This is a continuation of a post called The onset of Tourette Syndrome and my son . . ..
In earlier posts or from tweets on Twitter you may have already surmised that my son has Tourette Syndrome and some of the comorbid conditions that can go with it, such as OCD and ADHD. Below is a continuation of some basic information about Tourette Syndrome and a description of our experience with it.
Some tics are preceded by an urge or sensation in the affected muscle group. Some people with TS will describe a need to complete a tic in a certain way or a certain number of times in order to relieve the urge to tic or to decrease the sensation.
Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain physical experiences can trigger or worsen tics. For example tight collars may trigger neck tics, or hearing another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are often significantly diminished.
Tics come and go over time, varying in type, frequency, location, and severity. Motor tics generally precede the development of vocal tics and simple tics often precede complex tics.
Although the symptoms of TS are involuntary, some people can sometimes suppress their tics in an effort to minimize their impact on functioning. However, people with TS often report a substantial buildup in tension when suppressing their tics to the point where they feel that the tic must be expressed.
After my son returned to school it was obvious that the events were triggered by anxiety. In school they were doing “rocket math” which were sets of timed tests to see how many addition and subtraction problems they could get done in one minute. The students each had a goal that they needed to accomplish, based on their specific writing speed, before they could go on to the next set. While my son worked with the tutor (which coincidently was his teacher) and I was observing, I noticed that just bringing out the green paper, which was used for these rocket math tests, would trigger a round of complex tics. I also noticed that his teacher exuded anxiety with her voice and how she interacted with my son. I could then see why he was having so much anxiety at school.
To help my son deal with his anxiety we worked with a specialist to identify coping skills that he could use. We also met with an integrated health doctor who was an expert of using vitamin and mineral supplements to treat Tourette Syndrome. In addition the integrated health clinic taught him biofeedback techniques. To be honest some of these things worked for a while, and eventually were not effective. The best techniques we found was distraction or music. When my son was going through a round of complex tics I could hand him a full glass of water and the tics subsided. It is as if the brain knew it had to carefully hold the glass of water to avoid spilling the water. For a brief time it would stop the tics. Overtime we also found that change of venue and music were the best items to use to reduce the duration of the complex tics. My son carries his iPod with him every day in case he needs it. Typically he has to use the iPod every day because his tics happened everyday.
In certain circumstances, such as public places, my son tries to suppress his tics, which is really hard to do and sometimes he is not successful of suppressing them. He also tells me that if he suppresses the tics eventually they have to happen, and when they do the intensity of them is increased.
Although the cause of TS is unknown, current research points to abnormalities in certain brain regions (including the basal ganglia, frontal lobes, and cortex), the circuits that interconnect these regions, and the neurotransmitters (dopamine, serotonin, and norepinephrine) responsible for communication among nerve cells. The genes associated with Tourette Syndrome have not been identified and there is no potential cure at this time.
Many with TS experience additional neurobehavioral problems including inattention; hyperactivity and impulsivity (attention deficit hyperactivity disorder—ADHD) and related problems with reading, writing, and arithmetic; and obsessive-compulsive symptoms such as intrusive thoughts/worries and repetitive behaviors. In addition, people with TS have also reported problems with depression or anxiety disorders.
There is no cure for Tourette’s and no medication that works universally for all individuals without significant adverse effects. The management of the symptoms of Tourette’s may include pharmacological, behavioral and psychological therapies. While pharmacological intervention is reserved for more severe symptoms, other treatments (such as supportive psychotherapy or cognitive behavioral therapy may help to avoid depression and social isolation, and to improve family support. Educating a patient, family, and surrounding community (such as friends, school, and church) is a key treatment strategy, and may be all that is required in mild cases.
A study of 46 subjects at 19 years of age found that the symptoms of 80% had minimum to mild impact on their overall functioning, and that the other 20% experienced at least a moderate impact on their overall functioning.[1] The rare minority of severe cases can inhibit or prevent individuals from holding a job or having a fulfilling social life. In a follow-up study of thirty-one adults with Tourette’s, all patients completed high school, 52% finished at least two years of college, and 71% were full-time employed or were pursuing higher education.
My son is now in the sixth grade. There has not been a day that he has not had tics. Sometimes they are simply and sometimes more complex. Over a period of time they change slightly. He still has erratic body jerks and occasionally will include the loud vocalizations. About a two years ago we tried clonidine (also known ass catapres, which is a blood pressure medication), which had no affect on the tics, but did have side effects, such as lethargy. We ceased used it after about six months.
Recently, a new tic appeared where he either slaps himself in the face or punches himself. The situation is dire. My son has continued working with a neuropsychologist on coping skills and reduction of anxiety. We really have not had much success with this. The concept of doing things to prevent the tics from starting has not really been understood by my son. He is always looking for a solution to use as the tics are happening. Perhaps as he gets older the preventive tools may make more sense.
Dealing with the medical community is very frustrating. For many centuries TS was considered to be a psychogenic disorder. Now with more information, there is recognition of it being a neurological disorder. Yet there is still a belief that behavioral therapy can improve the situation. I find this concept idiotic. If you have spent some time with a person who has Tourette Syndrome, you would understand it is not behavioral and truly is involuntary. I guess the behavioral approach is to address the triggers that may cause tics to occur. Our neurologist, who is an excellent epilepsy doctor, has no expertise with TS, or at least does not feel comfortable treating it. Our psychotherapist has suggested that we work with someone to try some of the other medications that are available. So we are in the process of finding a specialist to work with my son. So far, no luck.
School has been a complete nightmare since this all started. Over the last three years he has increasing fallen further and further behind in school. The nature of his learning disabilities have become more apparent. I have also noticed that the type of teacher also has a huge impact.
I have had numerous discussion with teachers or the principal or the nurse, about the events being involuntary and not purposeful. They repeatedly kept saying, it appears he does this whenever there is work to be done. I told them perhaps the anxiety of the work was triggering them, and I pointed out the events do not always happen during school or while he is working on school assignments. They also happen on the playground. They happened while he plays video games. They have happened right before falling asleep. The principal of the grade school and I got into many, many heated discussion. I just wouldn’t give up.
In fourth grade he was assigned to a special education teacher. that lasted half a year, and she kind of threw up her hands, and complained that he could not follow directions or could not identify, by looking at the other kids in the room, what he should be doing. Now, she is a special education teacher! If anyone should know how to deal with this it should be her. In fifth grade they assigned my son to an individual, who originally was classified as a social worker, and suspiciously became his fulltime teacher for math, reading and language. This relationship went from good to terrible. Some of the things she did was unforgivable. She would punish him for having tics. She complained he was not getting his work done. She demanded that he continue working while he was having tics. She would not give him privacy when he was have complex and never-ending events. She was quite a *itch (I apologize for the language, but if there ever was a time to use that word, this is the time). By the time we hit fifth grade I begged my son to hang in there, because after that year we would be in a new school with different people, which should change the situation. At one point I did not think we were going to get through fifth grade.
Someone must have been looking out for us, because this year in sixth grade, the situation is completely different. My son’s teacher has worked with kids with Tourette Syndrome before. The school in general is trying to accommodate him at the same time that he is getting educated. He is in a class with kids with learning disabilities, and I think from a progress level he is ahead of most, if not all of the students. As a result of this, his self-image has improved. The biggest change is that the staff has empathy for the situation. My son now LOVES school, loves his teacher and is making tremendous progress. Next week is our IEP meeting. We will see how it goes.
* The majority of the facts in this blog were gathered from a variety of sources including the Tourette Syndrome Association
.[1]Leckman JF, Bloch MH, King RA, Scahill L. “Phenomenology of tics and natural history of tic disorders”. Adv Neurol. 2006;99:1–16. PMID 16536348
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The onset of Tourette Syndrome and my son
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Scholarships: My son needs help now, not later
Posted: May 24, 2011 in Education, General Blogging, Indulgent Commentary, Learning DisabiltiesTags: children, discalculia, disgraphyia, dislexyia, education, IEP, learning disabilties, post-secondary school, scholarships, secondary school, special education
I was watching Oprah Winfrey’s final shows this week. There were several presentations regarding her contributions to education including her celebration of teachers, the girl’s school she founded in South Africa, her ability to touch the lives of so many children, her book of the month club or the scholarships to young men at Morehouse College.
As I watched this show honoring her, I wondered to myself what about my son. Will he ever feel the rapture and the power of education? Will college be in his future? If not, what will happen to him? What will his life be like? Without education beyond high school, I knew his life would be hard. Both my husband and myself have degrees from college. Even with this education, our life has been a challenge. I can’t imagine facing life without that little extra knowledge and without the advantages it may bring.
Right now my son’s education is in the hands of our public education system. This is the education system that everyone is talking about as failing to prepare our children to be leaders in the world. This is the education system that needs to be completely overhauled. Now keep in mind all of this criticism is in reference to mainstream education. This criticism is in reference to the children who don’t have reading problems. These are the children that do not have problems doing mathematics. These are not the children who have autism. These are not the children who struggle with school, who need to learn things in a different way, and who have learning disabilities. I am not talking about the children that have developmental delays. I am talking about children who need a little extra help. There is a group of children who do not fall into the classification of children with developmental delays or in with children in the mainstream educational programs. I am not talking about have a “quality of life” plan, which is directed at children with developmental delays.
So what is a mother to do when she has a child that has learning disabilities? How does she ensure that her child is prepared for an adult life, facing the world on their own? This topic leaves me sleepless at night. I don’t want my son to have to struggle, especially as a result of limited or inferior education.
As you may already know there are scholarship programs for post secondary school for children with special educational needs. Young people with special needs are finding their way to college more and more, as disability law mandates access to classrooms and campuses, and programs are developed to meet the needs of students with intellectual disabilities. I am very thankful that these opportunities are available.
My concern is not with post-secondary school. My concern is getting my child to post-secondary school. I know that my son is at serious risk for dire consequences of not receiving a proper education. If his education continues as it is in the public school system, he is going to have a hard, hard life. So when it comes to scholarships, I need the help now.
I need maximum access to any educational resources available so that I can get my son through middle school and high school. I can’t rely on the public schools. They don’t care. Children like my son are considered to be a burden on the schools’ budgets and are the first place they cut. It is very obvious to me that the public education system has an objective to limit resources to a child such as mine. They seem to be very complacent to continue passing him from grade to grade without meeting any measurements of a quality education. From what I have seen so far, the Individual Education Program is useless in regard to this. It is a facade to make it look like they are providing an education.
As evidence of this, our school system has been working with my son for 3 years learning basic math facts. The reality of the situation is, if they were really vested in his education, he would have surpassed this level of math in year one. The other evidence of this is my IEP meetings. Everything is presented as going “great.” I am not stupid. I can see where my child is at, as compared to other children in his grade.
My frustration is that I see me child falling further and further behind in a school system who doesn’t care. I want to get him additional help, but I can not financially afford it. I need help and I don’t know where to turn too. Like I said, I appreciate the scholarship programs for post-secondary school, but I need scholarship programs now to get my son through secondary school.
My employer provides a scholarship program to the children of their employees. Once again it is only for post secondary school. I actually submitted an application for my son, and of course it was rejected. From my perspective what good is a post-secondary school scholarship if I can’t get my son through secondary school.
I write this story to raise awareness. I don’t think there is enough public attention on this subject. I am sure if more people saw this topic through my eyes, more could be done to help children such as mine. I will continue in this awareness campaign, and continue searching the web for some program that may give my son a sliver of hope. I realize teachers have a hard job, but I need to focus on the child that I am responsible for, and at this point the teachers have let us down.
For more information on post-secondary education scholarships, check out these sites:
http://specialchildren.about.com/od/specialneedsscholarships/tp/Special-Needs-Scholarships.htm
http://www.allianceforschoolchoice.org/UploadedFiles/Home/School%20Choice%20Yearbook%202010-11.pdf
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