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.

Friday, July 25, 2014

*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, July 24, 2014

Growing Pains

J Bird is just about the age that Little Bird was at the first sign. Shortly after her six month check-up, I was referred to a neurologist who could only look and say yes, something was amiss. And so began the testing for brain lesions, metabolic disorders, and whatever else  would cause such low tone, etc. It was just low tone, right?- no biggie. So she wouldn't be an athlete. I could handle that.

I remember asking things like "Will she live with me forever? Will she go to college? Will she get married? Will she have a family of her own? Will she be normal?"
Seems crazy looking back and asking those things of someone back then. There was really no way to tell. So many factors up in the air: diagnosis, time, advances in medicine and therapies, opportunities granted to her, etc. I wanted to have some reassurance. I wanted the crystal ball. I wanted to know that everything was going to be okay.


I took her to see so many doctors. I'd ask the same things every time. 
"Will she live with me forever? Will she be normal?"

Of course now I still worry for her future. But I'm no longer wondering if she will get married and have her own family. I stopped asking if she'll ever be "normal." I know the answers. And that's okay. I don't wonder if she'll go to college. According to the director of special education in her school district, she's not eligible for a diploma, which she'd need for college entrance. Also, it's pretty clear that's just not something that's in the cards for her. And that's okay. 
Will she live with me forever? Probably. Of course, if that's not what she wants or if that's bit what's best for her, then we'll make other arrangements. Of course, most parents never think like this. Most parents don't worry about how they're going to support their child indefinitely.


At this point, I don't go too far into the future. Of course, I worry EVERY SINGLE DAY about what'll happen when I'm gone- or when I am still here but can't take care of her. But, I'm not nearly as hung up on those questions anymore. I know most of the answers and I'm okay with them. I'm sad, of course, but I am okay. Instead, I spend a lot of time thinking about today; about right now. I open my eyes each morning to the same thoughts, what will she be like this morning: happy, upset, disconnected, engaged? wet?  I panic a little bit as I wait for the bus to drop her off: how was her day? how was her behavior? did she stay dry? I fumble for the communication notebook from camp or school. In the evenings as I tuck her in, I'm still thinking, what else can I do to help her? what am I missing? and of course, how am I going to pay for _____ (therapies, special camps, respite care, all these doctors who take zero insurance, etc)?

I crawl into my own bed each night, exhausted. Years of worrying, constantly being "on" and ready and able to tackle the next hurdle (which often comes up in the blink of an eye), have aged my brain and body. Sometimes my worries come to me in my dreams. Sometimes I get a reprieve until the baby wakes me up- and then I start worrying about him.


this week's prompt: a blog post inspired by the words "growing pains"


Tuesday, July 15, 2014

This is Our Autism

Our Autism is fluid. It's changed a bit over the years. I imagine it'll keep changing. This is Our Autism at nine and a half years old.

-It's still watching Sesame Street.

-It's buying or making everything associated with a new interest in hopes of connecting and reaching her.

-It's tracking and recording her poop and giving in when she begs for an enema to bring her relief.

-It's slipping away from some of the inclusion programs we once participated in. The typical kids just aren't as inclusive as they used to be, and I'm honest enough to see that it's just me trying to fit my square peg into round holes. Little Bird could care less who she's friends with. I think she just wants friends.

-It's having to change the sheets more often than I'd like to and then having to answer, "mommy, are you disappointment?"

-It's trying to ignore the posts and pictures of peers' vacations, dance recitals, soccer games, summer camp drop off/pickups.

-Our Autism is hours at the library or bookstores (if we can find them). Skimming and stimming through books on books on books.

-It's talking about what we're going to do today, what we ate today, where we're going. Again. And again. And again. It's fostering that curiosity and inquisitiveness.

-It's repeating to others everything she's said so that they might understand her.

-It's fighting for services in school. Even 10 more minutes of speech per week.

-It's giving myself extra time in the morning because she still needs me to dress her, brush her teeth and hair... and yet still running late.

-It's bracing for the ache when the baby passes her developmentally.

-It's loving to see how happy she gets to hear me cheer her on. Her biggest reinforcer is to know she's making me proud.

-It's hearing her sweet voice talk about who sat around our Passover seder table last year, again and again.


-It's letting go of the 25 hour per week therapy schedule and settling into minimal therapies and just being a kid.

-Our Autism is still seeking out new doctors to find ways to help her feel better.

-It's brainstorming better ways to answer an inquisitive child's "why is she like that?"

-Its less awareness, more acceptance.

-It's unsolicited I love yous that can brighten even the cloudiest days.

-It's perfect pitch and rhythm. And a lot of dancing.

-It's never sheltering her; always including her in errands and seemingly mundane activities, knowing that every stop is an opportunity for learning life skills.

-It's holding hands in the parking lot and snuggling together on the couch. It's gratitude that she's not embarrassed to show such affection toward her parents.

-It's letting go of some hopes and forming new ones, it's still struggling not to compare my insides to others' outsides, and it's going with an ever changing flow. It's being willing to be flexible, change a plan at the drop of a hat, and be okay with it all. It's finding friends who understand, have some compassion, and even a dose of empathy.

-It's spotting other parents who are holding hands with a child a little too old for that, going into the bathroom stalls with kids who look old enough to do it themselves, or pushing a big kid on the swings, and smiling that "I get it" smile, feeling like we're not alone out here.

-It's relishing in every moment of affection, every moment we feel connected, and celebrating Every. Single. Win.




This post is part of a collaborative effort to share "what does your Autism look like?" To read more or add your own, visit http://fourplusanangel.com/2014/07/this-is-our-autism/




Friday, July 11, 2014

*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


Friday, July 4, 2014

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