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.

Saturday, August 30, 2014

He Sent Me A Penny

It was two years ago that he died. Two years ago today, actually. Jed was a great friend to me and a great support. Always encouraging me and cheering on the bird from across the miles. Of course I think about him all the time, but since this week marked the anniversary of his death, he's been on my mind a bit more, I guess. Soon after he died, another friend of ours saw him in a dream. I was so jealous. There were times when I'd hoped to see him in dreams; hoped he'd answer some of my questions. For two years, he never showed up. And then it happened. He visited me a few nights ago and we laughed and I got to see him smile, at peace. Finally at peace.

Today I was in the middle of a packed yoga class. Somewhere between one pose or another, I looked down and I saw it. A penny. About a year and a half ago, I started seeing pennies on the ground as signs that people I loved who aren't here anymore are sending me a little message, a little hug, a little wink and a smile. I got chills right away and knew that penny was from Jed. Just a little something to let me know he's still here around me, supporting me.

What in the world was a penny doing on the floor of a yoga room (typically all you bring into a yoga room is your body and a mat)? And what are the chances that my mat would be right there next to this penny? And what are the chances that all this happens today, on the anniversary of Jed's death?

I'm grateful that I was present enough to see the penny and get the message. So, Jed, wherever you may be tonight... back atcha, buddy.



Friday, August 29, 2014

My Daughter Was Diagnosed With Autism (6 years ago)

Six years ago today my daughter was diagnosed with Autism. She was 3 1/2 years old and had been in therapies since she was 8 months old because (presumably) her low tone delayed her gross motor, fine motor, and speech and language skills. Until that day, her only diagnoses were hypotonia and developmental delay. All those therapists that she'd seen over the years were so surprised that I was going to get an Autism evaluation and at every therapy evaluation when they'd say it doesn't look like Autism, I'd ignorantly think to myself, "at least it's not Autism." But, on August 29, 2008 it was. She was diagnosed by one of the leading names in ASD diagnostics. This was it. She has Autism.

So to honor the six years since the diagnosis, here are six things I've learned along the way. This won't be true for ALL people raising kids with Autism, nor will it be true for all autistic people. These are six of MY truths.

1)  "The world is so big and she will find her where she fits." Just as I shared in the Our Story section, I sat with an older woman a few years ago and she said these words to me. I've held on to them, reminding myself that there's a place in this big world for my bird and she will find it. She will find it.

2) There are some pretty cool people here. Early on in Little Bird's life, it seemed like the world was getting smaller and smaller. I wasn't able to socialize or go to the same places as the other families because there were parts of her disability that made it impossible; there were also parts about where I was in my grief journey that made it too painful for me. I found an incredible group of parents just like me all around the country and even world. I am never alone in my feelings and I always have people to turn to. And these people get it. Like, really get it. 

3) This isn't going away. When Little Bird was a baby and I first started seeing signs that she wasn't developing typically, the doctors, therapists, and teachers all lauded Early Intervention as this amazing concept and way of life that would offer the chance of Little Bird outgrowing her symptoms. I remember they all said that if I kept at it, then by kindergarten/age five, she might be indistinguishable from her peers. That's why five was such a huge deal for me. I wrote about it here. Kindergarten came and went. She was most certainly distinguishable from her peers despite years of early intervention programming and countless hours of therapy and thousands upon thousands of dollars spent. The inverse seemed to come true and now as more time passes, the chasm between Little Bird and her peers widens.

4) It's not a death sentence. Yes, it's a lifelong disability and there is no cure, but there is still happiness, fun, and love here. There are ways to try to minimize some symptoms that might hinder a person's ability to enjoy life, feel comfortable, and thrive. Therapies, medications, supplements, etc. It is possible to find happiness whether your child's symptoms improve or not.

5) There are neurotypical peers out there who want- actually want- to be Little Bird's friend. This one I need to keep reminding myself. While it's been more than a year since any play date or birthday invitations have arrived, there are children who approach her with a smile and say hi as she walks through the school halls. 

6) Autism isn't fluid. Symptoms come and go, flare up and calm down. Just when I think I can't take one more moment of a particular behavior, another pops up to replace that one- sometimes this works in my favor; sometimes it does not. Life with Autism is never boring and always changing. Little Bird's behavior and functioning can be very variable depending on the situation, scene, and her comfort level. I always try to meet her where she is, but presume competence and push push push her to be the best Little Bird she can be.







*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


Sunday, August 24, 2014

We Always Try Again

"Look, Olivia!" she said and fixed her gaze in our direction, "another little girl to play with." Little Olivia looked over and just stared in bewilderment at my Little Bird whose nose was scrunched up and fingers were in pushed so far into her ears that she likely didn't hear me ushering her along. The little girl just stared. Oh, the stares. After all these years, the stares are as sharp in my gut as ever.

It was a pool party. Mostly babies and very young kids. My bird was the oldest. We didn't know anyone but the hosts. The pool was a little too cold for my baby, so I just held him and nursed him and rocked him. Eventually he slept in my arms. It must have been too much of a sensory experience for my girl as she dropped to the ground, silent, fingers in ears, head down and body curled up. Ben and I continued to exchange glances, the kind that contained entire conversations and debates about whether or not to cut and run. We tried to distract her, redirect her.  It was a fruitless effort. I looked around at the other families. They were enjoying their afternoon. And from the outside, it did look like fun. And the sounds! Little ones giggling and the echoes of the pool. Yes, it looked like a good time. It's just not mine. My mission is to find peace with what's mine.

We spent more time in the car traveling to the party than we did there. Sometimes I'm not sure why I bother trying. But of course we will try again. We always try again.


Friday, August 22, 2014

*This Moment*




My baby and my baby brother meeting for the first time 

{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)