Our journey begins

Well, our journey began just after my daughter Ally’s 9th birthday in February 2009. It came in the form of an e-mail from her 3rd-grade teacher, who was writing to inform me that over the last few weeks my daughter had been making noises during class. Among them were animal sounds and adding sound effects to stories she had been reading to the class.

The “AH-HA” moment came though at the end of the e-mail when the teacher wrote, “It does not look like she realizes that she is even making the sounds.” It was that sentence that connected all the dots for me:

  • Things I had been seeing over the past year.
  • All of the sudden movements I would see her do while sitting on my lap that I kept asking her if she was cold.
  • The funny movements I observed her doing with her arms while playing in the backyard.

With that simple sentence, the word “Tourette” flashed in my head. I had been raised by a father who was a drug company rep and a mother who was a nurse, so my knowledge of medicine was more than your average parent. That day, I called and made an appointment with her pediatrician.

We were lucky the day we went for the visit because Dr. Patel, who is head of pediatrics at our local hospital, was in and was the doctor who examined her. He turned to me after the exam and said,  “You probably already know what I’m going to tell you as to what I think it is?” I just shook my head acknowledging that I, too, suspected Tourette. Continue reading

A messy situation

It’s been two weeks since I posted? Really? How did that happen? Oh, yeah:

  • My patience was buried in the kids’ bedroom under their shared space.
  • My sanity was buried under Stink’s desk.
  • And somewhere along the line I permanently lost my brain among toys and games that had missing pieces and migraines from having their parts shoved so hard into shelving they couldn’t be wrenched out with crow bar.

Thank God Farmer Stacey — a dear friend I met from my Baby Center writing days because, you know, I was such and expert in parenting — gave me some super helpful advice in dealing with kids and their stuff. She promised it would make my life, and theirs, so much smoother. Here are some excerpts from our conversation: Continue reading

Conditional Corner: The end of an OCD era

Conditional Corner is a series that runs Fridays on TSParentsOnline. All stories, including this one by Vrinda Pendred, were originally published at Conditional Publications.

When I was 11, my father went on holiday to Mexico City and brought back too many photographs, a Mayan calendar coin inside of a glass pyramidal paperweight, and a story about the Mayan calendar coming to an end on the winter solstice, 2012.

No one knew I had OCD at that time.  If they had, perhaps this story would not have been passed on to me so early.  What was a joke to the general public over this year was, in fact, an obsession that had plagued me for 18 years.

At 11, 2012 felt like a lifetime away.  By 2010, the anxiety started to crush me.  I had a small child to think about.  Would I never get to see him grow up?  Would he never have a future?  I wasn’t ready to die.  I have brothers overseas whom I’ve never met – I was desperate to meet them before 2012 because a mad part of me was convinced I would never see them otherwise.  Perhaps if the world did not end, something would happen to prevent me from ever crossing the Atlantic.  Maybe I would never see my old friends back in my birthplace of America again.

I listened to podcasts about the prediction.  I watched documentaries.  I read books.  I was searching for some clever person who could contradict the prophesy in a more educated way, rather than simply dismissing it as nonsense.  These were my compulsions, my way of balancing the anxiety that consumed me as time passed, beyond my control.

Then suddenly it was the 20th of December.  Just one day to go.  I couldn’t sleep.  I KNEW it was stupid, yet I just couldn’t shake off the panic.

I can’t actually put into words what I felt about 2012.  It was terrifying to know that, if something DID happen, I could do nothing to stop it.  Time would march on without me.

On 21st December, at the zenith of the winter solstice, I was busy working and didn’t even notice the fateful hour had passed.  When I did at last check the time, I can’t say how relieved I was to see that we had all made it.  I had known all along that was what would happen.  But OCD meant I couldn’t fully believe that.

And thinking about it, I want to state for the record that 21st December WAS the end of the world as I knew it.  After almost 20 years, I could finally breathe easy.  I now truly believe that the world will carry on.  Life will continue.  All apocalyptic predictions are nonsense.  I can really say that, now, with conviction.  I couldn’t do that two weeks ago.

And it’s a beautiful feeling, realizing that you just CAN’T predict the future. Que sera sera – whatever will be, will be.  There’s freedom in this new ignorance.

We made it.  Here’s to the future, whatever it may bring.

Ask Dr. Ticcy: How do I support the caregiver of a person with TS?

Ask_Dr_Ticcy_Logo-238x250Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dear Dr. Ticcy,

HELP! My grandson has been diagnosed with TS complete with the Jekyll and Hyde rages, which are overwhelming for my daughter to say the least. He is 6, and tells her that he hates her and wishes she was dead. He would like to stick nails in her eyes and so on. So, tics are one thing but these rages are frightening to say the least.

I am feeling helpless to help! He is on medication including one for his ADHD. I don’t even know why I’m writing this other than as a mother and grandmother I’m feeling absolutely powerless so I can only imagine how my daughter is feeling. How can I help her?

Thanks for listening,
Concerned Mom/Grandmother Continue reading

Well, it’s not Autism

Well, there is no indication of Autism disorder, and Dr. Fisch also believes there’s no evidence of ODD or mood disorder — that it’s just a culmination of the TS, OCD, ADHD and anxiety bringing on frustration that he doesn’t know how to cope with, which points to adjustment disorder.

We’ve knocked out two of the most worrisome diagnoses that he had and eliminated the possibility of another, and we even talked about our wanting to move to Denver. She grew up in Jefferson County schools, and her sister taught there, and she says that Colorado takes all their surplus funds and — unlike other states — puts it into their schools.

The schools up there are some of the best in the country — especially for special needs kids, so once we get moved and settled in and get Corey tested for where he needs to be, he’ll start settling in and a lot of his more troublesome symptoms will likely start to disappear. This is good news!

Read more of our story on the Tic Tic Boom Facebook page. Also follow us on Twitter!

Webinar originally slated for April 24 rescheduled for May 1

seminars-headerThe increasing saturation of technology in our culture is both a blessing and a curse – especially when it comes to its use among children and teenagers. The next New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Wednesday Webinar – “iSocialSkills: Strategies to help students, parents and educators reduce risks, cope with challenges, and utilize interactive technology in pro-social ways” – on May 1 will focus on how cell phones, text messaging, the internet, interactive video games, computers, tablets and other forms of technology impact today’s children and adolescents.

The first part of the webinar, which will be presented by licensed psychologist Dr. Graham Hartke, Psy.D., will concentrate on the impact technology has on communication, learning, attention and socialization. The second part will discuss strategies for helping students, parents and educators reduce risks, cope with challenges and utilize technology in pro-social ways.

Dr. Hartke specializes in cognitive behavioral treatment of TS, OCD, ADHD, anxiety, ODD, behavior management, high-functioning Autism Spectrum Disorders and sport-performing arts.  Along with a private practice in Roseland, N.J., Dr. Hartke also is a New Jersey Certified School Psychologist at Shepard Schools in Morristown and Kinnelon, N.J. He graduated from the Graduate School of Applied and Professional Psychology at Rutgers University, where he received his doctorate in School Psychology and completed clinical training at the Rutgers Tourette Syndrome Program and a concentration in Sport Psychology.

NJCTS launched the monthly Wednesday Webinar series, which draws an audience from 48 states and 13 countries, in 2008. The series, offered at no cost to participants, features online seminars for parents, educators and professionals on topics of interest to the TS and associated disorders community. Professional development credits are given upon verification of attendance and completion of an exit survey. Credits are distributed by mail one week after the webinar.

Please note that this webinar was originally scheduled for April 24. To register for this webinar, please click here. To view and download past NJCTS webinars, please click here.

“On Fire” — a new novel about a girl with Tourette

On-Fire-WebTourette Syndrome Foundation of Canada member Dianne Linden is the author of a new YA-adult crossover novel, “On Fire.” The character Matti Iverly, one of the narrators in the book, is based largely on the life experiences of Erika, a young person with TS and Dianne’s granddaughter.

GG Award Winning author Glen Huser has said of On Fire: “Linden brings many combustibles to this story ablaze with creativity: magic realism… mountain country mythology… survival stories… even some kindling from Dante. But what burns brightest is the voice of Matti, a teenager with Tourette Syndrome—true, and funny and heart-breaking—as she describes what happens when a young man with amnesia wanders out of a forest fire and into her life.”

TSFC got in touch with Dianne and Erika to learn more about this new book and its impact on the writer and her inspiring family member.

Q: Dianne & Erika, could you each say in your own words what you think On Fire is about?

A: Dianne – On the surface On Fire is the story of Matti Iverly, a fourteen-year-old girl with Tourette Syndrome whose life is changed when a young man with amnesia wanders out of a forest fire area and collapses at her feet. It’s also the story of that young man’s struggle to reconnect with his life and reconstruct his identity. And about the power of community.

At a deeper level, it’s an allegory of the labyrinthine trials our kids often go through trying to “fit in”, and the courage and community support that allow some of them to make it through.

A: Erika – It’s about a girl like me who has Tourette Syndrome. She makes a promise to help this guy who needs her help and she keeps her promise, although it takes everything she has. Continue reading

Anger and hope, all in one day!

552849_536119193106180_978517168_nLooking over Corey’s school records, even from before we moved to Missouri, and everything up until this year is great. Grades are awesome. Then all of the sudden, this year things just plunged downhill, right when his Tourette went full swing. I read one part in there where a teacher talks about getting Corey to cooperate with taking books to the library and he says, “Only if I can have a bathroom break,” and she responds that they’ll discuss it! WTF??? Who denies a child a bathroom break??? And they lied about things I said in phone conversations too! Seriously considering a lawyer! I’m one upset mommy!

But … I called Jefferson County Schools (in Colorado) and talked to them about Corey’s situation and they said the best thing to do would be to enroll him in a regular school to start with and have him work with their Special Education Departments because they have classrooms that are specifically set up for student interaction rather than isolation, and he may find that he can be comfortable in a traditional school if he’s not so singled out. If not, they’d test him to see if he’s a candidate for Sobesky Academy. 🙂

Awesome news! He might be able to just go straight back into mainstream school! Just need to get to Denver and find a place in Jefferson County. My research shows me they have the best schools for special needs kids. 🙂 And I might be getting some help from a very amazing woman to help us raise some funds to move. I want to cry! I haven’t had this much hope in so long!

Read more about the journey Corey and I are on at our Tic Tic Boom page on Facebook.

Conditional Corner: We are all neuroatypical X-Men

Conditional Corner is a series that runs Fridays on TSParentsOnline. All stories, including this one by Vrinda Pendred, were originally published at Conditional Publications.

OK, who watched X-Men 3: The Last Stand and felt like, in many ways, it was the story of their life?  Not with me?  Let me explain.

In a nutshell: The authorities have discovered a new drug to “cure” the mutants of their “abnormalities.”  Mutants queue up in the thousands to receive this “cure,” but Magneto does everything in his power to sabotage it.  Magneto believes the mutants are special for their “unnatural” abilities.  He thinks they should revel in their differences.  He takes this view to the extremes, sadly…but each time I’ve watched the film, I couldn’t help thinking how much it was like the struggle of living with a neurological condition.

There are “cures” out there, and they are unarguably a godsend for people who can’t function in life without them…but for those of us who – if properly motivated – could find alternative means of dealing with these conditions…do we need a “cure?”  Are we that damaged, or do we just have different types of brains that lead to different thinking styles, different ways of feeling and responding, different abilities (just like everyone in the world, really)?

They called it “The Last Stand” – I know where I stand on these issues, but where do you? Continue reading