My name is Vanessa, and my 7 year old daughter, Angelina was recently diagnosed with Tourettes, ADHD, OCD, anxiety, and a possible language processing delay. Her symptoms are on the mild side. I am new to all this and I have many questions. Talking to other parents going through the same thing is the best way to learn about all this.
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Hello, my name is Candy. I am the mother of three kids and my oldest son, 23 years old, has ADD. My daughter, 16 years old, is doing great in school. And my youngest is 9 1/2 and he has ADHD and was just diagnosed with TS. I’m a bit overwhelmed with it all, and having in-laws whom cannot except anything that there is anything wrong. They don’t know about the TS yet. My husband is also hard to except this as well. I feel like I’m going to battle alone! Any help would be wonderful. Thank you for your time and I hope to hear from you soon.
I am writing this post because I didn’t want to feel alone in my situation.
Being a grandparent to a young boy of fifteen with Tourette Syndrome is a learning process. He has come to live with my husband and I on a month-to-month basis. His home life with his parents is very stressful now, and I don’t know if it will change. I am concerned for his future, I am home schooling him now. He is having a lot of difficulty with staying on task and passing tests. He also has ADHD. The medicine he takes does not get rid of his tics. The school that he had been attending tested him to see at what level his capabilities were and he is as low as you can score before being recognized as being disabled. He is between a rock and a hard place, he struggles so hard with school work, but doesn’t qualify for help academically.
I want to find out more about how his condition will effect his ability to have a happy and productive life. It was my understanding that children in his situation will need micromanagement their whole lives. If anyone can talk to me about this, I would really appreciate it.
I used to read that the “co-morbid” conditions of T.S. were far more frustrating than the tics themselves.
As defined, co-morbid means
the annoying other conditions that make you want to poke your eyes out with ice picks the simultaneous presence of two chronic diseases or conditions in a patient. For kids with Tourettes, this could be ADHD, OCD, Autism, ADD and insane awesomeness.
Stink deals with the last two on the list, and let me tell you, it’s been a crazy year. If I was able to guide him through the chaos, drama and joy that accompanies kinder through sixth grade, let’s just say that seventh grade has proven to be the final leak in a boat that was destined to sink without a major overhaul in the floorboard.
Having a kid with T.S. and ADD, while being a working parent with a little bit of ADHD herself (I know… biiiig shock) is kind of like fixing a boat’s floor while still on the water. It can be done, but the progress is slow (Not to mention tiring. How many buckets of water can you scoop and throw over the side while steering the ship and feeding the crew?)
The best bet to fixing that leak is to get that boat out of the ocean all together. Take a break from the swells and breathe while on dry docks. Get a professional boat repair man. Invest in his advice, buy the supplies to keep it fresh and clean once it’s back on the water, and absolutely join a hole-in-the-boat support group. After all, there’s a decent chance that at some point that hole in the boat will come back. You’ll want another mama to cruise by in her motorboat when this happens. You’ll want that lifeline and the invitation to a cup of coffee in her well stocked cabin to catch your breath until your own boat works again.
Since life is not apparently perfect, I’m kind of stuck in the middle between shore and open water. I’ve been organizing my own life, to help organize Stink’s, and we’ve made progress. I am avoiding a lot of frustration by accepting life on life’s terms. I am not focusing on what he’s behind on in school. (Um, everything.) Instead, I’m focusing on helping him get caught up with the goal that he’ll be doing this himself at some point.
This means coming home each day after school and doing his work in the same spot. It means having him diligently utilize his planner so that he’s not relying on his own brain to remember every little detail of his “overwhelming” (his words) seventh grade schedule.
The challenge with using a planner is that you have to remember to take your planner home. And then, here’s the real rub: you have to find it in the first place. And when that task seems too monumental, you just
throw yourself on the floor and scream like a Carolina fan reach out to an educator who knows you’re doing your doing your best to help your kid.
Here’s an email exchange I had yesterday with one of his educators, minus the teacher’s name because, you know, these teachers have nothing better to do than stalk their ADD student’s mom’s blog.
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!!!
My 12 year old son was diagnosed with Tourette in early 2015. He experiences mostly physical tics. He also deals with ADHD, OCD, some anxiety but mostly ODD. We live in a remote area with little to no support on this matter. I have researched and read all that I can, in addition to traveling many hours to a specialist which didn’t offer any help.
I am desperate to find some guidance, support and answers on how to help him, as well as our family, control his behavior. He is a loving, very intelligent, active person but his lack of impulse control and other classic symptoms get in the way of letting that come through.
Although it is difficult for me to share, I really need to try other avenues for help and think that this might be a great place to start. Who knows what doors it could open.
My son, Anthony, has Tourette Syndrome. Anthony is 9 years old and started displaying mild tics around the age of 3. The tics would wax and wane, the severity of them never being bad enough to be disconcerting to Anthony or myself. He did very well in school, was very sociable and was always on his best behavior.
Then came second grade. About halfway through the school year Anthony’s tics got worse, going from simple to complex and including phonic as well as motor tics. His behavior also began to change. He became more disagreeable, argumentative and began to be disruptive in class. He grades started declining and his teacher expressed concerns about his well being and self esteem. We went to the neurologist again and this time they diagnosed him with Tourette Syndrome.
Anthony also began displaying obsessive compulsive behaviors and was then diagnosed with OCD. The OCD got to the point that it was far worse than any of the tics he displayed and was extremely unsettling for Anthony. He began CBT to help him say no to OCD and gradually it got better. It hasn’t disappeared, but is much better than it was. In the midst of all this, we also had reasons to believe that he also has ADHD. His reading and writing skills have plummeted; he cannot retain anything that he reads. He is unable to sit still and focus in the classroom and is disruptive to his schoolmates. Even watching a movie at home is difficult, we have to constantly rewind because he missed something. At first I thought it was because he was giving so much energy and concentration into just getting through the day trying to manage the symptoms of the Tourette and OCD. But, the psychiatrist said that we’d be able to tell the difference with appropriate evaluations. So, we did the evaluations and and he had very high markers for ADHD.
So, Anthony has Tourette Syndrome with co-morbid disorders of OCD and ADHD. I have chosen to take a natural approach to treating his symptoms as I couldn’t bear the thought of all the negative side affects he’d experience being on the prescription meds. He has a very strict diet and gets a lot of exercise (he is on a travel hockey team), he takes homeopathic and herbal supplements as well as vitamin and mineral supplementation. He takes magnesium chloride baths several times a week and I do deep massage therapy a couple nights a week. He also has sensory issues and so we do dry brushing and have a weighted blanket for sleeping. I have seen an improvement with his tics and anxiety levels but it hasn’t helped his focus or retention.
I’m also now seeing his disorders affect him on the ice as far as being able to follow the play and know where to be. Hockey was his one safe place where he always felt at his best. Now, that is suffering too and it’s very upsetting to him. He hasn’t made the connection, he just keeps saying he is in a bad slump. His symptoms also seems to be cyclical in their severity, with the Fall/Winter being the worst and the Spring/Summer the best. I contribute this to a build up of anxiety as the new school year begins, but I am not positive.
I’m at a point where I’m now considering trying medication as I do not want to see him struggle another year, barely getting by in school, nor do I want to see his game start to decline because hockey means everything to him. Before the onset of the Tourette, OCD and ADHD he was always ahead of grade level with everything. I can see that his self esteem is suffering a bit and that hurts the most. He is such a wonderful, caring human being. I want him to accept himself for who he is and embrace his struggles, as I know in the long run they will make him stronger. But, I also want to help him in any way that I can without harming him in the meantime. I don’t know anyone with a child who has similar issues and so I wanted to find a group that could relate to what we are going through and from which I might gather new ideas for approaching the treatment of his symptoms. I just feel very lost and very frustrated at the moment and I wish that I had some help in making these tough decisions.
NJ Center for Tourette Syndrome’s (NJCTS) Youth Advocates inspired, educated and spread awareness about Tourette Syndrome to a total of 1800 Cresskill, N.J., students from May 11 through May 15, as part of a weeklong TS awareness campaign in the district.
Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is estimated that 1 in 100 children show signs of the disorder—as many as 20,000 school aged kids in New Jersey alone. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, and learning disabilities. Kids with TS are at increased risk for bullying and report feelings of isolation due to their condition. NJCTS Youth Advocates share their experiences with TS and spread messages of encouragement, acceptance, and self-advocacy.
Drew Friedrich spoke about TS to over 600 high school and 400 middle school students on May 11. Drew is 22 years old, a recent graduate of County College of Morris, has been a Youth Advocate since 2012, and was a coach at the first annual Tim Howard Leadership Academy last August.
Drew did an amazing job connecting with the students and was comfortable in his skin, TS and all. He showed students that anything is possible and being different can be empowering. The students asked wonderful questions and started great discussion. Continue reading
HACKETTSTOWN — Spreading awareness of Tourette Syndrome and providing world-class resources is at the heart of the New Jersey Center for Tourette Syndrome’s (NJCTS) mission. This month, NJCTS took part in Abilities Day at Centenary College in Hackettstown.
Myself and volunteer Maddie Pucciarello discussed the programs and services of NJCTS with Centenary students, local teachers and school administrators.
Abilities Day was a wonderful opportunity for us to show students planning to become educators how education outreach provided by NJCTS can help them in their future careers to improve the lives of young students.
During the 150minute presentation, we shared information about NJCTS. Pucciarello, a graduate student in public health at Rutgers University, discussed her experience with Tourette Syndrome and how she became involved with the organization.
Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. As many as 1 in 100 school-aged children show signs of TS, which is frequently accompanied by ADHD, obsessive-compulsive disorder, depression, anxiety or learning disabilities.
We are looking forward to returning to Centenary to deliver an in-service presentation for education students on the topic of Tourette Syndrome and its associated disorders.
For more information about Tourette Syndrome the Center and its Education Outreach Program, please visit www.njcts.org or call 908-575-7350.