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I Used To Be Such a Good Blogger…

…But a full-time job with kids home at all summer has put a serious damper on my style. I think I need a degree in project management to keep track of their schedules and my husband’s wacky work schedule. Not to mention my kids need sustenance. Seriously, mamas, kids need attention every day. EVERY DAY. Can you even believe it?

A big shout out to all my friends who have circled the wagon this past month to take my kids to such wonderful places as the beach, downtown Los Angeles for Mexican dresses, art openings, Swedish festivals, bowling, parties, sleepovers and more. I don’t even know if any of you read this blog, but if you do, you know who you are. I am so very grateful.

To answer the last blog’s question of ‘Would you tell a camp counselor if your kid had T.S.?’ I did indeed tell the camp director. She didn’t flinch. She didn’t even twitch – and not because she doesn’t have T.S.. She simply didn’t react because, apparently, I’m not the only mom in the world who has a child with special needs.

I was immediately put at ease, especially with her closing statement. “I am glad you said something,” she offered kindly, “Because if some kid acted poorly toward him, I’d want to know that he could advocate for himself or talk to his counselor.”

“My son not only advocates for his tics, he also advocates for seconds on popsicles, extra pool time and extra room on stage to take his final bow,” I said, giving her a small glimpse into his over-the-top personality.

She smiled, “He’ll have to join in line behind the other boys,” she said. “This is a public park n’ rec. That kind of behavior is par for the course.”

One week later, my son came home in tears.

“Oh, no,” I said, pulling him into my arms. “What’s got you so upset?”

“I don’t know,” he sniffled, sitting on my lap. I almost gasped at how heavy he was, but I decided breathing was overrated. How long would my almost sixth grader want to cuddle with me? I bent my head next to his mop of curl, enjoying the warmth of his bear paws on my knees.  I took a deep breath, was reminded he needed to wear Roll On with more frequency, and snuggled close. “You must know what’s wrong,” I nudged him.

“Well, I guess I do. But I just don’t want to say.”

“Oh, no,” I though. He’d been lightly hiccupping all week, likely due to chlorine overload. I was ready for his tale of woes about the kid at the snack bar who asked him to keep his noises to himself.

“Did some kid tease you?” I asked?

He immediately bristled and pulled away. “No! What would they do that?”

“Stupid me!” I wanted to respond. Instead I went with, “Then what’s the problem?”

“Well, you’re working so hard, and it costs money to go, so I feel bad saying this, but…” he burst into tears. “I’m not a fan of the great outdoors! Oh, Mama, I am a fan of the great indoors!”

I stifled my laughter, gave him a huge, promised him we’d turn on the air condition and watch TV the following week while his sister sweated her ass off with the other campers. “And lots of snacks,” he advised. “And lots of snacks.” Problem solved.

Here are a few images of what Stink considers to be ideal activity. Thank God he’s estimated to be SIX FOOT NINE. No joke. If not, he’d be bigger than a Whale at McDonalds.

dom 1 dom 3 dom 4 dom 5

 

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Chicago, Summer Camp and More

So Miss Adelia and I both left our kids with sitters and enjoyed a lovely meal in Hollywood. We felt very fancy with our big Diet Cokes and yummy Italian food. We ate on the patio with the warm breeze blowing. I did not once think about anything gluten free. “Bring on the dinner roles with the olive oil,” was my motto. It was delcious.

The show? Oy. Christie Brinkley is gorgeous. She’s actually quite charming and even funny. But she can’t sing. I mean, not at all. I wanted to like her. I really did. But I didn’t. Everyone else in the cast, from John O’Hurley to Amra-Faye Wright were spectacular. The dancing was superb and the costumes were incredible. But the story was dark. It was somber. And with all the evil in the world, I just didn’t get it.

You could say that I have been so down about Tourettes that my opinion was swayed. But the truth is, I wasn’t. I get annoyed when I’m in the same room with Stink for hours on end and get no break, but the moment I leave, I’m fine. And frankly, I’m getting less annoyed even with Stink. After all, he’s the one with this disorder, not me. I’m so unbelievably proud of his resilience and amazing attitude. I might as well have the same. He rocks!

In closing, I called a camp for summer. I was thinking about enrolling him and Pip in musical theatre. I mentioned that he has T.S.. Their response was that it’s fine if he comes with an aid. “An aid? He doesn’t even have an I.E.P., though,” I balked. “I just told you about his diagnosis so you wouldn’t freak out about a few tics during rehearsal.” Their response, “It’s fine! Really! As long as none of those behaviors that come with T.S. accompany your camper.”

Um… Huh. Head scratch head scratch WHAT????

I get it on some levels. They don’t have time to accomodate special needs kids who don’t come with special needs support.

On another level, though, it’s frustrating. I lose either way. If I don’t say he has T.S., they’re going to wonder why he’s occasionally coughing or churping during “How Do You Solve a Problem Like Maria?” or adding individual neck rolls to “Doe a Deer”.  If I inform them of his condition, though, and he does something very Stink like – very sneaky and appropriate for any average NT 9 year old  – he’s automatically singled out as “The Tourettes Kid.”

Forget that racket! I spoke to my hubby and we’re enrolling our kids in the YMCA this summer. I don’t have the energy for this crap. Once he gets his tics dialed and we’re off this study, I’ll go back to fighting dipshxxxts.

For now, I want to enjoy my summer, tics and all, and hopefully not have to sit through Christy Brinkley’s musical acts. Hell, she doesn’t have T.S. and should have been kicked out of that play. Funny how things work sometimes, eh?

Good night everyone! Love you all and am praying for your beautiful babies!