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Monthly Archives: January 2013

Finding the Right School

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When Stink was first diagnosed with Tourettes, I was still holding onto hope that he would attend the Catholic school of my youth. He would play sports and go through the Sacraments and be just crafty enough to be adorable in his skinned knee navy shorts but obedient enough to get straight A’s on his report card be head altar server. It was an awesome dream and so much fun to fantasize about!

Then all the kids from his preschool got their acceptance letters into kindergarten. Stink did not.

Given I had no indication whatsoever from his preschool teachers that he would not do well at the private gradeschool (he always had glowing reports on his character, behavior and cognitive/motor abilities), I made an appointment with the grade school principal.

She was five years younger than me, but acted like a stern sixty year old. As I sat there, looking at her somber face in front of an oil painting of the Good Lord, she informed me that Stink seemed very immature at the intake interview.

“He’s FIVE!” I responded, flabergasted.

“Yes, but he didn’t exactly hold his pencil correctly, and with thirty kids in the classroom and one teacher, we don’t have a lot of room for extra attention.”

“Why in the world, then, with that many children, would I want to spend 10k/year on your school?” I asked, incredulous.

“For the Christian environment,” was her clipped response.

“Oh, yeah, I’m really feeling the love here!” was my retort.

So off I went, enrolling him instead in a local charter school. We’re all different religions and sexualities and neuro make-ups and all kids are honored and get this: It’s free and the teacher student ratio is 22 to 1. Jesus would be proud!

My advice to you, today, is to be sure that the school your son or daughter is in does not reflect what you, as their parent, want. Your child is not supposed to live your dreams. They are supposed to live theirs. And that means being supported in a place that best fits their personality, disposition and academic requirements.

I love my charter school! I have the best communities of moms and dads I could ever ask for. (Literally, there are 15 parents at any given time I can call and say “Please pick up my child… I’m running late!” and boom – DONE. Community is everything. And not just any community. A community you are comfortable in.

Here’s a response from a reader here, Leanne, who spoke in my last post about the importance of talking to your child’s school about any issues they might have in order to best ensure their educational success.

Letter

Yes, my son is on Intuniv for tics.  2 mg in the morning, and then the generic form (guanfacine) 0.5 mg afternoon (because you can’t cut the Intuniv pills in half but can the guanfacine).  My son seems better than he was December 2011 when we got the diagnosis……I believe because of the Intuniv.  We didn’t put him on it until June 2012 and only did then because he was SHOUTING HIS WORDS and I can’t even tell you what that was like.  Horrible. 

He waxes and wanes.  I was scared to death of him starting middle school.  I truly was (yes public school).  So I went into middle school before it ended for the year last spring and met with the principal and counselor and let them know I had an incoming son with Tourette’s who would be there in fall.  I had printed off information from the TSA website on what it is, and I also printed off an “introduction paper” on my son and paper clipped a picture of him as well so they would recognize him when he came in. 

I had a friend go with me.  I had stuff about him that I thought would be important, like that he loves math, doesn’t like reading much, loves sports and does a lot of them, and of course explained the tics.  I also had the name of his neurologist and prescriber and phone numbers on there.  That way if they had any questions, they could ask them as well.  I actually cried when meeting with them but they put me right at ease and told me they were there for him and wanted him to have the best education opportunities possible.  I then went back with him two days BEFORE middle school started to meet again with the counselor and take another tour of the school and met with all of his teachers and explained about his tics.  Anything you can do to put his mind at ease, your mind at ease.  The counselor told me that if his tics got loud they could make accommodations such as letting him go to counselor office or bathroom to “let them out” if needed.  There are several things schools can and have to do to help, like a 504 plan I think.  There is a lot about school on http://tsa-usa.org/    

He does have loud vocals waxing and waning.  Some teachers have allowed him to chew gum in class discretely (so other kids won’t want some) and that helps his vocals, so do gummy candies but I try not to do much sugar.  He “disguises” it as well with his words in sentences going up and down in volume.  I was petrified of middle school for him.  But I did all I could BEFORE he got there which I think is huge.  Your mind can take you down some dark, scary roads that don’t even turn out to be true.  I think if you met with middle school staff your mind would be put at ease.  This got so long…….there is just so much I could say because I have been there, I do understand, and will continue praying for you.  I will answer any questions any time.

* Photo taken 3 years ago. These kids are still best friends. So much of that has to do with the school. It’s a school that advocates for diversity and togetherness with no bullying policy. I AM SO GRATEFUL!

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

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A Mom In Need – Who Can Support Her?

Happy Tuesday! Did you all have a nice 3 day weekend?
I want to repost an email I received from a reader here who is going through a hard time. If someone feels moved to comment in support of her, that would be awesome. More to follow!
Hi Andrea!  I cannot tell you how much it means to me that you took the time to respond to my e-mail.  And yes, you are very correct.  I am struggling right now, not for the first time, but it seems to get harder for me each time we have a major tic flare up.
I’ll tell you our story, and try to abbreviate it as much as possible…
Anthony is currently 11 years old.  He started having tics at 6 1/2, some eye-blinking, lots of swallowing, throat-clearing, and eventually (at about 7 years) a high-pitched squeak/squeal, that was really almost was more than I could bear.  At that time, we started seeing a psychiatrist, who was recommended by a friend whose son was on the autistic spectrum, with motor tics also.  This Dr. recommended we try medications because the tic was so loud and disruptive, and also because Anthony was extremely underweight, and we hoped that meds would help with both issues.  After some trial and error, Risperdal seemed to get his vocal tics under control, and also helped him gain some weight, with no other side effects.  We floated along for a couple of years after that, we had the normal highs and lows associated with TS, but that horrible high-pitched tic went away, for over 3 years.  The other tics were bad, but never as bad as that one.  I had hoped it was gone forever.
In November of 2011, Anthony’s throat clearing got pretty severe, and through much research, I learned of an OT clinic at the University of Alabama-Birmingham (we live in rural Western Kentucky) that was administering CBIT, with alarming success.  I sent a random e-mail to the director of that clinic, Dr. Jan Rowe, and heard back from her almost immediately, and off we went for a 2 week stay in Birmingham.  Anthony’s results were very good.  His tics became very much under control, and the techniques he learned were very simple and easy for him.  We had a good 6 months after that. 
Now fast forward to late July 2012, a week before school starts back this year, and what do I hear?  The high-pitched squeak, very quiet and mild in the beginning, but let me tell you, my heart about fell out on the floor.  I asked Anthony what that noise was and he said “I’ve been feeling the urge to make a high-pitched noise”.  Well, things have gone downhill since then.  We started seeing a Neurologist at Cincinnati Children’s in August.  Andrew didn’t even start school until a week late because the screech/squeak was so intense.  It has come and gone a lot since then, and he has had two of the worst episodes to date with vocal and motor tics.  In October, when things were just terrible, the Dr. added Topamax, and it worked almost immediately.  Tics nearly disappeared overnight and stayed at bay for about 3 months.  Then 2 weeks ago, the squeal came back, and needless to say, it has stayed, and gotten very severe.
I feel like I can’t take it anymore.  I have the most precious son, he is brilliant, and beautiful, and my heart is breaking a little more every day as he prepares to head to Middle School next year.  It is so unfair and cruel that a child has to suffer like this, and that a mother has to mourn the loss of his childhood to this monster.  I feel like the past 5 years have been one nightmare after another, and just when I think it’s finally going to get better–WHAM!  There it is again.  I try to read all the positive information I can find, especially the articles that say kids reach their tic peak between the ages of 10 and 12.  I pray that that’s where we are, at the peak.  Things will start to get better soon.  He will be OK.  But then I hear him, and I see the way people look at him, and I imagine what they are saying about him and I feel like I’m dying sometimes.  No one understands.  No one else I know is dealing with anything like this.  Anthony is strong, he doesn’t have many friends, but he has a few.  Usually, he seems unfazed by it all, but then sometimes, I see the hurt in his eyes, and feel the fear in his voice and my heart breaks again and again.  He wants a friend who is like him.  But there aren’t any other kids with TS anywhere it seems.
I don’t know what to do anymore.  Do we keep trying new meds, going to doctors, trying therapy?  I can’t accept that this is it for him.  I just want his life to be good, and happy, and peaceful.  How are you dealing with these things?  Do you feel hopeless?  Do you homeschool?  Is your son OK? 
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My response to follow at a later time. Thinking of you all! Now give her some love if you can!
Andrea

What Makes You Tic… With Joy?

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One of my resolutions this year is to write more, both at this blog to support other moms and for my career.

With that in mind, I reached out to my local papers with a pitch I had. They both accepted it. It was to interview Cathy Rigby – of gymnast fame – who is starring as Peter Pan at the Pantages in Los Angeles.

What started out as an interview for press purposes quickly became a 15 minute encounter with a woman who is short in height but high in spirit. I don’t know what to say other than “She gets it.” She is a big believer in allowing our kids to fail to build life skills. She promotes the journey, not the destination. She doesn’t believe that we ever have to stop transforming and stop building on what we have.

In addition to my article being published in local papers, I published it on my own blog here. I figure, slowly but surely, I will build up a reserve of quality articles and stories that give me more opportunity to work for myself instead of editors.

It will give me the chance to surround myself with more quality artists like Cathy Rigby.

It will allow me to focus on the positive in the human spirit, not just the buzz of the celebrity bandwagon.

Like Tourettes (or any kind of diagnosis in our children) it’s so important to focus on the gifts that come our way – not just the “flaws” that we want to fix.

Life itself is messy and sticky and gooey. We can do our best to cure what we can, but at some point, we have to accept what is. Like Peter Pan, we must choose to soar above it.

“But how? How do I do it?” you might wail.

To which I will tell you, “One day at a time. One tic at a time. With the support of other Lost Boys (and Girls) like yourself who are willing to do the extra work to find the peace of Neverland. And a little bit of joy…which I’ll call pixie dust.”

My pixie dust is my writing which is really connection with others. What is yours?

And, as always, hug that ticker of yours today! If you can’t fix the tics, fix yourself!

PS: Tonight, I’m off to Opening Night with my daughter. I am looking foward to some quality time with her, a good show, the kindness of strangers when she inevitably falls asleep at the end of the second act and I need someone to help me to my car, and a good cup of coffee to get me home to my other Darlings.

Love you all. It’s going to be okay!

Andrea

Videos Games and Tics – Our Experience

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It was a busy weekend but a productive one as we slowly but surely put our house in order after our post-Christmas madness.  There’s something deliciously satisfying about puttering and organizing when there’s not a ton of pressing “must do’s” crowding the task. Instead of being a chore, it becomes a delight as taking the iron out of the closet results in finding that stray shoe or the random picture of Pipsqueak as a newborn sucking off my cheek for nourishment.

Rex did about ten loads of laundry. Pipsqueak did a lot of reading. I checked in on my mom whose hip is slowly healing. As a family we all took a dip in the YMCA pool during Family Swim time. And Stink played the Wii.

Ahh, yes, the Wii.

Many of you might recall a fierce battle played on this sucker, and it wasn’t between Stink and a first person shooting character. It was over the damn plumber, Mario. This post, along with many prior, detail our epic exchange.

My issue with Mario, and the Wii in general, was 2 fold:

1. It seemed to bring on more jerks than a political campaigning team

2. Stink’s obsession with talking about it at home, at class, in the car and with friends and family (including folk he didn’t know but could perhaps spare a few moments to shoot the shxxt about mushroom magic) was ANNOYING. It was affecting his school work, and more important, my sanity.

The final nail in the coffin arrived after one mother at school – a particularly intense woman who cooks organic, gluten free and dairy free with the same tenacity as a dog gnawing on a grass-fed cow bone – drove the point home that video games was about the worst thing a parent could give her children. Her points included many from This article (though this is not the one she gave me) as well as from this book: Failure to Connect.book

“We’re off the Wii, just like we had to take you off the DS!” I told Stink. “Your body can’t handle it!”

Stink cried, I breathed a sigh of relief, but then something crazy happened.

He ticked anyway.

I’m not sure if it was the pressure from State testing. Perhaps the new Intuniv we were on for focus. Maybe the dander from some cat ten miles away that got kicked into our smog-filled Valley air and landed in his nostrils on a windy Thursday morning while he was lagging getting into our French fry smelling dirty SUV for one more day of almost being late to school. But the tics were back with a vengeance.

So it wasn’t the video games only!

Duh.

And that is when, after a lot of contemplation/meditation/prayer, I decided to let Stink play the video games again.

He doesn’t have free reign. He has limits.

Stink’s Video Game Routine

* NONE Monday – Thursday

* Friday – One hour after school

* Saturday – One hour (with breaks in between)

* Sunday – 1/2 hour after church

Rules for Play

* He gets a timer (a piggy timer, to be exact). He turns the little fat pink head for 30 minutes and plays. If he goes over his time, he loses out on the next 30 minutes.

* I use it as incentive to get chores done in addition to his current jobs. “Hey, Stink, I really need my car cleaned! Tell you what… spend 20 minutes cleaning out the school papers from 2009 and I’ll give you five more minutes on the Wii!” It’s an amazing bargain.

My Current Thoughts on Video Games

Stink’s tics are still minimal, so like some folk who like wine, I’d rather not throw away the baby with the bath water. Our motto: Have a glass of Mario here and there. If you start slobbering like a fool and can’t concentrate on your family and friends because you’re drunk on electronics, it’s time to detox yet again.

As for the mom who ferociously clings to her manual for non-electronic child rearing, she also followed me out to the car a few weeks ago to tell me that she was doing “Just a little research” on rubber ducks – one of Stink’ s many collections. In low and confidential whispers through my car door window, she said that some quackers have been recalled from China due to chemicals or crazy toxins or something else I could not catch because my head was spinning in disbelief over our conversation. (At least I knew now why the duck Stink had given her son as a gift – one her son had wanted – was sitting on the Welcome Mat outside her door when I went to pick Stink up from their weekly writing meeting.)

For her, no snark intended, that’s a fine way to parent. Her son is truly adorable and sweet and she is a very good and concerned mama. I have learned a lot from her. But for me, this borders on fear induced parenting. Yes, we need to keep our kids safe, but at what cost? When do we protect the body but lose the soul?

I say “Duck You” to extremity. Like my kid’s toys, if a little squeaking results from a whole lot of fun (within reason) then I am okay.

Is your child affected by video games of any kind? I would love to know.

Come check me out over at the New Jersey Center for Tourette Syndrome where this column is syndicated. Lots of awesome parents over there and kids who write about all things tic related!

* Photo on top taken of Miss L, Pip and Stink doing their signature “lice hug!” (They can be social as they want, but I can’t go through the Lice Fiasco of 2010 EVER AGAIN, nor can my husband. I think he’d rather pay the “Lice Fairy” another $200 to sit in our beat up kitchen and pull nits than hear me ruminate for hours about if RIT – the hair chemicals sold at Rite Aid and other fine over the counter establishments – does or does not induce throat clears or head nods. Who can blame him? Check out the kids. They could be cast in a Tim Burton movie!)

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Peace in the Process, Joy in the Journey

Peace in the Process, Joy in the Journey

It’s a new year which means it’s time to make some changes. For some people, it’s to lose 10 pounds. For others, it’s to get a great job. I’m no mind reader, but I’m guessing that for many of you it’s to “Stop those Tics!”

I wish there was some magic elixir out there I could recommend, but in my six years at this, there simply isn’t. Everyone’s child is different with a unique personality and temperament.  As parents, we must be our child’s best advocate.

While I will absolutely spend time in January discussing vitamins and techniques that have worked for Stink, what I feel compelled to remind you today is that Tourettes is not a sprint. It is a marathon. This means that, like with any physical sport, you need to stretch and prepare.

Get comfortable. (Read up on Tourettes! It’s more common than you think! Latitudes and The New Jersey Center for Tourette Syndrome are awesome. Even better is a personal support group. Don’t have one? Start one. Comment here and meet people. Get connected!)

Find a coach. (No shame in getting help from a therapist or pastor or good friend! I am shameless and do all 3.)

Get a good workout plan. (Do you want to pursue medicine? Alternative therapy like acupuncture or nutrition? Cognitive behavior therapy? Stink is on some focus meds, after years of going without, and vitamins. Pretty simple. I’ll share more later.)

Find some cheerleaders. (Tourettes is a perfect invitation to rid yourself of toxic people. Replace them with others that make you laugh and cheer you on! I have one friend I speak to every day. Topanga T is the Gail to my Oprah. In ten minutes we can cover religion, vintage sette sofas, Pinterest popcorn recipes, cancer, thrift stores, fire insurance, cock roaches and hair dye. We never get off the phone without saying, “I love you.” Best part of my day.)

Enjoy yourself.

“What was that?” you might say? “My kid is rolling his eyes more than Kim Kardashian in a Walmart Maternity section!”

“Yes,” I will tell you. “Enjoy yourself. And more important, enjoy your child. Because they are not their tics. They are their soul.”

Get over it! I never got frustrated with kid and I never felt sorry for myself.  There have been times when Stink has cleared his throat so many times in a row I had to put in ear plugs and walk out.

I have farmed him out to friends overnight so I wouldn’t have to watch an incessant head bob.

I have sat locked in car rides up mountains counting how many times he has clicked his tongue and been so insane with frustration I’d make my husband pull over to the side of the road so I could step away. “What are you doing (chirp chirp) Mama!” Stink would yell from the car. “Wishing I could jump into a soft landing at Tic Free Valley Below! Loving this beautiful view, baby!” I’d call back.

I had some rough times – still do.

But I’ve also come to realize, over the years, that tics come and go. It’s annoying that they always come back, but it’s beautiful that there is a break. And, like with any rest, clarity comes.

For me, clarity started in small whispers. “Your son has some eye rolls, but he’s a hysterical joke teller.”

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It then got a bit louder. “Stink occasionally warbles or squeaks, but he never stops laughing. He’s writing an adventure novel and has never met a dog or new person he hasn’t liked. He’s pretty darn creative, and, well, let’s face it. He’s weird! Hooray for oddness!”

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These days, clarity is screaming, “Stink sometimes squeaks in between his sentences, but he gives talks about T.S. in class!

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He is going to three birthday parties this month because he’s more social than Twitter!

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He has a little Tourettes and whole lot of confidence! HE IS NOT MY SON WITH TOURETTES that is also really amazing. HE IS AMAZING and, oh yeah, he has Tourettes.”

Parents, if you’re new to this, I promise you. We can’t always cure our kids bodies, but we can always always always support their spirits which will transcend any minor quirks and twitches.

Who wants to join me on Team Tourettes in 2013? Let’s train together! Let’s have peace in the process and joy in the journey. And let’s let clarity in with whispers, then talking and then SHOUTS.

I’ll leave you with this Phil Collin’s song below. The first time I heard it, I thought of my son. And now, I think of you. The words are pretty perfect for tics and Tourettes.

Until next time, Andrea

What Are You Looking For In a TS Blog?

Greetings from Los Angeles. As of today, tics for Stink remain at a minimum. (Knock on fake wood desk.) I need to make a few gluten free sandwiches with natural strawberry jelly and carrot sticks (can you feel my son’s excitement?) so I’ll keep this short:

Is this blog enough?

Assuming I continue to write 3 days/week, I really want to know: Why do you come here?

* Tips on diet?

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Emotional support?

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*Updates on my year without beer?
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That’s me on the right!

I ask because I’m considering doing another site – a kind of “upgrade” support group type site. I belong to my beloved private one – Twitch and Bitch – and it’s been awesome. As much as I love writing here – and will continue to for FREE – I wonder if maybe it’s time to dig a bit deeper and bust out the diet charts, the doctor referrals throughout the USA, the homeopathic ads and all the stuff that has really helped Stink.

The fee would be minimal and it would provide a deeper connection to folk going through crisis. As a produced TV and magazine writer, it would also allow me to continue to make a living at my craft providing content for what I am passionate about, rather than taking on another gig pushing organic diapers for $5 bucks/ post to elite parents with kids named after cities and house plants whose feeeeeelings define the universe and who think tics are little black bugs you catch at camp.

My concern with an upgrade site, of course, is that I don’t come of predatory. Example: A big reason I don’t have blog ads here is that I am not a fan of the whole “Oooooh, your son is having seizure like face tics? Click on my ad for magnesium so I can make 6 cents on a click-through and you can waste money on a supplement that may or may not work.”

* For the record: Love the magnesium! More on that another day. (And those You Tube ads at the bottom? Not sure how they got there. Like tics, some things remain a mystery and I can’t worry about it.)

In conclusion, go check out my favorite TS site – the New Jersey Center for Tourette Syndrome. They could use some love and some bloggers also. Are you a writer? I will hook you up over there! Great for your portfolio and you can help moms and dads struggling with tic issues. Their latest post? Dental appliances and tics. I spoke about that once before and it’s an option if your kid’s tics are really yukky.

So…. feedback please! I really want to know what you think of an upgrade site!