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, May 30, 2010

Guest Starring Role

I recently played the part of a Guest Star on my friend Leigh's blog, To Kid or Not to Kid. She's in an interesting space in her life, trying to decide whether or not to procreate. I've known Leigh since I was a kid and she's always been creative, so it's no surprise that she's come up with such a great idea. I love reading others' perspective and the experiences that have shaped said perspectives. A few days ago it was my turn. Go ahead and check it out: Dani G's guest spot.

Friday, May 28, 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, May 27, 2010

Random Thought Thursday

-Ummmm, listen, Mr. Turtle. I've got places to go. Can we speed this up a bit?


-I wonder if the local grocer needs to turn the lights down a little bit. It seems it's too bright for some of the ladies around here, as they seem to NEED their dark sunglasses in the market. Ladies, please let me remind you that this is not 90210 (trust me), and that this is the kind of little midwestern town where little turtles cross the 2 lane road (see above). Drop it down a notch, girls.


-This was the conveyor belt at the apparently very bright grocery store a few days ago. All I really wanted was pizza, potato chips, chocolate chip cookies, and vodka. This is what I ate instead.



-This was a big TV week. I'm feeling "jacked" after losing both Jack Shepherd AND Jack Bauer this week. Might console myself with Jack Andcoke. Get it? Get it yet? How about now? Zing!

-Why am I called a stay at home mom if I'm NEVER home?

-Art Linkletter died yesterday. The only impact he made on my life is that I never did LSD because my mom told me that his daughter jumped out of a window while she was tripping her balls off during an acid trip. My mama taught me well.


Tuesday, May 25, 2010

Just because

Just because she's back; more focused, more attentive, more engaged...


Monday, May 24, 2010

Coming back

Well, it looks like this regressive period is ending. *knocking wood, biting tongue, throwing salt*
There were a good 7 weeks there of complete and total dysregulation. If you're not familiar with sensory processing, you won't get this at all. But, she was just off. Extra sensory seeking and her need for extra input was interfering with her ability to focus, attend, and participate in anything in school; she was more stimmy and scripty than usual and I went crazy. Crazy!! 7 weeks is a really long time.

I mentioned in this post that sometimes when kids take a step or two backwards, it's just so that they can leap forward. The process of gaining and honing new skills is sometimes too much for their little brains and they need a little extra time to organize all this new information, so they regress a bit until they're ready to show off their new skills.

So far I've been able to see Little Bird's greatest amount of progress in the gross motor department. Not only can she now jump off of a step with two feet, but she's jumping off everything with to feet and landing each jump perfectly. She's walking up stairs with alternating feet with more fluidity and confidence (this helps her keep up with the rest of her class, eliminating more differences). A few people have said they notice better articulation, but since I'm with her every day it's hard for me to notice that. Almost everyone I have seen thinks that she's WAY taller. This comes up a lot: the growth spurt. It's hard to believe, but a growth spurt can actually totally throw a kid's sensory system off.

I'm definitely going to attribute a lot of this "coming out" credit to Flagyl. It's amazing how much better she is when she's on this drug. Amazing! My kid is a "gut" kid. She just is. Looking forward to getting the results back from the last test we did to check for a baseline of bacteria in her gut. These results will show us where she was just before this round of flagyl and I'm interested to see how they compare to the last time we tested her, which was before we ever treated with flagyl (6 months ago).  But, regardless of what the tests say, I can't deny the results I'm seeing. Everyone's seeing them, really. It's all a big experiment, isn't it? I'm now going to sit back and see how long this ride lasts, so i can determine how long to go next time before the next round of the drug. This time I think I waited too long and I think the bacteria came and grew back will full force. They're sneaky little bacteria and I'll always have to work to be a step ahead of them. All in a day's (or lifetime's) work.

Saturday, May 22, 2010

goosing around

Reason # 4080 I like Springtime in the Midwest:



It's fun to see the goslings as teeny yellow fuzzballs and to watch them get bigger each week until they eventually turn into big, mean geese.


Speaking of baby birds, I caught this mommy and her babies last week (but these are ducks, not geese)

Okay, one more of a baby bird and her mommy:

Friday, May 21, 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, May 20, 2010

Random Thought Thursday

Random Thought Thursday

-I officially have a massive crush on Aziz Ansari. I spent about an hour watching clips on YouTube and I was literally laughing out loud. On my couch. By myself. This is my favorite one.

-I'm not great in the kitchen, but I try. My girl wanted french fries, so I decided to bake some:
At least they're not ALL burnt.

-A few days ago we walked through the grocery store and hit the fruits and veggies first. My little bird was like the very hungry caterpillar. She ate her way through the produce section. Some grapes, one strawberry and two peaches. We stuck the peach pits in a plastic bag and put them on the conveyor belt at check out. The lady was confused and didn't charge us. Obviously I would've paid for them. In fact, I would've paid someone just to get fruits into my kid. I still can't believe she ate all that. Although the next day she pooped 4 times (this is mostly due to the flagyl she's on) and so, trust me, I believe it.

-While driving a few days ago, I couldn't help but notice that this woman was reading a magazine while driving. If you know this woman (or any woman in a red mercedes with a camo hat), please point out how bad this looks. Like, the whole look. Oh, and I was the passenger in my car; I wasn't driving while photographing. Everyone knows DWP is not cool.


-This week is Shavuout, a Jewish holiday honoring the time that the Jews were given the Torah. (Yes, we're Jews)  So, in school, Little Bird made a ten commandments project. There are loads of Asian kids who attend LB's Jewish preschool and it's always a little funny to see art projects like this with names like Khodai and Jin.


Tuesday, May 18, 2010

Yeena

Like I said last week, Little Bird got a new shadow at school. I still miss Laura and I bet it's so hard for her not to be in the classroom with LB. In fact, I bet she wonders all morning long whether my bird has peed on the potty, eaten her snack, participated in story time, etc.

So, the new girl... I think it's working out. She's super sweet and I can tell she already likes the bird. Most people do. Seriously. I was telling my mom yesterday (she's out here visiting) that all of Little Bird's therapists kvell over her and talk about how much they love her. I'm not so sure they feel that way about ALL their kids/clients. She's a sweet kid. Gratitude.
at school, playing in the "kitchen"

The new shadow, Lena (Little Bird calls her yeena), has impressed me beyond my expectations already. She's advocating for my kid and might not even know it. When the teacher might have made it easy to exclude Little Bird from having to participate in something, Lena will be sure LB participates, just like the other kids because that's what she's there for. Sometimes if a kiddo is having a tough time in the classroom, a shadow/paraprofessional/whatever will take the kid out and maybe walk him/her around the school, or something like that to help calm the kid or regulate their sensory system a little bit. Laura and I both thought that Little Bird was WAY too smart for that. She'll learn that she just needs to do X to get "removed" from the class and whatever they're doing in there that she might not want to do. I think Lena's been able to see this as well.

This is how it's probably gonna be... there are always going to be people who will love my kid and work hard to advocate for her in all areas of her life. Although, there's a part of me that thinks that some day Little Bird will be able to do this for herself. She's a pretty tough cookie, after all... and she has no problem saying NOOOOO. Trust me.

When I dropped the bird off at school this morning, the teacher pulled me aside and said, "I just want you to know that even on her worst days, she could never be as tough as some of the other children. Her behavior falls well within the scope of typical in this classroom. We absolutely love having her in this class. She's a great kid."  People ask me all the time what is the best therapy we've done, what's made the biggest difference for her. Without a doubt, the answer is inclusion. She has learned so much from the other kids. This is literally like social therapy for my bird. I will always fight for her to be in an inclusion environment- at least for some of her school day. It's definitely changed my girl for the better and there is no doubt that having a kid like Little Bird in the classroom has benefitted the typical kids in the classroom, too.

As sad as I am to NOT be seeing Laura every day and have her working with LB, I am really glad that Lena has gotten the chance to work with LB now, before they spend the summer together for camp. It's laying a great foundation for trust and love before Little Bird enters camp, which is gonna be a whole new world for her. But, with Lena by her side, I know she can handle it.

Friday, May 14, 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, May 13, 2010

Random Thought Thursday

-Hey, Canadian Geese: what the F is your problem? Why are you so mean? And get the F out of the road!

-Dear Michigan, you know it's Spring, right? I mean 40s and torrential rain in May is NOT working for me

-My mommy is coming! My mommy is coming! 2 more days til my mommy is here. She's gonna plant flowers in my yard again. She'll probably cook me delicious meals, too. Although she did ask me to make my delicious zucchini pasta for her this time.

-So... Sid the Science Kid. What, ummm, ethnicity do you think his family is?

-Since TV sucks in the summer (sorry, I don't watch the reality shows about dancing and singing with the D-listers), I'm thinking I'll do netflix or something to get whole seasons of shows I've missed that other people rave about. So far, I'm thinking Community (Joel McHale!!) and maybe Mad Men. What else should I get into?

-I've been reading Rodney Peete's "Not My Boy" (thank you, Susan, for lending it to me!) about his experience as the father to a kiddo with Autism. So, if you see me crying on the elliptical, that's why (yes, I read on the machines).

-And finally, I'm annoyed by the people who go nuts waiting for the closest parking space. How about you park a little further away and just walk? Trust me, you could use the exercise. That was the nicest way for me to say that, by the way.

Wednesday, May 12, 2010

A change is comin'

"So bye bye Laura
No one could take your place"
-Flogging Molly

The times they are a'changing. Little Bird's "advocate" (shadow) at school is being called to do some other work. Well, she'll still be in the building, but she's gotta move on. Sniffle sniffle. It's okay. Sniffle sniffle. It's always good to change things up every so often and have our kids work with new, different people. It's how our kids grow and learn to relate to other, new people. Actually, it's a whole lot harder on the adults than it is the kids! Sniffle sniffle. (Stay tuned for the story on the new girl)


This was the first time LB had ever been in an inclusion program with a shadow: I was nervous, uncertain I'd made the right choice. But almost immediately after meeting Laura, I knew my little bird was in good hands. In all fairness, bravo to Laura for putting up with a parent like me for this long. I'm not easy and I know it. I also know that both Little Bird and Laura have grown and learned from each other over the past 9 months. They're both a little a lot better off for being in one another's life. When the bird has a good day or makes some progress, Laura beams with pride, having fallen in love with my girl just like the rest of us. When LB has a rough day (or six weeks), Laura feels just as hurt and/or confused as the rest of us. She's a part of the team. Just because LB will have a new shadow doesn't mean that Laura won't still be a part of the team. Right, Laura? You are reading this, right? Let's make a deal: you promise to keep on loving, checking in on the bird, and being part of the process. Do it!! 


What an absolutely amazing difference you've made in our lives, Laura. Even if Little Bird doesn't recognize it yet (and she probably does!), she will. Oh, and me? I'll never forget it.

Monday, May 10, 2010

Biohazard


I really should add laboratory technician to my job description. I've been trying for about a week to catch Little Bird's pee in a cup so I can fill up these little test tubes, freeze them, and send them on their way to a lab for an Organic Acid Test (OAT). Every time she saw me with the cup, she'd suddenly not have to go anymore. She was literally avoiding me so she wouldn't have to pee in that cup. This afternoon I stopped by the ped's office for a "hat" (the thing you put in the toilet to catch pee) and I got it! Woohoo! Filled up the little tubes and they're in the freezer now. In the morning I'll send them off to the lab. I'm looking for a baseline measure of where she is right now before I start the next round of flagyl which will begin tonight. I've been waiting to get the pee before I start the meds and I'm so excited to start them because we have seen progress the two other times we've treated her with flagyl

The update on the gluten is this: I can't deny that she's been WAY more constipated since adding the gluten back into her diet. The constipation is a huge hinderance to connectedness and overall progress. So, sorry gluten. You're out. Can't say I didn't try. 

Sunday, May 9, 2010

a·maz·ing

amazing - inspiring awe or admiration or wonder


One more thing on Mothers Day:
Just had to say that I've gotten a few messages (text, FB, emails, tweets, etc) today from friends. Friends who are moms. Friends who are not. They all wished me a happy mothers day, expressed appreciation for the struggle I endure as the mom of a kiddo with special needs, and even said I'd inspired them. Four of them even used the term "amazing" to describe my motherhood. Wow. Amazing? Well, yes, some days I do feel kinda amazed and amazing. Mothers Day is a tough day for me. Thank you to those special ladies (and one special guy) who sent me special messages (DGL, JLR, JZB, JS, LDZ, LE, LLLB). I am grateful. If I left anyone out, I'm still grateful, just forgetful.


I read a post that Nia Vardalos wrote about Mother's Day on Anderson Cooper's blog. (side note: I really really really like him but I just don't think he'd be into me)
It reminds me that not everyone has the same experience and sometimes we must tread lightly with our words. Not everyone has a happy marriage, so when you publicly gush about how fabulous yours is, it could be causing pain for someone else. By the way, I think it's weird when you go on and on about how much fun you're having on your date with your husband, whom you love soooooo much. Get off your freaking facebook and enjoy your time with your wonderful husband. I'm immediately suspicious of people who gush like that. (just sayin')


I'm going to sign off now because my wonderful husband just got home and I'm ready to gush (to him) about how fabulous he is...

Hey Mama!

"Don't you know I was made to love her"
-Stevie Wonder



It's mother's day. Happy Mother's Day to all the moms out there. Especially me. And my mom and mother-in-law, too.

I got these beautiful flowers from my baby brother. So sweet!!


When we were out in California, my mother-in-law took the bird to a ceramics shop and they made this for me. I finally got to open it today.

 
This bronze sculpture came from my parents. Awesome!! It's pretty much how they cheer me on.

My motherhood experience is nothing like I'd ever imagined. But, it's mine. I'm a much better mom than I ever thought I'd be, and I'm not afraid to say it. 

CLICK HERE to read my mother's day post from last year 

Friday, May 7, 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. 

Thursday, May 6, 2010

Random Thought Thursday

I don't think this will stick, but I'm gonna try a 'random thought thursday'.


So, here goes...


-no matter how long I live here, I'll never get used to springtime roadkill; and I'll continue to believe that they're just sleeping.


-Dear Rolling Stone,
Thank you. Thank you so much!

-I think I wanna move into an assisted living facility. But I don't wanna wait until I'm 75. I wanna go, like now. Dude, they have Bingo!


-I love the show LOST, but sometimes I get distracted by John Locke's boobs.




-Damn, you, Parenthood. You make me laugh and then cry, only to make me laugh again. But, I always end up crying a little bit more. 


-Hmmm never noticed that cute dad picking up at school before


-I don't care if you say I tweet too much. I'm gonna keep on tweetin' (follow me @TheRealDaniG)


-It's been such a pleasure to go into restaurants in the past week and not come out smelling like an ash tray (no-smoking in restaurants law just went into effect in Michigan). But (or butt), I am worried that people will smoke in their cars more and then throw their butts out the window. 


-I'd like to formally nominate the guy down the street for D-Bag of the year award. He wears all black ALL the time, slicks back his hair (or what remains of it) and just bought a Bentley. In this economy. In Detroit. Wait, nevermind. No nomination necessary. We have a winner.


-Best text of the week came from my friend Becca: "I don't know if you planned anything for dinner tonight, but I am making a pot of turkey chili if you want to swing by and pick up some dinner for you guys."  I barely finished reading the text before I arrived at her door!


That's All.

Wednesday, May 5, 2010

A side of inspiration



For lunch today, I had eggplant parm, some salad, pineapple and a side of inspiration. Yep, you heard me. I attended a luncheon put on by Friendship Circle, where we got to hear from Randy Lewis, Senior VP of logistics and distribution for Walgreens. He's implemented an amazing program providing jobs to people with disabilities. He is such a dynamic speaker and he truly believes in his mission. As a parent of a 21 year old son with Autism, he gets it. 

Hands down, his best line of the day was "Why is it so important to work to create jobs for adults with disabilities? We're always talking about children with special needs, but people are adults for a whole lot longer than they are children"



Monday, May 3, 2010

The day I met Temple Grandin



This is me and my friend Maggie. We met the day after Little Bird was diagnosed. She'd been there. She's there now. But, now, we're in it together. Oh, and yes, Temple Grandin really does dress like this. Dude, she's totally stoked to meet us!!

Last week, I attended an all-day Living With Autism workshop. It wasn't called "Curing Autism" or "Autistic No More!" Living With Autism was about identifying and managing symptoms, and helping our loved ones with Autism reach their potential. There were breakout sessions with topics like: special needs trusts, the multi-disciplinary approach to diagnosis, picky eating, Applied Verbal Behavior programs, Co-morbid disorders (when one diagnosis isn't enough), etc. It was pretty well rounded. I looked but around didn't find the breakout session on the magic wand, unfortunately. But, I did run into a lot of people on our "team". I saw Little Bird's Play Therapist, DAN doctor, BCBA (behaviorist), new speech therapist, etc. Hail, hail the gang was all there. I loved running into LB's Occupational Therapist who was with her mom. She grabbed her mom and said, "mom! This is {Little Bird's} mom!" How nice is it that the therapist loves my kid enough to brag about her to her own mother? Well, we have worked with her for two and a half years!!


The keynote speaker was Temple Grandin, who is often referred to as the most successful person with Autism in the world. I hate that moniker. It sounds bad. Lots of people inside and out of the Autism world have become very familiar with her because of the HBO movie about her life that first aired in February. I still haven't seen it. Temple Grandin was like a freaking rock star in that room. She is revered by those in the Autism world. I think parents of kids with Autism are so enthralled with her because she is able to personify the disorder. She can tell us some of the things she was feeling when she needed to flap, spin, be squeezed. So many of our kids can't tell us that. She brought home to me the fact that there's a person inside there; underneath all the behaviors and stims (self-stimulatory behaviors), there's a person who has feelings and fears and real reasons for each stim. Let me be clear: she is still very affected by Autism; she has not been cured, but she has found ways to manage her symptoms. 


Dr. Grandin said some things that were pretty great. Here were some of my favorites:


-It's important to recognize a kid's strengths and weaknesses. It's possible to be in advanced calculus but need special ed for reading... and that's okay.
-Push them. Get them out doing things. Talk about everything.
-Autistic language is memorization. Scripting is the beginning (scripting is like a delayed echolalia. you can google it.)
-Teach flexibility of thinking by using different objects in teaching
-Teach social interaction through shared interests: school clubs, hobbies, classes that really interest a kid. This way, if they need to talk about one topic, this is a safe place to do it while practicing social skills.
-When a kid is acting out but can't express why, we must categorize the problem: is it biological or behavioral? Biology = sensory needs not being met? illness? some medical issue causing pain?  Behavioral = frustration because (s)he can't communicate? trying to escape a task? trying to get attention?
-Here are some hidden medical problems in kids with ASD: reflux, yeast infections, urinary tract infections, constipation, ear infections, H Pylori, etc. Many of our kids can't tell us if these things are bothering them, but you know your behavior would be affected if you had any one of these things!
-We must find ways to make accommodations for our kids who need them. Can't hold a pencil or write? get a keyboard. Can't tolerate scratchy clothes? buy soft ones. Whatever we can do to make daily living tasks easier.
-Autism is not an excuse for poor social behavior. Poor behaviors should be corrected in the moment. Even if it's over and over again.
-Fear is the main emotion that people with Autism feel.
-Meds can be used to bring some relief from symptoms, but there is no medication for Autism, we must focus on and treat the symptoms. It's possible to treat one thing and find another side effect. We must start slowly with meds for kids. People with Autism are sensitive to drugs and NEED low doses. We should always be able to see a result with a med: there should be a wow factor. But never expect 100% control of a symptom.
-Always ask am I seeing progress? If so, what you're doing is working!
-Temple Grandin herself uses medication as well as a gluten free and low-carb diet to combat yeast build up in her gut. She tell us that she feels a lot better on the diet. As well, she uses fish oils, and probiotics.
-One very interesting thing she said was "don't de-geek the geek." This is who these kids are.


I bought two of her books, and I even had her sign them...

I'm really glad I got to hear her speak. This won't be the only time. I just know it.

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