Webinars and Rutgers clinic can help with academic accommodations and assessments

The most recent webinar offered by the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) focused on academic accommodations, and another webinar tomorrow, August 22 will do the same. However, as children age and go through the educational process, accommodations may vary and different requirements arise.

After high school, accommodations can still be available and utilized in college settings. When the term “accommodations” is used, it indicates different arrangements for your child to be able to best succeed in their schoolwork. Potential accommodations for those with TS and associated disorders include:

  • Extra time for assignments and tests
  • Reduced-distraction environment testing
  • Use of a tape recorder
  • Use of a computer for in-class tests
  • Alternate format tests
  • Note-taking assistance

When it comes to standardized testing and college disability services,  the required documentation can change. For example, your child might receive extra time on tests or have their desk placed in a specific area of certain classrooms because their teachers are aware of the TS (and potential associated disorders such as OCD, ADHD, anxiety and Asperger’s Syndrome) diagnosis and your child’s needs. Continue reading

We Connect Now takes individuals with disabilities to the next level

We Connect Now is a website and nonprofit organization dedicated to uniting people on issues which affect people with disabilities, with a particular emphasis on college students, higher education and employment.

We are often asked, “What’s next for We Connect Now?” The answer is that We Connect Now does not have a master plan. We Connect Now was born out of a basic idea to create a website to address a need that I found at that time for a vehicle to provide easy access to general information about disabilities and higher education, in a centralized place, and that would keep college students with disabilities connected on issues of their choice.

After some time running the website, We Connect Now has grown from a website to an organization with a presence on campuses and events and it is growing from there.

We Connect Now is user-generated and responsive. The blogs we add are not because of a preselected topic. We add the blogs that our followers send us on the topics of their choice. We also make space for items people send us, even if the item does not really fit into our site’s pre-established sections.

A good example of this is a recent posting we did of a student’s letter to the Department of Education regarding his claim of discrimination based on disability in a graduate program. We Connect Now connectors keep our events section busy; what they send us is what is posted. They are We Connect Now on the ground. Continue reading

Son battles hard, functions flawlessly under duress

My family and I have been experiencing  some extra stress over the past few months. As many people know, life can get more and/or less complicated at any given moment — especially in families with Tourette Syndrome.

My updated story has ups and downs, twists and turns and a miracle. 

As I have mentioned before, my son,  B. has Tourette’s-plus and Crohn’s Disease, and is presently slowly working toward a college degree.

His dad and I have made extra help available to him for his organizational needs and academic support.  Because he is incredibly motivated and positive, B faces the daily struggle of a rigorous college program — even though just getting himself to classes on time can be an ordeal.

Executive functioning is a huge challenge for him at all times. But on Jan. 7, he showed us how amazingly he functions in an emergency. 
 Continue reading

Battle with tics was rough, but daughter now is succeeding in college

I am unsure exactly when the TS actually started. From the time my daughter was about 2 years old, she began to experience what at the time was believed to be allergies and asthma; therefore, she was treated with medication for these ailments for a few years.

As time passed, I started to notice that she would move her shoulder blades in a manner that would make a loud noise. When I mentioned it to her pediatrician, the doctor told me that my daughter was actually taking her shoulder blades out of her socket. I was amazed that my child could do such a thing.

The doctor told her not to make it a habit of doing this, as with time it would damage the socket and by the time she was in her 20s it would become very painful.  At this time, she also had what I know now was a tic. She would constantly throw kisses to me, and at first I thought it was adorable, but after a few months it began to get annoying and I would ask her to please stop.  Around this same time, she began the eye blinking and the pediatrician mentioned that this was probably a nervous tic so I should just ignore it.

When my daughter was about 7 years old, I decided to take her to a psychologist because we were having some difficulties.  This psychologist was a blessing. I would say in the second visit or so she said to me that she wanted us to see a pediatric neurologist which she was familiar with because she thought my daughter had TS from the mild symptoms she noticed in her.

During our visit with the neurologist, she asked many questions and then gave me a questionnaire to give to the teachers and one for myself, but she did say she was almost certain my daughter had TS.  It’s important to mention that this doctor was familiar with this syndrome, as she had previous patients with TS.  Never in my wildest dreams could I have imagined that this would be the beginning of what I still refer to as a roller-coaster ride. Continue reading

Proud mother relishes watching TS twins succeed, enjoy life

My name is Ellen. I am mom to a boy/girl set of twins.  Each of my children have Tourette Syndrome, but they are on different scales. My son, Ben, has had severe TS since age 6. My daughter has a mild form of TS.  I am happy to say that both of them are in college now. But it has been a hard road to reach that goal.

As a family, we never let TS get in the way of most everything in life, whether it was a B’nai Mitzvahs, going to college or traveling. Around age 10, we took our kids out west to the national parks.

While on that trip, my son had the urge to climb up over the fences on cliffs, which meant we had to hold hands and be next to him at all times.  He also would be shouting out animal sounds repetitively a nd at one point almost got hit by a truck while we were at a lookout of the gorgeous mountains. At times, he took a rest or nap since just the time difference knocked him for a loop. On arrival in Wyoming, he slept for 16 hours straight!

TS still makes life challening, but my son’s motivation and joy for life has domineered rather than his limits. He has had the determination and perserverance to be active, be an advocate for himself .  I am amazed about both children’s accomplishments. My daughter has been supportive towards her brother whose needs sometimes took our energy away from her.