Week 4 on Intuniv: Speeding up to slow down

Had our appointment today with the great Dr. McCracken at UCLA. Stink is still thriving on meds. We are going to push the meds up to three a day instead of just two.

“Why” I asked. He’s doing so well.

“He is,” was the response, “But let’s be sure to find our ‘sweet spot’ and then we can just settle in. Call if there are any issues at all.”

“Like him not waking up from a dead sleep?” I eye -alled him carefully.

“That won’t be an issue at all,” he promised. He said the worst thing Stink would do is faint or get super tired.

Ironically, Stink has not been all that exhausted with the first and second round of pills. Perhaps he was operating at a more “hyper” level than I even imagined. He’s not a kid to climb the walls, but clearly his brain was going, going, going, and now he’s able to channel his energy so much better. Continue reading

There is no “normal”

From an early age, I struggled with my self-esteem. My high school years were filled with worrying constantly about what others thought of me and doing my best to fit in.

At a high school reunion a few years back, I realized that every other person in my school was doing the same exact thing that I was, simply trying her best to fit in. Some just disguised their angst a little better than others. The only time I felt really comfortable was when I went on stage in the character of someone else – anyone else but me.

As the parent of a child who is different – my 14-year-old son has Tourette Syndrome and OCD — I worry constantly that he will be ridiculed and ostracized because of his peculiarities. And with Jake starting high school in the fall, that worry is even bigger. He will be attending a new school with new kids who have no idea who he is. I am equal parts excited and terrified for his new beginning.

But here’s the funny part: Jake is absolutely ecstatic. He’s proud of who he is and always has been. Does he tic? Yes. Does he care? No. Not at all. Somehow this mother, who never really liked who she was, who never felt up to par when she was 14 years old, somehow this mother gave birth to and raised a child who is proud of differences.

I’ve always taught Jake that he’s perfect just the way he is. I’ve always made certain he believed that. But then I’d turn around and pray to God to “fix” Jake and make him “normal.” I was a hypocrite. I was the one who needed fixing because I had never dealt with my own issues from high school. These weren’t Jake’s issues.

Thank God, literally, that my prayers weren’t answered because Jake has taught me a beautiful life lesson that my parents tried so hard to teach me – there is no normal – there’s just me. And it’s taken a child, a very special, very different child to open my heart and help me see myself for who I really am, not who I hoped I would be, or who someone else thought I should be.

So when Jake starts school this fall, I hope the students and faculty are ready for him because he’s certain to change a few perceptions about what’s normal and what’s not.

Words are more powerful than sticks AND stones

Sticks and stones can break my bones, but words can never harm me.

If only that were true.  Being a word girl, I know the power that a word can have.  One word can change your life for better or for worse.  And while it’s true that a word can make us feel elated or dejected, furious or frustrated, it only has that power if we allow it.  After all, it is only a word.  The emotion comes from somewhere else, somewhere deeper and we are in control of that.

In the past few years, I have fought and won a battle with one word in particular – one word that changed my life and nearly destroyed my spirit until I decided that I was the one in control.  That word is Tourette.

When Jacob was diagnosed I found it difficult to speak the word, to say “my son has Tourette.”  That word was surrounded by so many negative stereotypes propelled by the media and I felt that if I said the word I would unleash all of that bad karma onto Jacob and shatter his reality – the reality that he is a normal kid who happens to have TS.

But I watched Jacob and I learned a powerful lesson from him: He was never afraid to tell people that Tourette was a part of his makeup.  And he wasn’t afraid because he knew that no matter what other people thought about him, he knew who he really was and nothing they could say or do would change that.  He was not controlled by the word Tourette or by other people’s perceptions of a person who has TS.

Since I’ve let go and started saying the word out loud, I have seen some wonderful things happen.  Being open has given me the opportunity to educate others and start breaking down the stereotypes that can be so hurtful.

Letting go of that one word has enabled me to release the hold other words have had on my life for quite some time, words that have  left me feeling empty and undeserving over the years.  Now I feel liberated and less afraid of what others think of me.  The older I get the more I realize that what matters is only what I think of myself and I’m learning to think good things.

Words are powerful, but people are empowered.

Week 2 on Intuniv: So far, so good

I’m hesitant to type this, for whenever I say, “Tics are looking good!” two minutes later my kid is honking like a seal and spinning like an anorexic mama on a bike at the gym. But so far, the Intuniv doesn’t seem to be having a bad effect on my son. He does seem more focused, and he doesn’t tic much. It’s lovely.

Yesterday, at UCLA, I looked Dr. McCracken in the eye and said that we had to agree to disagree on the placebo. “I know it messed him up,” I said.

He just looked at me and smiled.

“I”m not 100 percent convinced this new drug isn’t going to send my Stink over the edge.”

This time, he spoke. “You need to have a bit more confidence, I believe!”

After the past two months, the truth is, my confidence in anything that smacks of Western Medicine is shot. And yet, I do 100 percent believe the good doc has decent intentions. I believe he is actually really competent. I’m just scared to admit that this will work for my kid – the one I’ve been cooking gluten free/caesin free for… for five years. The one who I worry about food dyes and freak out about at birthday parties. Continue reading

At Camp Bernie, there’s no such thing as “bad parenting”

The thing about eating out in public with a child who has Tourette Syndrome and its associated disorders is that it gets a little dicey.  Ok, sometimes a LOT dicey.

The first hurdle of the evening when going out to dinner is the stimulation imposed on Bean by the restaurant…loud music and voices, lots of people all sitting in close vicinity to each other, lots of movement as servers fly by with giant trays of food and drinks, many different and pungent smells, having to wait to be seated, having to sit where we’re told, not to mention the décor…everything starts assaulting her senses the minute we step in the door.

Sometimes these things don’t seem to bother her so much; perhaps she’s had an especially good and low-stress day and she is well rested and in good spirits and her “sensory cup” has room left for such a rich sensory experience that day.

The next hurdle we must face is her OCD which is also assaulted at a restaurant…she must sit in a chair that is different in a spot that is different with plates and utensils that are different, the food may not be how she expects it to be, there may be people sitting too close to our table, or a dirty spot on the table, or perhaps a garnish on her plate that deems the entire meal inedible.

On the occasions that her OCD isn’t bothered greatly by the restaurant, we have to next deal with the ADHD.  That means Bean cannot sit on her chair, she needs to fidget on her chair, stand up, bounce, go to the bathroom several times, she cannot wait to be seated, cannot wait to be served, cannot wait for her drink refill to arrive, cannot wait to leave when she’s done.

She is too distracted by the games on the kid menu, or munching on tortilla chips, to focus on deciding which meal she’d like.  And even after she decides, she often changes her mind several times — absolutely unsure which choice is the best. And if we make it through all of that, there are always the tics. Continue reading

Camp Bernie: The place where everyone knows your name and what you’re going through

DonnaF and her family have been regulars at the New Jersey Center for Tourette Syndrome Family Retreat Weekend since its inception 8 years ago at YMCA Camp Bernie.

It was eight years ago this weekend that we first met another child with Tourette Syndrome, I thought as we drove up the road again toward YMCA Camp Bernie for the New Jersey Center for Tourette Syndrome Family Retreat Weekend. It was the first time we found out we and Drew were not alone.

Tons of emotions and memories flooded through all of us as we drove up the road toward the dining hall. Knowing that once we entered we would get welcoming hugs from Kelly and Marty made coming back even sweeter. It was a place where “everyone knew your name,” even if they didn’t, and we all had one thing in common.  We all are someone, or love someone, who has Tourette syndrome.

This year was no different, and as we walked in and said our hellos and got our hugs, my 14-year-old daughter Ashley was recruited to take family pictures, The rest of the family, including my 19-year-old son Drew — who has TS — headed for our cabin to unpack and see if we could start an early game of volleyball to help welcome newcomers.

After a few hours came one of our favorite times at camp — campfire. There, families get to meet and interact, and the kids get to make smores and sing campfire songs.  Light sticks are passed out, and we get to watch the kids open up and make friends.

Returning families get to reconnect with old friends, and new families get to relax and find that as much as this weekend will be about having Tourette Syndrome, it will also be about fun and freedom for the kids to be who they are without being made fun of or standing out. Continue reading

Thankfully, my son insisted we go to Camp Bernie!

I have to admit, my 11-year-old gets all the credit for making sure our family made our first New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie.

From the moment he heard about the camp, he was insistent that we would go. The camp did not disappoint, for my son it was an opportunity to feel free of being the only kid in the room with tics. For my other kids, it was a fun camp experience. And for me, it was a chance to share and laugh with other parents who truly do understand.

Thanks to the great NJCTS staff and all who added to this great event!

Read more about the 8th annual New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie:

Stepping out of our comfort zone for HIS comfort

Help from mother/son combo made Camp Bernie weekend priceless

“F” is for family and fun at Camp Bernie

Happy campers share family retreat weekend experiences

Camp is a haven for those who “get it”

Past blogs about camp on TSParentsOnline

 

Stepping out of our comfort zone for his comfort

DiannaD and her family are all smiles as they take time out for a family portrait during the 8th annual New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie.

I will be the first to admit it, I am not an “outdoorsy” person. To add to that, my family isnt either. In this day and age, my kids are happy staying indoors playing with their iPods, laptops, videos or reading a book. Our activities usually involve baseball games, which means we sit and watch our 13-year-old play.

So when I saw the invite for the New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie, I was hesitant. But then I thought, “Why cant we step out of our comfort zone to make Jaden comfortable?”

He was diagnosed with TS at the age of 4. His tics have waxed and waned, and he never has been socially awkward — until this year. Age 9, third grade and being one of the smartest in the classroom was challenging, tough and uncomfortable when you add Tourette … and fighting to hold it in ALL day — so much so that he would complain about his muscles hurting, as if he worked out all day.

I had the conversation with him. I will never forget this day. It was a Wednesday, January 11th. He asked me, “Mom, what’s wrong with me? My friends keep asking me why I make these noises and I jerk sometimes. I can’t hold it in sometimes.” Continue reading

Help from mother/son combo made family retreat weekend priceless

Ethan Lederman, at center holding a plastic cup, was wide-eyed with wonder during the habitat nature walk at the 8th annual New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie.

Our family looked forward all year to returning to Camp Bernie for what would be our second time. We had such a great and poignant experience during last year’s camp and really couldn’t wait to return. Nonetheless, we nearly got back in our car and started home within 10 minutes of our arrival.

While I haven’t seen the photo the NJCTS staff likes to take of each family on arrival, I can only imagine it images us somewhere between Munch’s Scream and Charlie Brown at the moment Lucy yanks the football.

My son, Ethan, 11, who has Tourette Syndrome, ADD and an consistently disruptive OCD, was experiencing a barrage of mental and motor tics and refused to stand with us for the picture. We comforted, cajoled, muscled him, to no avail and, given the stress of the moment, I couldn’t actually tell you what finally brought him into the line of view for the camera. 

Not unlike other kids with TS, Ethan doesn’t take well to transition or a break in his routine, even if it means Camp Bernie, an amusement park, boardwalk or any other activity that has pure fun written all over it. Take the excitement he was feeling, couple it with a change in routine and our mandate of posing for a picture, and we’d created the perfect tic storm.

Continue reading