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, January 30, 2011

Her invisible disability

"but you don't.....
-A Perfect Circle

An invisible disability is considered an umbrella term to connote any disability that is "hidden". Most of these are primarily neurological in nature. It can be anything from epilepsy to bipolar disorder to ADHD and Autism (ever heard of it?). Basically, they're disabilities that can't be detected just by looking at a person. Early on in our journey people would say things like, "she doesn't look funny" or "you can't even tell...."  

Since it's not "obvious" by just looking at the bird (as long as she's not scripting talking or flapping spinning moving), some people don't get it and think she's just ignoring them or not listening or misbehaving. It's especially awesome when she walks up to a kid and squeezes their arm because she doesn't quite get "Hi, I'm the bird, let's play!" 

People with invisible disabilities are definitely treated differently and usually aren't given the amount of patience and tolerance they need. I feel like I often have to justify the bird's behavior so people understand she's not being a bratty, disrespectful kid (although....).

When we went to Disneyland last month, we used the ha-ha suckers special access pass to avoid long lines and meltdowns. As we entered the Mad Hatter's Tea Party (aka the vomit-inducing spinning teacups), a man shouted at me, "that's the exit! why don't you wait in the line like everyone else?!" I walked up to him and said, "yeah, ummm, we are with a child with a disability." Douchey Doucherstein replied, "oh, I'm sorry." "Yeah me, too, dude. Me too."

Here's my bird having a great spin on the teacups, completely oblivious to the d-bag behind her
It's an interesting dichotomy since I spend so much time and effort helping her reach her potential and blend in a little bit better. I do worry about people punishing her for not behaving the way they'd expect her to based on how she looks. Although, apparently D-bagitis is also an invisible disability and you can't really tell if someone has it just by looking at them. Unless, of course, their collar is popped and a huge medallion is swinging around their necks- and as soon as they open their mouths, it's totally obvious. 

Friday, January 28, 2011

*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, January 27, 2011

What to expect...

"But someone, they should have warned you
When things start splitting at the seams and now
The whole thing's tumbling down.
-Band of Horses**

Remember being pregnant and reading "What to Expect When You're Expecting?" I loved that. It was so much fun to read everything that was happening inside me and how the "thing" was forming. Then I had the baby, Little Bird. And then I read "What to Expect The First Year." And then I wanted a refund. Because none of that shit happened. My baby didn't lift her little head up, didn't roll over, didn't stop screaming. Then came those handouts at the well visits with her pediatrician: the "at x weeks/months/years, your baby should be...." That's what this is all about, by the way.

Birthdays suck. Mother's Day, too. Both of those occasions remind me of my reasons for my bad attitude drinking antidepressants xanax habit  grief. This is not how it was supposed to be and all that. Well, Little Bird just had a birthday and that means it's all coming up for me. That's why Lynn and Jill have gotten crazy lady emails from me this week and why I must be a miserable person to be around.

Yesterday was the 6 year check up. It went something like this: weight- too low, height- perfect (she does not get this from me), "here's a cup for her to pee in and here's the paperwork" (at 6 years old your kid should be...) I've literally left those papers behind since her 6 month check up. They lied every time. So, we go into the bathroom to see if she'll pee in the cup. No luck, but I was lucky enough to find a load in her underwear. Awesome. "Um, excuse me, doctor? Could you please sit in here with her while I run to the car and get new underwear?" Check up resumes and of course the doctor (whom I adore and I know she's reading this right now- hi Dr J!!!) can't go forward with her typical check up since we don't fit in to ANY of the typical questions. Dr J is pretty cool with the stuff we do and she supports us while humbly admitting that it's not her expertise or experience, but as long as we're not doing anything to harm the bird, she's supportive. About 7 minutes into our vaccine talk (we do this at every check up. I am not anti-vaccine, I'm just not doing boosters), I looked over at the bird and she had that I'm-dropping-a-load-in-my-pants look (you know the one). And that was the end of the doctor visit.

I think she's still getting used to these supplements. They're definitely having an effect on her gut. The New Deal is still a work in progress.

I left that appointment frustrated and sad. I left the "your six year old should be...." papers in the exam room. I looked at a few things on there and put it back down. Those papers suck.

We went home, watched the Duck Song on YouTube, took a bath, and carried on. Because that's what we do. We carry on. (sometimes with a load in our pants)

**As the bird soaks in her bath, I grabbed my laptop (I'm a Mac snob) and went to 8tracks.com (which I LOVE) and pressed play. This Band of Horses song was the first one to come on. Never heard it before. Perfect words.

Tuesday, January 25, 2011

A daddy's perspective

I'm excited to welcome a special guest today, Lou, daddy to Diego. He offers us a father's point of view in raising a little boy with autism. Take it away, Lou...

The way in which we experience emotions varies depending on the person.  Some will react in a more extreme manner than others but we all do in fact feel them to some degree.  Fear, however, is something that can elicit the most intense reaction and is of the utmost concern to me because of how strongly it affects my son.  Diego is almost five years old and was diagnosed with autism in 2008.  As many other autism parents will also tell you, our son has always struggled with extreme sensory issues.  Two of the things he fears the most are being examined by a doctor and taking medication.  This makes each and every illness more stressful and frustrating for all involved.  Bringing him to the doctor is a huge challenge for us because as soon as the physician walks into the room he loses control.  All of this is further intensified by the number of visits we have made to his pediatrician and other specialists throughout his childhood because of acid reflux, or ear and throat infections accompanied by countless fevers. 

This past year (2010) was by far the hardest because of a problem with ear infections.  After developing a very severe double ear infection that was resistant to all antibiotics we decided along with his ENT to have tubes inserted into both ears.  He then became one of the few people to have the tubes become infected because the ‘resistant organism’ that caused the infections did not fully heal.  His ears began to leak and we had to make weekly trips to the ENT to have his ears drained.  I had to physically restrain my son while he screamed, thrashed and kicked out in anger and fear while they performed a rather routine procedure.  Since our boy is not your average patient, nothing is really just a routine procedure.  Promises of “This doesn’t hurt” have no effect on either him or us because if the procedure itself is invasive, he will not be able to tolerate it.  The ENT saw how upsetting this was to our son and to us (my wife and I would barely hold back tears) and he told us we could replace the tubes in order to stop torturing him with repeated cleanings.  As difficult as it was to bring him back to the hospital and have surgery, the second set of tubes have worked out better for him.  He does get the occasional ear infection but with the help of an antibiotic, his fever subsides and he begins to feel better. 

Since my son is developmentally delayed, he really cannot afford to constantly get sick and miss both school and therapy sessions.  As soon as he starts to feel better and can concentrate on his speech and OT sessions he usually ends up right back at the doctor.  We feel as if the progress he is able to make is then negated with the next fever and subsequent trip to his pediatrician.  How can we expect his behavior to improve if he doesn’t feel well?  How often are tantrums related to physical discomfort?  Does he have a headache?  Did he eat something that didn’t agree with him?  Unfortunately, his limited use of words prevents us from knowing the answers to these questions.  What we needed to do was find something that would help him feel better.  After all, we want to give our son a chance to learn to communicate in a more effective manner and most importantly we want him to be happy.  It is difficult to see his frustration at his lack of speech and inability to explain what he wants or needs.

What we have decided is to try and attack the source of the problem by helping to prevent so many of the infections and other illnesses in the first place.  We were able to find a dietitian that focuses on helping special needs children and their families through nutrition therapy.  We feel that with a balanced diet along with vitamins and supplements we can help his body build a stronger immune system and he will fight off infections before they are able to fully develop.  The beginning of this process was a great way to end a difficult year because we can sense we are on the verge of a breakthrough.  My fear that he may end up losing his hearing before ever being able to speak has lessened and he has even begun picking up some new words.  I know when given the chance our son will flourish and it is our hope that with longer periods of good health, his behavior, speech and communicative abilities will take off!

**Lou shares a journey with autism from a father's point of view. He has two sons and his oldest was diagnosed with an autism spectrum disorder in 2008..You can find more from Lou at his blog Our Life With Diego or follow him on twitter: @loubega1

Monday, January 24, 2011

Happy 6th Birthday Little Bird

Today Little Bird is six years old. Just like every other mother in the universe says on her child's birthday, I have no idea where the time has gone. Her fourth birthday wasn't so bad. The fifth one was really hard for me. This one is pretty tough, too, but only because my expectations and hopes and dreams aren't being met. But that's my problem, now isn't it?!

The last time she had a birthday party she was 3. Since she's in an awesome inclusion program this year with typical kids (aka normies) who all have birthday parties, we decided to throw one for her with the kids from school and a few outside kids with whom she has play dates or shares a special connection. 
I baked and frosted 7 million cupcakes 
(or maybe it was 48. I stopped counting.)

They turned out great, right?!!
Strangely enough, all the kids wanted to taste the GFCF big top cupcake I made for the bird

 All in all, it was great. There were only two fights- over who got to sit next to the bird. It got pretty ugly.
There was one point where this happened:

But then this happened, too, so it's cool

 Rather than offer the kids cheap, poorly made plastic toys in their goody bags for the parents to throw away as soon as their backs are turned, I had custom M&Ms made with her picture on them....
Yes, her name is spelled L-i-t-t-l-e B-i-r-d. Pay no attention to this typo.

Alright, six. Let's see what you've got.

Think I'm a Top Mommy? Click on this picture to prove it.

I won an octopus!

Thank you very much to everyone who voted for me (and the mystery person who nominated me in the first place) in the 2011 SPD Blogger Awards. For those of you stalking this blog whose kids don't have special needs / special powers, SPD is sensory processing disorder.

The results are in and I've won in the category of Most Humorous. Still haven't figured out if you think I'm funny or just funny looking... Either way, THANKS!!

Sunday, January 23, 2011

Going "organ"ic

Here's the annual organ donation post. Today is the SEVENth birthday of my second favorite little girl, Shay. I tell her story every year in effort to guilt people into registering as organ donors raise awareness of the importance of organ donation
It's truly a miracle that Shay is here today and we owe it all to the beautiful gift of life that one family gave to her. You, too, can give someone the gift of life when you're all done with your organs by registering as a donor here. We knew we'd face this time sooner or later, but it's still very hard to walk through. Shay will need another heart. Soon. She began rejecting this one recently and (this is where I hate the system) she has to get sicker and sicker before she can move up the list. This part of the process sucks. Like, really, really, really sucks. 

Rather than write the same post every year, here's a post from two years ago ... enjoy.


Saturday, January 22, 2011

The Petite Consumer

I recently guest posted on a website called The Petite Consumer. They review parent, pregnancy, baby, or child related products. It's really a great website and I "like" them on Facebook. You should, too, actually.

So, here's my post on "Functional Products" from the point of view of a mama to a beautiful bird with Autism

You click and I smile. It's that simple. Let's do this.

Friday, January 21, 2011

Because I am awesome

Yep, that's right. I'm awesome. Well, Jill thinks so, at least. That's why she's awarded me the
Memetastic Award

When you look at that award, you hear angels singing, right? I know, I totally do, too. Weird. See that dancing kitty at the bottom? Awesome. Oh, and the shooting star? Also awesome!

Jill created this award, and that means she makes the rules. Here they are:

1. You must proudly display the absolutely disgusting graphic that I have created for these purposes (put it in your post, you don't have to put it in your sidebar, I think that would seriously be asking too much). It's so bad that not only did I use COMIC SANS, but there's even a little fucking jumping, celebrating kitten down there at the bottom. It's horrifying! But its presence in your award celebration is crucial to the memetastic process we're creating here. If you need a higher resolution version... I totally have one!!

2. You must list 5 things about yourself, and 4 of them must be bold-faced lies. Just make some shit up, we'll never know; one of them has to be true, though. Of course, nobody will ever know the difference, so we're just on the honor system here.

3. You must pass this award on to 5 bloggers that you either like or don't like or don't really have much of an opinion about. I don't care who you pick, and nobody needs to know why. 

Ok, here are my 5 statements. Only one is true. Or is it? (see what I did there?)

1. Once I was busted, down on bourbon street; set up, like a bowling pin
2. Once I was performing at the super bowl with Justin Timberlake and he ripped off my top and my boob popped out.
3. Once I was interning at the White House with Clinton and I learned how to "blow" smoke rings with a cigar
4. One time I made out with one of the groomsmen that was in my wedding
5. One time this girl named Billie Jean told everyone she was my lover, but I told them she's just a girl who claims that I am the one

Passin' it on:
Jen at The King and Eye
Kathy at Butterfly Moments
Jen at Living Life with a Side of Autism
Heather at Living, Learning, Laughing and Loving with Autism
Sherri at the Claw


You click and I smile. It's that simple. Let's do this.

*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

Wednesday, January 19, 2011

For Deeds

Little Bird's birthday is coming up. She'll be six. Last year around this time I was hyperventilating every time I even thought of the number five. I talked about it. A lot. Interestingly enough, I'm feeling a lot better this year. Maybe I'm just too busy, or maybe I'm sliding closer and closer into acceptance. Who knows?

This is Little Bird on her 3rd birthday

We threw her a little party in our basement that day. Some kids came over, we let them spread frosting and sprinkles on sugar cookies and eat some cake. 
Then I sent those sugared up kiddos home to their parents- suckers!!!

Please pay no attention to the knife the bird is holding
There's another little boy who turned 3 this week. His name is JD, but he goes by Deeds. He's super duper cute. He's got Autism, too. He had a Teenage Mutant Ninja Turtle birthday cake at his party. The night of his birthday, he was hungry and asked for macaroni and cheese. He and his dad went ahead to make it and minutes later his mommy heard a crash and a shout. Yes... the boiling water. His parents were amazing in the moment. They all ended up in the hospital and doctors began treating that sweet little birthday boy. His recovery is gonna be tough. He woke up screaming with both eyes swollen shut. Poor kiddo. Poor parents. 

Here's the thing about this little boy. JD is a wanderer. He just takes off. I know we've all had that moment where we're in a store with our kids and we turn around to find them our of our sight. Hello, blood pressure spike! Well, imagine if your kid didn't answer when you called his/her name? Or just kept on going, with no concern or fear of where he was going... I took this straight from his mommy's blog:
The biggest struggle we have with JD is wandering.  JD loves to explore, like most typical little guys.  The difference in JD is that he doesn’t care if you are around, and he will not respond to his name being called when he is wandering.  The first time I lost JD I was at a store and he was strapped safely in a stroller with his sister.  I turned around from looking at a product and he was gone.  He had figured out the buckle and I couldn’t find him for almost 30 minutes.  Everyone around was frantically screaming his name and we finally found him outside, two stores down playing in the doorway of another building.  I ran up to him calling for him the whole time and it wasn’t until I touched his arm that he turned and notice me with a simple “hi mommy.”

His family has been working hard to get an Autism Service Dog for JD, who also suffers from seizures. Despite the new journey he and his family are on to heal from these burns, they remain 110% dedicated to raising funds to get a DOG4DEEDS. 

Take a moment to think good thoughts, sending your best vibes out into the universe. Then visit their website so you can check in on Deeds now and then. You can even make a donation to help their mission. 
A Dog 4 Deeds

And how can you resist a "Thank you" like this....

You click and I smile. It's that simple. Let's do this.

Monday, January 17, 2011

How I realized Little Bird is the cool kid

A few months ago I wrote a post called Inclusion: For Her or For Me? about fighting so hard for Little Bird to be in an inclusion program at school. Inclusion can be great, and a self-contained classroom can be great, too. It ALL depends on the kid, the teacher, the kids in the class. One size does NOT fit all. For last year (pre-K) and this year (kindergarten), I chose to put Little Bird in a full inclusion program with one one one support. Back in October, when I wrote that post, I was wondering if it was the right decision for us. Truthfully, LB can't function at the same level as the other (all typical) kids and certainly can't learn the same way they do. Sure, she can read and spell better than many of them, but they're doing double digit math and I can't get her to repeat after me, "1+1=2". Of course she's not going to be like the other kids, she's.... different. But for the social piece, I've been reminded again and again that this was the right choice. 

Yesterday was the birthday party of a little boy in her class. We've never seen this kid socially- no play dates or anything. He's just a boy in the class of 10 kids. We got there late because LB had therapy. When we walked in, all the kids were sitting down to eat pizza (thank gd I'd just given her enzymes because I knew she'd fight for a piece of that gluten-y deliciousness. I took off the cheese.), and the birthday boy saw her and shouted, "{Little Bird's} here!!! I wanna sit next to Little Bird!" What?? This is his birthday party and he wants to sit next to the bird?! Whoa! She really is a cool kid. And, yet, some of these kids might not have even been exposed to a kid with special needs if not for awesome programs like the one she's in. It's a private school at our local JCC. What's so sad is that most of the private schools will not accept a kid with any "issues". They say they don't have the resources. We all know this is a choice because they seem to have the resources to provide a large amount of financial aid to the families of "typical" kids. Our kids end up with no choice but to go to the public schools where often times there are not nearly enough opportunities for inclusion and certainly not enough support staff to shadow our kids during inclusion programming. Our kids get the shaft.

But, see, it's not just the kids with special needs who benefit from an inclusion program. I'm writing this on the day we commemorate the life of Martin Luther King, Jr. who knew he'd die fighting for equal rights and for his dream that all people would be judged based on the content of their character. And, see, that's what's happening in inclusion classrooms everyday. These kids love my kid. They don't care that she flaps her arms, doesn't talk much, or keeps her fingers in her ears. They see her for the sweet smile she offers, the giggle she gives when she's tickled; they're often envious that she can read as well as she can, and they know she loves books. This morning I stayed with her during a ceremony they have each Monday, welcoming the new week (havdallah). When we walked in, a little girl called out, "{LB} sit next to me." The bird went right over, silently. Then this little girl bragged to another kid in the class, "{Little Bird} loves me and she is my friend." These kids are learning to accept all kinds of people into their worlds and will become better people because of that. 

So, I just answered my own question. The inclusion?? It's for her. It's for me. It's for all of them. 

The bird and the birthday boy

Vote early and vote often

I got an email yesterday saying I was nominated for some kind of award, but I couldn't read it because I was busy wiping a nose and a tush. Upon further investigation, it turns out that I'm up for a SPD (Sensory Processing Disorder) Blogger Award in the humorous category. I'm a little curious about who nominated me and if you think I'm funny or just funny looking. Maybe you shouldn't answer that.

So, if you feel like it (and I hope you do), please click here and vote for me. Everyday. Twice a day. And then tell your friends to do the same. Please???

Vote For Me!

You're still here? Go. Vote already. Sheesh!

Sunday, January 16, 2011

Blog Gems: an "event"

Every fortnight I participate in Blog Gems, where we "air our archives." This round is about an "event" we experienced, so I'm linking up with this old post: "I Just Can't Take the Stares" originally published in June 2010.


Friday, January 14, 2011

Therapist Spotlight: Jodie

Jodie is probably the therapist that holds the most special place in my heart. She was our first. Little Bird was only 8 months old when we made our way to Jodie for Physical Therapy. LB couldn't move, roll over, sit up; couldn't even lift her head up. Oh, so that's why she screamed when we attempted 'tummy time'! Jodie worked so hard with Little Bird to get her to do the most basic of gross motor skills. It was so scary back then because we really didn't know what was going on. Why can't she move? Why is her muscle tone so low? Will she ever be able to walk?

Slowly, she gained a little bit of strength and ability. She met those basic milestones, just really really really late. They worked so hard together twice a week for months and months.

I remember the day Little Bird took her first steps at 20 months old. I called Jodie totally freaking out saying she HAD to come over to see this. She was blown away. No one expected the bird to get it before the age of 2. In fact, Jodie later told me that she was sure she'd come over and Little Bird would be cruising furniture and I'd be calling that "walking". But, nope! The bird was doing it!!
No one was as thrilled as we were as Jodie.

She's stuck with us and even though we really only see her for consults now about 3 times a year, she's still a part of the team. Although, there are plenty of times when Little Bird is running away from me and as I chase after her, I think, "freaking Jodie, man. Just had to teach her to walk!!"

You click and I smile. It's that simple. Let's do this.

*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

You click and I smile. It's that simple. Let's do this.

Thursday, January 13, 2011

A teaspoon of perspective

"I'm just trying to get the engine to turn
I'm just tryin' to smile through my tears
And I still got so much to learn
But the best I can is what I have to give
Gonna give it while I'm here"
-Tift Merritt

First I saw my friend Melissa post something on twitter about being the "anti-Chinese mother" and I wondered what that was about. Then I read my friend Carrie's post on her blog, The Doctor Mom (see, she's a doctor and a mom, so The Doctor Mom. Get it?). Okay so now I know what they were talking about. A Chinese woman wrote a book called The Battle Hymn of the Tiger Mother. Apparently there was a piece in this weekend's WSJ about it. I didn't know because despite the fact that the WSJ is actually delivered to my home each morning, I refuse to read that massively right wing propaganda. I prefer the lefty prop! But I digress. Anyway, the excerpt spoke of the Chinese mothers' insistence on excellence: straight As, top of the class, no time for playing, etc. So I read Carrie's post (you should, too) and I commented. Then I moved on to something else (probably a Big Daddy cartoon or something very important like that). But, I wasn't done. Nope, I kept thinking about it and I decided to share this thought with all of you. Yeah, thank me later.

The deal is that I had a moment of gratitude because here's a big fat dose of perspective. So I want to share with you the comment I left of Carrie's post:

That's it. You can go about your business now. Go on. Go. 

Oh, but first you can click on this little picture here and vote for me. 

Wednesday, January 12, 2011

Guest Posting at Special Happens

You can find me over at Special Happens today, posting about friendship. 

grab the button

CLICK HERE to read what I've got to say.

Do you find your strongest friendships come before your family became special, 
or are those made after?

You click and I smile. It's that simple. Let's do this.

Tuesday, January 11, 2011

What are YOUR favorite ASD books?

Yesterday I gave an update on our New Deal with all the new supplements we're trying out on Little Bird. Ashley left a comment: This makes me want to take a new diagnosis parent's class on the available biomed options. Anyone have books to recommend?

My favorite ASD book is the first one I read after Little Bird's diagnosis:
Overcoming Autism by Lynn Kern Koegel

My favorite biomedical book is (obviously):
Healing the New Childhood Epidemics by Dr. Kenneth Bock
My friend Susan and I refer to this book as our bible. Dr. Bock really knows his stuff. At least I hope he does since I'm putting my kid in his care!!!

Now I'm gonna put this out there to all of you... What are your favorite Autism/Biomedical books?  Please leave a comment here with your answer, or over on my Facebook Page.

You click and I smile. It's that simple. Let's do this.

Monday, January 10, 2011

New Deal Update 1

"It bounces off the wall at you
when the miracle is happening"
-Stevie Nicks

There's an interesting twist to all this work I do with my bird.... you never really know what is working and what isn't. When she's making progress we wonder: is it the therapies? diet? supplements? time? Who knows? Still, we carry on and do it all. And I mean ALL.

So you know how I've posted about the New Deal and all the new supplements I'm giving her? Yes, you do. Everybody does. I know this because people who live in my community stop me in the grocery store (hi Michelle!), clothing stores (hi Fawn!), waiting area in delicious sushi restaurants (hi Suzy!), etc to ask me how the new supplements are going. I appreciated that people are interested and some even seem to genuinely care about it all. It's only been 10 days since we've begun the New Deal and here's the update:

We've started about 8 supplements so far:
Creatine, Vitamin D drops, Cal/Mag, MethylFolate, Liquid E, Enzym-complete Isogest, CoQ10, Pro EFA fish oil.

And 4 new probiotics:
ProBio Gold, Theralac, Symbion, Probiotic Complete.

For some reason, one of the ingredients in the B12 shots has been on backorder, so the compounding pharmacy (where they actually mix it all together) doesn't have it to make up yet. I'm fine with that. I'm also waiting until I get her settled on these supplements before we start the month-long course of vancomycin and nystatin.

So far, she's doing really, really well. Good focus and attention, and she seems to feel okay, too. She's happy and fun. Oh, and what's a Dani G post without a little poop talk? She was having really loose, mushy poops, so I cut the Cal/Mag in half. She's had a funny reaction to Magnesium in the past, so I kind of expected that. It's pretty typical, actually. Ha! Something is "typical" with the bird :)

Stay tuned....

You click and I smile. It's that simple.

Saturday, January 8, 2011

Update on my first post

A few weeks or so ago I reposted my first public post in a bit of a blog hop where we revisit old posts (The Blog Gems). There were a few comments asking if and how things had changed since then. Well, I wrote that 2 years ago, so thank g-d, yes, things have changed. Little Bird has made some tremendous progress since then. There's a really really really long way to go, and some areas haven't moved much at all- I'm talking to you, fine motor. Still, we do continue this trend of very slow and steady progress, followed by a static period, regression, and then a leap forward. Rinse and repeat.

I love the way Dr. Norm Doidge puts it in his book about neuroplasticity: The Brain That Changes Itself
Learning plateaus are a temporary part of the plasticity-based learning cycle in which stages of learning are followed by periods of consolidation. Though there's no apparent progress in the consolidation stage, biological changes are happening internally, as new skills become more automatic and refined.

Too bad knowing something intellectually and emotionally have nothing to do with each other for me. Every regression sucks just as much as the last (and probably the next), but she does seem to pull through- this does not mean that I stay positive and/or "know" she'll be back. Nope, I freak out every single time. There are many tears (mine), fits of anxiety (mine) and probably gastro issues (both hers and mine).

When she makes progress, I am blown away at her abilities. In fact, most days I'm blown away that she can do half the stuff she can do with what she's working with (the lowest tone in town). She is so freaking awesome. I think I'll keep her.

Yes, you should click on this banner to vote for me :)

Friday, January 7, 2011

*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, January 6, 2011

Special Needs Blog Hop: 5 New Year Goals

The Special Needs Blog Hop's topic for the week?? 
List 5 goals you hope to accomplish in the New Year

1. To not be overwhelmed by the New Deal, and making the seventy trillion new supplements I'm giving Little Bird just a part of my routine.

2. To make more time for ME. Doing little things for me that have been really easy for me to put off, or deny altogether.

3. To connect with my husband a little bit better.

4. To focus on what's really important and letting go of the things that aren't as important as they seem.

5. To find some real help so I can let my husband take me to Paris for our 10th wedding anniversary (like he really really really wants to) instead of saying "but who will take care of Little Bird and be able to give her all her supplements?"

What are yours?

Wednesday, January 5, 2011

A Special Appearance by Darla

I'm excited to introduce you to Darla, who is Rory's mom. I've been in touch with her for many months. In fact, she was one of the first bloggers I connected with. Still, I think that there are a lot of people who don't know her, but should. You can check out her blog We've Got Animal Trouble here:

Without further ado, heeeeeeeerrrrrreeee's Darla!

Woo-hoo my first guest post! First off I am Darla, and I have 3 hyper yet awesome kids. And a saint of a husband! My life is a great one and with each year I learn more about who I am, and who I want to be. I will not lie to you... I am a scattered mess most days, and it takes every ounce of concentration I have to finish any one task. So that is me in a nutshell.

On to the main part of this post, my middle son, Rory. Rory was diagnosed with Autism at age 3. It was not a surprise to me. Many families are shocked to find out this diagnosis, this was not the case with us. Rory never did make good eye contact, and lost all speech he had shortly after turning 2. The amazing thing is that having 2 other "normie" kids, I have no choice but to treat them all equally. Which has, for the most part, benefited everyone. My son has an unbelievable imagination. Better, I dare say then his older brother. I  do not know what the future holds for us, but I do know that finding other parents out there who know what it is to try and find balance in life with a child or children who have special needs is so comforting! Before I felt so alone in this, as I am sure most parents do. But then I found a blog, then another. Before you know it, I became long distance friends trading sleeping tips, and dietary issues. Everyone wants to help their child to reach full potential. Not to just survive in this world but to enjoy and exceed! We are no different, and neither are our children's dreams. Thanks Dani for letting me get some of the spotlight on your blog, you rock!

Tuesday, January 4, 2011

You think I'm pretty cool, right?

Maybe I'm just bored or maybe my ego needs a little stroking. I finally added my blog to the list of top mommy blogs. Now you can vote for me. Every day, if you want to :)
It's very easy. Just click on the little "vote for us" picture here. That's it. 
Really, that's it. 

Of course, I think you should "vote" every day by just clicking that little button over there <----- (on the left side of this here fantastic blog). Don't go overboard- only one vote per day per person will count. 

Each time you click (and tell all your friends to do the same) an angel will get her wings. 

Click on this picture to prove your love

Monday, January 3, 2011

Sh!t I saw at Disneyland

Now that I've told you about how fun my family's trip to Disneyland was, I think it's time I share with you some of the other stuff that was going on there that day. I mean, in a crowd of about 65,000, you're bound to see some weird shit. So, I kept my camera ready...

Muffin Top

I love that the dad got stuck wearing this backpack
And the worst thing of all.... Jorts!!
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See, it's not just my mom! (since Jan 1, 2010)