of this one day, maybe won’t ever be even close to normal, or just “quirky” (I’ve often said I’d gladly take quirky). Maybe if I just realize that yes, she probably will need around the clock support, whether that’s living with me forever (oh, F I hope not) or in some kind of assisted living situation, then I’d be able to get past some of the bullshit insanity and I could just work and fight for getting her to her best place. Because that’s not what I’m doing now. I’m trying to cure her. On paper, I can tell you that “I’m trying to help her reach her maximum potential and I just want her to be the best Little Bird she can be,” but that’s total bullshit. I’m trying to cure her. I want this to go the F away. Now. Today. Or yesterday.

Basically, I’m wondering if accepting it all would be so much easier if I could just get rid of this damn hope! Autism is kind of an effed up diagnosis. There’s no bottom line of how these kids will turn out. Actually, I think Autism today is a lot like Schizophrenia was 40-50 years ago. Everyone with mental retardation and/or mental illness was called Schizophrenic, but that’s not what was going on; they had bipolar, OCD, etc. But they were all lumped together and no one had any idea what to do with any of them, so they just locked ‘em up in homes and institutions and gave up.

I’m always asking people who have worked in the special needs field the same few questions: Have you seen kids like my bird before? Have you seen them grow up and do well? Have you seen kids worse off than my bird make amazing progress and make it/turn out okay?  I’m desperate for hope, so I am basically begging people to give it to me. But, really, do I want it? Do I need it? Wouldn’t it just be easier to give up on the “cure” and just settle for the acceptance?

You know the parents who say, “I just want him/her to be happy?” Well, I’ve always thought they’d given up on the dream (the you-can-cure-your-kid dream). Seems like the easy way to go. I’d like easy. Because what I’m doing is really, really, really hard. On me. On those around me. The deal is, I DO want her to be happy, but I want me to be happy, too. Like, a lot. So, will it make me happier to keep on truckin’ and fighting for her to get to be as close to typical as she can get? Or would I be better off to just give up that dream/hope/whatever you wanna call it and just work towards acceptance that the dream isn’t in the cards for me and I should instead “just want her to be happy?”


**please click on the link in the lyrics to hear this song. It's so so so beautiful.

Tuesday, April 20, 2010

I'm just sayin'


I'm obsessed.

Here are a few things with which I've become enamored in the past week...

The Noisettes
Rocco DeLuca (again)
Clay Marzo (surfer)

Oh yeah, and I joined Twitter, which I said I'd NEVER do. Not the first time I've done something I said I'd never do...

Yes, there are links here so you can see why these things are all so awesome. Click on them if you want. Or don't. But, I really want you to watch this video. It's a trailer for a film about Clay Marzo.

Saturday, April 17, 2010

Two feet!

"You go backwards but then
You go forwards again"
-Coldplay

I am waist deep in regression. It's been 28 days. Yes, I'm counting. That's what happens. I count the days. I cannot wait until Little Bird comes out of this regression.

She's gonna come out of this one, right? Right?

This has happened before. The first time was 2 1/2 years ago. It's been happening ever since. Basically, she goes backwards in her progress and/or development, but she seems to come out of it eventually. It sucks. It's so tough to see the looks on the therapists' faces. I've noticed that when Little Bird goes through some developmental spurt, a regression precedes it. Kinda like two steps back, one leap forward. I'm ready to leap forward, already.

Because she has such low muscle tone, it's very difficult for her to move her body and ALL of her gross and fine motor skills are delayed or nonexistent at this point. Out of nowhere, a few days ago, she jumped off of a small step with two feet. I know this sounds small, but it's been on her IEP for 2 freaking years now. Personally, I don't care whether or not she can hit goals like this one, but it's always nice to see progress.



Often times when a kid is working on accomplishing a skill, she will regress a little bit and then come back once things settle down in her brain and body. That's fine, and I'll keep waiting for something big, because jumping off a step with two feet better not be my only reward for having endured 28 long days of regression!!!

Friday, April 16, 2010

*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



Thursday, April 15, 2010

This is what it looks like

Well, here we are smack dab in the middle of Autism Awareness Month. Last year around this time, I posted a fun story about Shedding Some Light (if you haven't read it, I recommend it- it's a good one!), but I feel like this year I haven't really posted anything wildly enlightening. Though I do think that there are a lot of people in my life who have learned a lot about Autism just by checking in here now and then. 

Would you agree??

Well, I don't have anything very enlightening to share with you all today, except this:

This is Little Bird's school picture. I just picked it up. 

This is the face of Autism.

Sunday, April 11, 2010

Hey, Soul Sister!

“Hey sister, go sister, soul sister, go sister”
-Patti Labelle

I want to tell you all about my sisters. I’ve got tons of them. They’re all over the world. We weren’t born into the same families, or anything. But we’re sisters, alright. Some of them I see once or twice a week, others I’ve never even met in person. Some I’ve never spoken to, seen a picture of, or even discovered where they live. I’ve seen some in person and we can instantly connect with just a glance. We are the sisterhood of moms of kids with special needs. We’re not shy. And we don’t just sit around a complain or kvetch about our kids or our misgivings. We brag about our babies. A lot. We deserve to. Plus, we appreciate every little milestone and accomplishment the same way “typical” parents do the biggies, like taking first steps. By the way, in my house, Little Bird’s first steps were not cause for just a little celebration; it was a big mother effing deal: It happened on September 28th 2006, about 13.5 months after we were told they just weren’t sure she’d ever walk. I still have chills when I think about it. Do you get it? You might be one of us. My bird tells me she loves me. A lot. Only she says, “I love you, too, Mommy” whether or not I’ve said it first. It’s kind of a script, but that’s ok with me. I wasn't sure I'd ever hear those words from her. Do you get it? Yep, you might be one of us, too.

We speak our own language and many of our conversations are about therapies (speech, physical, occupational, feeding, behavioral, play, etc), or about doctors (neuro, gastro, developmental, physiatrists, geneticists, etc), or about insurance companies NOT covering our kids’ treatments, or about our relationships (marriages, divorces, friends who dropped us, friends we dropped).

The secret handshake is a hug (virtual or otherwise) and the group cheers are “I get it” and “we can do this." In fact, I think most of our “conversations” are encouraging one another and never, ever giving up on each other or our kids. We lift each other up. We laugh together. We cry together. We pray for each other, and we think about each other- yes, even the ones we’ve never met face to face.

It doesn’t take much for us to connect. Last week, while visiting my family in California, I stopped into a Z-Pizza with Little Bird. As she somersaulted her way across the restaurant’s floor, I ordered her a GF/CF pizza. The lady who took my ordered said, “my son’s got it, too.” We locked eyes and silently said, “I get it. We can do this.” We wished each other luck and I took the pizza home. I let Little Bird play on the computer and I made her take bites in between games. Do you get it? You might be one of us.

A few days ago, during my brief getaway with my husband to San Francisco, we sat at Ghiradelli Square and shared a peanut butter fudge ice cream sundae (yes, it was amazing). At the table next to us, a family sat eating their own sundaes. Within minutes the mom and I were comparing notes on therapies, the diet, meds, etc. We exchanged email addresses and a wink. It said, “I get it. We can do this.”

I’ve met and made some amazing friends in the waiting rooms of doctors’ offices, therapy centers, and on the internet. These women have shared their stories, told their truths, offered suggestions. They’ve changed my life. I don't think I could do this without them. They're my sisters.

We get it and we can do this.

Every one of us has a story like this. What’s yours?

Saturday, April 10, 2010

Dear San Francisco

Dear San Francisco,

I miss you already. I'll try not to let 12 years get between us again.

Love,
Dani G





Friday, April 9, 2010

Just Because

*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



Tuesday, April 6, 2010

Closer to you



What a rough couple of weeks it's been. When Little Bird is out of whack, we're all out of whack. Like I've said before, I know this roller coaster ride will rise up again, but I still wanna get off. Like, my friend, Melissa said to me last week, "I just wish it would ride straight for a while." The 'ups' are amazing and we are all able to appreciate them because we've spent so much time in the 'downs'. It's just... how much longer can I ride this ride? 

My conversation with Melissa last week brought something else up for me. I'm obviously not the only parent who goes into her baby's room at night while she's asleep and cries, prays, begs the forces of the universe for help. I swear, when she's asleep, she's the most amazing, sweetest kid in the whole world. I can go in there, snuggle up and have a moment with her without being interrupted by her compulsive need to do somersaults, flap her arms, or shout out the lines to a SuperWhy episode. She's just sweet and peaceful. Sometimes when I see her like that, it renews my drive to keep going. Because I love her. And I'll keep fighting for her. Too bad she doesn't nap, though, because sometimes in the afternoons I could really use that sense of renewal, that push not to give up on her... and the coffee just isn't doin' it much anymore!

Monday, April 5, 2010

Yes She Can!

Little Bird's Occupational Therapist has always said that it's her will and determination that will always pull her through things. She's tough. I've never denied that. Whatever you do, do NOT tell this kid she can't do something. She will do it and then turn around to watch you watching her do whatever it was you said she couldn't do!

Yesterday we went to the park where she wanted to climb up a curved ladder and I, of course, was nervous. But, as usual, she was bent on doing it alone. Just look at that determination...


She made it to the top and then was ALL smiles on her way down the slide...


Friday, April 2, 2010

World Autism Awareness Day


Did you know...
- 1 in 100 children is diagnosed with autism
- 1 in 70 boys is on the autism spectrum
- More children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined
- Autism is the fastest-growing serious developmental disability in the U.S.
- Autism costs the nation over $90 billion per year, a figure expected to double in the next decade
- Autism receives less than 5% of the research funding of many less prevalent childhood diseases
- There is no medical detection or cure for autism

Today is Autism Awareness Day

People around the world are showing their support by wearing BLUE


All day I'm going to keep updating this post with pictures of friends, loved ones, and even some strangers who are sending me their pics, showing their support for families, like mine, who are affected by Autism. Keep coming back to check out the pictures!! Send your pics to DGGOTB@gmail.com








 











*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




I guess I technically have two moments. My mom found this bobcat hanging out on her patio. I think he's beautiful. Then, she caught him later in the afternoon. He was retracing his steps.



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

Thursday, April 1, 2010

Blue

"Bluuuuuuuuuuuue"
-Joni Mitchell

Friday April 2nd is World Autism Awareness Day

Millions of people around the world will be showing their support for families affected by Autism by wearing BLUE. I hope you'll consider doing the same. Please send me a picture of you wearing BLUE tomorrow so I can post it here. Email me your pics at DGGOTB@gmail.com

Oh, and can I thank you, in advance for showing your support for the millions of families, like mine, who are living every day with Autism and dreaming of a day when the statistics start changing in the other direction?! Thank YOU!!

Prolific Blogger Award

"You're a winner..... Long distance winner"
-Buckingham Nicks


A few days ago Lady Ren honored me by giving my the Prolific Blogger Award. First, I'd like to thank Ren, The Academy, Hashem, and all the people along the way that got me here. You like me, you really like me!! Too much?? Ok, well then, Thank YOU, Lady Ren!

And now, I will go ahead and bestow this honor upon some other fabulous and prolific writers that I've really, really enjoyed hearing from in the last few weeks:

Nothing in life is free, sisters, so check out the "rules" below...


Living, Learning, Laughing & Loving with Autism
Acting Balanced
The Gentle Giant
We've Got Animal Trouble
Not New To Autism


Here are the Rules for this award:
1. Every winner of the Prolific Blogger Award has to pass on this award to at least seven other deserving prolific bloggers. Spread some love! ** Please note that I only picked 5. That's because I'm tired and I like to break the rules!! 

2. Each Prolific Blogger must link to the blog from which he/she has received the award. In your case: http://www.imjustthatway.blogspot.com
3. Every Prolific Blogger must link back to This Post, which explains the origins and motivation for the award. 
4. Every Prolific Blogger must visit this post and add his/her name in the Mr. Linky, so that we all can get to know the other winners.
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See, it's not just my mom! (since Jan 1, 2010)