Saturday, December 26, 2009

Dystonia Essay

Essay on Dystonia

For the past 5 years, my child John has been experiencing twitching in his neck and his shoulders. When he was younger me and my wife thought nothing of it, we just thought it was a bad habit that he had to break out of. He was a normal young boy with that small problem. He had many friends on our block that he would play stickball and ride bikes with that saw nothing wrong with John just like us. He is now 16 years old and is in a regular High School.

When John was 11, he started to have sudden spasms where he would twist his neck and a rapid movement in his shoulders. We were concerned about it at this time and consulted a pediatrician but he said that he never saw anything like it before, but just to be safe we could give him trihexyphenidyl. The doctor said that he could go on this medication but I was a little eerie about it so we decided against it.

Through his entire life, John was a good child and a bright kid. He good grades and was just like any normal young boy. He was very popular all through elementary school but once these problems starting getting worse in High school other children thought of him as somewhat of an outcast. When I was brought up to his school to have a talk to one of his teachers, I was shocked to hear what she was to say to me.

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John was very disruptive in class, he would me moving his neck in all disoriented types of ways and his peers would make fun of him disrupting the entire class. When I was told about this, I brought John to another doctor for another opinion with the same results. It was not until I went to a total of 4 different doctors until I found out the problem with John. He was suffering from a mild case of Spasmodic Torticollis. Spasmodic Torticollis or ST “is a condition that causes the neck to involuntarily twist to one side. The mechanisms of the condition are not completely understood but the affliction is neurological in nature. (BRYANT, MC)” This disorder is also known as Focal disorder and fits into the category of Dystonia.

The doctor said he could give John one of two things for his disability, he can either dampen the neural activity with either tranquilizers or brain surgery (brain surgery was not an option that we would choose). Since it was not a very severe case and John was not suffering any pain from this, we decided that it would be best for him to be given Botox injections as recommended by the doctor. Also he would have to go through physical therapy to help fight the disorder.

After the first few months of being on Botox, John started to show signs of the disorder weakening which made us very happy for him. He was able to go to a normal class again with no disruptions. The only time that John does start to get problems is when he is faced in a stressful situation when he would start to twitch his neck but not as much as he normally would. We spoke to the doctor about it and he said that sometimes when he is faced with a stressful situation, it can trigger the disability. The best things for John to do would be to stay active and avoid stressful situations.

Now our problem facing John is whether he should be put back into a regular school next year or if he should be put into a special education school for people with the same/similar disorders as him. This has been one of the toughest decisions me and my wife have faced since the original diagnosis for our child. We gave the decision to John but he said that what we think is best for him would be a good choice.

Since our Medicaid covers for John’s physical therapy, we decided to leave him in a regular classroom with all the other children as long as he is still in the same state and is not suffering. We both knew that we would have to go through a lot to have John put in a school for special education. Therefore, if he is doing well now in a regular classroom then it should be no problem for him.

If, for any reason, the medication does not work as well as it has, then me and my wife have decided to refer John to Pupil Evaluation Team (PET). We learned that special education services are educational services that are specially designed to meet the unique needs of a student with a disability. These services are provided at no cost to us as the parents. There are also supportive services for children with a disability. This might be better for John because supportive services are designed to assist a student with a disability to benefit from special education services. If John is succeeding in the regular education program and only needs supportive services, he may not be eligible for special education services.

After my wife and I learning more and more about Dystonia on the internet, we found out that more and more children with a physical disability are now attending mainstream schools. “The great majority of pupils who have physical problems or disabilities are now attending mainstream schools. If the pupils’ difficulties mean that they cannot attain their maximum potential in a mainstream setting, then placement is available at St Giles School, which has a full range of medical, nursing and therapy services as well as a full National Curriculum. There is also provision for deaf/blind pupils.” (Croydon Council, 2001)

Also, seeing that John has already completed 2 years in High School already it would be better if he stayed in the same school with people that he knew rather than put him in a new school where he would not know anyone. The teachers that he has classes with already know his disability and can accommodate it.

All in all, besides special education and services that can be provided, my wife and I feel that John should know that he is loved no matter what type of problem or condition he has. To us, it is more important knowing that he has a family that loves him very much and would do anything to help him overcome any problem that he may have.

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