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, February 28, 2011

Blog Gems: Think Happy Thoughts

Happy Happy! Joy Joy!

Participating in Blog Gems is so much fun. Basically Jen at King and Eye comes up with a topic and then urges us to "air our archives" by linking up to an old post on that topic. This fortnight's topic is "happy thoughts." I've chosen a post from June of 2009: That's a Conversation!



Thursday, February 24, 2011

Making someone proud

On Tuesday November 5th 1996 I was 19, living in San Francisco and about to vote in my very first presidential election. I was nervous and excited. Coming from a politically and socially aware and active family, this was a lot more than just a civic duty; it was exercising a right and a rite. I love voting. I take the bird with me into the voting booth just like my mommy took me when I was her age. I love that I have the right to do it and I do it often. In fact, that first time had such an effect on me, that last April when Greg and I visited San Francisco, I walked past that Post Office on Taraval Avenue and excitedly pointed out "that's where I voted for the first time!"
I was proud of myself that day. But after years of listening to Gene, my teacher and friend, go on and on about the importance of participating in the political process, I knew he'd want me to call him as soon as I'd left the building. So I did. And he was so excited. He was in his 60s at the time, so he was no stranger to the polls, but I knew he was living vicariously through me as he relished in the excitement of a first time voter. He was so excited and very proud that over the years we'd spent together he'd instilled in me a true passion for being involved in my community and being a part of the process of working to make a difference in the world around me. Of course, it helped very much that I voted for Bill Clinton that year (which I'd do every single year if the laws allowed), as Gene was a lifelong and staunch democrat.
As the years passed, and I moved away from California, we still remained close and often discussed political and social issues. He was always proud of me and loved me and never afraid to tell me. Of course, I think he understood just how mutual the feeling was. Especially that day in 2004 when I called him to tell him I was having a baby and that no matter what it was (boy or girl) I was naming it after him. But, that's another story entirely....


Mama's Losin' It
This week's writing prompt:
Describe a time when someone was proud of you

Wednesday, February 23, 2011

New Deal Update 2

Ok, so it's been about a month since I've written an update on the New Deal (our newest course of biomedical treatment). Right now here's what the bird is on:
Creatine, Citramin, Vitamin D, Cal/Mag, Pro EFA, Vitamin E, CoQ10, Buffered C, Enzym-complete with isogest, methylfolate, pycnogenol, and 4 probiotics: symbion, pro-bio, probiotic complete, theralac.

About 2 weeks ago, she started a month long course of Nystatin (anti-fungal) and she's one week into a month long course of Vancomycin (antibiotic). We haven't seen any major symptoms of die-off, though she has been giggling a bit more to herself and I've definitely seen an increase in proprioceptive seeking behavior.

Most of this is meant to clean up her gut and help her brain function and fire a little bit better. I'm still waiting... Actually, we have seen some nice progress in her overall functioning. Better attention and better speech. I'm not seeing any positive changes in the social arena, though. And since I now you're all wondering: she's been pooping pretty well and I'm averaging only once a week of miralax.

About 2 weeks ago I had a follow up phone visit with Dr. Bock's office. We went over some results of the many tests we ran to get baselines and an idea of what we're working with. Almost everything was normal (vitamins, minerals, metals, metabolics, parasites, etc). Her thyroid tests came back weird. One test indicated that she's got an overactive thyroid while another indicated a sluggish one. We will retest in a month or so. The most interesting thing that came from this was the Methylenetetrahydrofolate Reductase (MTHFR) gene mutation. extra credit: based on the acronym, guess what we've nicknamed this mutation?
Typically if a kid has a reaction of hyperactivity with Methyl B12 shots, they test to see if there's a genetic mutation on this gene indicating an inability to handle the methylfolate. Little Bird has a double positive (this is not as good as it sounds) mutation for the MTHFR gene A1298C so she will have trouble generating methylfolate (a basic under-functioning of certain pathways). All this means that we will be trying Hydroxy B12 injections instead of the Methyl B12. However, the compounding pharmacy  can't get the shots because one of the ingredients is on backorder. And so, we wait.

I am beginning to consider some HBOT (hyperbaric oxygen therapy). Not only will this therapy likely help with gut bacteria, but it's also known to help those who've suffered brain injury. Has anyone done this? What am I thinking? Of course some of you have- we've tried everything! So, what do you think?



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Monday, February 21, 2011

Autism: The Musical

Last weekend I went to a great event put on by the Jewish Federation's Alliance for Jewish Education in my area. This group does really awesome things for kids with special needs in the area. One of my favorite programs is called "opening the doors" and helps provide opportunities for kids with learning disabilities and "other special learning needs" to be included in classes with their typically developing peers in Jewish schools. They are currently serving 700 kids in metro Detroit. Yeah, I sit on the special education committee there (I have a problem saying no to volunteer opportunities!!).

They recently brought Elaine Hall out to talk about her experience raising her teenage son, Neal, who has Autism, and to show her award winning documentary called Autism: The Musical. It was a great event and there were tons of people there. If you haven't seen this film, I recommend it.


I'd never seen it before. People ask me all the time if I've seen this and/or the Temple Grandin movie with Claire Danes. No and No. It's kinda tough for me to watch a lot of Autism stuff. It's sad. If you don't have a kid with Autism and you watch this stuff and you think it's sad- imagine how I feel; I don't get to just turn the tv off. I might get there one day, but today it's still pretty tough. It's also extremely tough for me to watch anything with teens or adults with Autism. Can't I just remain in a state of ignorant bliss and imagine that my little girl will never grow up and that the problems I think we have won't get bigger and bigger??! I'm gonna try.

So, I watched this movie, which is great and I found myself laughing a lot as an insider, at little things about autism that are just funny. No one with a newly diagnosed kid would ever think this stuff is funny, nor would they ever think they could find humor in some of this stuff, but it's there and they'll get there. 
There were many people in the audience who were educators, social workers, therapists, etc, and there were parents, too. As the parent of a little girl with Autism, a lot of this stuff is hard to see and hear little things like: 
"I don't want her to think there's anything wrong with her, because there's not. She's different, but not wrong. Unfortunately, most people don't see it that way."
"If he wasn't autistic, you could just imagine the possibilities."
"My job is to do everything I can to keep him out of an institution." (that's the one that really got me)

Throughout the movie, there was a young man and his mother in front of me (she later described him as autistic) and at one point he turned to his mom and (loudly) asked, "mom, why are you crying?" I couldn't hear her response, but I saw her kiss him on the forehead. Sigh.

Elaine Hall spent a few moments sharing some insight and experience as well. Here were my favorites:
-How do we include all these kids in typical environments? 
  peer volunteers 
  get resources for the teachers
  include a child's interest
  celebrate who a kid is and what she can do
-It may take a village to raise a child, 
but it takes a child with special needs to raise the consciousness of a village. 
Amen, sister!

Elaine and I last November when she came for a book fair
She's shorter than I am, by the way

Sunday, February 20, 2011

A special appearance by Jen T.

After my recent Cameo Appearance at Living Life With a Side of Autism, I suggested it be a crossover event where I post on Jen's blog and she posts on mine. Plus, this saves me a day of coming up with brilliant material to keep you people entertained. Any time someone who doesn't have a kid with Autism finds out that I've got one of those, they ask: well, is she at least high functioning? I understand that many people think high functioning means easier, or "better", but that's not nesessarily the case. I love the way that Jen debunks that myth and tells it like it is. I like Jen. You will, too. Take it away, @JenTroester!

My daughter Katie is 7 and has a high-functioning form of Autism called PDDNOS. High-functioning, at least for us, has never meant easy, and we have had our share of struggles over the years. Some so difficult our family has almost been driven apart.

As with any child on the spectrum, real glimpses of progress can be few and far between. Katie is no exception. It can be frustrating pouring copious amount of money into private therapy, to supplement what she gets at school, and see no change or, worse yet, regression.

These past two weeks have been tough. Katie has had a bad cold which has meant big time behavioral regression. I have been so stuck in that, I almost didn't realize the significance of what happened this morning. I was busy making breakfast when my son woke up and came downstairs. Katie stopped riding her scooter (her latest obsession) to look at him and say, Good Morning, Ben! On her own. Unprompted.

Most take something like this for granted, but it made me stop in my tracks. I have often times wondered if social skills are really something that can be taught, or if it's a "you know it or you don't" type thing. That one simple sentence, Good Morning, Ben, proved that even though social skills don't come naturally to Katie, she can learn them. It proved to me that all the time and money we spend on therapy is worth it.

Progress might be slow, but it's there. This morning hope was given back to me. I really needed that. 



You can visit and follow Jen's blog at Living Life With a Side of Autism and follow her on twitter at @JenTroester. I'm assuming you're already following me on twitter, right? (@TheRealDaniG)

Saturday, February 19, 2011

Guest Posting at Living Life with a Side of Autism

I recently had a brief cameo role over on Jen's blog called Living Life... with a Side of Autism. It's actually an update on a post I wrote last summer called Faith Through a Tissue Box. Remember that one? No? Oh, well then I'll wait here while you read it. Go ahead, read it

You had better absolutely must should have to can read my hilarious update on Jen's blog 
by clicking on this pretty flower picture 
(and then come back and comment on how much you loved it)


Friday, February 18, 2011

Because drunk babies are funny

Darling readers, please don't say I never gave you anything.
A big thank you to @bloozeman for understanding my level of maturity

And now I bring you a home video of Dani G as a baby:

*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, February 17, 2011

Balance. Or at least not tipping over.



We are so often defined by our circumstances or the experiences we've endured. If not by ourselves, then by others. I know that to so many people I am the mom to a kid with autism. 

It's easy for people to judge based on the little things they might find out right away. Before people have known that I'm Little Bird's mom, I've been the girl from LA., the girl with pink hair, the overly active volunteer, the girl at the gym, etc. And I am all those things, but I'm also very much the mommy of a kid with Autism. It's so much of what my life is. I read and research new things, I surround myself with others in the same boat to compare notes and share and exchange support. 
Balance

Another interesting balance is the one between acceptance and taking action. I've come to accept (mostly) that this is where I am: LB has Autism and is who she is. I continue to go through the grieving process for the dreams and hopes I'd once had for my experience of motherhood; I know that LB will never be a "normie". Still, I do not sit back idly and allow her disability to take over. I help her (and me) by getting tons of therapies, supplements to get her system working and firing at it's best potential. I find ways to help her to become a better person, giving her skills she will need to live up to her true potential. I'm not trying to cure her, but I'd be a big fat liar if I said I wasn't trying to make her better. Better, not cured. 

I don't want to be defined by this experience since it's not always a good time. But, I'm immensely proud of this gorgeous smart funny little girl and its an absolute pleasure to be known as Little Bird's mommy. Still, a little pink hair now and then never hurt anyone!


Mama's Losin' It
This week's writing prompt: 
Finding the balance. How do you manage?




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Monday, February 14, 2011

Show me some love on Valentine's Day

You know I have a Facebook page, right? You can totally "like" me. I mean, you do like me, right? 'cause I like you. I mean, I don't like you like you, but I like you. You know what I mean?





Blog Gems: Love

Alright, it's Valentine's Day and this fortnight's Blog Gems is about 
L-O-V-E.
Jen wants us to pull a post out of our archives about love. 
Here's my post about my love: Ten Years Later

Click here to read some others' archives

Sunday, February 13, 2011

Who Do You Think You Are??

"Who are you?"
-The Who

I don't really watch a lot of television. News mostly. I tivo Sunday Morning, the CBS newsmagazine which is an hour and a half long, so it takes me all week to watch it. Last year I also started recording a show called Who Do You Think You Are, where celebrities trace their roots to uncover things about their ancestors. I freaking love this stuff. I know very little about my own ancestry. I can only go back as far as my great-great-grandparents on both sides of the family. I would love to dig deeper and find out more and more. I'm thinking of treating myself to a month or two on Ancestry.com to dive into the G family! What a fun project, right?! You know, because I have SO much time to waste. Obviously, it's cool to find out things about my family's past, but I also wonder if there are family members that had "stuff": illness, brilliance, autism, etc.
My people are Jewish and that usually presents a problem when trying to find out about the past. So many families changed their names, lied about their ages and/or locations in effort to protect themselves and their families. Many Jews get stuck around the time their family members "came over".

Have you tried to trace your roots? Have you discovered anything exciting?


Saturday, February 12, 2011

I'm Still Standing!

First I felt beyond flattered to be featured today over on the awesome blog Four Plus An Angel. Then I read the nice things that Jessica (who is a-may-zing) wrote about me and I got all mushy and gushy feeling. You should totally go read it....

Friday, February 11, 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

Wednesday, February 9, 2011

Don't think about it

When picking a name for my baby I considered all the important things: honoring someone special, picking something that wasnt so popular the kid would be one of 19 in a class, and considering what the bullies would come up with. I was Dani Fanny as a kid. Seriously, kids? Fanny is as all you got? Weak!!! 

So, say my bird's name was Cody, I was worried that kids would call him (Oh, did I tell you that I was convinced it was gonna be a boy so I never picked a girl's name? It's true. My bird has a boy's name. What about it?). Yeah, I was afraid they'd all call him "Grody Cody." I mean, "Grody" is something I was worried about? Man, I wish I could go back and have that be my biggest worry! 

Bullies... Right now, she's pretty popular. Kids call for play dates and don't mind that she doesn't really play with them- or play at all, really. She's sweet and kids like her. 
She's really cute, too. She has hip clothes (Lynn thinks it's all about her skinny jeans), and comes from super hip parents (or at least one). I've witnessed fights over who gets to sit with her at school, hold her hand on the way to the playground, etc. 



After taking a cue from the book Overcoming Autism, I've always believed in doing what we can to help her blend in: iPods, skateboarding lessons, cool clothes, etc. We will help her minimize the differences that kids see and look for. I always assumed that this trend of Little Bird being the freaking rawk stah that she is would continue. But last week I met with my friend F who's got a little guy with stuff said that her 10 year old was totally popular, play dates, the whole 9 yards at that age and then, the calls stopped. Not as many invitations, calls, etc. This has never crossed my mind. But, I know it could happen. 

Let's add this to the list of things I don't want to have to think about right now. Like swimsuit shopping and car insurance and the amount of calories in a small blizzard (chocolate with heath bar) from Dairy Queen.

Sunday, February 6, 2011

Is that chocolate?

Overheard in my home last night....

Me: Bird? What's on your face?
My mom: Is that chocolate?
Me: *sniff sniff* Noooooooo!!!!!

FML.

Pity me? Click on this professional juggler's pic.

Friday, February 4, 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, February 3, 2011

Snotorious B.I.G.

So yesterday was a snow day. Having grown up in Los Angeles, I'm just not used to this interesting phenomenon. Apparently, children everywhere wish and hope for these snow days, engaging in odd behavior like wearing their PJs inside out, doing something with a spoon, and other things I read on people's facebook posts, but didn't pay enough attention to. Little Bird's school doesn't close for snow. In fact, yesterday was the very first time they'd EVER closed for snow. It has now become clear to me why snow days are the bane of a parent's existence. By 10am I was over it. Gregory worked ALL day in the office with the doors closed and the bird and I got pretty sick of each other. You wouldn't know it by our extraordinarily cute pictures of the day:


Ready for snow!



 We baked a cake, she sampled the frosting.

GF/CF deliciousness

Nothing like a little snowy sensory play!

Later, we acted out scenes from Little House on the Prairie
This was technically my very first snow day, since we hadn't ever had a storm big enough to truly strand us indoors in the almost 9 years that we've lived in Michigan. I learned that snow is a lot of fun- for 10 minutes. More importantly, I figured out why people have more than one kid: to entertain each other on snow days.

How was that post? Good enough for a vote?


Tuesday, February 1, 2011

Tomorrow's a Snow Day

What? What do you mean "tomorrow's a snow day? No school?"

"YEAHHHHHHHHH!!!!!"


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The Lighter Side

I thought I'd take a break from the heavy stuff and share something light and fluffy. No, I'm not talking about our friend Big Daddy Autism, I'm talking about a few random things...

1) A couple days ago I was cooking dinner and Little Bird asked me to make her a bath. "I want take a bath please." In a minute, honey, I've gotta finish making your dinner. Little miss no-patience (yeah, she takes after me) stomped up the stairs. It takes a lot for her to stomp up the stairs because she only weighs 35 pounds. Apparently I didn't move fast enough and she let me know...
This is most of the contents of my bathroom counter and the top drawer thrown into the bath.
2) Over heard in my home over the last few days:
"No licking the floor, please"
"Can you please take the bread out from under the covers?"
"No more coloring on the restaurant walls"
"The words to the song are, 'there are bones in my body' NOT 'your bone's in my body'"

3) Everyone's worked up about the HUGE (we'll see) snowstorm that's supposed to hit tonight and tomorrow. Actually, I've lived here in the midwest for almost 9 years and I've never gotten more than 8 inches (of snow, people; of snow). So I'm excited!! I love some of the names people are coming up with:
snowpacolypse, snOMG, SnoBigDeal, snOprah, etc.
If we're friends on facebook, you saw this a couple weeks ago, but it's still AWESOME!

4) I'm trying so hard to be patient, but I can't wait til Adele's new album comes out. Until then, enjoy this video...




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