Wednesday, October 22, 2014

Weekend Wrap-Up: How An Ordinary Post Turns Sour

Sure, it's Wednesday but my Weekend Wrap-Up post has been idling for days. The funny thing about being busy is that you have a lot to blog about, but no time to actually WRITE the blog. Such problems I have, I know. 

Weekends have been crammed with parties and events, games and practices. Tennis has ended, year-round swim has commenced, and celebrations abound. 

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Birthday parties that combine girlie fashion shows...

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...and jumping on the trampoline after running through 6 acres of woods are the best kind.

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And there's soccer, soccer, soccer... four days a week, soccer. 
We do it because Tink and Rella LOVE it.  

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My niece made her Confirmation last weekend and we marveled at what a young lady she is becoming.

The celebration with family following the Mass was not CB's best moment. Nor, was it mine. 
We didn't have a private room for our large party, so we shared it with another large party and there were a few other tables for regular restaurant goers.

This wouldn't have been any big deal if CB wasn't all riled up, but she was. All. Riled. Up. There are times when she is so good, and other times when she's just CB on high def, volume turned WAY up and firecrackers in her pants. 

The only thing I can relate it to is when you have, say, a toddler. A toddler who is really active and energetic and can't be rationalized with yet.. and still needs help to cut stuff up and get a diaper changed, and constant supervision. 
Except, this toddlerhood lasts forever. You know, as in FOR-EV-VER, forever. 

At one point, CB went barreling across the room, a heat seeking missile honed in on the innocent balloons tied around my niece's chair. As I shoved people aside, sprinting after her, she knocks a filled-to-the-brim glass of Coke everywhere just to show how pissed she is that I thrwarted her plan. This sends me scrambling for every cloth napkin I can find to mop the floor, change the chair out for a dry one, order a new drink, apologize profusely to my lovely 14-year old niece (who was all "It's okay, Aunt Alicia, it's okay," 'cause she's just that sweet.)

The whole event sounds really quite innocuous now, but for some reason I was sweating and annoyed and flustered and mad and apologetic and so completely OVER it. Over Autism and perpetual toddlerhood and apologizing and feeling like I'm in a fishbowl. I can't even describe exactly why. I'm quite certain someone looking at this whole event might not see it as all that bad. In fact, everyone in my party seemed pretty unfazed. 

So why were Dr. Fabulous and I so affected? I mean, so what? A nearly 20-year old, severely cognitive disabled, 120 pound young woman who has been screaming and banging on everything for the past 2 hours goes careening across a room and knocks over 12 ounces of soda to the screams and theatrics of 8 young kids. So what that the random party of 6 who happened to have the misfortune of being seated next to us trying to enjoy their meal got up and RELOCATED to another part of the restaurant following these shenanigans?

Why did I feel responsible? Why did I feel so pissed?

"You know what?" I said to Dr. Fabulous when he pointed out that the family  had migrated into another part of the restaraunt. I felt my words bubbling up from a deep pit of yucky feelings.  
Don't say it aloud, I thought.  Don't say it in front of his Mom...
I tried to bite my tongue, but then I was like, Screw it...

"F*@k them." I said bluntly. I should have minced my words, but I didn't. I shouldn't have been so crass and angry in front of his Mom, but I was. 

My mother-in-law assured me that they moved simply because our party was so overwhelming. It wasn't CB.

But I didn't care, because I thought it played enough of a role. 
Because, I needed someone to be mad at for a few minutes, and they seemed to fit that bill. 

But, it didn't really accomplish anything. 
The fact is, sometimes CB's behavior isn't the greatest.
But, I suppose some days, neither is mine.

Don't ask me how this regular post turned so sour! 
Sometimes, a Mom's just gotta bring out the world's tiniest violin and serenade herself. 
Thanks for listening to my jam. 

Thursday, October 9, 2014


Mother-Daughter Selfies From the Autism Walk

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Tuesday, October 7, 2014

Weekend Wrap Up: The Autism Walk

The past week hasn't been the most awesome over here in "Holland," but Saturday morning certainly made up for it. Our county's annual Autism Walk was a big success! We love being part of this walk because the proceeds stay in our local community and go directly to programs and services that improve the quality of life for children, teens and ADULTS living with Autism.   

Since CB was 8-years old, we have been doing some type of Autism Walk. Our team has always been just us - me, Dr. Fab and our kids. But on today's walk, we had a couple new walkers join us which meant the world to me!! Thank you to our friends Les and Susan for the generous donation AND your emotional support at the walk!!

The foundation that organizes this walk always does such a great job making it a fun and family-friendly day. When I told the girls we were walking this weekend, they were all like "YAY!!" I'd like to think that it had more to do with CB than the free cotton candy, popcorn, donuts, music and other entertainment but... they are KIDS after all.

CB started out strong. Here she is all like "Let's DO this!"

About 3 minutes into it she's all like "I'm hot and tired. I quit." But since she can't exactly SAY that, she tells me by spitting and dropping to the ground and scratching me.  

But she really hung in there. Walking isn't her thing and she had her moments but overall she did as well as I could have hoped.

At the event, I was able to meet author Kristin Arniotis and her son Billy. Kristin is the mother of four boys and was inspired to write "I Have Autism and That's Okay" by her now 8-year old son Billy. Billy is an adorable kid who likes to run, draw pictures, listen to music, and walk his friend's dog. Oh, and he happens to be on the Autistic spectrum too.

I love her message which eminates from the way she lives her life and sees her son. Yeah, sure, he has Autism, but that doesn't define him or put limits on his goals and dreams. Her book takes the "quirky" behaviors seen with Autism and aims to destigmatize them. It is a great tool not just for higher-functioning children on the spectrum but also for typical kids. It helps kids (and adults) to understand that Autism is something unique and interesting not something to be pitied or feared. I can see this book being a great learning tool in classrooms and preschools.

You can learn more about I Have Autism and That's Okay on their website and purchase the book there as well. (It's $14.99 and ships free).

Follow Kristin and Billy on Facebook and you'll be rewarded with inspirational posts about Autism. I love to support people who are putting good out there in the world, and Kristin is one of them. I thank her for that!

All-in-all, it was another great walk. 
The best part is that it's something the three little ones can do with their sister.  
It's a memory and a tradition they'll always have... we'll always treasure. 
Especially me.

Thursday, October 2, 2014

tHERsDay: Before

This is a photograph from CB's second birthday party back in 1997.
This is a photo from "before."

I labored over that Winnie The Pooh cake, hunched over it for nearly an hour with my icing bag, painstakingly lining up the frosting stars. Because, that's what I did in before. 

Before her diagnosis of Autism and Cognitive Impairments, which came only months after this picture was snapped. Before the OT and PT and Speech and the train of seizure medications with their nasty side effects.

This was in before, when she "only had epilepsy" and I was still gloriously naive.
When she was gloriously perfect and mine.

Despite all the things that have changed from before, that has been the only thing remaining constant. 
Perfect and mine, before and after.

Wednesday, October 1, 2014

Weekend Wrap-Up: My Five Inspirations

My husband was presented with a community leadership award over the weekend. We attended a beautiful banquet hosted by an amazing, grassroots non-profit where he and a few other remarkable individuals were honored. He has accepted several of these types of awards, actually, for the amazing work he is privileged to do at the helm of a non-profit that helps children and families. We enjoyed the banquet while sitting among over a hundred volunteers, all giving of themselves to make the world a better and brighter place. It was an inspiring evening.

When I find myself in these situations, I feel blessed and I feel proud of the man next to me. But, I also feel something else. Humbled, sure, but ... what's the word I'm looking for?  Like a total slack ass. Yeah, that's it.

I think of the things I could be doing, the volunteer work I'm not making time for, the good intentions that don't translate into good works.

"You're raising our children," Dr. Fabulous reminds me. "You're raising the next generation. These girls will be part of the community and, hopefully, doing good while they're in it."

There are no plaques to hang on your wall or trophies to place on the mantle for being a parent.  Nor, necessarily, should there be. We don't parent for accolades (though some praise every now and then is kinda nice, I'll admit). Parenthood is a huge responsibility, a huge privilege, a huge blessing and ... for me... parenthood is a great reminder. It reminds me that there is good in the world and that I am investing in the future of that good.

When I look at my girls - past the messes they leave, the squabbles they have, and the chaos that follows us like a cloud of dust - I am inspired to be a better person. I'm inspired to be better FOR them. I'm also inspired BY them.

I'm inspired by watching them live their day to day with their own little thoughts and minds. As their own little people. We, as parents, do our best to shape them and they of course reflect our values and actions and words. But, they grow into their own little beings. The older my girls grow, they become less and less like their Mom or their Dad and more and more like themselves.

The choices they make from an innocent heart (still uncorrupted by the world I hold at bay) remind me to see the world a bit less jaded; as full of possibilities, heros and redemption. The charity in their hearts comes with such ease; reflexive and joy-filled. It reminds me to open myself up to the same.

And the person who inspires so much of it?  Well, that would be CB. The lessons she teaches us all, the kindness and compassion she engenders, and the subtle way she reminds of us to appreciate the little things in life... this is a happy side effect of being such a unique child.

And, we've been the lucky beneficiaries.

Inspiration to be a better person is all around me. But, the best part is that I don't need to step outside my own front door to see it in action.

Thursday, September 18, 2014

tHERsDay: At The Table

I had a whole post about the chaos that occurred after I came home from the soccer field last night.

"I can't be all things to all people," I spat out to Dr. Fabulous, 10-seconds after he walked in the door at nearly 9:00 pm. I had a giant smelly bag filled with dirty diaper in my one hand, an emotionally distraught daughter in the kitchen who I had to ignore, a pile of soiled linens upstairs and a child to be scrubbed sitting in the tub. The day's work not close to being done, like the frayed ends of unraveling yarn, and I was tired from a restless night of little sleep.

But, I erased that whiny post when I found this photo from last spring. A photo of a girl who prefers to hang in the margins and avoid the crowds, sitting amongst the group. Enjoying the rowdy conversations over food and drink. For that moment, fitting in.

Because, all that crappy other stuff? It comes and goes. That stuff happens. It happened before, it will happen again.

Then, there are fleeting moments of magic where the thing that seldom happens, happens. That's when everything else sort of fades off into a colorless midst and I am reminded that I can always chose. It's not always as easy as a pinky finger hitting "delete" on my keyboard. But today, it kinda was.

Today, I pick the magic over the mayhem.

Here is tHERsDay's photo. I'll title it:  "CB at the table with friends and family." 

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Wednesday, September 17, 2014

Weekend Wrap-Up On Wednesday

We're in Soccer season now. Pink has lost all interest in the sport, so I only have two little players to juggle. Rella's only 6, so it's still "rec" soccer and more fun and cutesy than competitive. Tink's constant begging over the past few years convinced us to let her graduate from "Rec" to "Travel," which means more practices, longer practices and (as the name would suggest) traveling.

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So, Fall for me means sitting on a soccer field four days a week between the three practices and two games. And when I sit on the soccer field, CB sits on the soccer field.  Rain and shine, cold and heat, she sits on her lawn blanket with her bent up flash cards, a few strands of beads and a raggedy pom pom.

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Saturday, we got caught in a downpour watching Tink's game but CB hung right in there.

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It used to be a bit more of a struggle for her (and for me) in the "old days." I would physically dread going to soccer practices and felt the knot in my shoulders and neck after I came home. I guess she's been sitting on the sidelines for so many years now, that it's become part of her routine. For me, it's getting better because my kids are older and more independent. More importantly, it's better because everyone knows CB now. And I believe on some level, she feels more part of the community every day she goes out into it.

In fact, the other day CB jumped up and pulled another mother by the hand to sit with her. And that mother did. She just plopped right down on the grass with my daughter and had a little one-sided chat. They sat together almost the whole practice.

That kind of thing?  That's the best. To feel like CB is a member of this amazing community, known for who she is, and cared about... that is all I ever wanted. It makes everything that feels nuts and chaotic and nearly impossible so totally worth it.

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