Sounding off about vocals: A real term for this irritation!

Those of you with tics who have written to me often say that your noises bug you. Those of you without TS but who live with it say the sounds can drive you batty.

I have nothing but sympathy for people with TS when their symptoms drive them nuts. Honestly, if my friend’s kid is ticking, doesn’t bug me in the slightest! But when it’s my kid, I really struggle.

Perhaps this is like people who have sympathy for the anxiety/neurotic/blabbermouth type. You might find those other emotionally inclined people funny, but if you lived with them, you might want to kick them to the closest pharmacy and insist they down a bottle of Xanax with a Zoloft chaser.

For those of you who have issues with vocals — despite feeling guilty for having such issues — I am pleased to announce you might actually have a mental disorder!

This just in from someone in my Twitch and Bitch private group: I had to share with my loyal mamas here! You’re welcome.

Misophonia:

Misophonia, literally “hatred of sound”, is a neurological disorder in which negative experiences (anger, flight, hatred and disgust) are triggered by specific sounds.  The sounds can be loud or soft. The term was coined by American neuroscientists Pawel Jastreboff and Margaret Jastreboff and is often used interchangeably with the term selective sound sensitivity.

Misophonia has not been classified as a discrete disorder in DSM-5 or ICD-10, but in 2013 three psychiatrists at the Academic Medical Center in Amsterdam formulated diagnostic criteria for it based on the largest cohort of misophonia patients so far, and suggested that it be classified as a separate psychiatric disorder. Continue reading

Oxytocin and attachment

A couple years ago, I began researching bonding, attachment and oxytocin.

oxytocin neurologically giftedOxytocin is a powerful hormone that is necessary for bonding and attachment.  It is often called the “love” molecule.  My son with tactile sensory sensitivity as well as TS Plus was not getting any oxytocin and it worried me.

When Nathan was a baby he pushed his body away from mine and cried louder when I tried to soothe him.  It was a painful phenomena not being able to comfort or soothe your child with cuddling, contact and kisses.  Every time he pulled away or reacted with anger or violence to intimate touching was painful for everyone and it is hard not to just stop reaching out due to how uncomfortable he obviously was with touch.

When we hug or kiss a loved one, oxytocin levels drive up. It also acts as a neurotransmitter in the brain. In fact, the hormone plays a huge role in pair bonding. If Nathan fell off his bike, I learned not to go and see if he was okay because I would end up physically hurt and not have been able to comfort him in any way in the process.  By age 7 or 8 his combined disorders made it difficult to tell if he would notice if I was suddenly not there.  I had a difficult time answering the question at that point and I didn’t like that at all.

Oxytocin Neurologically GiftedSo we needed a plan to get his body to make some oxytocin and hopefully in the process, bring us closer together.  Plans work better when we make them together so I talked to Nathan.  I told him about oxytocin, what it does and how we could potentially get more.  We came up with cuddle time.  We did have to implement a minimum time as it was very difficult and sometimes painful for Nathan with his disorders and sensitivities.

Cuddle time would happen at bedtime, when he was finishing a last game on his Ipod, I could read to him, I could scratch or rub his back…anything, even tickles.  The only rule was that it had to have skin on skin contact. The proposed benefits: Continue reading

‘Twas the night before TicMas…

fb …And all through the house
My Stinker was squeaking
A bit like a mouse

It wasn’t too bad, but it did make me pause
That I’d sure like a gift from dear old Santa Clause
One for myself cause’ I’m selfish that way

But one also for you to arrive Christmas Day
Just a wee little something for us all to calm down
When Tourettes takes our smiles and turns them to frowns

You see, you folk are e-mailing me all over the place
That your kids’ tics are growing at quite a fast pace
You’re all freaking out

“Could it be sugar or Grinches
That’s causing the coughs and the crazy nose pinches?”
And while some of its diet and perhaps lack of sleep

The truth is that none of this might cause the squeaks
It could just be that tics go up and go down
And who knows the darn reason those darn tics hang around!

So Dear Santa, it’s Andrea… help me to feel fine
For my son feels content
Help me, too, fall in line!

Bring me a present that might not mean healing
But instead comes with grace and with thanks and good feeling
For my boy – he’s so big now – oh, my, how he’s grown

Give it 10 years and I’ll be here alone
I don’t want to be thinking, “I missed this great season…
…I was freaked out and stressed. I blame tics for the reason!”

No, let me remember that all kids have stuff
It’s our love and our compassion
that must be enough

So to moms out there struggling, with all of my might
Take my virtual hugs
It’ll all be alright!

Acupuncture to the rescue: Tics reduced!

Keeping this short as I’m at work, but had to say that Stink is seeing relief already from one treatment of acupuncture last week. I am so relieved. Energy down, vocals almost gone, still major eye rolling and head shakes/head butts, but Martina says it’ll take a week or so to really get suckers subdued.

I’m lucky as my acupuncturist, the incredibly talented Martina Eberhard, happens to live across the street from me. She practices out her house. A few years back, she had come up with a treatment plan and supplements that she was convinced would really give Stink 90 percent relief.

We ended up not seeing her plan to fruition because of cost, as well as a major tic reduction just with the 20 percent of the plan she implemented. (Sadly, this is akin to a bipolar person going off their meds because they “feel so much better” suddenly. Not smart, but it happens.)

As fate would have it, just when I started to lose my brain with tics, Martina mentioned that she saw this article on a teen Miss America who had severe TS and was “cured” through acupuncture. The formulas and treatment used on her were the same as Martina came up with two years ago, inspiring her even more to work on Stink again!

And so, with my heart in my hands, tears in my eyes, I said “yes.” Expense is an issue as our revenue went down 75 percent recently, despite me going back to work. (My hubby was Daddy Warbucks, not his eccentric artist wife. Shock!) Where there’s a will, however, there’s a way, and we found a trade that would work for everyone.

As luck would have it, her daughter is the one and only, Miss L! After I pick up the three kids from school and give them snacks, I tote Stink across the street for treatment while the girls and I do homework. Rex is doing a ton of house work for her, including hanging her Christmas lights, fixing her car, doing yard work, fixing her dinner twice a week and whatever else she has on her “honey do” list as a busy single mama. I am going to start writing articles again.

I tell you all this because where there is a will there’s a way!

The other night we had an impromptu BBQ in the back yard. My sweet hubby cooked for us all, including Miss L and Martina. Connection and friendship out trump tics every time.

acu 2I’ll keep you posted! Meanwhile, is something working for you?

Top 13 TS Moments of 2013

2013 was a big year for the TS community both in Canada and internationally. Here’s the TSFC’s list of the biggest TS moments of 2013. Do they match yours?

 

13. Former Idol Contestant James Durbin Releases First Single from Second Album

JamesDurbinCoverx-large

12. Man with TS Kicked Off Plane for Vocal Tic

screenshot-111. Carlos Guevara Wins Hearts on X Factor

23592145_BG210. Young Man Faces Eviction for Tics, TSFC Weighs In

eviction9. The 5th Annual Trek for Tourette Brings Canada Together For a Day

560131_10150677600424681_1123930280_n8. The DSM-5 Releases New Diagnostic Criteria for TS

7. “Building Your Toolbox” at the National Conference on Tourette Syndrome Plus in Mississauga, Ontario

IMG_0008 Continue reading

I spy new science on tic relief

spies

Everyone in my group is kind of freaking out about tics, including me. Not sure if it’s Christmas or the weather or just stress from school, but they are in high gear.

As a background, most of us have kids between the ages of 8 and 12 — the majority being boys.

Most of us moms are trying super hard to “accept” this condition and all that goes with it — the ADD or the OCD, the “spectrum” like symptoms ranging from obsessions over video games to underlying defiance.

Lest any of you are new to the TS scene, let me reassure you that NONE of the kids in my private group are seeing shrinks for outrageous behavior that is often associated with Tourettes in the media. In fact, the more parents of neurotypical kids I chat with the more I see that talking back, wilfulness, and general lazy butt behavior is developmental for all kids.

The best thing I’ve discovered is to not freak out about any “issues” being TS-related, but simply treat them the way I would treat my own daughter’s turd like the-world-revolves around me attitude at times. This entails a “It’s my home/my rules” full frontal attack.

I don’t feel bad about it.

I don’t spend give Tourettes a free pass for bad manners, selfishness and poor attitude.

For the most part, I’m realizing that tics are here to stay and the best thing I can do as a parent of my beautiful son is to encourage his gifts, not obsess about his “flaws” that — let’s get real — are not really flaws. Continue reading

Emotional dysregulation: Just like regular kids, but only moreso!

Ken Shyminsky, a former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.

A very dear friend and expert special educator insists that kids who have neurological disorder are just like regular kids …

only moreso!

Let me explain what that confusing statement means…

Kids who have neurological disorders have feelings just like everyone else, except their feelings are so much more intense. They feel so much more of everything. They experience more joy when happy, (hence their hyperactivity), they feel more pain when injured (we think they’re over-reacting), more anger when frustrated or disappointed (leading to rage) and more sadness (also misinterpreted as over-reacting).

Emotional Dysregulation:  Neurologically GiftedThis evening, my stepson erupted into a fit of screaming and pounding the floor in a rage over homework, to total recovery and calm. Soon after, he collapsed into a heap of tears as he suddenly recalled the death of his grandmother the previous year.

The intense grief lasted about 2 minutes, and he recovered once again, to join his friends in playing basketball. I shouldn’t be surprised by his behavior tonight. He was bound to fall from perfection at some point. He’s been stable and even tempered for months – and it’s because of consistency at home and at school.

Kids with neurological disorders are incredibly susceptible to change, as we all are …

only moreso! Continue reading

South Jersey family hit hard by Tourette Syndrome throws support behind NJ Walks for TS program

Lori Theodoropoulos has been through a lot with her now 28-year-old daughter, also named Lori. The younger Lori was diagnosed with Tourette Syndrome at age 6, has been asked to leave support groups because of the invasiveness of her tics and has been at the mercy of a health-care system unable to find the right medication and general therapeutic resources to help her.

Theodoropoulos, of Marlton, N.J., and her daughter have solicited the knowledge of noted TS experts Drs. James Leckman of Yale University in Connecticut – “He’s my daughter’s closest friend and has been a great support,” the elder Lori has said – and Anthony Rostain of the Children’s Hospital of Philadelphia and the University of Pennsylvania, each of whom has given of his time freely over many years to help Lori. But despite that sustained level of excellent assistance and care, Lori continues to struggle – particularly in the area of accepting that Tourette Syndrome is a big part of her life.

Acceptance is a concept with more than one definition to those affected by Tourette: They must come to terms with how Tourette Syndrome has shaped their lives while also desiring a favorable reception by loved ones, educators, medical professionals and the general public regardless of their condition.

It’s the balance between those definitions that led Theodoropoulos to throw her support behind the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) annual NJ Walks for TS awareness and fundraising campaign, which took place November 23 at Mendham’s Borough Park.

The 4th annual event attracted its largest crowd to date – with more than 400 people showing up despite cold, breezy conditions – and tens of thousands of dollars being donated. Theodoropoulos believes the time is now to capitalize on that kind of momentum. Continue reading

NJCTS’ School In-Service Program gets big boost from record NJ Walks for TS at Mendham turnout

When the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) launched the NJ Walks for TS program in 2010, it had the vision of the New Jersey Tourette community assembling en masse to promote awareness and advocacy for a neurological disorder that remains misdiagnosed and misunderstood by the general public, education and medical professionals.

That mission is not yet fully accomplished, but it is a lot closer to becoming a reality after the 4th annual NJ Walks for TS at Mendham on November 23 drew the program’s largest crowd and greatest fundraising effort to date.

Despite bone-chilling temperatures and brisk winds, more than 400 runners, walkers, volunteers, legislators and members of the general public from more than half of New Jersey’s 21 counties descended upon Borough Park and donned bright orange and green TS awareness T-shirts to support not only NJCTS, but their family, friends, co- workers and the many others affected by Tourette Syndrome.

“The walk gave me opportunity to meet other people with Tourette’s and hear their stories,” said Ross Yellin, one of several dozen volunteers who helped out at the event. NJCTS heavily relies on a statewide volunteer network to accomplish its mission of reaching the Tourette Syndrome community through its plethora of wide-reaching programs and services.

The NJ Walks for TS at Mendham fundraising site remained open through December 2 and received additional donations that helped surpass the goal of raising $50,000 to fund the organization’s landmark School In-Service Program, which seeks to educate students and teachers at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying initiatives and self-advocacy. Continue reading

Skating in circles, not getting dizzy

pic for youSunday after church we took the kids ice skating. For those of you who live in beautiful wintry wonderlands, picture a frozen pond surrounded by snow capped trees and cardinals.

For those living in the city, like us, picture a mall with busy traffic on one side and a parking lot on the other. Picture kids in shorts and parents in tank tops. It wasn’t Norman Rockwell holidays In Dreamland, but we had a blast.

With Stink’s tics in high gear these days (lots of head shakes forward and back, side to side and strained speaking that sounds a bit screechy) I was only too happy to get on the ice and go round and round – getting that pent up “Ooooh, I wish it would stop” energy out.

Lord knows my head had been going in circles as well. “Oh, no, does he need to be put on medication finally? Should we not have taken him off the focus pills? Is it too much gluten? Do we need to go back to the supplements again? Acupuncture? Me going back to work?”

While all of these concerns are valid, I can’t let them define my life or his. The reason? His tics don’t bug him. They only bug me. Which, again, and I fully admit this, makes me a narcissist. BooIt’s why I’m bringing this up now – and I really want your opinion, as it relates to my book. (Yup, more about me. Narcissist!) Continue reading