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, October 31, 2010


We did it! We made it through Halloween!! 

We went trick or treating with Shay and Brooke (daughters of my BFF Lisa)
Little Bird went right up to the doors, knocked, and then froze. Although a few times she belted out a Twit O Tweet or a Happy Halloween!

These are my two other favorite girls!!
Shay was Cat in the Hat, too, and Brooke was Dora The Explorer

We came home and I traded the chocolates she got with the GFCF chocolates I'd melted and molded into little flowers. As you can see, she enjoyed those just the same!!
At home, she helped me pass out candy to a few visitors, but then got bored with it and just watched Between The Lions and Electric Company while I did all the dirty work of the passing out candy: one for you, two for me...

This is a big improvement from last year! Hope your Halloween experience was just as... sweet!

Happy Halloween

Happy Halloween from the Cat in the Hat!!

Me circa 1980. Apparently I told my mom I wanted to be a "fancy lady." 
She must have heard "drag queen"

Happy Halloweeeeeeeen!!

Saturday, October 30, 2010

Small Things Saturday

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.

Here goes:

Today I'm appreciating my ability to be present and able to appreciate. In the past two weeks, I've been blown away by my bird's ability to function with what she's working with. For example, I picked her up from school yesterday (they swim at school on Fridays- amazing, I know) and the teacher told me that she was able to tread water longer than ANY of the other kids. Reminder: all the other kids are normy kids in her full inclusion classroom. So, this means that my little bird with the muscle disease out-treaded (a word?) all those other kiddos!! She is amazing!!

Friday, October 29, 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, October 28, 2010

Special Needs Blog Hop: Stress

The question for this week's Special Needs Blog Hop is "How do you handle stress?"

My answer: Not Well.

Thank you very much.

Okay okay, I'll give you more than that. I'm emotional. I wear my feelings on my face. No poker face AT ALL. I have a hard time separating logic from emotion. I react. Then I slowly allow logic back into the equation. Usually when applied correctly, the logic helps me recognize that things are actually okay.

One of the biggest gifts Autism has given me is the great ability to NOT sweat the small stuff. Many things have come up that would probably have driven me crazy years ago and now I can go, "meh... no biggie." When comparing most issues to the things that ARE big deals in my life today: where will Little Bird go to school? Will she ever have real friends? Will she ever be able to dress herself? Will she live with me forEVER?, That's when I put things into perspective REALLY quick!

So, I guess perspective helps me deal with stress. That and Xanax.

I get a babysitter once a week so my husband and I can go out together. I read books (most are not autism related). I workout (not enough). I eat sweets (enough). I talk about it. I talk about it to you, to fellow special needs moms, to the people who love me even if I'm a little crazy. So, thanks for listening and for helping me de-stress!

Wednesday, October 27, 2010

Step By Step

Just got home from dropping off the bird at school and I had such an interesting epiphany. You never know when some of this stuff will hit you and you just have to write it down and share it (especially if it means procrastinating going to the gym).

So, there we were, walking down the stairs to her classroom. About 6 kids and their parents came walking in after us and very quickly passed us on the stairs. I didn't hold her hand to hurry her along. I let her hold the handrail and take one step at a time. Left foot down, then feet together. Then left foot down and then feet together. She still can't alternate her feet going downstairs. It takes her a long time to get down those stairs. But you know what? She got down them. All of them. Yes, those 6 kids rushed past us and made it into their classes well before we reached the bottom step, but we reached it. She reached it. Every few steps I'd say, "c'mon, bird. keep it up. let's go." And there she'd go: left foot down, feet together. Even this is an accomplishment when I think back to her early days when we weren't sure she'd walk; when she worked so hard as an infant and toddler to get her weak little muscles engaged and moving.

And it hit me: This is how it goes for us. Yes, the other kids pass her by, but she makes it to the bottom (or top!) and there I am right beside her cheering her on, "c'mon, bird. keep it up. you're doing it! almost there." It takes her a long long long little bit more time, but she makes it.

Monday, October 25, 2010

Fall Swap #2

If you read the post Fall Swap #1, then you know I recently participated in a fun swap. If you didn't read it. Go do that now and come on back....

All caught up? Good. I've been waiting on this post because I wanted Heather to be surprised. She just got the package (and loved it)!! Read her post on the goodies here. So, here's the loot I sent to Heather in Chile:

Inside this box, Heather found a jar of cherry butter from the Franklin Cider Mill, a big piece of Mackinac Island Fudge, a map of San Francisco and the Bay Area (she's moving there), notecards with her H initial on it, 3 packs of halloween Pop Rocks, some booties that I tried to knit (she's pregnant) and a baby pumpkin!! Oh, and I included a Zee Avi CD because I think she'll like it. I had a lot of fun putting this all together for Heather.

Hope you LOVE it ALL, Heather!! Thanks again to Sherri for putting the swap together. Looking forward to the next one!

Friday, October 22, 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, October 21, 2010

Therapist Spotlight: Jessica

Jessica has been doing Occupational Therapy with Little Bird for three years now. That's a mighty long time. Her specialty is sensory integration. When she started with us, she'd spin the bird around and around and around and then watch her eyes to determine how well she handled movement and whether she was able to "feel" the movement. When you feel the movement of spinning like that, you get dizzy and your eyes shift rapidly (nystagmus). The OT will test the way someone handles movement by checking for a post-rotational nystagmus (PRN). They literally count the amount of seconds that it takes for a person's eyes to return to normal. The bird took 0 seconds. She was registering NO movement even when spun around like that.

Jessica got her to a place where she was able to register the movement, but then she began seeking it out by  spinning in circles and arm flapping, and crashing into things, jumping from the coffee table to the couch, etc. This sensory seeking behavior continues to this day.

Jessica got Little Bird started on a therapeutic listening program with music where the frequencies are modulated in order to hit, awaken, stimulate or calm different parts of the inner ear. We began a strict sensory diet of music and platform swing spinning and within a few months, the bird stopped spinning in circles. Little Bird has worked hard on her tone with Jess, too. It's always a workout and the bird is always tired after a session with Jessica.

A typical session begins in the purple swing, which my bird asks for the minute we walk in the door.
The Jessica sets up an obstacle course to work on balance, strength, and the feeling of where her body is in space (she has no idea).  Then they might do some tactile work like play with shaving cream, sit in the rice pool, or even jump in the ball pit. They spend some time working on fine motor skills too: stringing beads, pinching clothes pins, or handwriting (this should be called scribbling). A couple years ago, we were just working on keeping the crayons OUT of the bird's mouth, so the scribbling is an improvement.

All in all, Jessica's major role with us is sensory integration. She's always been very confident in Little Bird's abilities and her potential. Sometimes I'll call her and say, "I need you to tell me all good things so I can come down off this ledge." And she does. She really really really loves the bird. Like, her desk is covered in pics of the bird. And the bird loves her, too. The only trouble is that LB wants to play and have fun more than she want's to work; and she knows that Jess loves her so she really puts on the charm sometimes and tries to get out of working with that, "but I'm so cute and you love me" look. Sometimes it works. Little Bird is NO fool.

Tuesday, October 19, 2010

news flash

A few interesting news pieces I found...

Autism linked to jaundice in newborns, study finds

Little Bird did have a little bit of Jaundice, but it was not a big enough deal to even warrant lights. Interesting study, but I'm not so sure. Was your child with autism jaundiced at birth?

Autism Moms Stress Like Soldiers
Yep, sounds about right. However, we're on a never-ending tour of duty. Plus, we didn't sign up for this. 

Little Bird doesn't have any siblings, so I can't weigh in with my own experience, but I do know at least 4 families with one child with Autism who has a sibling with a speech delay or at least an articulation issue. Hmmmm.... Do you have a kid with Autism and another in speech therapy??

Also, remember back in the spring/beginning of summer when this was my "moment"? Well, this is that same tree in a different season...

Sunday, October 17, 2010

What is Autism?

My friend Aimee, mommy to the awesome Christian, posted this on her Facebook and I LOVED it. Check it out...

What is Autism?

Imagine if…

You had a bee buzzing around your head
And someone asked you to say the alphabet backwards

Imagine if…

You were in the middle of a really loud rock concert
And someone wanted you to name all your aunts and uncles

Imagine if…

You were wearing three pairs of gloves.
And someone told you to eat a box of raisins one by one

This is what things are like for me, a lot of the time.

I’m autistic.

Your brain is like the inside of a computer, full of connections and wires.
With messages to your body whizzing around telling you what to do

My brain looks the same as yours, except some connections work really well, and some work really differently.

And my brain wires can get crossed really easily.

So, if I’m doing something a bit funny looking… try not to laugh at me.

It’s just one of my brain connections clearing itself out.

And if I tell you something over and over… just ask me to stop repeating.

It’s just one of my wires plugged into the wrong socket.

And, if I freak out at some sound that you think is really normal… maybe help me get away from the sound.

It’s just because my ears have their own unique volume control.

And, if you think I’m ignoring you… I’m not.

I’m probably just focussed on something else, like a tiny spider on the ceiling on the other side of the room.

Autism is a different way of seeing the world.

And seeing things the way I see them is awesome, but it makes me really tired sometimes.

So, I might not always understand what’s going on.

And, I might need time by myself to think things through.

Or, I might crash or jump or swing for a while to straighten myself out.

Don’t worry if I don’t always do things the way you do.

Try to imagine what it’s like inside my head, then you’ll see…
I’m not being rude

I’m not being naughty

I’m not sick

I’m autistic

And I’m just being me.

Friday, October 15, 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, October 13, 2010

Fall Swap #1

A few weeks ago, I signed up to participate in a blogger swap that Sherri at The Claw started up. Basically,  it's a chance to spread a little love among strangers and a great way to get to know new people! It goes like this: person A gives to person B. B to C, C to D, D to A. Get it? But there are a lot more people. FUN!

I put together a box of stuff for Heather. She lives in Chile. Hmmm anything going on in Chile lately? I sent her package last week, but I don't want to tell you everything that's in it until I know she got it. I want her to be surprised!!

Yesterday, I got my package from Kelley. It was filled with fun and AWESOME stuff!! Take a look:

2 Books, a mug with birdies on it, bird magnets, hair clips for my Little Bird, fun fridge magnet clips, a pretty necklace and a bracelet with a pink ribbon!! There are also some ghiradelli chocolates, but they may not have lasted long enough for the picture. Yummy!

Thank you thank you thank you, Kelley!! I love it ALL!!

Tuesday, October 12, 2010

Inclusion: For her or for me?

"Decide what to be and go be it"
-Avett Brothers

I've said so many times how much I value inclusion for kids with special needs. It's so important to both expose kids with special needs to normies typical kids and vice versa. I pulled my bird out of her special ed preschool program when she was 4 because she cried when we pulled into the parking lot; the speech therapist said she didn't talk at school; and the goals on her IEP were way beneath her abilities but she wasn't showing them what she could really do. Obviously she didn't like it there but she couldn't tell me that. I found the inclusion program she was in last year and looked at it as a kind of social therapy: she got great examples of typical social behaviors from the other 17 kids in her class, and of course she had 2 amazing one on one shadows to help her along with every little thing (not two at the same time). She was getting good speech, OT, PT, play therapy outside of school, so I was willing to let go of the services she was getting in the public school, which I found to be subpar anyway. Last year was a success. She was able to blend in nicely (I mean, as nicely as she could) with the other kids and she really became just another kid in the class- you know, the one who kept her fingers in her ears and chewed on the plastic foods.

If you're new around these parts, I'll let you read this post, one of many that talk about how I felt abut inclusion. Go ahead. I'll wait here.

Ok, now after all that, I started wondering if this isn't the best fit for the bird. In fact, over the summer, I made a call to the special services department of our public school district to gather some information. I didn't like the lady who called me back and I didn't like her answers to my questions. They won't evaluate a kid who is not enrolled in their schools. But I wanted them to do an eval so they could tell me where they'd consider placing her so I could check out that program to decide if I agreed that was a good fit. Make sense? Well, not to them. In fact, they'd enroll her and use the last IEP they had on file for her, then have a 30 days trial/eval period before deciding where to put her. Huh??? The last IEP on file was when she was 3 years old. Two and a half years ago. That's a long time. So, I'd have to enroll her to decide if I wanted to enroll her. I dropped it and decided to put her back in the inclusion program again. The kindergarten program is a little different from the preschool one. There are about half as many kids in the class (this is a bonus!). There are actually only 2 other girls in the class and they were both in Little Bird's class last year. They definitely focus more on academics this year, which is to be expected. The bird can read, but not necessarily comprehend what she's reading (I'm guessing since she hasn't been able-or willing- to answer questions about whatever she's just read). She cannot do math. At all. She got a worksheet sent home from school yesterday and we tried to work on it today. It's basic: 1+1=___ 1+2=___ and I could hardly get her to sit down to look at it. Focus and attending are both major deficits for her. I used Annie's gluten free bunny cookies for counting since I know she needs visual aids. This whole exercise was a very painful one. I've planned on LB doing this year of kindergarten here and then entering her into the schools in kindergarten again next year. So, do I care so much about the academic piece right now? Or am I more concerned about the social piece? After all, isn't that why I put her in this program in the first place? I'm so confused.

This week it hit me like a ton of bricks- this might be a mistake.

I'm wondering more and more if I should reconsider a move to the special education programming in the schools. Would that be an ASD class or the new cross-category class? I really don't even know where she'd fit in. Oh, and I should mention that I know the teacher of the cross cat-class is the same one who we left in preschool special ed.

All this leads me to a much bigger question... why am I so attached to the idea of the inclusion? Why am I resisting the center based classroom? Is the inclusion program for her or is it for me?

Last month, I mentioned this to my friend Lynn and she said, "that's totally a blog post, man!" So, here it is.

My friend Becca recently asked me, "what do you want for her from school?" And the truth is, I want what every parent wants. But, do I need to step back and recognize that I'm not every parent? I do want to do what's best for the bird. I'm just not sure what that is.

Monday, October 11, 2010

New, improved look!

I've gotten a lot of attention over the past two days about the NEW LOOK of this here blog. It's gorgeous, isn't it?!! Please let me gush for just a moment about how amazing Sherri at headersforhire is. It literally took her no time to figure out what I wanted and how she could make it happen. And then voila! the blog looks like this now. Oh, and... she was sick when she did this. Yeah, she's that good.

Oh, and did you see the cute little button she made me, too?? It's over there <------- You should grab it and put it on your blog so everyone knows you like to read my stuff.

Before you ask, YES, Sherri can do stuff for you, too. She's super duper reasonable and just so creative. For realsies. Hit her up, yo.

So, all these messages I'm getting about how great/cute/beautiful/fun/exciting my blog looks?? Well, it's ALL Sherri. All I did was say "birds are pretty cool."

Saturday, October 9, 2010

How you like them apples?

This week Little Bird's class took a trip to the apple orchard. That's where this week's This Moment picture came from. She got to ride the school bus there (she loves that) while followed behind in my car. We got to drink delicious apple cider and eat amazing donuts covered in cinnamon and sugar. Yes, I let her cheat and eat half of one. I devoured the other half (look, I couldn't let her eat the entire gluten-y thing).

 We took a tractor ride out to the orchard and picked a bunch of apples. 

We were left with loads of apples.

So, I baked an Apple Crisp! YUM!

Friday, October 8, 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, October 6, 2010

The little bird fan club

Last weekend I ran into the mom of the little girl who was Little Bird's BFF in school last year. She told me that in her new kindergarten class (at a different school- sucks), her daughter had drawn a picture of herself and LB and told the class, "this is me playing with my friend {Little Bird}." Oh Em Gee, how adorable!! I love this kid and the fact that she's so comfortable with Little Bird. She seems to see right past her differences. Just amazing. We put a long overdue play date on the calendar.

In other school kid news....
A mom stopped me on my way into the classroom with LB. She said, "I took your book home last weekend!! It was great!" I said, "awesome. Who are you?" She's a mom of another kid in the bird's class. She said, "the book was great! I had no idea... {My kid} talks about LB all the time."

Wait, let me get this straight- the kid talks about the bird all the time but the mom had no idea (that the bird is different form the others)? That means that whatever this little boy has said about my bird "all the time" has never included details about her differences (fingers in the ears, flapping, no talking, etc). Whoa!

I really am so touched that this mom took the home to read with her kid- that she was interested enough or cared enough. She said she really talked about it with her kid, too. This is it, people!!! This is how we're going to create a more caring, compassionate society for different people to live in; it's gotta start with the kids!

Right now I'm feeling pretty proud of my advocacy, but mostly proud of my bird and the difference she's  gonna make already making in the lives of others and the world.

Monday, October 4, 2010

Lazy Sunday

"You can't tell people what they want to hear if you also want to tell the truth"
-The Hold Steady

For the past few months Sarah, play tutor extraordinaire, has been coming over on Sundays for 3 hours to work with Little Bird. This has become somewhat of a relaxing date time for Gregory and me. Over the summer, we'd spend these hours on our boat (soon to be sold), alone or with friends. Since summer has ended, we've found other things to do together; shopping (he's more into it than I am), walking around book stores (I'm more into it than he is), etc. This week we decided to get manicures (he's more into it than I am), and then go sit in a coffee shop and read our books (I'm more into it than he is).

We walked into the nail shop and just as I'd picked out my color, tons of little girls came into the salon. It was probably ten, but it seemed like tons. A birthday party to get mani/pedis? Ummm ok. Then I saw my friend's daughter (whom I adore) and I realized that this was a 5 year old's birthday party!! Wow. I know I'm completely out of the loop in terms of what normal parents do for their normal 5 year old's birthday parties, but I was kinda shocked. I'm in absolutely no position to judge what any other mother is going to do for her child, but... Okay, fine. It was also very hard to see typical kids the same age as mine doing, well, anything. So here I was trying to enjoy a little time off, a date with my husband and I was bombarded by the very thing that brings me the most pain. I looked over at Gregory and he had a sad kind of look on his face. I can read him well. He feels sad and sorry for me. Of course he's sad for himself, too. But I think he knows that this stuff is way more in my face than his. I see these kids more often, hear stories from their moms, and read their cute little stories as FB status updates. Still, I know it hurts him, too.

We left after my nails were 75% dry. That was enough. We made our way to the coffee house, shared a brownie, sipped out tea and coffee, and read our books. We had a nice time and didn't let the "nail shop incident" throw us off track or get in the way of our enjoying our time together. May that be a metaphor...  Yes, it's tough to see those kids and those moms, but it's not my path. We're taking a different path. We're taking a different road. And we're trying (hard) to make the most of it.

Friday, October 1, 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

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