Things Are Okay

It’s four days before Christmas. My mom broke her hip, so we’re not doing the holidays at her house this year. Instead, we’ll have our normal Christmas Eve tradition here as well as a few merry surprises for the kids which I’ll share later.

Stink’s tics remain reasonable. They were up a bit the other day. Apparently macaroni and cheese along with fried breaded chicken sticks aren’t a good combo for our gluten free/dairy free wonder child. But it’s the holidays. I’m over thinking there is a cure out there for TS. I’m going for the bucket theory: Joy, balance and discipline. Shake it all up and do your best.

On a doctor’s note, the good doc at UCLA of months past continued to irritate me last week as I went for a prescription of Intuniv and found he did not fill it. He had never returned my phone calls or emails either. This is an all too familiar pattern from last year when he wouldn’t return my calls for an initial appointment, then once we had an appointment (enter me kicking and screaming) he did not follow up a month later as promised. Three months later, plus a ridiculous dog and pony show for some trial for Aspergers which we still don’t know if Stink has or has not, we have no official diagnosis. What do we have? Some Intuniv that I could have received through a regular physician.

The takeaway from this? You need to be a pitbull with your kid’s medical care. There is no easy 1-2-3 so don’t waste time being frustrated over lack of follow through from doctors. YOU be the follow through. This is no time to throw a hissy.

Another takeaway? Most labels are crap. I don’t know if my kid is an Aspie. If he is, he’s super high functioning with great grades and friends. What I do know is that he is hilarious, smart, creative and has the soul of a preacher/conman. He’s okay in my book.

Treat the condition, but don’t neglect the spirit of the child. The second will take him much farther in life.

How are you all doing? What are your Christmas plans?

5 thoughts on “Things Are Okay”

  1. “Treat the condition, but don’t neglect the spirit of the child. The second will take him much farther in life.” Needed this today. Nick is also hilarious – I mean tears down my face hilarious. And last night delivered Christmas cookies to our elderly neighbors. Today is his grandfather’s memorial service (my ex’s dad passed away) and its his first death of a loved one. And its almost Christmas. So of course tics are way, way up. Praying through it and loving Nick. Thank you.

    1. Not sure if the first comment went through. Thinking/praying for you, Leanne. Merry Christmas! You are wonderful and so is your son!

  2. Same here. MAJOR tic that even kids in class noticed (it was hard not to; whole body stiffened and jerked- every 30 seconds). I was beside myself, kind of hoping the Mayans were right about the world ending yesterday. It’s petering out now. Dr put him on antibiotic even though not positive for strep. Doubts he has tourettes because she doesnt have “any kids with tourettes in her practice.” Didnt want to burst her bubble so just asked for a referral to a neuro. And I know i’m going to have to fight THAT doctor to just give me an answer for the tics, not for aspergers or ocd or whatever. Don’t think he is an aspie anyway, but if he is so what. He’s also funny and smart, and has so many friends I call him the mayor. Andrea, this post could not have come at a better time. Again, thank you- you are a life saver. Have a wonderful holiday, and hope your mom is up and about soon.

    1. OH, Joy, that’s rought about the kids noticing. It happened with us this year, too. I think it was a relief in a way. No more hiding the elephant under the carpet. My kid tics! Oh, well. You know, everyone has something. There’s always a deaf kid, a fat kid, a tall kid, a shy kid. So ours tic. So what. It’s a slow acceptance but it can be gratifying to know we are not alone. We can’t always fix tics, but we can support our little mayors and stinkers. We should have these kids be pen pals!

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