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.

Monday, April 30, 2012

What if your kid was bullied by her teachers?

A. By now most of you (I hope) have heard about and/or seen the video posted by Stuart Chaifetz of Cherry Hill, NJ describing his experience after sending his 10 year old son to school wearing a wire. If you have seen the video, skip to section C. If not, please climb out from under that rock and visit section B.


B. What? what do you mean you haven't seen this? Oy, okay, here. Take a look.



C. Pretty haunting, right? Of course, I'd like to say that I recognize that this is just one story and there are loads and loads of teachers out there who would never, ever, ever consider treating students this way. Still, I'd be lying if I said that this isn't something that I fear wherever and whenever I leave my baby in someone else's care. She doesn't have the ability to tell me if someone mistreats her. It's a very, very scary feeling.
Parents of typically developing kids: you know how you pick up your kid from school and find out what happened, who they played with, what they ate, what their homework is, etc.? Well, my kid can't tell me. Oh, I ask. But she just can't tell me.

It's a scary thing, putting our kiddos into the hands of others. We have to put extra trust out there. This situation in Cherry Hill is very unnerving, but it's so important that it be known that this happens sometimes. This is NOT okay.

I applaud Stu Chaifetz's courage and dedication to his kid and having the balls to put all this out there. I'm also incredibly impressed that he didn't post photos, addresses, and phone numbers of the caregivers involved! Can't say I'd have as much grace and dignity as he showed.

How do you think you'd have reacted if this was happening to your child?


Autism Awareness 2012

Today is the last day of April, Autism Awareness Month. But, of course, for those of us affected by Autism, the awareness doesn't just last a month..... or even a year. It's constant. If you're not affected by Autism in some way (with 1 in 88, who isn't?!), then I hope you learned something new during the month of April.

My friend and fellow Autism mama, Jessica, created an incredibly touching slideshow that I just had to share with you here. Take the two minutes to watch this, then go visit her blog at Four Plus An Angel. You'll be glad you did!



Friday, April 27, 2012

Hey Girl





Tuesday, April 24, 2012

Chicken Boy!

"I have a superhero inside my head. I call him Chicken Boy"


You might remember back in February when I dared to ask the question "what does the Easter Bunny have to do with special needs?"  Well, my friend Lisa didn't win the contest, but they're publishing her book anyway!! Cool, huh?! The winner of the contest was Greg Allen whose book is called Chicken Boy: The Amazing Adventures of a Superhero With Autism.


I reached out to Greg, hoping he'd share his experience being affected by someone's Autism and writing such a great story to share with the world. 


"The story was based on my ten year old godson who I spend every Wed. night with going to his favorite restaurant with his mother and sister. Because of him, I became much more aware of autism over the years. His sister and I started making up a story one night about our little 'superhero' and that grew into this book. It was important for me to tell it from the child's perspective and I'm so aware this is but one story (one small story) on the large line that is autism. A friend told me about the MeeGenius author challenge and I joined 400 other manuscripts that were entered last fall.

By no means am I saying this is how all children react, but this is how the one in my life does and he means the world to me. I've received wonderful comments all through the voting process with the MeeGenius Author Challenge from people in the autism community that read the story. It was sometimes overwhelming and yet humbling to hear how the story was touching people. 

Winning the People's Choice Award came with publication of the digital book by MeeGenius, a $1500 prize and a library of the MeeGenius books being donated to my godson's school in New Jersey. So many people were asking me if they could get the book in print, I knew it was important to do just that. So I went to an indie publisher (who has published my adult books), took my prize money and used it to get the illustrations and layout design fixed to create a 32 page picture book that I could hand over to this publisher (as they had yet to go down the road of publishing children's books). But now I can give readers the choice between digital and print. And I'm so grateful to MeeGenius for the platform they gave me during the voting to come in contact with so many autism organizations. #TeamChickenBoy took to social media and were able to make contact with so many. 

People can go directly to the MeeGenius site to download the book here: http://meegenius.com/challenge/winners/
And the print book will be available later in April from ASD Publishing: http://asdpublishing.com/childrens-titles.htm


Thank you so much, Greg, for writing this story and reminding people that those with Autism aren't to be feared just because they're a little bit different; and that inside every kiddo with ASD is a superhero!!

Sunday, April 22, 2012

The power of possibility

I rarely post things like this, 
but this is pretty powerful and means a lot to me. 
Never doubt the possibility of change.
The fight is worth it.


President Barack Obama sits on the famed Rosa Parks bus at the Henry Ford Museum

Saturday, April 21, 2012

I don't wanna freak you out, but...

So, I was standing in line at Bread Alone, a great little bakery and cafe in Rhinebeck, NY, and a woman comes up to me and starts saying, "I don't wanna freak you out, but...." I figured she'd say something like, "you look just like someone I know" or "you totally just cut in front of me in line" or even "there's a giant dinosaur behind you." Instead, she said, "I don't wanna freak you out, but... are you Little Bird's mom?"

I know, right??!! I responded immediately, "ummm, you're freaking me out!!!"

Claudia works with the Chamber of Commerce in Rhinebeck. She'd reached out to me the last time I visited after reading the blog. After seeing that I'd be back in town, she wondered if she'd run into me on the streets- and she did! We had a great chat and giggled a bit about the unusual circumstances under which we met. Such a nice lady. Such a nice town!! Everyone there is friendly and happy. It's a great place to visit, so go. See Claudia and tell her I sent you!


Friday, April 20, 2012

Hey Girl...




*This Moment*

video

{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, April 18, 2012

The Rhinebeck Chronicles part 7

Just some pics of our trip to Rhinebeck to see Dr. Bock. There's not much in Rhinebeck for lodging besides B&Bs, and the one we stayed at this time was awesome!! It was Whistlewood Farm- a real farm with horses, chickens, and even a donkey!! We had a great time. My mom came with us and it was a full on girls getaway weekend! Here are a few pictures from our visit...










Tuesday, April 17, 2012

The Rhinebeck Chronicles part 6

We had a great visit with Dr. Bock, our awesomely amazing DAN doctor in Rhinebeck, NY. The last time we were there was in December 2010. Since then, I've had phone appointments with him every three months or so. It's been a great experience working with him. 

Overall, Dr Bock was very happy with what he saw!! We're going to add a couple more supplements and increase the doses of others. We'll do another round of vancomycin and nystatin to combat the bacterial overgrowth (dysbiosis) in her gut. He decided to increase the amount of methylfolate that Little Bird takes because she has trouble completing the methylation process and can't metabolize the folate, which we discovered with her MTHFR gene mutation (A1298C).  The last time we did a test of her Thyroid Stimulating Hormone (TSH) levels, something was running a bit high and we considered adding some thyroid meds, but chose to wait and retest in about 6 months. Well, it's about six months, so we're gonna go ahead and retest now. The addition of thyroid meds could help her to absorb nutrients and put on a little weight. She is 47.5 inches and 38 pounds at seven!! So, she's a skinny little bird.  We're concerned that she might be experiencing some malabsorption. So, stay tuned until I get the TSH results and figure out what to do. But, in the meantime, has anyone else done this with the thyroid?

The gut stuff is working, so we're not gonna mess with that. Keeping her on a GFCF diet helps to keep her gut working and functioning a million times better than before she was on the diet. It's been 3 1/2 years and I know that someday she might be able to tolerate those foods, but we're not there yet. Gut motility outweighs the convenience of those foods!! She's shown a tremendous amount of progress with the work we've done thus far, so we'll keep soldiering on! 

I snuck a pic of Dr. Bock to share with you

The man, the myth, the legend!!!

Monday, April 16, 2012

Special Bikes for Special Kids



A few years ago some friends gave Little Bird this bike that their kids had outgrown. I was so excited- look how cute that basket is! I got her all suited up with that helmet and everything and then.... nothing.  She looked SUPER cute, but just couldn't get the bike to move. 

For the bird, it's part motor planning, part low muscle tone, part sensory, all too tough. Still, at 7, she can't get a bike to move. She's not alone. It's actually very tough for many kids with special needs to learn to ride a bike. So many kids with special needs struggle with low muscle tone or even just a tough time getting their bodies to move the way they want them to. Riding a bike is a huge milestone and a feeling of great independence and accomplishment to so many kids. The good news is that there are great, adaptive bikes out there for kids who might otherwise struggle. The bad news is that they're often very difficult to get ($$$). 

Friendship Circle has a plan! 


The Great Bike Giveaway: Special Bikes for Special Kids will give 15 (maybe more!!) kids with special needs adaptive bikes!

Who: Friendship Circle and a bunch of different adaptive bicycle companies
What: Special Bikes for Special Kids!!
When: Submissions will be from April 5th - May 10th (voting takes place May 13th - 18th)
Where: Facebook! FC will be running this contest nationally via Facebook. Here, look for yourself! 
Why: Because every kid deserves to feel the wind in his or her hair and the freedom of riding a bike.

and the most important question...
HOW: You'll have 30 days to submit and entry for this contest. Parents will submit a photo or drawing along with a letter (400 character description) explaining how their child would benefit from one of these adaptive bikes. Fifteen winners from across the United States will be chosen based on a vote-a-thon held on FC's Facebook page for a period of seven days!!

Alright, riders... start your, ummmm, pedals!!



Thursday, April 12, 2012

The Rhinebeck Chronicles part 5

Oh, hi. I just realized that I haven't posted about the fact that I'm taking Little Bird back out to Rhinebeck, NY to see Dr. Kenneth Bock for a follow up visit. Last time we were out there was December 2010 when we began what I call the New Deal protocol. I'm so excited to see him and for him to get to see how great this girl looks after we've worked so hard to clean up her gut. I have phone appointments with him about once every third month, but this will be our first return visit.

In 15 months, we've done just three courses of antibiotics (vancomycin) and antifungals (nystatin) to combat the dysbiosis (bacterial overgrowth) in her gut. The year or so prior to that, we were using an antibiotic (flagyl) every other month. Each round brought amazing results, but the bacteria was coming back every time and we'd have to re-treat. With this combo of vanco/nystatin, I was seeing good, solid results for about 5 months! She's so great about taking the meds, too. Our local compounding pharmacy flavors them raspberry and tutti-frutti and they're totally tolerable. With the flagyl, I had to give it to her in the bathroom because she often vomited it up from the taste. Gross.

Of course, a big part of the "New Deal" has been the supplements we added and changed. The rotating probiotics, the ProEFA oil, the PhosChol liquid, and the pycnogenol have been my favorites. She's on a lot of other supplements, though. The B12 is great, but we've discovered her mutation of the MTHFR gene, making her unable to properly go through the methylation process, so instead of methyl B12, we do the hydroxycobalamin B12. She was tolerating shots alright until she refused them. She seems to be doing fine with the B12 nose spray, though.

So, anyway.... yes, we're headed back to Rhineback. Like, today. Getting on a very small plane to Albany, then driving about an hour and a half to the tiny and very quaint town of Rhinebeck. My mom's coming with us. Just the three girls! Stay tuned for all our adventures!


Tuesday, April 10, 2012

New Day, New Autism Study



Autism may be linked to obesity during pregnancy



This study mentions that with the typical odds being 1 in 88, obesity in pregnancy increases those odds to 1 in 54. It's shocking that they continue spending money on some of these studies. So far, we've heard that the following things increase the odds of having a kid with Autism:

  • living by a freeway
  • fluoride in the water
  • cell phones
  • closely spaced pregnancies
  • not breast feeding
  • older parents
What am I leaving out? I'm sure there are more. I didn't live by a freeway, drank filtered water, she's my one and only, I nursed for a year and a half, I was 26 when I got pregnant. Oh, but I did gain a lot of weight in the pregnancy. Forty-five pounds. What? Still, I'm pretty sure that put me up to about 145.



The National Institutes of Health helped fund this study, by the way. They're the same ones who have only spent 0.6% of it's research budget on Autism related studies.


Monday, April 9, 2012

Autism Financial Factoid

Autism receives less than 5% of the research of many less-prevalent childhood diseases. The National Institutes of Health spent $169 million of its $30.5 billion budget on Autism research. That's just 0.6% of its total funding.




Saturday, April 7, 2012

Neuroplasticity FTW!

I first got introduced to neuroplasticity by Dr. Norman Doidge's book "The Brain That Changes Itself." It's a great book detailing many different stories of the malleability of the human brain. Nothing is permanent, everything is plastic.

Just came across this video online and had to share it with you. The human brain CAN change itself. Never give up!


Friday, April 6, 2012

*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

(wearing a froggy hat at her school's passover seder)


Thursday, April 5, 2012

Immaculate Baking


Last year, we discovered the Immaculate Baking Co's GFCF chocolate chip cookie dough. Definitely the best we've found. Little Bird likes it and I like it, too. I kept checking the grocery store, but couldn't find any other GFCF options from them. A few weeks ago, I wrote them a little note, thanking them for making these delicious cookies and begging pleading kindly asking them to produce more GFCF types of cookies (helloooooo oatmeal raisin!!).

I got this very nice note back in the mail last week:


So I highly recommend Immaculate Baking Co. Great company, great philosophy, great community involvement in the arts. Oh yeah, and great cookies!!


Monday, April 2, 2012

World Autism Awareness Day 2012


Today is World Autism Awareness Day!
Did you know....

- 1 in 88 children is diagnosed with autism
- 1 in 54 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

Little Bird and Me!
Just like I did it in 2010 and 2011, I invite you ALL to show me your blue by sending me pictures of you wearing BLUE today to show support and bring awareness to Autism! You can email them to me at
TheRealDaniG (at) gmail (dot) com 
and I'll be adding pics to this blog post all day long!!

Little Bird's Grandma
Little Bird's Uncle Matt's blue light
 
Evie
Allie
Debbie and Sophia

Ben


Shay
Lisa, Shay, and Brooke's house

Christian and Danielle
Blue Jean Baby Samantha

Rachel, Abigail, and Hannah

Tony

Jen with little R and baby J
Laura
Jayden

Nicole
Chaya
Chris and Sarah

Darla and Rory
Michelle, Ollie, and Finley
Marnie

Jeffrey
Brogan and Partners


Peabody mansion

Michael

Darla
Blue Lights at Pam and Rick's

Paige

Arlene
Sarah, Logan, and Brandon 
Alyssa

Light It Up Blue


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See, it's not just my mom! (since Jan 1, 2010)