Friday, April 26, 2013

Day 25. Year 3.

Some days you just want a break, you know?? Just a little time out. To hit the pause button... the mute button... the power off button... Just for a minute. Everybody wants to whisper those 4 words at some point... Calgone Take Me Away...

I would love a little break from autism. Not from Vicki. From autism. Oh who am I kidding?! Just because Vicki has autism doesn't mean I can't think of her like I think of Joey and Ally. Do I want a break from Joey sometimes? Sure. Do I want a break from Ally sometimes? Sure. So, do I want a break from Vicki sometimes? Yes. I guess I do.
Does that make me a bad mother? I don't think so. I think, or I hope, it just makes me normal and human.

But here's the kicker... with autism. There is no real break. Even when the kids are at school... autism is still with me. Hovering over me, smothering me at times... The 6-ish hours that the kids are in school... I think about autism way too much. And autism plans my day way too often. I drop the kids off at school and I go home. Autism greets me. Diapers and garbage to throw out. Sheets to wash. New visuals to laminate. Doctors to call. Appointments to schedule. Medicines to order and pick up. Updates to write. Insurance to wrestle with. Research to do. Phone calls to make. Aide schedules to prepare to make sure every waking hour is accounted for and covered. Behaviors to muse over.
And this month... as much as I love writing, and as much as this blog is for me... it also becomes overwhelming. Because it makes me think of autism even more than I normally do. It makes me wrestle with feelings at 2 o'clock in the morning instead of sleeping.  Ahhh....That was a pretty good pity party. Thanks! ;)

OK... back to my break. It wasn't calgone that took me away today. It was Ally. And it was much needed. I had already done my 'homework' and the day was as 'planned' as a day can be 'planned'. I had an aide scheduled to work with Vicki. I had my husband getting home and taking Joey to soccer practice, as long as traffic didn't get in the way with my plan... And as an added bonus... I asked my husband to take Vicki and her aide with him and Joey to practice at the park. The day was just too pretty to not enjoy it. I wanted Vicki to enjoy it.  And with my husband there, I could breathe a little easier... I wasn't worried about Vicki dropping while walking around the track. I wasn't worried about Vicki playing on the playground. (Well... ok... even with my husband and Vicki's aide... so a 2:1 ratio for Vicki... I still worried. Just a tad bit.) In case you can't tell this about me, I like to worry. It's what I do. And I do it very well. :)  I've always wondered what I was good at... I can't sing. I can't draw. and so on... But, boy can I worry. :)  I am an expert worrywart. I'll take it.

Anyway... Ally took me away. Ally gave me my break today. We went to her gymnastics class... like we usually do on Thursdays... And instead of rushing right home after class (and a stop a Chick-Fil-A!) since no one was going to be home, we decided to just meander. I don't get much of a chance to meander. Or to be spontaneous. I am always planned. Always a little ball of stress. Always plotting my every move and Vicki's every move and how Vicki could/will react to a blip in the day... So today after gymnastics... Ally and I just hung out. We didn't do much... but it felt like we did everything. In reality we took an hour and went to Goodwill and to the Dollar Store. They were close by the gymnastics center and we both love a good bargain and a good find. And we found both today. And along with that, I found a little piece of myself today... and I am grateful to Ally for that.

We looked through toys. We looked through knick-knacks. We looked through clothes and purses. We looked through books and videos. And my goodness did we have fun. Discovering. Enjoying. Laughing. Smiling. Being. I let Ally try on some heels that were way too big for her. She strutted up and down the aisle with those too big pink heels on, with a scarf around her neck, and a lace/pearl choker necklace on. She was wearing her leotard and shorts from gymnastics. And she was rockin her Princess Leia hair buns today.  She tried on knee high black boots. She tried on wedge sandals. She tried on dresses. We found some decorations and fabric for her Barbie house. That hour was so needed for me. And her.

I just needed some mother/daughter chill time. I needed to not have it be planned or scripted. I needed to not feel anxious. I needed to not be afraid. I just needed to let my guard down a little. And here's where I feel terrible. I needed Ally. I don't feel terrible that I needed Ally. But I feel terrible because Vicki couldn't give me that. And that is so hard for me to accept sometimes. Vicki gives me so much. But she couldn't have given me that hour that Ally did. It wouldn't have felt the same.

I know that you can't feel the same things and do the same things with each of your kids. I don't think Joey would have been able to give me what Ally gave me that hour today either. ;)  But you know what I mean?? It's just so hard to love something so much, and need something so much and be grateful for something so much. And experience that blissful hour with my daughter. And it's so normal. And so... I don't know... it's so easy. And free. And easy. And at the same time... I experience heartache and grief and sadness because no matter how many pictures I could (and have) put on Vicki's visual schedule or how many social stories I could have had. Or how much I could have talked to her about it before hand... it just wouldn't be able to happen like that. (I know because I've tried. Many times. We can have moments. And I live for those moments. I really do.) It's just different. How can I be so grateful and so grief-stricken at the same time?

Since I started this post tonight, I haven't been able to get a song out of my head. So, I'll share it with you. Do you remember that sitcom in the 80's...with Nell Carter? Gimme a Break? 
If not, let me refresh your memory....And you're welcome :)

Won't let em get the best of me
Wo wo wo wo...

Gimme a break the game is survival
Gimme a break and plan my arrival
Gimme a break for heaven's sake
I've got to get a piece of the cake...

Hey Gimme a break. Gimme a break.

Thanks, as always for listening... And you know what? Just singing the words to that song make me think of Vicki... No, not the gimme a break part now. I had my break. Now... I want to spend a blissful hour with my daughter Vicki. I think we'll put 'baking' on her schedule tomorrow... maybe it's time for a cake. No.. we just had cake for Ally's birthday... maybe a cheesecake. Yes. A cheesecake. I will spend a blissful hour with Vicki where she is the most happy and the most free.... in the kitchen. Discovering. Enjoying. Laughing. Smiling. Being. Yes. That's what we'll do.
xoxo






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