A big thank-you to one of our volunteers!

Today, on the last day of the Tourette Syndrome Foundation of Canada’s Volunteer Month, we’d like to thank the thanker. In addition to being a Trek Coordinator and member of the TSFC’s National Board of Directors, Sherri Brayshaw-Spencer (pictured above at far right) is the head of the Volunteer Recognition Committee. She does a great job thanking our incredible volunteers for their great jobs, and we wish to thank her for hers. Says Julie (pictured above at far left) from the Winnipeg Chapter:

I’d like to recognize Sherri Brayshaw-Spencer for her genuine and heartfelt contributions to the individuals and families involved with the Winnipeg Chapter. Her ongoing efforts to raise awareness and bring people living with TS and their families together through various events and activities does not go unnoticed. Her ability to connect with people, share stories and give hope is a special gift. We appreciate all of her countless volunteer hours! A huge thank you to Sherri for being an incredible volunteer!

New Jersey nonprofit gives access to experts online

Families living with neurological and learning disorders don’t have to travel far to interact with leading experts. They can do it from the comfort of their living room through the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) Wednesday Webinar Series.

The web-based teleconferences bring leaders in the field of medicine, education and psychology to audiences from around the world — a service Somerville, N.J.-based NJCTS began in 2008.

“We started the series to connect families, teachers and clinicians to speakers who would shed light on the issues surrounding life with a diagnosis of Tourette Syndrome,” NJCTS Executive Director Faith W. Rice said. “Today, through the Wednesday Webinar series, we explore strategies and techniques to enhance life for people with Tourette, obsessive-compulsive disorder, ADHD, learning disabilities, anxiety, depression and other challenges.”

Tourette Syndrome is a neurological disorder characterized by uncontrollable motor movements and vocalizations known as tics. TS is an inherited disorder affecting as many as 1 in 100 people.

NJCTS established the program’s format in 2008 — participants pre-register online and are given a link to sign-on for the live seminar. At the conclusion of the each presentation, audience members are invited to ask questions of the expert on the call. Expert presenters also answer questions through an online discussion board for one week after their Wednesday Webinar. All past programs are archived for viewing as well.

Parents, family members, educators and health-care providers are encouraged to attend each Wednesday Webinar — and are invited to do so at no cost; professional development certificates for educators are available at a nominal cost.

“Part of our mission is to provide the best and most up-to-date information about these conditions to anyone who cares for and works with people living with these types of challenges,” Rice said. “We’re proud to present the Wednesday Webinar series because it’s a format that is reaching people worldwide.”

Upcoming topics include:

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Beyond the diagnosis

I will be syndicating the posts from my blog, Tics & Tats, here on TSParentsOnline. If you want to know more about me and my connection to Tourette Syndrome, just click on my name for my bio! Or visit Tics & Tats!

It has been a beautiful warm day in Georgia, and I’m back at Camp Twin Lakes starting to get ready for the season…I can feel now that summer is just around the corner . My summer job is working as the Medical Liaison for Camp Twin Lakes to help support the medical programs for the camps that come to the CTL Will-A-Way site. Today was a family day for one of the local camps to help introduce the children and families to the facility.

The organization that visited today serves children with many different disorders…from cerebral palsy and down syndrome, to autism…they have a very diverse population. Watching all of the different children interact and play with each other is amazing. Towardsthe end of the day the director gave the parents the opportunity to sit together and share their stories with each other…it was heartwarming.

One of the mom’s shared that being a part of this program has taken so much of the stress off of their family as well as their relationships at home. She talked about how wonderful her child is , but how stressful it is when others can’t see beyond his difficulties – at school and out in the community. Sometimes it’s hard to put on that shield that is necessary to survive others perceptions of your child, your parenting, and your life.

What became clear was how important it was for them to feel connected to the people that work with their children. They appreciate people who are willing to look beyond the diagnosis and find that unique child underneath.

Both of these organizations do an amazing job of training and supporting their staff that consists mostly of college students. Watching these young adults help these children climb the rock wall, sail down the zip line, go boating on the lake, and fish…just brings a smile to your face.

What many people don’t realize is how much thought and planning goes in to these fun activities for the children. It’s not just about having fun…which is still a really important part of it…but they make sure that they have appropriate activities that challenge them and broaden their experiences.

Quality after-school programs and camps should be creating “intentional” programming for their special needs children and adults. When the core staff is trained and well prepared…the support staff has the confidence to work with the disorders they are presented with.

Besides the creation of an amazing support network for these families, the staff develops a deeper understanding and appreciation for the children. Some of these college students will be heading in to careers such as special education, physical therapy, occupational therapy, and medicine.

These experiences impact their lives and shape the way they will approach their careers. While the news on TV only shows us the bad stuff…I see really great things happening with our younger generation when it comes to service and empathy. My daughter has been working with both of these organizations for a year now…and it has changed her life.

Within the walls of our homes, we know and experience the joys and struggles that come with our children. Having others love and appreciate them for who they are…not what they have…is comforting. To have our children encouraged and challenged just like other kids brings us joy.

Thank you so much to all of the students and young adults who spend their time lifting our children up by looking beyond the diagnosis…in doing so they lift us all up. Also to the Camp Twin Lakes staff who have been an incredible support and partner to our camp…thank you from the bottom of our hearts.

Some schools actually ARE good

Corey is doing well in his new school. He’s got lots of friends and an excellent teacher. When I dropped him off on his second day, the counselor stopped me to tell me if I want an IEP and 504 for Corey he’ll start getting the paperwork together! Much better than the 4-month fight with the Missouri school we used to have!

His only disrupting behavior is he is beginning to have increased trouble sleeping through the night. Starting him back on melatonin. Hoping that works and we don’t have to up the Tenex again! Keep on ticcin everyone!

Supporting Students with TS+, Part 2: School Strategies for TS, ADHD, Aggression & Sensory Processing Challenges

Teacher and Student at BlackboardFor parents of children with exceptionalities like Tourette Syndrome, OCD, ADHD and mood disorders, classroom strategies are a very popular topic. Parents are eager to understand how their child’s education team can help remove roadblocks to learning, but it is easy to get overwhelmed by all the information, terms, resources and texts out there.

This blog series will help breakdown this information into easily digestible chunks. It is by no means exhaustive, but it will assist you in your effort to build a strong knowledge base. Part 1 is an overview of key terms. Part 2 will consist of classroom strategies and specific supports for students. Part 3 will share answers to frequently asked questions. And Part 4 will feature expert advice from a guest blogger.

People with Tourette Syndrome usually have at least one other condition (co-morbid or co-occurring conditions). Some students have multiple co-occurring conditions. A student’s education team can address the impact of these conditions using a strategy particular to that condition. Below are some examples for tics as well as strategies and approaches for “common co-morbids.” These strategies are not exhaustive, nor do the categories cover all possible conditions that will need to be addressed.

Accommodations for Tic Disorders

  • Ignore tics whenever it’s possible to do so.
  • Instead of a time-out space, provide the student with a safe spot — a place they can go to calm down and release tics. Do not use the Principal or VP’s office for the safe spot as this can be misinterpreted as punishment.
  • Facilitate a graceful exit to the safe spot. For example, giving the student an envelope that has nothing in it to hand into the office is a graceful way to leave the room.
  • When assigning preferential seating, put the student near the door so that they can exit more easily when they need to do so. This will help to reduce their anxiety, which in turn reduces the need to leave.
  • Avoid seating the student at the front of the class in the center because this makes their tics more noticeable and potentially embarrassing.
  • Provide frequent breaks/opportunities to leave the classroom to allow the student to release their tics.
  • For socially inappropriate tics, brainstorm possible solutions with the student. For example, encourage the use of a tissue or cup for spitting tics or saying Ferrari instead of a curse word beginning with the letter “F.”

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Why is my child mean?

Ken Shyminskya former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as a 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.

There have been many parent posts online regarding the general and persistent negative behavior patterns of their children.  They describe their children as being “mean” on a regular basis.  It’s not uncommon to see this default behavior in children who have neurological challenges.

In my presentations, I call this the “Awfulizer Syndrome.”  To these children, everything is awful.  They always seem annoyed or angry.  They are routinely mean or insulting.  They often engage in name calling and typically communicate in an unkind or angry tone of voice.  Generally negative in most aspects of their daily life, they are most often disagreeable.

Without intervention and support, it is difficult to correct these behaviors.  From personal experience, as a person who has overcome this challenge and a parent who has dealt with it, I can tell you it takes a great deal of effort to overcome this neurological affect.

Step 1:  Identify your child’s behaviors and the responses of your family members

Identify and address when your child is mean through his/her words, voice or actions.  Be sure to do this when your child is in a calm and receptive state of mind.  Session need to be frequent and on-going.  Share your feelings with your child.  Explain how their words/tone/behaviors make you feel, and how it affects your thinking about them (e.g. “Although I love you, your tone of voice makes me feel mad and I don’t want to be around you when you are mean to me”).  This response is a natural consequence – people don’t want to be around people who are mean or unkind.

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List of all upcoming and archived webinars, including April 23 on Tourette Syndrome & developmental disabilities

THIS WEEK’S WEBINAR

Tourette Syndrome & Developmental Disabilities

April 23, 2014
Presented by Lawrence W. Brown, MD

Tourette Syndrome is defined solely by the chronic presence of motor and verbal tics. But large epidemiological studies have clearly demonstrated that the presence of other neurodevelopmental and behavioral disorders are so common as to be the rule, not the exception.

Some like OCD appear to be directly linked genetically, while others are truly co-morbid liken autism, intellectual disability and tics in unique genetic conditions, where disturbed brain networks in the growing child disrupt the same systems affected in primary Tourette Syndrome.

Yet others interact in ways not always fully understood such as ADHD, anxiety disorders, sleep problems, etc. This lecture will review the current scientific understanding of the interactions between tics and these developmental disabilities.

REGISTER FOR THIS WEBINAR »
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Supporting Students with TS+, Part 1: Key Terms

Teacher and Student at BlackboardFor parents of children with exceptionalities like Tourette Syndrome, OCD, ADHD and mood disorders, classroom strategies are a very popular topic. Parents are eager to understand how their child’s education team can help remove roadblocks to learning, but it is easy to get overwhelmed by all the information, terms, resources and texts out there.

This blog series will help breakdown this information into easily digestible chunks. It is by no means exhaustive, but it will assist you in your effort to build a strong knowledge base. Part 1 is an overview of key terms. Part 2 will consist of classroom strategies and specific supports for students. Part 3 will share answers to frequently asked questions. And Part 4 will feature expert advice from a guest blogger.

Understanding key terms is always a good starting place when you’re trying to build a strong knowledge base. The word “modification” is important, though it often gets confused with the term “accommodation.” In fact, you may be surprised to learn that accommodations and modifications mean two very different things: Modifications change what a teacher teaches, tests and grades, whereas accommodations change how the teacher teaches, tests and grades.

For example, a modification might be having a student submit an outline rather than a whole essay. An accommodation would be allowing the student to have extra time to complete the essay. Modifications change the expectations. In this example, the student was expected to complete an outline rather than an essay. With accommodations, the student has the same expectations as everyone else in the class but is given additional supports to help them meet that expectation.

Another important term is Education/Program Plan. This is called different things in different provinces like IEP (Individual or Individualized Education Plan) or SEP (Special Education Plan). The idea of your son or daughter’s teacher having a “plan” or “program” specifically for them may sound complicated. After all, don’t all teachers “plan” out their lessons? Can’t they adjust things on the fly?

Well, maybe they can. But other reasons exist for having a written plan about how a school will assist a student with exceptional needs. For example, this gives everyone (parents, teachers, administration) a shared understanding of how the student will be assisted. The process of developing the plan or program will often help to unlock the funding that is needed to carry out the plan as well.

The contents of the Education Plan/Program are written by school staff and experts like psychologists in consultation with parents. It may include both modifications and accommodations or one or the other. To help the school create content tailored to the student’s specific needs, the student may undergo a psycho-educational assessment, or psycho-ed assessment as it is sometimes called.

A psycho-ed assessment consists of a series of tests conducted by psychologist. The tests usually focus on: learning style, ability to use language, reasoning skills, ability to do written work, ability to interpret and analyze visual material, and reading comprehensive, spelling, and math. In short, the assessment measures a student’s learning potential. Typically, a psychologist will gather information about the student through interviews, reviews of school records, observations and reports from parents and teachers as well. Keep in mind that because this assessment is so detailed, it can take several visits. If done through a school board or hospital it is free of charge, however, there are usually waiting lists. A number of private organizations will perform these assessments for a fee. Some extended health benefits or private insurance packages will cover a private assessment if the student has a referral from a physician.

A final important term is assistive technology. This term includes a number of services, devices, strategies and practices that help individuals with exceptional needs access school curriculum. It might include use of special computer software that types out the spoken word or reads the written word out loud. Other examples include digital recorders, alternative keyboards, spell checkers, pencil grips, raised-line paper, and paper stabilizers. Using assistive technology may be one type of accommodation that a student needs to do his or her best in school.

Do you or a family member use assistive technology at school or work? Is it helpful? Do you think that there any downsides to using the technology?

Stay tuned for parts 2 and 3 of this blog series, which will be published later this week.

State testing can be a pain

You can follow me and my son Corey on our Ticsplosion Facebook page. This is our first post on TSParentsOnline since September 2013, but we are happy to be back!

So the boys have state testing coming up and the school won’t let us opt out, which sucks because I don’t believe in standardized testing as there is nothing standard about an individual. We are each of us unique and that is something to be celebrated.

On the note of state tests, it will be a two-hour drive to get to the testing center as the children attend Virtual Academy so if anyone has ideas for keeping the calm in the car and after, please share. Car rides are stressful for Corey on the best days. Heading into testing is going to be a nightmare…

Well, the Virtual Academy screwed up and gave us the wrong day for state assessments so the kids can no longer attend because they missed them. We moved to a much smaller town, though, so putting him in the public school here has been a surprisingly easy transition. He’s doing well and has a lot of friends, no one is bullying him, and his teachers are very understanding of his condition and are doing all they can to accommodate him.

I feel like I’m holding my breath! It’s nice to take him to the park and here everyone, even the upper class kids saying “Hi Corey!” and asking him to play with them. I just want to cry!

New Canadian rock band features members with TS

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Say hello to Pariah.

They’re a young, ambitious Canadian rock band, and two of their members happen to have TS.

A five-piece ensemble, Pariah hails from Mississauga and Oakville, and they all love to write music, record and perform.

The band already has their own Facebook pageTwitter account and YouTube channel. On the latter you can hear a demo and watch a video of them performing live, and if you live in the Greater Toronto Area you’ll have a chance to see them play live on Sunday, April 27, at the Rockpile West in Etobicoke, ON.

Pariah is:

Chanel Martins – Lead Vocals
Jiverny Marshall – Rhythm Guitar/Vocals
Dylan Murray – Lead Guitar
Justin Speers – Bass
Ian Coll – Drums

Here’s a video of them performing a song called “Adrift.”