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Monthly Archives: May 2012

Memorial Weekend, Ebay, Blessings Schmessings

Hope you had a nice Memorial Day weekend. For those of you with family who serve our country, a big thanks from myself and my family.

I have to say, as the four of relaxed this weekend at the cabin, I did not once take it for granted that my little “tic” problem is nothing compared to what so many people go through in life – war and famine not withstanding.

Look at what is going on right now in Syria. My son has not been gunned down. My family has not been torn apart. I have the luxury of complaining on a computer while my children sleep peacefully in their beds. Sure, their room resembles a junk yard. But hey, they have stuff to throw around.

Lest I sound like I’m not allowed to be frustrated or sad, let me reiterate that our problems – and our childrens’ problems – are nothing to sneeze at. Life can be hard. It can seem unfair.

On the other hand, however, I am really trying to keep in check how fortunate I am to call a few tics “problems” when 90% of the world would trade places with me in a heartbeat. Well, they might not want my kitchen sink, but I have running water. And I guarantee so do you.

I hope if things get rough you know that I’m here for you. But that you also count your blessings.

That’s my goopy encouragement for this evening.

Until then, on a different front, I’m happy to report that my 82 year old mother and I are going strong on our Ebay business. I thrift store shop and list stuff. She mails it off. Since we have joined forces, we have turned a profit of 400! By the time you take out our meager investments and Pay Pal fees, we’ve each made about 150. It’s not a lot, but it’s been a hell of a lot of fun. We meet at Costco for our $2.00 pizza slice and soda and pour over the books. (Translation: The books consist of an old plastic 3-ring binder that she clips her handwritten accounting papers in.) We’re learning what sells and what doesn’t. We hope to double each month.

Last week, after sitting in my closet for 2 years, a stuffed animal finally sold for $9.99. (I know. We’re rich.) Thanks to my mom’s prompt shipping abilities, we got instant happy feedback. “Love the beaver! A ++!!!” I couldn’t help myself. I wrote her immediately. “Mom, when was the last time someone complimented your beaver?”

Her immediate response back, “It’s been too long. I’ll take any praise I can get.”

Every cent we have ever made, despite how little, has been worth it for that conversation.

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Week 4 on UCLA Study

Saw Doc McCracken today. Tics still really bad. Focus unchanged.

The good doc asked if we could stick it out two more weeks. Then we could “un-blind” Stink.

Stink is not happy about it, but he’s going to go for it. After all, what is 2 more weeks so we can have clarification?

I am so tired at this point. The tics have been so relentless. But even more relentless is the love I have for this kid. He’s just the epitome of happy. I adore him.

I came home tonight to find my beautiful daughter and her handsome father cooking a fish dinner for us in the kitchen.  What I wanted to do was crawl on the couch and go to bed. Instead, I hung with Rex and let the kids watch a little TV. I remembered to say a little prayer, too. Life is far from perfect, but I have a great family. I love each and every one of them.

And I love you readers, also, for doing the best you can.  You are all wonderful parents and I am so proud of you. Raymond and Lisa, I will feature you soon!

Photo below of my beautiful daughter and Papa on her First Communion a few weekends back. This shot touches me so. They love each other so much. Love, more than fear, is so much more powerful than tics. Until later –

Andrea

 

 

Keeping Our Kids Safe – A Balancing Act

Today I went hiking with my kids after school with Miss L. At one point we came to a metal pipe that was raised about three feet over the water.

“Stand next to me in case I fall,” Pid advised. “But don’t get too close!” she said, before starting the first foot of a four foot trek across the rusty tube.

For the first few steps she was fine. She struggled a bit, but she didn’t come close to falling. Each time she righted herself back to a strong, balanced position.

It was only when her little body was aligned with mine that she started to really waver. She flopped once to the right and then instinctively fell toward the left where my arm steadied her. Her hand hovered over mine for the rest of her short walk across.

This was such an analogy for life. How often do we stoically face life alone, but when someone warm and comforting is near, we allow ourselves the vulnerability to fall?

While there is nothing wrong with allowing others to bolster us, it makes me think of a parenting struggle I often have. Like that walk my daughter took, I want my kids to know I’m around for them. I want to be their safe landing. But I’m of the ilk that parenting means raising our kids to be independent. If I walk too close to them all the time, they won’t have the chance to learn from their falls. Or even more to the point, they won’t have the chance to right themselves before the plunge happens. They won’t have the opportunity to know what they are truly capable on their own.

A discussion about this very thing is happening in the comment section of a previous blog. Take a look and join the thread if you’d like.

In closing, I’ll leave you with a quote from Lisa. She is a woman in her thirties that has T.S.. She has gone on to be quite successful. I’ll post some pieces of a q and a I had with her tomorrow. Just some of her wisdom comes right here:

“It’s the kids who have everything handed to them and are sheltered from failures that have the hardest time as an adult…It’s about loving and supporting your kid and giving them confidence and the ability to be comfortable in their own skin. There is no such thing as perfection so why do we all work so hard trying to achieve something that doesn’t exist? In the words of my biochem professor….’Don’t go hunting zebras in Scott County (Iowa)….chances are it’s horses…'”

And with that, I’m going to saddle up for the night. Until tomorrow, I’m thinking and praying for you all. I’d love to hear your thoughts on any of these subjects, so feel free to comment!

Summer Lovin’, Had Me a Blast

I don’t know about you, but we’re thinking about summer around these here parts. For me, summer means working on my book, Ebaying a bit, seeing family and friends at lazy summer bbqs, sprinklers, sleeping in and new growth.

With the insane running around my family sometimes does, despite our best efforts to stay in the moment, summer also means time to be still. It means enjoying each of our family members regardless of tics, age, disability or bad hair days. Life is best when it’s savored.

My kids, more than anyone, get that. On Sunday, as if to say, “Mom, we’ve had enough of the mad cap dashing around town,” they found a spot under our large oak tree and broke out a game of Uno. And there they stayed.

For two blessed hours.

My daughter could care less that my son was sputtering and clicking away. All she cared about was whipping his butt at cards.

He was a gracious loser, too.

Until tomorrow, enjoy those kids of yours, tics and all. Tics tend to vanish when they become adults, but these precious moments of childhood are so brief.

Still Awful, Prognosis for Upswing

Saw Dr. McCracken on Friday. He admitted Stink’s tics were waaaaay up.

Four possible scenarios according to him:

1. He’s allergic to the pills (they think it’s likely a placebo since his blood pressure is not lower nor is he tired.)

2. He’s just experiencing waxing

3. He might have had strep throat 3 weeks ago and we didn’t catch it. His immune system could be shot to pieces. Today I will take him to urgent care and have his throat swabbed. It’s happeneed before where he presents no symptoms but has strep. It’s always fun to explain this to the nurse on call: “My son needs a throat culture… why, no, he does not have a sore throat… no, I am not an overbearing mother who has lost her marbles but yes, I will sit on you and make you beg for air if you DON’T DO THIS RIGHT NOW I’VE BEEN LIVING WITH INSANE TICS FOR 2 WEEKS JUST DO IT!!!!!!!!!!

4. He’s hyped up from State Testing

I’m going with #1.

There is always the fifth scenario

5. He is allergic to everything I am giving him, including the smell of my armpits, the un-organic apples I am buying because it’s not in the budget right now to spend $199/week at Whole Foods, the bird that visits us every day is crapping on his head causing neck rolls and eye twitches via bird turd absorption, he is allergic to my bad jokes and awful hair that hasn’t been dyed in 7 weeks or he’s just in that pre-spike Tween upswing of tics and I’m going to have to live with vocal tics blasting out 40 times a minute (no joke) until he sprouts pubes and goes to college.

Oh, it’s all so exciting! Thank you to my mom who took Stink overnight last night. And thank you to Vickie who took my daughter overnight. And thank you to Topanga T and Big B who showed up at my home with their two bulldogs. They brought expensive IPA, grilled shrimp wrapped in bacon, shortbread cookies and chicken salad. While I took a half hour breahter at a thrift store after dropping off the kids, T cleaned up my house. My husband bought me Starbucks. I love everyone. I really do. Even the tics!

* I bring this quick edit to thank Ellen and Martina for taking both Pip and Stink on Friday night so I could go to dinner with Rex. And thank you to Daria for playing backup. God bless my community of amazing women. I swear, more frustrating than tics would be a world without strong women who have my back. Please get yourselves a strong group of people in your lives – in any form (church, temple, school, whatevvvvaaah) to get you through the rough times and to sing with during the good ones. I could say I’m lucky – and I am – but I also work pretty hard to sustain this. I’m there for others and they are there for me. It’s the best gift in this life ever.

Tourette Syndrome Petition – Sign Up Please! Contest!

There are 2 ways you can help your child be amazing despite a few tics and twitches (or even major ones)

1. Concentrate on their gifts, not their weaknesses! Be funny! Laugh! Fake it til you make it! (Lots of exclamations here! It really works!)

2. Sign this petition to get more education and research out there to understand Tourette Syndrome. This will also help educate the public. Did you know that 1 out of 100 people are affected by T.S.? That’s a lot. Moms and Dads reading this blog, you have to know that you are not alone.

In closing, I’m off to UCLA today for our weekly drug study check up. I’m quite certain that this will be the one hour in an entire week where my kid isn’t ticking forty times/minute. Why will he not tic for the famous Dr. McCracken? Because life seems to work out like that sometimes. Which is fine. One more thing to laugh about later. If not, I’ll cry. And really, who needs that? Isn’t it so much better to not take ourselves so seriously?

Here’s your bloggy writer, Andrea, signing out. If I can wear curlers to Trader Joes, you can get through some tics this weekend. I promise!

PS: Sign that petition! Please! (I’ll even run a small contest. I’ll pick one name from the list of people who leave a comment here saying they’ve signed the petition. YOU, dear winner, will get a personally mailed note from me with a trinket from UCLA. Go go go!)

Andrea

My blogs are reposted weekly at the New Jersey Center for Tourette Syndrome. Other bloggers write there, too, so check in to this valuable resource when you can. If you want to write your own blog there, I will happily hook you up with my editor.

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!