A country united: Tourette Syndrome community says yes to bill H.R. 3760

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Since it was introduced by U.S. Congressman Albio Sires (D-NJ13) on Dec. 20, 2011, bill H.R. 3760 — the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011 — has gained a lot of national attention.

It now has 36 co-sponsors, is pending review by a Congressional subcommittee and is being voted on and debated by people from all over the nation on multiple legislative websites, including POPVOX.

On POPVOX, which bridges the gap between the input the public wants to provide and the information members of Congress want and need to receive, H.R. 3760 has garnered overwhelming support — 83 percent of those who have weighed in about it have said, “YES! We want and need this legislation.”

We want to let you know what people nationally have been saying about the bill and why it is so important, as well as encourage you to support it and spread the word! Please enjoy these testimonials and then head to POPVOX to voice your opinion and make this YOUR legislation! Continue reading →

I’m just learning about Tourette Syndrome … help?

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I am a mother of a 7-year-old daughter, Siena, who has multiple disabilities. She has Asperger’s, anxiety disorders, language problems, a tic disorder (which now needs to be changed to Tourette’s), sensory issues, etc., and as a result we have a lot of challenges to deal with.

We love her dearly, and my husband and I spend as much time as possible helping her, which of course is difficult as we are both working full time. I am a licensed clinical social worker who provides counseling. Siena is currently receiving help in occupational therapy (OT) and an ongoing social skills group.

The school has refused to help, so we are battling that as well! I am sure these are issues and themes that many parents can relate to! I do not have to much history with TS. Siena has had tics since a young age, and now they keep recycling and have increased in amounts and duration and types. I am newer to this area, so I need to gather more information myself!

Daily Tourette Syndrome Links: Tuesday, Feb. 21

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Here are a few recent links from the New Jersey Center for Tourette Syndrome. NJCTS offers many programs and services to the TS community. Please enjoy these links, sign up for an event or two, and let us know if there are any ways in which we can serve you better!

Tourette Syndrome Awareness Day will be centerpiece of weeklong advocacy campaign

Wednesday Webinar series continues with Feb. 29 presentation on OCD

Children’s book “Emily’s Tic” now available on Amazon.com

Teens have mixed feelings about New York students with mystery illness

Families sing praises about importance, value of annual family retreat weekend

Dare To Dream Student Leadership Conference poster contest — deadline March 1

Educator and Healthcare Provider of the Year Award nominations

Children’s Scholarship Award applications

Eighth annual family retreat weekend at YMCA Camp Bernie — June 8-10

 

A long road to medicine, and a long road home

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I made all her baby food myself. I scoured every market, grocery store, health food store and bodega in our corner of New York City to find organic kale, organic sweet potatoes and organic beets. Spinach, broccoli, berries and apples were a little easier to come by, but I still had to visit several stores to get them all.

I would carve out hours out of my schedule to carefully roast, broil, sauté and steam all the vegetables and fruit, then cool them, pour them all into the blender in small batches, adding filtered water until at the right consistency, then strain those that needed straining, pour the warm food into ice cube trays, cover and freeze.

I would transfer the single-serving-sized cubed into freezer bags labeled with contents and date, and move on to the next item to add to the stockpile.

I bought only organic milk. I only let her have Veggie Booty as a “junky” snack. The occasional cupcake was a nonissue since she’d happily snack on her little bowl of organic broccoli before and after the treat. Continue reading →

Let’s get the word out about an important Tourette Syndrome bill in Congress!

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As a father of two children with TS, I am reaching out to other parents of children with TS to help support a first-of-its kind legislation that would amend the Public Health Service Act to provide for the expansion, intensification and coordination of the programs and activities of the National Institutes of Health (NIH) with respect to Tourette Syndrome.

A copy of this bill, introduced in late 2011 by U.S. Congressman Albio Sires (D-NJ13), can be obtained by clicking here. This legislation seeks to establish regional centers of excellence across the country to conduct research into the cause, diagnosis, early detection, prevention, control and treatment of Tourette Syndrome and associated disorders.

As of today, 36 Congressmen have co-sponsored this bill. I am asking you to help increase its support by reaching out to your member of Congress, and asking your friends and family here in New Jersey and around the country to do the same. Let’s get the word out and pass this legislation!

A simple and quick way to make your voice heard is to use the POPVOX system, which automatically allows you to write to your member of Congress in support of this bill. Here are the steps to take: Continue reading →

Seeking advice: We want to make better choices for our TS son

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Hello, this is my first experience as a blogger. I’m not sure what to expect from this, but I am hoping to gain outsiders’ information on the matter of Tourette Syndrome.  My son is 7 years old and recently was diagnosed with this disorder.

He is adopted, and from the very beginning I noticed something just not “right.”  We had a closed adoption, so his medical history is limited.  He struggled with speech and sensory integration, and we chose to send him to a specialized preschool for early intervention. 

As is the case with many other families, he has dealt with a darker side vs. the “typical child.”  He deals with high anxiety, OCD traits, anger outbursts and all types of behavioral issues on top of his tics.

We noticed at a very early age — around 3 years old – that he would change a certain behavior almost monthly, which appeared to be triggered by anxiety.  He would either sniff his fingers constantly, eye blink repeatedly, make a grunting noise or a sound repeatedly. 

Now, unfortunately, he has learned some new-found language too soon for his age from friends up the street.  His preferred morning ritual is to verbalize vulgar words to his family members for no reason — very frustrating as a parent. His doctor shared that consequencing him may only increase the behaviors.

Wow … what to do?!  We are hoping for some inspiring words of encouragement and tools on how to handle our family situation vs. making excuses for what appears at times to be inappropriate choices.

Bar Mitzvah provided needed moments of happiness

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So many times we write when something is going wrong. Then there are those wonderful times when everything goes right! I have tears of joy in my eyes remembering my son’s Bar Mitzvah a few weeks ago.

Words cannot describe how proud I am of Dylan. He got up in front of the congregation, tics and all, led the service and read from the Torah, radiating an immense joy that came from inside. He expressed the feeling of, “I can do this! I’m a Bar Mitzvah” in his smile, his expressions and his words.

In his D’var Torah (speech about the Torah portion) he talked about his parents helping him do things he didn’t want to do, likening it to Moses’ getting help to lead his people out of Egypt, and also said that part of becoming a Bar Mitzvah is that he will need to do more on his own without help.

He does want to do more on his own now, be more independent — even in simple things such as making his own lunch. He tends to make quite a mess while making his lunch. Because of his tics, he’s more likely to spill things, and his motor skills are delayed. But you know what? He can do it. And he can clean up afterward, too.

The stuttering tic made Dylan so frustrated during those months of practicing the prayers and Torah chanting. In the months leading up to the Bar Mitzvah, Dylan’s tics would often increase at the mere mention that it was time to practice Torah. That reflected his nervousness about the upcoming event. During the Bar Mitzvah service itself, did he stutter? Yes. Did it matter? No.

The process of becoming a Bar Mitzvah is ideally a growing-up experience. A 13-year-old is not an adult – far from it – but it’s an age at which children can often first really envision themselves as adults some day and start making purposeful steps to move in the right direction to get them where they want to go. This experience, for my son and our family, was more than I ever dreamed it could be.

Daily Tourette Syndrome Links: Wednesday, Feb. 15

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Here are the past few days’ Tourette Syndrome-related links from websites all over the Internet. This is just another way TSParentsOnline hopes to help the parents of the TS community. Also, we are looking for more parent contributions. We would love to hear from you! Thanks!

“Emily’s Tic,” a children’s book about Tourette Syndrome, is now available on Amazon

Teen: It’s not a wink, it’s Tourette

Christian musical artist Jamie Grace on her first trip to the Grammy’s

Pregnant teen with TS starts braying like a donkey

Deep brain stimulation a miracle cure for one boy

Hysteria, and why it is so catchy

What makes them tic

Brave boy with Tourette Syndrome, other health issues still manages to smile

“But my symptoms are real!” — shedding light on Conversion Disorder

When should I seek help for my child’s Tourette?

 

Tourette, associated disorders, other health problems don’t deter this family

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I am the mother of three teenage boys who have Tourette Syndrome.  They also have the co-morbid conditions of OCD, ADD and anxiety disorder.  Prior to being diagnosed with TS, all three of my boys were diagnosed with Asperger’s Syndrome.

It took time for me to embrace that diagnosis when the boys were 4 & 6, but I must admit, I more readily accepted and embraced the Asperger’s diagnosis than I did the Tourette Syndrome diagnosis.

In fact, when Jack was diagnosed, after having had a tic disorder diagnosed a year earlier, I did the safe thing and took a long trip on the River Denial!  When I finally diecided to get off the boat and embrace Jack’s Tourette Sydnrome with the same energy that I had their diagnosis of Asperger’s Syndrome, I got ran over by Colin’s diagnosis. 

Who would have thought that the horrible sniffing that he had been doing since he was around 6 actually had a cause or a reason.  Imagine my shock when we were at a neurologist appointment and I kept telling Colin to stop sniffing and blow his nose and the doctor responded “Really, Mom, you don’t know what is going on here?  Really?” Continue reading →

Annual NJCTS family retreat weekend is a blessing

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The New Jersey Center for Tourette Syndrome’s annual family retreat weekend will take place June 8-10, 2012, at YMCA Camp Bernie in Hunterdon County. Here is a personal testimony from SandyW and her family. For more information or to sign up for this year’s camp, please visit the Family Retreat Weekend page or the Family Retreat Weekend story on NJCTS’ website.

I can tell you in a nutshell finding out about Camp Bernie was a true BLESSING! I have never been anywhere else in 17 years for an entire weekend were I felt as calm, relaxed and peaceful for all of us as a family. There was a comfort and freedom I hadn’t experienced anywhere else.

Last June was our first visit because we only found out about Camp Bernie two weeks before the actual family weekend retreat. There had been a question if there would be enough space for another family and Kelley (from the New Jersey Center for Tourette Syndrome), who is an amazing and wonderful lady, helped to make everything work for us.

Our family has a pop-up camper, and we love opportunities to do things with our children. So Kelley helped make the accommodations so that we could come with our camper. We met awesome families, heard life stories, and shared laughter and tears.

Camp Bernie for me is a place to be yourself – a calm, safe, peaceful relaxing environment to let your hair down and have good, clean family fun. Some of the activities included an ice breaker to get to know people, family games, rock painting, canoeing, swimming, horseback riding, campfires, discussion groups, educational information, and my 16-year-old’s favorite — bringing along anything white and learning how to tie-dye.

The diagnosis of Tourette’s gives us a common thread even though we are all very unique, different and special. To the families we met, THANK YOU for being who you are and how you opened your hearts and lives to us and helped us to know we are not alone in this JOURNEY. You are all amazing!  Oh yes, we are hoping to return this year!