Memory strips

Memory strips are essential teaching tools to assist students who need support with memory recall, organization, making good behavioral choices and using self-regulation strategies. Typically, students who have difficulties with attention because of ADHD, ADD and Tourette Syndrome will benefit from this tool that is easy to create and put into action. Adults and “neuro-typical” children may also benefit from using memory strips in their everyday tasks.

For children with difficulties with organization and memory recall:

Memory strips can provide visual cues for procedural steps for work completion and for improved organization.  For example, children who have difficulties starting or completing tasks may use memory strips to provide a visual checklist to guide them through steps required to complete or improve the quality of their work.  Children who have difficulties with organization can benefit from memory strips reminding them of the things they need to do.

For children with behavioral or self-regulation challenges:

Memory strips can be used to prompt appropriate behavior choices or to provide cues to strategies that can be implemented by the student to ensure success.  Often children who have neurological differences tend toward unwanted behaviors when unsure of what they should do.  The memory strip can be a visual cue to give them choices during these moments and preempt the unwanted behavior.

Here are some examples of simple memory strips I have used to effectively teach students with learning disabilities and/or neurological challenges: Continue reading

Living with coprolalia is tough

My 9-year-old son was diagnosed with TS one year ago. He had motor tics since he was 2, but last year out came the vocal tics (spitting, coprolalia). He also has OCD making him have rituals and trouble leaving the house.

His current symptoms are smelling things; coprolalia; copropraxia; eye, head, mouth, hand and arm tics; goodbye ritual; and trouble leaving the house because he “feels” he has to go to the bathroom and can’t leave the bathroom.

He sees monsters coming to get him, gets what we call the wiggles during homework time (I scribe for him) where his hands start wiggling but then continues through his whole body. He is constantly having to stand on the back of chairs and yesterday brought home a bent box of Kleenex saying he has a tic to have to take it home.

I’m sure I’ve left things out but wanted to give you a good idea of what he’s going through. I’m trying to get his siblings to be more supportive, but living with coprolalia in the home is tough on all. I’m hoping to learn from what others have experienced and also have a safe place to talk about these disorders. Thanks!

Tics, faith and Believe.com

Are you thankful for tics this Thanksgiving season? You’re not? When my son was first diagnosed, I wasn’t either. But today, from a place of experience and growth, I am happy for the character building that has come from this crazy ride.

“How is that possible?” You might ask, before reaching through the computer and throttling me with frayed nerves shot from hearing 30  minutes of throat clears on the way to morning drop off. “I’m terrified my kid is going to be made fun of. Or worse, that this condition will be harder for him than it is for me!”

I get it. I really do. And all I can offer is my own experience, which is this: 6 years later, my son is totally fine. Yes, he still tics (last night his vocals were driving me a bit nutty … low gulps and clucks) but he completely embraces with who he is — not a kid with Tourettes, but a kid who creates video games, loves his sister, rocks math class, has a gaggle of geeky computer boys at our house every Friday night and, oh yeah, he tics. It’s a microcosm of who he is in the grand picture.

Yes, people ask him about his tics sometimes. And he always gives them the same answer: “Jesus made me this way.” I never saw myself as a religious person, but from the vantage point of time, I realize just how much my faith has meant to me and how much it’s shaped my son’s worldview of himself. Continue reading

What are your tic triggers?

When someone talks about what causes TS, they’re usually referring to the underlying genetic factors that lead a person to be born with it. But when a person talks about what triggers a tic, that’s entirely different. They want to know the proximate or immediate cause of a tic.

So what does trigger tics? Do any patterns exist, or is it different for everyone? Well, to start with, it’s helpful to divide tic triggers into three categories: environment, ingested or dietary items, and mood/feelings.

When the Association for Comprehensive NeuroTherapy surveyed people about what triggered their tics, it’s no surprise that stress was the most common response. In addition to stress, anxiety, excitement (good or bad) and feeling sick or hungry are also known triggers or factors that can contribute to increased ticcing.

In terms of dietary or ingested items, common tic triggers include: caffeine, alcohol, sweets, sodas, artificial colors and flavors, certain foods like dairy, oranges, gluten, preservatives, monosodium glutamate, and dust and pollen.

For some (not everyone), ADHD medications can worsen tics. The Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome states that when people first start taking Ritalin or Methylphenidate or their dosage increases, their tics may worsen. It also states that worsening of tics may occur with doses of Dextroamphetamine (Dexedrine or Dextrostat) that are higher than or equal to 25 mg per day.

Video games, light (flashing, bright or fluorescent), cell phone use, smoke or smoking, scented products, computer use, stadium or amusement park lights, watching TV or movies (especially in the dark) are also triggers for tics in some people.

What are your tic triggers? Do you know what they are? Do you ever record them? Have you ever tried to eliminate them? If so, did this reduce your tics? Please leave a comment below.

Learning from kids with challenging behavior

This blog entry was first posted on Neurologically Gifted in August and was designed to be read in the days leading up to the start of a new school year. However, the principles in this entry still hold sway today, so it’s worth a read!

The YouTube video titled “The First Day” highlights my stepson Nathan and my thoughts and reflections as they relate to teaching students with TS+ (or ANY neurologic disorder that causes challenging behavior in the classroom).

As I begin to contemplate the first day of school for the 2013-2014 school year, I recall my years as a young student – the feeling of anxiety and stress brought on by the approach of a new school year bubbled inside me, physically manifesting in tics such as (in my case) sniffing, head and shoulder twitching, repeatedly punching myself in the thighs because they wouldn’t stop moving.

Even a Vice Principal who has Tourette+ gets anxious and has elevated tic frequency just prior to the start of the school year.  Having experienced both sides of the learning coin however, I can confidently state that whatever challenge my TS+ poses for me in my job as a teacher or Vice Principal, it is far less than what I experienced as a student who had TS+.  For a child who has neurologic disorders, the student’s job is far more challenging and stressful than the teacher’s job.

A teacher may be challenged to manage any student’s behavior while striving to reach them academically as well.  However, the neurologically challenged student is struggling to manage their behavior (although it may not be obvious to the teacher), while feeling embarrassed in front of their peers – while simultaneously attempting to listen, understand and respond in oral/written format.

Often, a student will be left exhausted, embarrassed and defeated.  When in “trouble”, they don’t understand what they did wrong, and failed to learn what was taught (causing further stress, thus creating further anxiety and sense of loss).

When I had to deal with a challenging student or class as a teacher, I knew I just had to survive to the end of the year and I would get a fresh start the following year.  For the student who suffers from challenging behavior because of a neurologic condition, the suffering goes on with no end in sight.

Learning From Kids With Challenging Behaviour

Challenging BehaviorEffectively teaching a student who has TS+ requires a caring teacher who is committed to observe, learn and grow. You will need to observe triggers that cause stress or misbehavior, and learn how to reduce or counteract them.  Having this student in your class will force you to learn about the student’s challenges, and the strategies for helping him/her overcome them (by the way – these strategies work for all students).

In addition to becoming a more knowledgeable teacher, you will enjoy the reward of sharing the student’s success, knowing that you made a difference in a child’s life!  Do not be afraid of having a student who is neurologically challenged in your classroom.  Be brave and care.  Team up with the parents and get support from your school system.  TS+ kids with challenging behavior can learn.

I did.

Through a child’s eyes

Having any sort of disorder can make a person have to grow up a little bit faster. I remember being a little girl, first diagnosed and not having a care in the world because I was not yet aware of people’s prejudice against being different. I knew it on a surface level, but I didn’t really understand it.

I feel like sometimes as adults we can become jaded due to not only negative memories from our childhood, in which we have come to see a situation for what it was, but also to things we experience once that adult awareness comes in. It’s easier to get hurt and to feel anger or resentment toward others. Compound that with all the other things that come to our attention as we traverse through adulthood.

It’s so easy for us to forget that not everything is personal and that people’s ignorance and fear of the unknown is often what rules their cruelty. When we were children, hopefully, our parents took care of any issues we had and stood up or spoke out for us anytime we encountered antagonism or animosity from peers or elders.

However, once we become adults we have to become our own advocates and that’s hard. We may still have assistance from parents, friends or colleagues, but mostly it is up to us. So how do we do it?

Not everyone has the innate ability to confront someone who has committed a wrong against them or a loved one. Some are pacifists, some are passive-aggressive and others still just weren’t taught how to stand up for themselves.

I am a pacifist and sometimes when I am confronted with situations such as these I get nervous, shaky, and/or forget what I want, need or should say. The key is to take baby steps. Start with little things such as calmly telling someone that what they said was inappropriate.

Also, make sure that you have an advocate go with you or practice what you would say in certain situations or what you are going to say if a situation has arisen where you need to speak up. Note: It’s OK to have cue cards to help you remember what to say. Don’t allow the person to interrupt you and if they do, persevere. Dealing with these things comes easier with time, practice and maturity.

Lastly, it’s important to remember that even if you do have to confront someone, you don’t have to do it in an insulting or threatening manner. It can be done without screaming and yelling and spoken in a calm, yet firm voice.

Newbie here, with the story of my son

I am new to blogging, but I came across this site, and I thought maybe I had something to contribute!

My son Evan was diagnosed at age 6 in the first grade with TS. He had always had this little thing he did from about age 2, though, which we called “pulling his chicken neck.” 🙂 You know how families are, you attach these weird little words affectionately to things your children do.

We never gave it a thought. It wasn’t until he went to nursery school, and they told us that he really played alone a lot and didn’t interact much with the other kids, that I started to wonder about some of his little odd behaviors. My guard still was not up, though, until regular school.

Evan seemed to be more active, and more out of sorts than my other three children had been. Since he was a late baby for us (our others were 22, 20, and 15 at the time he came along), I thought maybe we had just forgotten how the other children really were at this age.

We were told various things. Evan couldn’t sit still for story time… Evan couldn’t seem to pay attention, and he made noises. It wasn’t until first grade that he began what I know now was yelping that I decided it was time to call the pediatrician’s office.

He then referred us to the neurologist In Hartford. I had taken a recording of Evan yelping, and he was very glad that I did. All he had to do was watch Evan pull his neck and listen to him yelp and crawl over, under and around the chairs in his office to know what was wrong with him. Continue reading

Guest blogger:10-year-old Sam Kaplun for “Project Give Back”

When I first heard of it, all that I knew about it was that I might have it! Tourette Syndrome. What the tic was that, I thought. My mom told me that she was worried about the fact that I might have Tourette Syndrome. At first, I didn’t really take her seriously because she worries all the time.

The first time it happened, I was 7 years old. I was playing Monopoly with my mom. I randomly had the urge to start saying some made up words. I began to say some of these weird words. That was when it all started. I had these verbal tics for a few months and then over the course of the next few years, varying disruptive tics intruded on my life and they still do today.

Around the same time, I was participating in a school play and I asked my mom if I could drop out. This was because my tics were making me uncomfortable and I didn’t want people to notice them. My mom encouraged me to continue, as I had already committed to the play. In the end, I was glad my mom forced me to do it because I enjoyed the experience and my tics were temporarily nonexistent while I was performing.

Except for my closest friends, I didn’t tell very many people I had Tourette Syndrome, as I found it slightly embarrassing. Things stayed like that until fifth grade (last year) when my class was assigned Project Give Back. This is a project that many students in grades 4 and 5 all around Toronto participate in. We choose a charity to present on to the class, and we play a little game about what the charity does.

Having Tourette’s, I automatically chose the Tourette Syndrome Foundation of Canada as the charity for my project. It just felt right. I explained what Tourette Syndrome was and how it can affect your life. For another part of the presentation, I told my classmates that I did indeed have Tourette’s.

The kids didn’t react badly at all. They just accepted it as if everything was normal. I didn’t feel embarrassed during my presentation, so it was then that I realized that I was starting to feel OK with telling people that I had Tourette Syndrome! No one is going to judge me just because I have this disorder.

My teachers and peers were very impressed with my presentation on the TFSC and Tourette Syndrome, and my teachers suggested that I show my presentation to other children to raise awareness about Tourette Syndrome. I thought this was a great idea, and I’m eager to present to other kids around the city.

Raising awareness is important so that people know about Tourette’s and how it can affect one’s life. It also shows people that I’m not weird. I feel completely normal even though I have Tourette’s. It was not until quite recently, however, that I actually stepped up and decided that I wanted to advocate for people with Tourette Syndrome.

I hope that those of you who read this are inspired by the fact that I came forward and chose to speak about the fact that I have Tourette’s. If you have Tourette’s, I hope that you feel OK about having it. There’s absolutely nothing to be embarrassed about. We all have differences and it doesn’t matter. We are all people and we can still live happily together.

Sam Kaplun, age 10

Fifth-grade blues (for me)

At an informal parent meeting last Wednesday, I was told to brace myself for the fact that peers would be more important than parents this year. Hairdos would trump propriety, and social obligations would outweigh homework priorities.

In my heart of hearts, I wish I could say this wasn’t true. That MY kid was still a mama’s boy. that MY kid would still hug and kiss his mom outside the classroom door — to hell with his skinny jeaned posse! While some of my wishes have been granted — he still hugs me on occasion or mutters “Love you!” while sinking his curly mop into my shoulder (Oh, God, my shoulder… he’s getting so tall) — he has, true to the warnings, started to show real signs of maturity.

And while this naturally brings out the weepy eyes in this mama, there is also a sense of pride and gratefulness. Despite my big worries about TS and its effect on his future, he really is just like any other boy — finding his way, navigating friendships, and loving a good fart joke.

Today, he brought a new kid home — one that shares the same faith background as him as well as his very namesake! The two of them barely spoke. They barely looked at each other. But at 6:45 I got a happy text from this boy’s mama. “My Stink said he had so much fun today! Let’s definitely get the boys together again soon!”

Sounds like a plan to me!

New Jersey Center for Tourette Syndrome highlighted on 101.5 FM feature

On Monday, the New Jersey Center for Tourette Syndrome was highlighted by 101.5 FM’s popular “What’s So Great About the Garden State?” feature. Here is the written portion that accompanied the radio interview, as posted on the 101.5 FM website:

The New Jersey Center for Tourette Syndrome and Associated Disorders is working toward finding a cure for the neurological disorder. NJCTS was started in 2004, in part, because not a lot of resources were available to deal with Tourette.

“There really, to some degree, isn’t a a lot of resources to help people affected by Tourette these days,” said Jeff Weber, Communications Coordinator for NJCTS.

The disorder affects roughly 1 in 100 people, in some form, and is characterized by ticks – both motor and vocal.

“We’ve raised a profile of what Tourette Syndrome is (and), what it isn’t,” Weber said.

The group has grown to reach all corners of New Jersey and help many thousands of people along the way. Their resources include an in-school service program, a hospital initiative, support groups, webinars and much more.

NJ+Walks+for+TS+LOGO2They will hold their 4th annual NJ Walks for TS event on Saturday, November 23rd, at Borough Park in Mendham. Money raised from the event will go toward the aforementioned school program, which they bring to NJ schools to educate students and teachers about the syndrome and its effects.

“You don’t just have to be affected by Tourette Syndrome,” he said. “You don’t have to know someone with Tourette Syndrome. You just have to want to come out to raise awareness for a good cause and a cause that affects a lot more people than you’d think.”

Find out more about this great Garden State charity by visiting their website and Facebook page.