Monday’s Child

copy-of-dsc02390.JPG Georgia Beavers is a girl on the go. She is a high school senior this year, but her life has already been marked with extraordinary accomplishments. Her mother will tell you that just the fact that she is walking is miracle enough as everyone, including the doctors who tended to the premature Georgia, predicted she would never walk. She was born with many medical complications, but it is her cerebral palsy that is the most evident now.

Georgia is a Star Girl – she loves anything having to do with astronomy and has won several science fair awards during her school years in the local, regional and state levels. She was even honored with a national medal from the U.S. Navy. Her accomplishments led to an invitation to attend the prestigious International Astronomical Youth Camp this past summer. The camp which is held at a different locale each year was held in Germany, and Georgia was the only American student to attend.

She admits even her friends have been unkind at times over the years, but she and her mother are quick to point at the scores of “touchstones” who watched out for her. These teachers and friends were always keeping an eye on Goergia providing her safe passage as she made her own way. She dreams of studying in the field of black holes.

Let’s congratulate Georgia (and her mother) for her accomplishments !!!


Friday Share

ed-buckner-day-012_edited-1.jpg Faces of Tourette’s … Carter Stone and Ed Buckner, weatherman for KTHV-TV in Little Rock, tour the station. Buckner “came out” with his personal struggles ever since he developed eye tics as a child which would later be diagnosed as TS.  He gives away free copies of his video explaining what he went through and tells parents, “Love your children for who they are and don’t try to change them or hide anything. Accept them and encourage them. There’s a hidden gem under all those tics. My daughter is developing facial tics. She has Autism and ADD (Buckner also has been diagnosed with  OCD, ADD and Autism), and I tell her that she’s perfect, and she is exactly the way God has wired her.”

Like Carter, Buckner tried medicine, but the side effects, a huge weight gain and lethargic feeling, were too much for him. He continues to control his tics on his own, and the camerman has learned when to focus somewhere else.

To order his video or read his bio go to:   http://www.todaysthv.com/news/news.aspx?storyid=45879&catid=2

Here are some great websites – I especially like the first one because there is a clip from major baseball player, Jim Eisenrieich, who also suffers from TS. The site is all about a book, then 9 year old Dylan Peters,  has written called Tic Talk about his feelings as a TS sufferer…

www.TicTalkBook.com

www.tsa-usaa.org

www.tourette-syndrome.com

also, check out fellow blogger Chris’ notes on a book containing an interesting excerpt from a TS character.

http://just-write.contentquake.com


Ways & Means – No Cure for Tourette’s, but…

The goals of treating Tourette Syndrome should not be to completely eliminate all the tics and other symptoms that a patient has, but to relieve tic-related discomfort or embarrassment and to achieve a control of Tourette Syndrome symptoms that allows the patient to function as normally as possible.

Tourette Syndrome Tics only require treatment when they interfere with the functioning of the patient.

There are holistic medications on the market as well, but there is no cure for Tourette’s, and nothing has been proven to take away the spasms altogether. Some sufferers of Tourette’s, just as ADHD sufferers, will take their medications during the week, but don’t take it on weekends or during times when their creativty is required or during part or the whole of summer.

On A Personal Note:
My son has been on a large dose of Risperdal for over six years. Because he is shy and withers under the teasing of fellow classmates, trying to control his tics was, in a huge part, for social reasons. We just began homeschooling this year (8th grade) with the intent of lowering the dosage or even, one day, completely cutting it out. I introduced him to a local weatherman who has gone public with his personal battle with the disease. More on the weatherman in tomorrow’s post.


Define: Tourette Syndrome

Tourette Syndrome is also referred to as Tourette’s Disorder, Tourette’s, and sometimes Tourette Spectrum Disorder.

(information taken from www.tourettes-disorders.com)

“Tourette Syndrome was considered rare and exotic at one time (however now,) Tourette’s syndrome is a relatively common childhood-onset disorder defined by persistent motor and vocal tics and frequently associated with obsessions, compulsions, and attentional difficulties.”
– James F. Leckman, Donald J. Cohen of the Yale Child Study Center.

Tourette Syndrome is best defined in the archives and pages of neurological conditions, syndromes, and disorders. Initially Tourette Syndrome was seen as extremely rare and an individual was viewed as having violent muscle contortions (motor tics) and vocal disruptions (vocal tics) combined with outburst of swearing and obscenities. (Tourette history) However Dr. David E. Comings writes in Tourette Syndrome and Human Behaviour, “…Tourette Syndrome is one of the most common genetic conditions affecting humanity and many more carry the trait.”


Tourette Syndrome – Tourette’s Disorder is a neurological disorder characterized by involuntary body movements and vocal outbursts (Tics) for at least 12 months.

Note: There are no longer any requirements for severity or impairment.

The reason for having the tics for at least 12 months is specified is because transient tics — a brief period or one-off episode of tics — are really common in children (occurring in around ten per cent) and these people get better.


Tourette Syndrome is named after a French physician, Georges Gilles de la Tourette, who first described Tourette it in 1885. Tourette Syndrome commonly appears in childhood, more often in males than females, and may worsen thereafter or subside.  The absolute cause of Tourette Syndrome is unknown, nonetheless many theories and advanced information has increased considerably since 1885.


No cure yet exists, but symptoms are often treatable with various medications, behavioural therapy and alternative treatments. It should be noted that there is not any peer reviewed scientific evidence, yet, of success with “alternative therapies.” Even results of behavioural therapy are unclear long-term, and are going to be studied on a well-designed TSA grant possibly starting in 2004.


The “tics” symptoms involving Tourette Syndrome are known to temporarily aggravate with increased stress. Also the tics can wax and wane or come and go through out the patient’s life.  It is also normal for the tics to change and return. Some of the Tourette tics can be suppressed for small periods of time, however generally return with greater aggravation. It should also be noted that most persons with Tourette Syndrome do not require medication for their tics.

On a Personal Note:

You have become familiar with my son, Carter, in my writings who has Tourette’s and has been on medication (Risperdal) for going on 7 years. His illness is predominantly characterized by tics, with anxiety and depression components. We are homeschooling this year with the intent of reducing his dependency on medication as home is a far less stressful environment than school. Children can be very cruel, and the megaschools which are the norm offer choice opportunities for bullying to occur (but more on that later). As with all special needs, parents must help their children hone individual talents and skills for the sake of their mental well-being.

 


Monday’s Child

puerto-rico-carter_edited-1.jpgCarter is a very smart and perceptive young man of fourteen and is especially astute in the natural sciences and writing.  He also suffers from Tourette Syndrome with tendencies toward depression. He is a twin.

Carter was a headbanger from the time he was in a crib. By the time he was a toddler his eyes would roll back as well, and by the time he was in first grade his diagnoses was upgraded from chronic tic disorder to Tourette Syndrome. His tics now start with his eyes and head but also involve his shoulders and his upper torso. Sometimes, he snorts.  He is now homeschooled but does attend two classes at the local junior high every day because he loves playing the flute in the band.

Besides playing the flute, Carter loves the outdoors and has chosen to celebrate his birthday at the zoo several times and has attended special training as a junior docent at the zoo and attended Audubon Camp last summer. He has a natural tenderness with children, especially babies, and loves to write. He is a natural storyteller.

Carter wants to work with animals when he grows up or possibly write. He would also make a great state park interpreter. He makes the highest grades although his medication slows him down a bit. The world is at his feet. Let’s celebrate Carter Stone!

To nominate someone you know for Monday’s Child, please post a comment telling me a bit about the young person and a way to contact them.


Friday Share – Cochlear Implants

website worth visiting to find out more about issues of the deaf or hard of hearing : www.agbell.com

Currently, you can find information on the recent ADA changes in the making (the bill will be on the Senate floor in September) on that site and a list of senators, so you can have input on this monumental endeaver.

A good blog to check out to see how a mother copes with deaf children …  http://www.deafkidscanhear.blogspot.com


Ways & Means – Deaf Children Have Options

There are several methods when approaching the topic of Language Acquisition among deaf and hard of hearing children.  The following explanation is provided by The Alexander Graham Bell Association for the Deaf and Hard of Hearing.

 


Communications Methods

Most people communicate with each other by listening, speaking and writing. This is also true of the majority of people who have a hearing loss.
Hearing is our primary sense for receiving the world of sound — and one of the primary entrances to the “super highway” of the brain. When a person experiences a hearing loss, it is as if a “road block” has been placed along the path between the ear and the brain. And while hearing loss affects each person differently, it is generally true that the greater the severity of a person’s hearing loss, the more difficult it is to learn and communicate through hearing.
 Infants and toddlers who are born with minimal hearing or who lose their hearing prior to learning language experience greater barriers to fully developing their listening and language skills. The greatest window of opportunity occurs in the first three years of a child’s life so there is no time to waste.  Children identified with hearing loss can learn to communicate using a number of different methods, of which sign language is just one option. Many people do not know that children who are deaf or hard of hearing, with the help of hearing aids or cochlear implants and early intervention, can learn to listen and talk.
Fortunately, there are several communication options and success stories tied to each one. Parents typically choose from the following communication options:

The auditory/oral, Auditory-Verbal and cued speech methods all make up a larger spoken language approach to communicating. For information about educational programming for children pursuing forms of manual communication, (i.e., Bilingual-Bicultural or Total Communication), contact the National Association of the Deaf or the American Society for Deaf Children.

Now that you have a basic understanding of the communication options, gather as much information as possible. Start by asking yourself a few questions to help you evaluate the communication methods that are best for your child and your family.

 

Personnel Note:

When my daughter was first diagnosed (at 16 months), I wanted to explore the options available.  I already knew about sign language as I worked as a job placement specialist for a nonprofit organization finding folks with dissabilities employment.  Since I knew sign language, I represented deaf clients and knew, first hand, how limited their options were, not only because of their hearing deficits but, largely, because of the total language barrier.  They only communicated using ASL (American Sign Language) and weren’t taught sufficient reading and writing skills to help themselves in the hearing world.  I wanted better for my daughter who was profoundly impaired.

We chose the auditory-oral approach and for three years she was enrolled out of state in a residential program (we had an apartment there the third year). Years later (one month before her nineth birthday), she received a cochlear implant.  She is nearly fourteen and doing well – reading, writing, singing, dancing and living – in our world.


Define: Cochlear Implant?

cochlear implant recipent
Credit: Cochlear
young implant recipient. 
View larger image.

According to the National Institute of Deafness and Other Communication Disorders….. 

“A cochlear implant is a small, complex electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing. The implant consists of an external portion that sits behind the ear and a second portion that is surgically placed under the skin (see figure). An implant has the following parts:

  • A microphone, which picks up sound from the environment.
  • A speech processor, which selects and arranges sounds picked up by the microphone.
  • A transmitter and receiver/stimulator, which receive signals from the speech processor and convert them into electric impulses.
  • An electrode array, which is a group of electrodes that collects the impulses from the stimulator and sends them to different regions of the auditory nerve.

An implant does not restore normal hearing. Instead, it can give a deaf person a useful representation of sounds in the environment and help him or her to understand speech. ”

Personal experience:

My daughter was implanted at age 8, which was considered “middle age”. She is now a week shy of 14, and I can say that the implant provided that needed “ummph” hearing aids and FM trainers couldn’t give. Although the surgery was a big ordeal, the actual “turning on” was a major issue. 

One has to wait for the brain swelling to go down before knowing if the surgery was successful. When that day came, and the audiologist tried to turn her on, she screamed as if she were in pain. We had to return a second time to the audiologist’s office to try again, and she responded the same way. I made him swear he wasn’t hurting her.  Then, I took her home and did it myself in short spurts.  She stopped screaming and realized what was scaring her was the sound of her own voice, and the fact that she was hearing with so much more intensity than she ever had.   

Her first few days with new ears were truly remarkable.  She would slap her feet on the hardwood floor, open and close her drawers and turn on the faucet just to hear the water. These were sounds that had previously eluded her. I was amazed – and heartbroken – that I hadn’t known the true limits of the hearing aids.

She is reading on the sixth grade reading level (although she is in eighth grade), but that is still a teachable level.  She loves to read, and that has helped her develop her language skills tremendously.  She sings in the school choir and writes her own songs.  It has been tough, this mainstreaming, but I can’t express to you how happy she is and what joy that gives to me.


Monday’s Child

Monday’s Child is a weekly segment featuring children with special needs.  Send me your nominations.  We special needs parents are a fortunate crew.  We are the first to witness a long string of miracles that much of the world doesn’t seem to have time to tend to. One of my miracles is Caroline.

Caroline was born deaf. She hears now because of many years of therapy, St. Jospeh Institute for the Deaf in St. Louis and a cochlear implant. She is an eighth grader this year and will be singing in her school choir for the third year.  Caroline is a ray of sunshine. She loves to read and writes her own songs.  She’s into Anime. She recently asked me if she was old enough to adopt a sister!  Sometimes, three brothers is a bit much. After taking dance for several years, she is now a dance assistant at the dance studio in town teaching 4 and 5 year olds.  She reads at about the 6th grade level and is in resource language arts and math classes where she can have individual help.  She has made the honor roll every semester for as long as we can remember. She just wants to be like everybody else.  She wants to be a police woman when she grows up.  Let’s give it up for Caroline!!!


Hereeee’s Jeannie!

Hello, gentle readers, allow me to introduce myself as I am the new writer on the blog.  I am the mother of four children, the youngest three are teenagers, and each of them have been diagnosed with special needs.  The twins represent deafness (with a cochlear implant) and Tourette Syndrome, and the 16 year old has Asperger’s Syndrome.  They were all diagnosed early, and we had some serious challenges during the early years in particular.  But, living with a special need is living a lifetime of learning to make adjustments.  I am home schooling my eighth grader with Tourette’s, and we are focused on helping the kids advocate for themselves.  My husband who is a physician has Asperger’s as well.  We have fought the schools, enrolled my deaf daughter in a school a state away for several years (this was before her implant) and I have home schooled as needed.  Here is the spark of hope to you, young parents, they are all doing remarkably well.  Sixteen year old is in the National Honor Society, first chair tuba, all state choir, drives his own car, and HAS FRIENDS – did I mention he makes nearly straight As?  Other two are consistently on honor roll. Deaf daughter sings in choir – and writes her own songs!  Her twin brother loves science, is in martial arts and plays flute in the band…. great kids!

I like the weekly schedule put in place with Wednesdays discussing meanings of terms and inviting readers to send in questions….Thursdays introducing tools and new methods…Fridays sharing good websites.  In line with that, since this is Friday, feel free to check out my personal blog on raising children …   http://childrenofalessergod.blogspot.com


Pages:1...6789101112...26