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, June 28, 2013

*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, June 26, 2013

Beautifying A Very Special Home

A couple weeks ago, Ben, Bird and I planted flowers at a local JARC home (just like last year). It is so great to get to beautify a home for the residents. We had a really good time. There happened to be a man power-washing a driveway across the street and it was too much for Little Bird. Not even her headphones could help. So, she went inside the house to hang out with the residents. This was a women's home and a few of the ladies were hanging out and watching TV. It just so happened that they were watching Little Bird's most favorite movie in the universe- Grease! She was in heaven! They all had a great time together and Ben and I got the planting done in no time. Really looking forward to going back to that home for a shabbos dinner soon and getting to see how our flowers look. We love JARC and love being a part of such a fabulous organization dedicate to enriching the lives of the developmentally disabled. It feels good to do good.


What kind of mitzvot (good deeds) have you performed lately? 



Thursday, June 20, 2013

Never Give Up

Ben modeling his Never Give Up shirt from TheGSF.org
It's been a while since I've shared about a tiny hero I know, Gwendolyn Strong, and the Gwendolyn Strong Foundation. Gwendolyn is a 5 1/2 year old little girl who, like many other little girls, loves princesses and ponies and playing with friends. But, unlike many other little girls, lives with a degenerative muscle disease. Spinal Muscular Atrophy (SMA) is the #1 genetic killer among young children. The body's muscles degenerate, but the mind always stays intact. 

I have known Gwendolyn's mommy since Jr High School and I've been following along with their story for years. I've become enthralled with Victoria and Bill Strong's devotion and tenacity, no doubt fueled by Gwendolyn's unbreakable fighting spirit. 

The Gwendolyn Strong Foundation has brought more awareness to SMA in just a few years than ever before. 1 in 40 people carry the SMA gene. That's one person in every Starbucks! Are you a carrier?



Friday, June 14, 2013

*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, June 7, 2013

*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

Monday, June 3, 2013

Maybe I spoke too soon

It's possible I spoke too soon. (School Doesn't Suck Anymore) Or I should've said a kenahora (yiddish slang for knocking on wood. kind of.).  Yes, the first few weeks of the new school have been great. I'm still suuuuuuper happy to be in this program, which is a much better fit for Little Bird than the last program she was in. But (dun dun....), there's been some behavioral stuff rearing its head. Ugh.

A couple of weeks of bathroom accidents. A few incidents of taking things away from other students. Not following directions (despite having a clear understanding of the directions). No clue what it's all about. Is she testing the teachers? Is she looking for attention? It's true that she likely isn't getting the kind of attention here that she was getting in the last program. There, she needed to be watched more closely than she does here. But, I'm not too sure I'm buying the attention argument. I think she might have something else going on.

You know those little toy cars that you have to pull back release before they can shoot forward? That's my girl. She almost always takes a few steps back before we see a huge leap forward. So, I'm hoping to see a leap forward soon. It's a shame that this is the end of the school year because I want her to get/have that structure. She doesn't qualify for any extended school year services. She'll be in day camp for 8 weeks where she'll get a lot of sensory needs met in the swimming pool and she'll be joined by her fabulous 1:1 from last year. There will be some structure there. Plus, she'll get to just be a kid, which is important from time to time.

So, maybe this is just a shitty backslide, or maybe it's a storm before the calm. I'm not sure. All I know is I'm tired of hearing myself say, "I know you can follow directions" and "Please be a better listener." I'm tired of the tantrums, the whining, the defiance.

There's a fine line between understanding that there's a processing lag for her and the fact that sometimes, she's just acting like a little shit just to act like a little shit. Plus, there's the very complicated fact that her sensory needs have been known to be more complicated at times than others. Since she can't articulate or tell me what's going on with her, I am constantly in the middle of a guessing game. I never really know what is going on and that means I never really know how to make it better- for either of us. So, I try a little bit of everything. And then, I wait. I wait for something to click, I want for it to pass, I wait for progress, but most days I just find myself waiting for a break.

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