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.

Tuesday, November 30, 2010

My thankless job

I had just washed Little Bird's cozy flannel sheets and the blanket we use on our couch when LB says/asks, "want mommy snuggle blanket?" I wrapped her up in the warm blanket, fresh from the dryer and watched her smile grow wide. Later when I told Greg about it, he asked me, "do you think she'll ever get it? All the things we do for her?"

People say it all the time: motherhood is a thankless job. Of course, most kids grow up and get hip to the sacrifices their parents make and eventually say thank you. This is another thing that normie parents experience that we parents of kids with special needs just don't get.  We don't get a whole lot of those unsolicited I love yous or thank yous. There was a study that someone did showing that if a stay at home mom was to be paid, she'd be making $120k or something like that. But, we moms (and dads) of kids with special needs also take unpaid part time jobs as occupational, physical, speech, and play therapists. I think that puts me somewhere worth the $5 billion mark. But, nope. I get paid in dirty laundry to wash, dinners to make, and messes to clean. Awesome.

But, I do get a bonus:


Sunday, November 28, 2010

Little Bird Needs YOUR Help!

This might be the most important post I ever write.


A lot of people have heard statistics like 1 in 100 children in the U.S. has Autism, or even scarier: 1 in 70 boys. Unless your life is personally affected by Autism, these might just be numbers. But to those of us living each day with the disorder, these numbers are frightening, especially because they keep moving in the wrong direction. Do you have kids? Are you pregnant? Are you planning on having kids? This could just as easily happen to you. 


1 in 100 babies
1 in 70 boys


Yes, those numbers are a big attention getter and seem pretty crazy. Wanna hear something even crazier?? 


Children with Autism in Michigan are denied insurance coverage. Insurance companies in Michigan DO NOT cover diagnosis, treatment or any services related to Autism


This means that many, many families who cannot afford the very expensive out-of-pocket expenses for therapies are forced to go without therapies for their children. They are left feeling helpless and hopeless. 
If you're reading this on or before Tuesday November 30, 2010, you can make a difference in the lives of 15,000 children and their families with a simple phone call. 


There are many dedicated people who have been fighting to push through legislation mandating Autism Insurance Reform in the state of Michigan. It is all coming down to Tuesday's vote. 
Please take a moment or two to contact one of these senators

Let them know you support Autism Insurance Reform and ask them to do the same.
We parents of kids with Autism need your help. We can't do this alone, but we can do this together.


I first saw this video on The Autism Mom's blog, and I felt compelled to share it all of you. Michigan's own Lieutenant Governor Elect, Brian Calley speaks about why he supported this bill even before he learned that his own little girl has Autism. 




Saturday, November 27, 2010

Small Things Saturday: friends who get it



About two or three years ago, I noticed an interesting shift in my life: my friends without kids seemed to be a lot more comfortable around us and autism than my friends with kids. I think it might have been because they didn't have their own kids, so they couldn't really compare Little Bird's differences to their own normie experience. Does that make sense? Well, soon a bunch of those friends started having their own normie babies and sure enough, we don't hear from them so much anymore. Sometimes, yes, but not as much. Maybe it's a coincidence or maybe it's because they're busy with their friends who also have babies, rather than 5 year olds? Maybe I'm reaching. But still... 


About a year and a half ago, we formed a pretty strong bond with some beautiful people who have now become like a little family to us. These people traveled with us to Israel in Sept '09 so you can go stalk my archives to look up my posts from that unbelievable trip. These friends don't have kids yet and they are so incredibly accepting and comfortable with Little Bird. They're not afraid to talk about it or ask questions. This is a pretty big thing when you think about it. One of these couples came for dinner last year and baked their own GFCF dessert so Little Bird could eat it, too. Another brings her books every time she comes over because she knows how LB loves books. Last night we did the whole gluttonous Thanksgiving meal (a night late) with another one of these couples. Not only did she bring LB a turkey toy, but she sat with her at the computer and got really excited about the fact that LB sat on her lap and engaged her in play. She was truly, genuinely excited. 


I love friends who get excited and passionate about my kid's triumphs and can really see progress. Another friend of this little "family" tells me he had no idea what Autism was before getting to know my family, and genuinely takes interest in our experience, trying to learn more about the situation. These are some of the people in Little Bird's corner, in my corner. I am so grateful. It's really no small thing.


Friday, November 26, 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

Wednesday, November 24, 2010

Wednesday Windows

I like seeing what's going on outside others' windows. Thank you Sherri for making this happen!

I'm really excited to share with you what's been going on outside my window...




A short list of things Little Bird is grateful for

I made my list, so here's Little Bird's list...

1) SuperWhy!

3) Udi's gluten free bread (toasted with cinnamon and sugar)
4) Miralax (she might not know it, but trust me, she's thankful)
5) The library
6) People who will respond when she repeats the same lines over and over and over
7) light switches: on off on off on off on off
8) Grandpa (please buy her an iPad for Hanukkah!!)
9) Amy's GFCF Mac n Cheese
10) these two (I hope)
Yes, he's this tall and yes, I was wearing heels
Happy Thanksgiving!!

Tuesday, November 23, 2010

A short list of things I'm grateful for




Alright, Thanksgiving. Let's do this. Again.

A few things I'm thankful for this Thanksgiving...

2) 

3) my BBFs Bloggy Best Friends. The girls (and boys!) who get what it's like to have  kid with special needs and offer understanding, support, and hope.
4) ALL the therapists who love and work with Little Bird
5) PBSkids.org, Starfall.com, NickJr.com which provide a lot of entertainment for the bird and a little more time for mommy to sit down (and blog)

6) Words With Friends on my iPhone (wanna play?)
7) Dropbox and friends willing to share music
8) My Keurig coffee machine
9) Looking back on This Moment photos
10) These two:


Monday, November 22, 2010

Just a rough day?

"Get over your hill and see what you find there
With grace in your heart and flowers in your hair"
-Mumford and Sons

One of the best interventions we've used in the past with Little Bird has been Flagyl, an antibiotic used to kill the bacterial overgrowth in her gut. If you've been reading for a while, you know I love this drug and I talk about it ALL the freaking time. If you're new, catch up and find out more by stalking reading through some of my old posts. So, we're on day 12 out of a 14 day course. She's been doing really well for the past month or so. Yesterday was not a good day. We took an unexpected trip to meltdown city, taking a right on stimmy street, straight through repetitive speech road. It was ugly. I had no patience. Not proud about that. She was actually really tired for most of day, too.

Trying to remember that this could be a form of die-off: the bacteria gets stirred up by the antibiotic and kind of activates the bird. That's probably my best case scenario, actually. Hoping it's die-off and that this will pass quickly. Gave her some miralax tonight to help get rid of the stuff that's in her. Going through the die-off period is always scary because it brings up all the feelings that come with a "dip", the down part of the roller coaster: is she really going through a "down period"? is she gonna come back soon? is this forever?

So, I heard this line in a song last night and it made me hope that we'd get over this hill... with flowers in our hair.

Saturday, November 20, 2010

Small Things Saturday: grandma's card


My mom loves to send these cards to Little Bird that play a song. LB always makes it sound like the remix: open shut open shut open shut. This one arrived a few days ago and she loves it.

video

Friday, November 19, 2010

Autism and the car accident

Just saw this awesome PSA over on The King and Eye's blog. Take one little minute to watch it


*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, November 18, 2010

Special Needs Blog Hop: Thanksgiving Memory


Wow, my favorite Thanksgiving Memory with Little Bird?? This is a little weird. See, we haven't properly celebrated Thanksgiving for a couple years. We live in Michigan and every member of our family lives in California. So, we don't get to do Thanksgiving with them often. In fact, last year, we didn't do it at all. Greg went to a friend's parents' house and I stayed home with the bird and ate pasta. I remember feeling sad and sorry for myself that night. The following night our friends, Rachel and Ryan, came over for a full turkey dinner (Greg cooks- score!) and they're planning on doing the same thing this year. Guess that'll become a little tradition. We have nothing planned again this year. I know, sad. I'm not sure we knew what we were getting in to when we chose to move so far from family.

2 years ago we went on a cruise through the Mexican Riviera with Greg's family. They served turkey the night of thanksgiving. It was nowhere near as good as my mom's or greg's mom's. In fact, Thanksgiving dinner is a specialty of both of theirs. Neither passed this down to me. 

3 years ago we actually did go home for the holiday. Well, two homes. We spent a few days celebrating with my parents and brother:










Then we headed to Greg's parents' where we got to celebrate with the whole family. It was the last holiday we had with our grandma.

I guess any holiday where we're all together is a good one- and something to be thankful for. 

Wednesday, November 17, 2010

My favorite photo


This is my favorite picture of Little Bird. I keep it on the side of the blog
(over there <------)
and I keep it framed on my vanity. She looks so determined to get up this ladder, even though motor planning and execution keeps her down.

This photo reminds me that she fights so hard to do some of the things that come so easily to others. She has a strong drive to get things done. She makes me so proud. She reminds me to be determined, too. 

 She did make it all the way up that ladder, by the way!!

Wanna see other moms' favorite photos? Here are a few.

Wednesday Windows


Here's what I found outside my window...


Check out Sherri's blog to see more about Wednesday Windows.

Here's something else... I'd kinda been stalking this bird. I saw it a few days ago but didn't have my camera. I kept driving by the same spot, waiting to see him again. He saw me coming and flew away. I didn't get the shot I wanted, but I did get him. 
Nikon zoom FTW!!


Tuesday, November 16, 2010

Like, you should totally "like" me

"Do you love me? 
I just gotta gotta gotta know!
Ain't that a groove?!"
-James Brown


Did you know you can like me on Facebook? It's true!! I'm Just That Way is on the ol' FB now. Just go and click "like". 

Do it. 

Now!!!

Monday, November 15, 2010

Me Too

"I wanna fit in to the perfect space
Feel natural and safe in a volatile place"
-Avett Brothers

Last week, I read about people who keep their child's autism diagnosis a secret, or choose not to tell people. It really got me thinking....

I do know some families who choose not to disclose their kids' diagnoses. Obviously, we are not one of those families. We tell. Autism is a tricky thing. Our kids typically look normal. If I'm in the grocery store and walking hand in hand with Little Bird, you'd really have no clue.... until she starts flapping her arms (assuming her fingers are not in her ears). Once she starts talking, anyone could see she's different. It's hard to understand what she's saying; so much of her speech is scripted. So, it's not like we can really hide it. Still, we'd never keep it secret. We are open and honest about everything we experience. Not just for me, but for you, too.

I truly believe that the most powerful words ever spoken are: me too. More than a year ago, a friend called me a talker meaning that I tell people what's really going on. That's really stuck with me for some reason. I draw strength from other peoples' experience.

A couple years ago, someone very close to me, S, had a hard time conceiving. S, like me, is pretty open, but it's not my story to tell, so I'm just calling her S, ok? She told a few of her friends. Some of them confided to her that they, too, couldn't conceive naturally and had sought the help of a fertility specialist. Until then, S had no clue these friends had dealt with this. Why?? Because both of these girls had lied and said they didn't use fertility treatments to conceive. For what? Shame? Embarrassment? Who knows. But I've found that when I remove shame from any situation, I'm way more ok to tell my truth. Through these girls, S found a great doctor and great support. There is so much support in the words me too.

That's what it's all about, really. Support. I need other people in similar situations. How ever would I find them if I didn't tell my truth? Some days I'm scared, sad, even disappointed. But never ashamed. Little Bird is the sweetest, prettiest, and funniest kid in town. Nothing to be ashamed of here! I know that I find more understanding and compassion from others when I tell the truth. I've spoken before about finding my "sisters": those who share a similar experience and are always there for me, sharing their own experience, strength, and hope. I never have to do anything alone, as long as I tell my truth.

Do you keep your child's dx a secret? Why? Why not?

Saturday, November 13, 2010

Small Things Saturday: coincidences

Appreciating the small things

There's a new kid in Little Bird's class. A girl. That brings the total number of kids back up to 10, after that insanely obnoxious little boy left a couple weeks ago. The new student is a girl, so now there are 4 girls and 6 boys. A very nice, precocious little girl who is younger than the rest of the kids, but was being moved up from Pre-K because she seemed ready.

Last night, we attended a Shabbat dinner for families of children with special needs at Friendship Circle. I spotted that little girl playing with Little Bird in the big "cheese pit".


What was she doing here? Well, turns out, she has two older brothers (twins) with Fragile X and Autism. This is excellent news for me! It means there's a family in the class who will understand, encourage acceptance, etc. Last year there were 2 kids in LB's class who had older siblings with special needs. It was great.

One thing that has really been great for Little Bird is having play dates with typical kids. But, not all parents have been so open to it. Some have and they're awesome. I have a feeling we'll be able to have many play dates with the new girl!!

Friday, November 12, 2010

Now I See The Moon

I never did see the documentary called Autism: The Musical. I've heard great things, though. It's a documentary which follows a bunch of kids with Autism as they create and perform a musical. Elaine Hall started up the Miracle Project, which was the group followed for this documentary. She wrote a book called Now I See The Moon recounting her experience adopting her son from a Russian orphanage, bringing him home to the states, and then later discovering he had pretty significant sensory issues and an eventual Autism diagnosis. I haven't finished the book yet, but I got a chance to hear her speak last night and it was a great story.

A few days ago, I got an email from my friend Sharyl in Los Angeles who said that her friend Elaine would be speaking in my town and I've just gotta go see her. I had already planned on going with my friend Jen, so it was an added bonus that I'd get to tell Elaine that we have a mutual friend. Of course, when I got up the counter to have Elaine sign my book and told her of the connection, she'd been expecting me. We took a photo because we knew Sharyl would love to see us together!


Elaine is coming back to town to speak again in February and she'll be showing the documentary then. Looking forward to it, and then telling you all about it then!

*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, November 11, 2010

Special Needs Blog Hop: A funny memory


Today's topic in the Special Needs Blog Hop is a funny memory of your child.

When Little Bird was a baby, I remember when other babies would grab toys from her and she wouldn't seem to care, because she wasn't grabbing them back and smacking those other babies over the head with the toys (well, that's what I would have done). At the time I thought it was so nice that she was so peaceful and could see that it's just a stupid toy. Of course, later I came to understand that behavior was somewhat suspicious! I remember when Little Bird first started really asserting herself and making her wants known. We still laugh as we look back at this video from a couple years ago. We were on a plane and got her a $30 pack of pringles. She decided they were ALL for her....

video

Wednesday, November 10, 2010

Wednesday Windows


So, Sherri at The Claw started Wednesday Windows last week. That's when I posted a photo of what was happening outside a window in my home. This week, I'm showing you what's happening from a different view outside the house...



Kind of a misty/gloomy day here

This next shot will lead you through a window into me...

Taken yesterday at Friendship Circle, where we went to play for a bit. Check out that static in her hair!!

What's going on outside your window right now??

Tuesday, November 9, 2010

Therapist Spotlight: Sarah

Sarah is our play tutor extraordinaire. I'm currently trying to convince her to drop out of graduate school (for the masters in speech) and break up with her boyfriend (whom I have never met but Little Bird loves) so she can move into my house and live with us forever to take care of Little Bird. So far she's not willing to take these steps. But, she did go on vacation with us for a caribbean cruise!! I'm hoping this little bit of bribery will do the trick :)



We'd been doing a PLAY program at home but I sucked at it. I'm just not a "play" kind of girl. ABA, I can do that- it's drilling and sitting at the table and circling yeses and nos and it's just way more my style. Free playing?? yuk. So, it became apparent that we'd need someone else in the house doing this kind of play with Little Bird. Our play therapist at the time told me that he knew the perfect person but that she'd been with another family and he'd get in trouble if he told me to steal her away. So, he suggested I just send her a message via facebook and say, "oh, I saw that you do with with so-and-so and I'm looking to get someone in our home doing some work with my little girl, blah blah blah." Well, it worked! She came over, got to know the bird and they both fell in love. They have a lot of fun together. Sarah just gets the bird. She knows the bird pretty well and gets really excited when she's doing well. That's an amazing measure of someone's commitment to my child: that she gets thrilled to see progress. In fact, about 2 months ago when I went out of town, Sarah stayed with Little Bird and while they're usually in our house, she took her to her boyfriend's family gatherings where she was blown away by how the bird was able to interact with other people (always adults over pesky, unpredictable kids). Her excitement and enthusiasm reminds me that the people who work with my kid are really committed and care so much about her. I love having people like this on my team.

Sarah is the best. She's been with us for about a year and a half now. And I'm not kidding about trying to get her to drop her life and her goals and just coming to live with us. FOREVER!!!


Monday, November 8, 2010

Here it comes again...


Here it goes again. It's coming. I can tell. I can just tell. You probably couldn't, but I look at every little thing through a big magnifying glass. Because I'm that mom. 

Little Bird has been awesome lately. On freaking fire. It's been about 3 weeks of kickassness (not a real word, but certainly applies here). She's actually been the way she is after a good strong 2-week round of flagyl. But the last time we did that was back in August. I actually can't believe we've made it this long without slipping into that danger zone of needing another round. 

Something is just a little bit off. I can see it in the littlest things: she shouts "it's dinner time!" when its not; She's talking a lot, but it's not about things that are happening right now or it's just little two word phrases she's heard somewhere- totally out of context; she's sleeping less than usual or more than usual- but it's unusual; The biggest sign is the lack of attention. It's been really tough for her to maintain her focus for more than a few turns of back and forth. She's also a bit cranky, too. But, I haven't seen so much of the stimmy behavior: less fingers in the ears, no increase in flapping. Maybe she's coming down with something; she was kinda sneezy earlier today and extra cuddly this morning. I have had to give her laxatives three times in the last 8 days or so (yes, I keep a log of everything that goes into her and everything that comes out of her). Oh, about that... I think I can smell the bacterial overgrowth in her poop. See, I'm that kind of warrior mom- completely tuned in to every bit of my bird. 

The above paragraph should clue you in to just how crazy this process of figuring it all out can be. It's a constant conflict in my head. I wonder about this and that; I analyze this and that, then I argue with myself. A few days ago, Greg said, "you seem to be having a great day" and I said, "well, I think my bird has been doing great lately!" He goes, "you do?" "Yeah, don't you??" His answer, "yeah, I guess so." And that was it... I was off and running with my thoughts. Wait, isn't she? Am I imagining this? Am I just in a better place because of changes in my own {better living through} chemistry? Possibly, but nope, I'm right. She has been great lately. I'm grateful for my very open and connected relationship to ALL of her amazing therapists (I promise there are more therapist spotlights to come) because they can tell me when they think she's doing great and when things are a little off. Everyone agrees she's been "on fire". But, I think we are entering the phase where she may begin to go through a tough time. It's been a long time since our last round of flagyl and it's probably time for another go of it. So, Wednesday afternoon, I'll visit the compounding pharmacy that mixes it up for us without the additives her little body doesn't need, but with the strawberry flavor!

In the past, I've waited as long as I could before putting her on the flagyl, but it's already been a pretty long time AND I've learned that I don't need her to exhibit signs of discomfort and total dysregulation before I take action. Even though I've been doing this with her for a while now, so much of this disorder and the treatment of its symptoms feels new to me. I'm constantly questioning myself, her symptoms, and her doctors' ideas- or lack thereof. It's constant. You can see this inner turmoil that I go through, this struggle to make sense of something that is just so senseless. That's why I keep the log, because so much is just so day to day. Hour to hour. Minute to minute.


Sunday, November 7, 2010

I'm Fierce!





A couple weeks ago I received an amazing bloggy award from the ridiculously awesome Lynn, the Autism Army Mom. It's taken me a little while to accept the award mostly because I haven't stopped blushing since reading what Lynn wrote about me. Take a little look:

Who else?  Especially when the word "fierce" is involved.  Dani is fierce in both the she-wolf-mama-bear sense of the word, and the little-elfin-dude-from-Project-Runway sense of the word.  She fights every day tooth and nail for her beautiful Little Bird, and freely cops to the terrific highs and lowdown lows of raising a child on the spectrum.  She blogs with honesty, humor, and more than a little poop talk...which I for one never get enough of.  I was lucky enough to comment after Dani one day on SITS daily roll call, and I've called myself a fan ever since.  I also call myself an in-real-life friend because I actually got to meet her in person, and we have each other's cell numbers which we can call and send desperate texts to night and day...like a Bat(Shit) Signal over our fucked-up little Gotham City.  Stay fierce, you hot tranny mess Dani G!


Whoa, right?! I mean, I don't even like myself that much! Ha! In all honesty, I don't even know what this means, but I feel like I should growl or something. 


Here's my fiercest (a word?) photo...
Grrrrrr!

And now, I have to pass this award along to another mom whom I think is FIERCE! So, I proudly bestow this honor on Tulpen of Tulpen's Bad Words

Saturday, November 6, 2010

Small Things Saturday: normies

This is a new movement, started by a few moms like me: smart, funny, gorgeous, with a side of a kid with special needs. We're spending our Saturday mornings appreciating the small things. It might just be a pic, a paragraph, a line or two.





Ok, typically I do not feel so grateful for "normies" or their constant reminders that things are anything but normal in my home. But... there are some that I L-O-V-E love! There are a few kiddos who really love my kid and are somehow okay with her differences. We had a playdate with one of those kids yesterday. I love Jolie and I love her mom. And they both love the bird; totally and completely accepting. In fact, Jolie's mom first "met" me right here. She found my blog through a beautiful, wonderful mutual friend of ours and we connected and the rest is history. Today we will have a playdate with the little girl who was in the bird's class last year, took her under her wing and showed me that there really ARE kids in this world who will see more to the bird than the fingers in the ears or the flapping or the muddled up speech. Thank g-d for some of the normies!!

Friday, November 5, 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, November 4, 2010

What I love most about the bird

This week's question is What Do You Love Most About Your Child?




Tough question for me. There are just too many things I love about Little Bird.

I love her sweet smile. I love how excited she gets when one of her favorite songs comes on. Right now her #1 favorite song is "Fancy" by Drake. I love how she always wants me to sing along to songs we hear: TV show theme songs, songs on the radio, songs we hear in the grocery store; doesn't matter, "want mommy sing it!" I love the look she gives me when she is slowly reaching for something she knows I might deny her. I love that she wants me to get in the bath tub with her. I love that she loves and thrives on praise. I love that she loves books. I love that she works hard and is willing to work hard- even when she's tired. I love that every time I tell a new therapist that they'll fall in love with her, I'm right. I love that no matter what, I'm the first person she will run to if she's hurt, sad, disappointed. I love that she loves her mommy.

But the question is what do you love MOST about your child. So, I guess that would be her giggle. I love to hear her laugh. Whether it's within context or that odd something-is-going-on-in-her-head-that-she-can't-express giggle. It's the best little giggle in town!!

So what's your favorite thing about YOUR child?

Wednesday, November 3, 2010

Vacation photos

Who doesn't want to see someone else's vacation photos???

In yesterday's post I mentioned that we recently went on a little trip through the caribbean on a big, big boat. It was a week long adventure starting in Florida where I got to meet up with my high school BFF, whom I hadn't seen in about 12 years or so...
It was amazing!! I got to finally meet her husband (who is a formidable Words With Friends opponent) and her two delicious baby boys!

Then we headed off on the high seas, visiting Puerto Rico, St Thomas, and St Martin.
We brought the most amazing play tutor/SLP student/caregiver in the land, Sarah (I'll do a therapist profile on her soon). She helped take care of Little Bird and managed to get some therapeutic work done in between swimming, playing, swimming, and more playing.
Ok, here are just a few pics...
Old San Juan, Puerto Rico 





Swam like a little fish!


My little pirate


She read a lot

To the other kids onboard, too! 












She slept so well- must have loved the rocking of the boat!!
All in all, a very successful trip. Can I go back now??
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See, it's not just my mom! (since Jan 1, 2010)