Who will you be in the face of your child’s differences?

During my yoga practice this weekend, my teacher Jess shared something that got me thinking.  She said that at the end of her pregnancy with her twins, she was up 80 pounds and feeling out of sorts with her body.  I can only imagine.  Jess’ friend, whom I assume is another yogi, commented on how wonderful this was.  Jess must have looked at her dumbfounded.  What could be great about all this weight gain?  About feeling like her body was alien to her?  About knowing what lay ahead to get back in shape once she gave birth?  Jess’ friend explained further.  She said that now Jess had the gift of understanding her ill, overweight and out of shape students in a new and profound way because she herself had experienced something similar.  Looking at Jess today you’d never know what she went through.  When she teaches though, she shares her experiences from the heart, relates from a place of purity and connection to all of her students no matter where they are with their practice, their body, their mind.  It doesn’t matter.  It hit me that this level of empathy and ability to support her students through the actual asana and the emotional blocks is possible because of Jess’ journey, not in spite of it.  No training or book could have prepared Jess the way personal experience has.  So why do I share this story you may wonder?  Simply put, I see my own journey in Jess’.

In June of 2010, my 5 year old daughter was diagnosed with Tourette Syndrome.  The diagnosis came after months of desperately trying to figure out what was wrong with her.  The months leading up to the diagnosis were filled with doctor’s visits, conversations with other parents, reading books and of course MANY Google searches on tics, anxiety, rage disorder, neurologists, vitamin regiments, dietary changes…  I felt alone, petrified of the future, dreading the diagnosis I was pretty sure we’d be getting.  Continue reading

Why Your Child with Tourettes Will Be Set for Success

Set-for-Success

Last year, while I was pregnant, I wrote about some of the thoughts that ran through my head, particularly about the possibility of genetically passing my Tourettes down to my baby. Apparently, I’m not the only one. I’ve had multiple parents write in to me, concerned about giving their children their disorder.

We know the pain that comes when someone tells you to, “stop that,” because they find our tics annoying. We hate the idea of our children being harassed by playmates, school peers, even coworkers one day because we know we won’t always be there to stick up for them.

I recently received a comment on my post, “6 Ways to Support Your Friend with Tourettes,” from a gentleman, stating his father used to hit him when he ticced because he thought it was on purpose. I know someone personally whose grandmother slapped him when he would tic for the same reason. Books like, “Front of the Class” by Brad Cohen, and “World’s Strongest Librarian,” by Josh Hanagarne record struggles that the authors go through even as adults that involve being thrown out of theaters and restaurants, and struggling to find a job with an employer who can see (or hear) past the tics.

As I type this, I’m watching Jelly Bean sleeping through the monitor. She turned 10 months old this week, and that kid already has my entire being wrapped around her little pinky. Her smile, her slobbery kisses, the sparkle in her eyes, the way she looks at me when I walk into the room makes me want to sob with joy, as well as fear. Like so many other parents with tics, I ask,

“If she inherits my tics, how do I watch her face the cruelty this world heaps onto those who are different?”

You will know that your child is already one step ahead of where you were because your child will have a parent who:

  • will better know how to recognize tics if they appear
  • will better know to bring her to her pediatrician to see if she needs a diagnosis
  • can go to bat for him if he needs extra time at school, by requesting a 504 or educating his school staff about Tourettes (because believe me, not many people know)
  • can share your tricks with him when he struggles to manage his tics in church, or to leave if they become overwhelming
  • can understand and empathize when the tics strike, instead of embarrassing him for it or telling him to quit
  • can help her siblings understand that she needs their support, not their jokes
  • can teach him to self-advocate in situations where his disorder is misunderstood
  • can teach him to educate others about his own condition
  • can help him do his best to find employment where he can soar beyond people’s expectations
  • can build her up so she’s less afraid to tell a significant other about her disorder
  • can help him see that the world is still his…he’ll just have to come at it from a different angle than some other people

We want so desperately to promise our babies that they won’t struggle the way we did. But we can’t. What we can promise is to be their cheerleaders when they stumble, their voices when they can’t speak up for themselves. We can listen when they need to talk, and hug if they need to be held. We can let them know they’re not alone. We can help them learn management techniques that we’ve picked up over the years, and help them develop healthy habits like maintaining healthy diets and regularly exercising. We can make a list of tics and habits for the pediatrician so he knows which direction he should be looking in. We can show our children they deserve to be loved and respected like everyone else. We can love them, not in spite of their tics, but for who they are as whole, complete, real people. We can pray for them until our knees go numb.

Tourettes may have been Hell for your when you were young, but that doesn’t mean it has to be that way for your child. My parents made a world of difference in helping me see myself with the same kind of worth I saw in other people without Tourettes. You can do the same for your children, making their lives better than yours was because you, their parents, care. And that is exactly what our children need.

I Don’t Know

As parents how many times a day do we hear, “I don’t know”?

“I don’t know why I don’t write down my assignments.”

“I don’t know why I didn’t turn in my assignment.”

“I don’t know where I put my water bottles.”

“I don’t know where I put my assignment.”

If I had a penny for each “I don’t know,” I would be rich. At first I took it as if my child wasn’t trying hard enough, so my response, my irritated response would always be some version of, “why don’t you know?”  I then became the teacher in Charlie Brown, “Wha, wha, wha, wha, wha!”  This did nothing for him or for me.  I had read all of the books, attended the webinars, but when you hear the, “I don’t know…” for the ten thousandth time, for me it wasn’t that he could not remember what he could not find, it was, it “is” the fear that engulfs me  for my son’s future.  This seemingly small, “I don’t know,” is bigger than those word three words. As a parent with a child with TS, most times things are not “just” small.

So, I made a choice to change how I operate, how I approach his “I don’t knows.”  It was time to put what I learned into practice.  I would love to say, the frustration is gone, but as quickly as it comes to mind, it disappears and we figure out what broke down.  My son and I say the following to each other all the time, “The definition of insanity is to keep ‘consciously’ doing the same thing over and over expecting the result we really desire.”  So the key is to find where the breakdown is.  The “fool’s gold” in all of this is that it is easy.  We have come up with systems that work for a while, and stop working.  The investigation begins, why is it no longer working?  Where is the breakdown?  What happened?  Did it ever work, or was that fool’s gold?  However, the light is when you and your child/teen finally find an answer to just one of the, “I don’t knows”, and it sticks and works, is worth it all.

Now, when it comes to the “Teen” “I don’t knows”  I still don’t know what to do about that!!!

 

No single fix for ADHD

No Single Fix for ADHD

One of the phrases that grates on me the most is, “if you would only,” when it comes to parenting children with disorders, particularly. Attention Deficit Hyperactive Disorder is one of the most common neurobehavioral disorders in the United States, so there are no lack of opinions on how to “fix” it. Healthline’s article, “ADHD by the Numbers: Facts, Statistics, and You,” says that as of September 2014, there were 6.4 million American children, ages 4-17, who have been diagnosed with ADHD.

A lot of people are theorizing why there’s been such a rise in the numbers within the last few decades. While I personally believe the numbers reflect multiple modern diet, exercise, education, and lifestyle trends, I’m not going to get into that today. As an educator, my job isn’t to research the scientific reasons for children’s struggle; my job is to address them here and now. And believe me, that’s enough of a job on its own.

Addressing ADHD is rarely an easy task. ADHD doesn’t mean a child is “bad,” but it does mean his problems will be unique to him. While there are symptoms that flag ADHD, such as the inability to focus on one thing at a time, emotional regulation struggles, sudden outbursts, and problems with executive function, no two children have the exact same version of the disorder. Unlike treating the flu, ADHD is complex because the brain is complex.

WebMD’s article, “Types of ADHD: Making the Diagnosis,” discusses the different kinds of ADHD. The Diagnostic and Statistical Manual, the American Psychiatric Association has grouped ADHD types into three main groups:

  1. Combined – The child struggles with both hyperactivity and inattention
  2. Predominantly Inattentive – The child struggles most with the inability to focus on one thing at a time (commonly known as ADD: Attention Deficit Disorder)
  3. Predominantly Hyperactive-Impulsive – The child struggles most with hyperactivity and impulsiveness, but not as much with the inattentive portion.

The DSM has at least 9 symptoms for the part of the disorder dealing with inattention and 9 more for the part dealing with hyperactivity and impulsiveness. In order for the child to qualify for at that portion of the disorder, she needs to qualify for at least 6 out of the 9 symptoms.

Understandably, this means there are many children who might have 5 out of the 9, which by no means, indicates that they don’t struggle. They just don’t struggle enough for the DSM’s diagnostic requirements. If you do the math, this means there are countless versions of ADHD that can occur. And of course, this is all theoretical because it doesn’t bring into account environmental factors either, such birth complications, a stressful or abusive home environment, food accessibility, or the presence of other comorbid disorders.

UPCOMING WEBINAR: February 25 on Sensory Issues at Home & at School

THIS WEEK’S WEBINAR

Making Sense of Sensory Issues – How to manage heightened senses at home and in the classroom

February 25, 2015

Presented by Dr. Michelle Miller, Psy.D., a New York State-licensed clinical psychologist who works at Therapy West, a group practice in Manhattan, and as post-doctoral fellow in the Tourette’s Syndrome Clinic at Rutgers University in Piscataway, N.J.

Over the years, parents and teachers have been increasingly attending to childrens’ sensory-related struggles; however, understanding and supporting sensory problems still remains unclear for so many people who work with children. Research also has suggested that 1 in 6 children are significantly impacted by sensory issues, further highlighting the need for this area to be addressed. This webinar is aimed at exploring what sensory issues are, how they look in different children and adults, and what can be done — both at home and at school — to help children with sensory issues thrive.

REGISTER FOR THIS WEBINAR »

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Tourette’s & Pregnancy: Trimester 3, Part 1

Fridays are always celebration days because they mean we’re another week closer to Jelly Bean’s arrival, and today marks our victory of 33 weeks! Between starting the nursery (which mean completely rearranging my house…which meant my husband completely rearranging the house), physical therapy for my back, a bit of substitute teaching, and a lot of writing, we’ve been pretty busy around here. I thought I’d take a few minutes and give you a report on how the Tourettes has been doing for Trimester 3.

(If you didn’t catch them the first time, here are my reports for Trimester 1 and Trimester 2.)

I’ll start off by saying that my tics have been noticeably more active this trimester, definitely more so than they were in the first two trimesters. I think this is for multiple reasons:

  • I had absolutely no energy with which to tic in Trimester 1.
  • I was still getting my energy back in Trimester 2.
  • I have a lot of great things going on in the coming weeks, but even good stress is still stress. And Stress=Tics.
  • Admittedly, my emotions are somewhat less balanced this trimester.

Now about that anxiety …

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What disabilities, disorders or conditions qualify for an IEP?

The following are listed as qualifying conditions, disabilities, or disorders for an Individualized Education Plan, or IEP.  The important thing to remember for any IEP is that the condition MUST affect a child’s educational outcome.  If they are brilliant and have no problems whatsoever with learning or adapting to a classroom environment affecting the ability to learn, chances are they may not qualify.

This is a very important thing for parents to remember.  Evaluations will be done to help determine disabilities, but parents should always find out ahead of time which ones are being done, and should also do some research to make sure they are the appropriate evaluations.

The federal criteria indicates a child must be impacted in the following areas to the point where they cannot perform at grade level when given instruction at that grade level. The term the federal government gives is “adversely affected”. The following are the educational areas where a child must be adversely affected:

  • Oral Expression
  • Listening Comprehension
  • Written Expression
  • Basic Reading Skills
  • Reading Fluency Skills
  • Reading Comprehension
  • Mathematics Calculation
  • Mathematics Problem Solving

The key to determining all of these criteria is is a history of assessments showing what areas a child may have struggled in, as well as a guarantee of appropriate professional instruction by an educator.  Once again, educational outcome must be affected!

The following are disabilities that can qualify a child for an IEP as long as they are adversely affected educationally:

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UPCOMING WEBINAR: January 21 on Habit Reversal Therapy

THIS WEEK’S WEBINAR

Creative Applications of Exposure Therapy and Habit Reversal Therapy

January 21, 2015

Presented by Dr. Joelle Beecher-McGovern, a clinical psychotherapist at the Child & Adolescent OCD, Tic, Trich & Anxiety Group (COTTAGe) in the Department of Psychiatry at the University of Pennsylvania School of Medicine.

Cognitive-behavioral therapy has strong experiential support for a number of psychiatric disorders among children and adolescents. It includes several treatment modalities, including exposure therapy for pediatric anxiety and habit reversal training for tic disorders and trichotillomania. Despite the strong evidence for these treatments, they can be difficult for children and families to implement for a number of reasons, including logistical barriers, motivation issues and difficulties with follow-through in out-of-session work.

In this presentation, Dr. Hilary Dingfelder will briefly describe these treatment modalities and discuss some of the practical issues associated with implementing these treatments with children and adolescents. Dr. Dingfelder will then discuss some creative applications of these strategies to enhance these treatments for children and adolescents. Examples of areas that will be covered include:

  1. How technology can be used to supplement treatment (e.g., using the smart phone to monitor progress or supplement exposures)
  2. How to strengthen reward plans to improvement motivation
  3. Creative ways to enhance exposures with young children (e.g., through the use of games and puppets).

REGISTER FOR THIS WEBINAR »

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Happily Ticked Off — The Book, Part 4: Chapter 1

At long last, here is Chapter 1 of my book “Happily Ticked Off” for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress and my kid’s crazy life in 2015.

As always, I’d love to hear from you, too!

TOC

Chapter 1 — UnrealisTIC

Your dreams are not your kid’s dreams. Listen to well meaning educators, even if it’s scary, and trust your instincts. Oh, and get some real friends – the ones that will listen to you cry, make you laugh, and call you on your crap. Trust me on that last part.

I am not the first parent in the world to feel insecure about parenting, nor will I be the last. Special needs or not, giving birth is one big lottery ticket. You are literally making a bargain with the universe that you will do everything in your power to keep your kid safe, to make him strong, to give him values and a sense of self, but at any time he could come down with some devastating illness or get hit by a taco truck. And just like that, all those years of telling him to pick up his socks or shut the fridge to save five cents would be wasted. And you’d never be able to eat Mexican food again.

The above statement sounds so fatalistic. Most people prefer not to even think about it, and who can blame them? It’s scary. It’s unnerving.  And it’s exactly these terrifying fears that drive today’s marketing.

Rich ad execs everywhere are mortgaging their mansions based on Just In Case advertising:  Bank that cord blood just in case your kid comes down with some terminal illness.… Spend the extra hundred and fifty dollars on the Britax car seat just in case you’re hit by an out of control taco truck… Buy the brand name diaper cream just in case your baby’s butt breaks out in hives and ruins your Disney Cruise.  For that matter, book that Disney Cruise whether or not you can afford it just in case your kid grows up to hate you. You can show him, and the grandkids, those pictures of the four of you in Mickey hats coughing up a lung with laughter on the lido deck. Now how could you be a bad parent with proof like that?

Like most people, I wanted the best for my toddler. While I prided myself in not falling prey to every Mommy and Me Groupon that promised to make my son smarter than Einstein, I was also on a pretty strict budget. I couldn’t afford a four hundred dollar car seat or a fancy vacation even if I wanted one. But I did want the best for his education.

As the product of Catholic school myself, I was sure my son would enjoy the same benefits of a private Christian environment – and it was never too early to start. Nicky was three – a year away from his Tourettes diagnosis. As far as I was concerned, his educational career would be nothing but smooth sailing, so why not start him off right?

Against my husband’s wishes on the matter, who figured the local community college co-op would be just fine for our active and friendly tyke, I signed Nicky up for an elite preschool ten miles away. Distance was no barrier to my son’s learning.  He deserved the best.  And that “best” just happened to reside on a campus adjacent to the very grammar school I had attended.

The day I turned in his registration – an intense intake form that was more detailed than his hospital exit papers – I ran into women I hadn’t seen in 20 years. Those freckle faced school girls of my memories had morphed into botoxed 30-something women. Ugg boots replaced saddle shoes.  Flat-ironed hair replaced ponytails and braids. The only thing familiar was the uneasy pit in my stomach.

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52 Weeks of TS: Week 32

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 31 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

This week I have been doing a lot of thinking; well, I guess my brain is always thinking, but this week I guess, I’ve been listening to my thoughts more. I’ve been trying to listen and understand why my body does the things it does. Even at 37 years old, my body still confuses me.

I’ve been doing the back and forth trips between New York City and Martha’s Vineyard. In the beginnings of my time in Martha’s Vineyard, I said my anxiety levels were at an all time low, but my tics had stayed the same. With all the back and forth trips, I have realized that my tics might have calmed down a bit in more relaxing situations.

There is always something going on in my head, whether it’s my OCD, my anxiety, tics or ADHD. It often feels like Grand Central in my head, so sometimes it’s hard to notice if something has calmed down, like my tics. Sometimes you just don’t realize when the tics are calm outside of a stressful situation, until you’re back in a stressful situation.

For the most part, people don’t realize I have TS, unless they are with me later in the day or early evening when my body is tired of suppressing. My TS affects me in many ways, but I would probably have to say the actual tics are on the bottom of the scale. Even though I tic throughout the whole day, they are usually very mild. It’s really all of the underlying disorders that affect me almost every moment of the day.

There is usually not a moment in the day that there is not some sort of OCD thought racing through my head, which then triggers the anxiety. I know I need to pay more attention to my triggers, and focus on what helps. I take my Klonopin, but I’m beginning to wonder, how much is it really helping? I know the one mg that I take at night helps quiet my mind and helps me sleep, but I’m not sure how much the .5mg that I take in the morning is really helping.

When I first started taking the .5mg in the morning it would make me so zombie like, so I started taking it with a coffee to somewhat level me out. I think it’s time to cut out the coffee part of it. Within 10 minutes of drinking the coffee, the caffeine is racing through my blood stream, causing more anxiety feeling. HELLO, why am I taking something for anxiety, but mixing it with something that brings out my anxiety? It’s time to cut the caffeine.

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