By Denise Richardson

Staff Writer

ONEONTA _ Kieran Jennings and his classmates at Valleyview Elementary School took a math test Thursday.

The pupils picked up pencils. The room grew quiet with concentration.

Kieran, 8, carefully wrote answers on a sheet from a workbook, as his peers at nearby desks recorded and checked figures and sums.

The quiz time was a short spell in a morning busy with reading, writing and listening activities in the second-grade classroom.

Kieran, who has cerebral palsy and uses crutches to walk, kept pace with the schedule. He readily moved around desks, chairs and tables, and from one academic assignment to another.

"He puts forth a lot of effort," Judi Visnosky, his teacher, said. Kieran is among 12 students in her class. At the beginning of the school year, Visnosky said, she moved a table to make room for Kieran's wheelchair, but otherwise there has been little need for other accommodations.

He is treated just "like everyone else," Visnosky said. Kieran is part of the group, she said.

He sits on the floor with classmates during reading time, participates in question-and-answer sessions and plays in gym class.

Coping with the challenges of cerebral palsy seem an accepted part of daily challenges for Kieran, who said his favorite class is gym.

His physician, Dr. Joseph Dutkowsky, said he hopes the sight of crutches and wheelchairs used by children with CP will "melt away," and that people will grow to know Kieran and others as individuals with goals, desires and other human attributes.

Keirstan and Tom Jennings, Kieran's mother and father, are among parents, physicians, physical therapists and children's advocates who signed up

for the Bassett-Columbia Symposium on Cerebral Palsy, held at The Otesaga Resort Hotel in Cooperstown on Friday. The program, organized by Dutkowsky, was designed to provide updates on available treatments and venues to discuss the effects cerebral palsy has on individuals and their families.

Cerebral palsy is a group of disorders that have an impact on a person's ability to move and maintain balance and posture. The condition is caused by an injury to parts of the brain, or as a result of a problem with development, the CDC said. Often the problem happens before or soon after birth.

Dutkowsky, a pediatric orthopedic surgeon at Bassett Healthcare, said the condition is an injury to transmitters, or the motor part, of the brain. CP must never be confused with mental retardation, he said, and most people with CP have normal intelligence.

According to the CDC, one in 278 births in the United States results in a child with CP.

More infants with low birth-weights are being saved through skills of medical staff, Dutkowsky said, and the result is a growing number of individuals with CP in schools, work places and communities. Research also is advancing treatment for CP, which gives hope to families and patients, said Dutkowsky, an associate clinical professor of orthopedic surgery at Columbia University. His seminar topic at the symposium focused on how children with CP make a transition into adulthood.

Bassett Healthcare and NewYork Presbyterian, the hospitals of Columbia and Cornell universities, were symposium sponsors.

Early diagnosis, early intervention

Kieran was born prematurely and spent two months in the neo-natal intensive care unit at Albany Medical Center, his parents said, and he battled fungal meningitis.

Physicians were "very careful to not say" Kieran had cerebral palsy, Keirstan said, but a physical therapist confirmed the condition when Kieran was 6 months old. Tom said he remembers the milestone when a pediatric developmental neurologist said his son wasn't mentally disabled; Kieran was 10 months old, he said.

Keirstan said the fact that she and Tom were teachers in the Oneonta School District helped them feel confident about the support and instruction their son would receive.

She teaches art, and Tom is in his second year as a principal at Schenevus Central School, after having taught social studies at Oneonta High School. Before Kieran started school, each parent took two years off work to be home with Kieran and give him the hours of daily physical therapy he needed.

The Jennings said they remembered when Kieran asked about how long he would have cerebral palsy.

Kieran one day asked, "When I'm in second grade, will I have CP?" Yes, his father replied. Third grade? Fourth? Yes. Yes.

Keirstan said she was holding back tears. Tom told Kieran, "You'll have it all your life."

After a thoughtful moment, Kieran asked if they could go to Ruffino's Pizzeria for dinner.

Kieran attended pre-kindergarten at Greater Plains Elementary School and kindergarten and first grade at Valleyview. His parents said his teachers and the school staff worked hard to make Kieran's academic and social experiences successful.

More second-grade lessons

Teaching assistant Marilyn Bailey is an integral part of Kieran's community. She said she meets Kieran as he gets off a school bus in the morning, is nearby most of the day to help with academic and physical tasks and sees him to the bus after school. When he needs help, she is there. She is a partner in relay races, she said, and they sing in the elevator when no one else can hear them.

"He's just a delightful child," Bailey said. "He has a sense of humor. ... He's very agreeable,"

In the classroom, Kieran has a chair with wheels on the back legs. When at his desk, he uses a seat belt to prevent falls. He will walk, using crutches, to move about the classroom, and a wheelchair always is nearby for use in case of an emergency.

Kieran has trouble with zippers, she said, and he is rather easily distracted. Sometimes wanting to help him is a natural inclination, she said, but the greater goal is teach him to do things for himself and develop skills to further the independence he already is showing,

"He's very independent, but he's still learning," Bailey said. "I'm just there `in case.' ... I'm still learning to work with him."

Hard work leads to success

Tom Jennings said, with a smile, he wants Kieran to become an "alpha male." Jennings said he hopes his son becomes ambitious, self-sufficient and is happy. His son must continue physical activities throughout life, he said, and he is wondering about weight-training and future sports participation. His mother said she hopes Kieran will go to college and "finds a job he loves."

Kieran already has gained self-confidence that grows from facing and succeeding at challenges every day, Tom Jennings said.

"Hard work trumps talent _ every time," he said. "He's learned that if he doesn't quit, he'll succeed."

That earned success is an important lesson that some adults haven't learned, the Jennings said. They also attribute Kieran's success to the work of physical therapists who refused to let him quit.

Liam Jennings, 9, a fourth-grader at Valleyview, said his favorite activity with Kieran is to "run around and wrestle."

"Kieran is the best brother," Liam said.

Tom Jennings said Kieran is a hard-worker, empathetic, kind and inclined to play well with other children.

Skyler Payne is a classmate who enjoys spending time with Kieran, the teachers said.

Skyler, 6, said he and Kieran like to play with Matchbox cars and color.

"We also love Monster Jam and Transformers," Skyler said. They play catch, and Skyler said when they play tag, "I walk slow." Kieran is a "100 percent" friend, compared to others who are "99 percent," he said.

"He really is a good friend to me," Skyler said. "And I am really a good friend to him."

By Nancy Badertscher


The Atlanta Journal-Constitution

1:34 p.m. Saturday, October 10, 2009

Cody Holloway travels the halls of his Sandy Springs high school in a motorized wheelchair.

“The real deal on wheels,” says the sign on the back.

That combination — chair and slogan, disability and attitude — tells you something important about Cody, 14. Children with cerebral palsy may or may not think about the future in a different way from children without it. But in Cody’s case, they run for class president.

“Believe it or not, it actually started out as a joke,” Cody said recently.

Maybe so, but the idea took hold. It was last year in Jennifer Macke’s eighth-grade science class at Ridgeview Charter School that students sat pondering major milestones that might be reached by the time they celebrate their 100th birthdays.

Each student’s timeline was discussed, and when they got to President of the United States Cody Holloway, all of the class “loved it,” Macke said.

And last month he was elected ninth-grade class president at Fulton County’s Riverwood International Charter School.

“If Cody had said he was going to rule the world, I would have said: ‘That sounds about right,’ ” Macke said. “He’s certainly not one to let his disabilities hold him back in any way, shape or form.”

Cody navigates the halls in his wheelchair. A full-time aide at school helps him maneuver through crowded class changes, scribe his answers on standardized tests and interpret his labored speech, especially first meetings.

As candidate for class president, Cody billed himself “the real deal on wheels” and vowed to be “a voice” for students with teachers and faculty.

But he had more than a catchy slogan. His classroom aide, Brady Radford, was his strategist and helped take the campaign to Facebook. His dad had the title of campaign manager but insists he was strictly on the sidelines.

“He did his own thing, and I got out of the way,” Jeff Holloway said.

Two teachers pitched in so his televised message to voters was closed-captioned, bringing clarity to some of Cody’s pronunciations.

Whizzing around in his chair with “the real deal” slogan on the back, Cody solicited votes up-close from classmates, many of whom he knew in middle school.

“He decided since he drives this baby everywhere, why not use it as rolling advertising,” Radford said with a hand on Cody’s wheelchair.

Cody keeps up — especially with news and sports. As a candidate, he promised to keep his classmates abreast of the latest at school and in the community.

Students, like friend and fellow ninth-grader William Cormier, rallied behind him.

“He’s really friendly with everybody,” William said. “He also was very determined.”

Hannahkohl Almire said she watched Cody’s televised campaign speech and was impressed. She also liked his “real deal” slogan. “It was really cute,” she said.

Elections for class president were held in early September. Cody was declared the winner for the ninth grade, though the actual vote counts are never revealed.

“The biggest part was for students to realize that Cody’s cerebral palsy didn’t affect his mental abilities, only his communication and mobility,” said Joel Kadish, a Riverwood teacher and the faculty sponsor for student government.

The win was no surprise to Cody’s mom, dad, brother and sister. “We expect him to do good,” his dad said. “[He] quickly becomes Mr. Popular” wherever he goes.

Cody, who blogs on his beloved Detroit Red Wings and the Crimson Tide, ponders new places he might go — new what-ifs along his timeline. There’s nothing serious in it about himself as U.S. president, but Cody said he would like see one more “open to the needs of the disabled.”

Cody wants to be a sportswriter.

“He told me that all he wants is for everyone to see that just because someone has a disability doesn’t mean that they are not capable of being successful. They just have to work a little harder sometimes,” Cody’s dad said.

www.fdlreporter.com
By Stacy Ellingen
Special to The Reporter

Is the economy ever going to get better?

Where are the jobs?

Will I ever get a job?

These are the questions going through the minds of recent college graduates.

I ask myself these same questions daily, except I have some extra concerns to worry about.

Because of oxygen loss at birth, I was diagnosed, at age 3 months, with Athetoid Cerebral Palsy .

CP affects every part of my body. My muscle tone fluctuates, which makes simple tasks seem impossible. Except for when I'm sleeping, my body is always moving. I need help with all of my basic needs (dressing, toileting, feeding, etc.) I use a power wheelchair to get around and a communication device to speak with others.

Despite having a disability, I've been able to accomplish far more than many people expected. After a couple of years of early childhood classes, from kindergarten on, I attended regular classes. A one-on-one assistant was assigned to help me in the classroom. I did almost all of my schoolwork on the computer and had accommodations as needed. Even though assignments took me much longer to do, I never took any assignment modifications. I graduated from Fond du Lac High School in June of 2003.

Moving on to college

Graduating from high school was a big accomplishment, certainly, but I knew I wanted to go on. In the fall of 2003, I started at the University of Wisconsin-Whitewater. Before deciding on UW-Whitewater, my parents and I did a lot of research. We had to look at different things other than what a "normal" prospective college student would. Things such as accessibility, academic support services and personal care services were critical when I was looking at colleges.

UW-Whitewater is nationally known for specializing in serving students with physical disabilities. There's a center called the Center for Students with Disabilities where all of services for students with disabilities are located. Services include note taking, testing services, alternative media, transportation, physical therapy, and many others. There are also in-class aides for classes that have labs.

I started out majoring in business, but after struggling through a couple econ classes and an accounting class, I switched my major to advertising with a multimedia minor. Because assignments took me longer to complete, for the first few years, I was unable to take the full number of credits. Therefore, it took me a little longer, but I graduated in May. I can't even begin to express how thankful I am that I went on to college. It helped me become so much more independent and self-confident.

After graduation, I moved back home to Fond du Lac. Currently, I'm looking for a job and working on getting an apartment set up. I'm working very part-time as an online mentor for high school students with disabilities.

Dream career

My dream career is to design publications for a company. I'm working with the Division of Vocal Rehabilitation and disability employment agency to help me get a job. With the job market as tight as it is today, it will be a challenge for me to land a job. I will have to prove that, despite my disability, I will be beneficial to the employer. This isn't an easy task.

To be fair to the employer, I'll have to explain my situation and the accommodations I will need. I'm well aware that revealing this will automatically put me at a large disadvantage, but it's something that needs to be known.

In my classes, I've learned that because of tight deadlines, some companies work in a very fast-paced environment. That will be something that I will have to discuss with the employer.

Because of my physical limitations, things take me much longer to complete. People who know me know that I'm a very hard worker, and I won't stop working until the project is done. I'll have to prove that I'm dedicated to the job.

I have a portfolio that I can show which not only includes articles I've written for the paper, but also projects I've done. This will provide the employer with a sample of my capabilities.

Eventually, I'd like to work in an office setting, but I'm aware that when I first get a job, I'll most likely be working from home. If and when I work in an office, DVR will work with the employer to provide the accommodations I'll need. I'll need accommodations such as accessible doors, an accessible restroom, an adapted computer desk and an adapted keyboard.

Hiring people with disabilities adds diversity in the workplace, which builds companies' reputations. It shows that the company is willing to work with people with disabilities. It may take awhile, but I'm confident that I will find something right for me. I'll put it this way — I won't give up until I do.

Additional Facts
Disability series
Today’s personal stories by Stacy and Deb Elligen are part of a 4-part series by The Reporter that focuses on people with disabilities.

Monday’s feature talks with employers and services that help the disabled find employment and highlights the U.S. Census Bureau latest disability figures in Fond du Lac County.Tuesday we talk with Alto resident Don Saffron, who has started his own business.

October is observed as Disability Awareness Month to help empower Americans with disabilities through awareness.

RULES FOR COMMUNICATING WITH PEOPLE WITH DISABILITIES

1) Speak directly rather than through a companion or sign language interpreter who may be present.
2) Offer to shake hands when introduced. People with limited hand use or an artificial limb can usually shake hands.
3) Always identify yourself and others who may be with you when meeting someone with a visual disability.
4) If you offer assistance, wait until the offer is accepted.
5) Treat adults as adults. Never patronize people in wheelchairs by patting them on the head or shoulder.
6) Do not lean against or hang on someone’s wheelchair.
7) Listen attentively when talking with people who have difficulty speaking and wait for them to finish.
8) Place yourself at eye level when speaking to someone in a wheelchair or on crutches.
9) Tap a person who has a hearing disability on the shoulder or wave your hand to get his or her attention.
10) Relax. Don’t be embarrassed if you happen to use a common expression, such as “See you later” or “Did you hear about this?” that seems to relate to a person’s disability.
More information is available from American Association of People with Disabilities at www.aapd-dc.org

Often, the reality of our disabilities can lead to an increased instance of depression. Our physical scars may have heeled, but the physiological and sociological have not. Ninety-nine people out of one hundred and forty-four; according to a recent study linked their learning disabilities with depression and other depressive disorders. This is the result of a lack of flexibility in the education process. Students are often placed with those with emotional and behavior problems. Teachers are therefore, unable to give the time needed to each individual student because they must serve as baby-sitters to those who do not wish to participate in the learning process.
Yet, within each of us their remains a strong desire to discover “the secret.” This means, that, most people given patience, tolerance, and a relaxed environment can learn and succeed. This success will reinforce the positive aspects of each person’s life. Every achievement from traveling the world wide, to putting on a dinner is note worthy and valuable. The memory of past achievements can sometimes serve as a reminder in the depth of suffering that this current sadness will not last.
Many students can look back and remember that one parent, teacher, or friend who took the time to find it within themselves, to figure out just what that person needed to thrive, survive, and to see the light at the end of the tunnel. Often, just as much as the chemical imbalance, feelings of depression, and low self-esteem, come from a sense that a person is entirely alone. The awareness, that in fact, everyone wants an individual to in fact, succeed, can be very liberating. There is an old saying which demonstrates this idea. “Only if you have been in the deepest pit of sorrow, loss, and despair, can you ever know how magnificent it is to climb to the to of the highest mountain.”

Publish Date: Sunday,26 April, 2009, at 12:27 PM Doha Time

Dr Shaarani: ‘Two to three years of age is the time to show an affected child to a surgeon

By Bonnie JamesSurgical interventions improve the quality of life of children with cerebral palsy, Hamad Medical Corporation’s consultant orthopaedic surgeon Dr Mohamed Shaarani said yesterday.“Surgery enables many wheelchair-bound children to be transferred to walkers and those who are crippled to get on to wheelchairs,” he explained to Gulf Times on the sidelines of the first cerebral palsy symposium in Qatar.

Children with cerebral palsy have spasticity (stiff or rigid muscles with exaggerated, deep tendon reflexes, for example, a knee-jerk reflex), which can interfere with walking, movement, or speech.“We elongate some muscles and cut some others to make them loose and allow movement and flexibility,” pointed out Dr Shaarani, also a consultant paediatric orthopaedic.

Between two to three years of age is the ideal time to show an affected child for the first time to a surgeon, he added.In a presentation about dental problems in cerebral palsy, Primary Healthcare Department’s senior consultant Dr Mutaz Ahmed observed that incidence of dental decay is higher in this group, mainly due to poor oral hygiene.“Dental caries, gum disease, malocclusion, enamel defects, increased incidence of dental trauma, drooling, and grinding of teeth are among the main problems,” he explained.The incidence of gum disease is three times more among those with cerebral palsy than in the general population. The affected group also have a higher rate of dental enamel defects.“The increased risk for dental trauma can be attributed to problems with balance and muscle weakness in legs,” Dr Ahmed pointed out.Giving sedation, including general anaesthesia, is a very important option when doing dental procedures on an individual with cerebral palsy, as it may otherwise be difficult to control the patient.Highlighting the significance of maintaining proper dental hygiene in those with cerebral palsy the senior consultant suggested that parents should be instructed by dentists in this regard.“Cerebral palsy patients should be seen by a dentist every six months,” Dr Ahmed recommended while observing that electric toothbrush can be very useful for them.

Radiology, seizure disorders, growth and nutrition, medical management of spasticity, roles of physiotherapy, occupational therapy, orthotic, speech therapy and dietician, and education were the other topics of presentations at the symposium.

It was 1976, a day like all others. I was 25 years old, walking out of a beige and brown stucco building from a meeting that just ended with California Department of Rehabilitation. What was different was that I had had just about all I could handle! I was infuriated, humiliated, and dishonored. As I walked out the door of the office, and took the elevator to the main level, step by step the anger grew inside of me. I felt as though I had just been whipped and tortured.
I walked to my car, opened my car door, and began to cry hysterically. I was hurt, marred, and very wounded. I was just told that I would not be able to carry out my life the way I desired. Somebody else in power was trying to impose their idea of what a “normal” life or a person with a disability should be.

I was told that I could not go to college like other “normal young adults.” I was conveniently labeled mentally retarded for a second time in my life, and my dreams of becoming a dance and recreation therapist were shattered. My dreams of learning the things I never learned in 12 years of grade school felt like they were being stripped away for good. My chance to live a life, like everyone else, and to be looked at with dignity and respect were immediately being crushed, trodden over, and violently subdued.

All I wanted was to be able to live my life like all people. All I wanted was to be accepted in this world, and society, and live a productive life; with purpose and meaning in the areas I knew best. All I wanted was a chance to move forth, to learn, and to better myself, and the conditions I was all too familiar with. I wanted to succeed and make something of myself. I did not want to fritter my life away in front of the television set becoming a vegetable of the state.
I had much, much higher goals and expectations of myself. I had far more dignity and pride than they were willing to toss me. And, what’s more, is that I had far more tenacity and courage then they could ever muster! They did not know who they were dealing with. Know body knew who Karen Lynn Hershkowitz was.

I wanted to do more. I was open, resilient, and receptive to learn. I was willing to do what ever it took. I wanted to properly be able to construct and write a clear, clean, concise, put together sentence without any help from others. Not so far fetched in this 21st century, although for the 20th century, which I was born, and raised; it was an enormous obstacle! They were not going to allow me to learn. They, the (State Department of Rehabilitation) were not going to allow “this” disabled person, with Cerebral Palsy and a learning disability to go to college. It’s very true that we are conveniently discriminated against and still are subtly.

I was not going to put up with this indirect abuse. Nor was I going to sit back on my laurels. Something snapped. Something deep within my soul told me to not give up or give in. I got in my car, drove home and began to plot. I could not sit still on this matter. Thus, the next day, I was writing letter after letter and making phone call after phone call to file a lawsuit to solve this issue at hand. What I did not know is that I would have to fight this battle completely alone. I did not know how long this would take, or how much agony I would have to go through. But I knew that I would be fighting for an entire people.

This act that I was about to take, had never been done before. It had never been undertaken so boldly, and never had such a person such as myself; from the disabled community, chosen to break out of what “the experts believed she could do!” So bold the act was, it never been dreamed of before. No one in the disabled community before me ever had the nerve, guts, courage, spirit, and bravery to challenge the system, and the established stereotypes, and all their beliefs, verbal battering, and contempt’s for our desires, efforts, and needs, were held to be meaningless.

I would not sit in an office, and surrender control of my life and being; to a perfect stranger, who sat higher on the totem pole, without any understanding of the price I had to pay. They had their degree, they had their title, and they were determined not to allow me to have either. They could handle more severe versions of my disability because those people they thought could be controlled. There was no way, heaven on earth that I was going to be controlled, manipulated and forbidden to carry out my plans or destiny in the manor I saw fit. It would take years, but I won. I got the degree, and now, twenty-eight years later, I am proudly working towards a B.A.

On her back in a dark tube, Blair Smith held still as a scanner combed her brain with magnetic waves. Words flashed by her eyes: tack, vase, hope, glow, vague, cade.The 11-year-old had been told to press the button in her right hand if the word was real, the button in her left if it was nonsense. The answer itself was less important than the map the scanner would make of which areas of Blair's brain lighted up when she struggled with a word.The aim of the study, said Laurie Cutting, director of the Education and Brain Research Program at the Kennedy Krieger Institute in Baltimore, is to understand the neurological differences among students who are skilled readers, those who have difficulties and those with diagnosed learning disabilities.If neuroscientists can pinpoint which parts of the brain are activated when a reader puzzles over an unknown word, they may eventually help teachers tailor reading instruction for individuals.

That is only the beginning. Many educators hunger for scientific data to help them structure their lessons, and neuroscience is beginning to offer them broad guidance about what works best. One of the most startling recent revelations in neuroscience has been that the brain's structure is much more flexible than was previously thought; this may help teachers find ways to train the brain to better solve math problems or understand a book.

"There's an awful lot that neuroscience can begin to tell us in broad strokes that's relevant for education and that ultimately 10 or 20 years downstream can provide us with prescriptive information," said Robert Pianta, dean of the University of Virginia Curry School of Education."I think we're looking at a period of five years of very rich territory for investigation here."Brain research already is opening the way to help teachers detect and address complex conditions — such as attention-deficit hyperactivity disorder, dyslexia and its mathematical cousin, dyscalculia — that defy blood tests and other simple medical diagnostics.

Cognitive scientists are developing a theory of "micro-development" that could turn some lesson plans upside down. Studies have found that, on a minute-to-minute basis, children and adults learn in fits and starts, often going backward. That could indicate that students should be allowed to grope their way to understanding, for instance, by being asked to power up a light bulb using a battery and a strand of wire before having the theory of electricity explained to them.How the brain functions remains deeply mysterious, with studies seeming to unfold at a glacial pace.Still, top educational institutions have recently shown new interest in the link between brain activity and education. Johns Hopkins University this year briefed the Maryland State Board of Education on a neuro-education initiative that aims to "explore how current findings have application to educational practice."

The great enabler
Thanks to improved technology, people with disabilities now have access to a much greater range of options at university
Mary Novakovich
guardian.co.uk

Five years ago, the government pulled the plug on its e-university, which was supposed to attract hundreds of thousands of students in pursuit of an online degree. In the end, only 900 people applied, and the £62m project was quietly dropped, as were so many ambitious ideas that bubbled up during the dotcom boom.
But British universities have expanded their own distance learning options since then, and made inroads into new technology, which is excellent news for people with disabilities and learning difficulties.
The Open University (OU) has long been at the forefront of using technology to reach its students, many of whom are physically unable to attend tutorials. In fact, the OU has the highest number of students with a disability or extra educational need than any other higher education institution in Europe. Some of the ways in which it supports students are simple yet make all the difference to the ability to study: digital voice recorders, for example, talking calculators or computers with assistive software such as text-to-speech programs.
Like other universities in Britain, the OU has staked its place in the virtual world. Second Life, the virtual environment that often finds itself in the news for the wrong reasons, nevertheless has become a useful platform for distance learning. Students interact with each other using digital representations of themselves known as avatars, and they can have real-time discussions using instant messaging. Tutors have found that the avatar version of their students can be less inhibited and will takepart more freely in discussions than their human counterpart.
More universities are taking on the challenge of helping students with severely limited mobility to take part fully in their studies. Glyndwr University in Wrexham, north Wales, has the highest percentage (14.1) of students claiming the Disabled Students' Allowance in Wales, making it well placed to come up with creative ways of widening access for disabled students. A recent case was that of an undergraduate, Gareth Stafford, who was studying for a foundation degree in sound studio technology.
No missing out
Stafford's cerebral palsy left him with limited use of one hand and little movement in the arm. Using a conventional computer mouse for any length of time would tire him out, so the university's school of computing and communications technology devised a bespoke keyboard for him. His course is heavily dependent on computers, but this meant Stafford was finally able to do everything his fellow students were doing without feeling marginalised. He also didn't have to miss out on any part of the assessment process. But there are students whose physical disabilities are so profound that they can't use a keyboard. This is where technology has been moving rapidly towards innovations more often seen in science fiction.
For example, the Smartlab Digital Media Institute at the University of East London has been developing assistive technologies that have given an enormous boost to students with severe cerebral palsy. Even people with little mobility are able to use gaze-controlled interfaces to enable them to write. It's technology such as this that is finally allowing disabled students a fuller university experience.

WeblinksOpen University: http://www.open.ac.uk/

Glyndwr University: http://www.glyndwr.ac.uk/

I was browsing the newspapers online line and I came across the following article in my Local Gazette and it really touched me and brought back memories of the Unit from when I used to attend, (at Middlesbrough General Hospital) I wanted to share it with you all

Great work!
Children’s centre ‘excellent’ says Ofsted inspector
CHILDREN with disabilities are getting off to the best start possible thanks to an “outstanding” education and therapy centre.




The Cleveland Unit, based at the James Cook University Hospital, achieved outstanding grades across the board in a recent Ofsted report.

This is the second time the unit has been inspected by Ofsted and the second time it has received the highest possible rating.

“It’s a fantastic achievement for all of the staff,” said Liz Pickard, headteacher of the unit which cares for children with complex needs up to the age of five.

Funded by Middlesbrough Council and local health trusts, the unit currently has 61 children on its roll with a wide range of conditions including Down’s Syndrome, cerebral palsy, severe learning difficulties, emotional and behavioural difficulties, autism and life-limiting illnesses.

The unit has its own sensory garden and four colourful classrooms containing everything from story books to toy dinosaurs.

Liz said: “It’s absolutely wonderful to work here. We have fantastic staff and a dedicated team.

“At the end of the day it’s all about the children - improving outcomes for them and ensuring they get the best possible start to early years education.

“Standards are rising all the time and Ofsted has raised the bar significantly this year.

“My thanks go to all of the staff, support staff and therapists and all of the parents and carers who support us and fundraise tirelessly.”
In her report, Ofsted inspector Vivienne Dempsey said: “Staff provide an exceptional environment where all children are nurtured and staff recognise the uniqueness of each child.

“Children's learning and development is exceptional in relation to their starting points and capabilities.”

Liz said: “All children deserve the very best in early years services and nursery education.

“We have all worked very hard over the last two years to further develop our assessment nursery.”

Dianne Cocker of Linthorpe, whose son Blake, three, recently started at the centre, said: “Even though we know they are coming here because they have disabilities we feel they are at an advantage because it’s a wonderful nursery. The children practically get one on one care and they have got good facilities.”

Chief executive of South Tees Hospitals NHS Trust, Simon Pleydell, said he was not surprised the unit had done so well as its staff do an exceptional job.

He said: “The unit was again awarded ‘outstanding’ status which is virtually unprecedented on a national basis and is a major achievement for all the agencies involved.”

Councillor Mike Carr, Middlesbrough Council’s executive member for children, families and learning, said: “This terrific report is a credit to the headteacher and the staff who can all be justly proud of their achievements.

“All our young people deserve the best possible start in life, and it is abundantly clear that at the Cleveland Unit they are getting just that.”


The unit’s next ambition is to develop its outdoor play area. To make a donation contact Liz on 01642 854288.

Deaf Parenting UK and BBC See Hear are working together to make a programme on Deaf Parents and their experiences to highlight the issues they faces in accessing to services.

Sabina Iqbal, Chair/Founder of Deaf Parenting UK explained: "As our aim is about enabling, empowering and supporting Deaf parents, we need your experiences as Deaf Parents accessing to mainstream services across maternity care, accessing to health, children's education and many more etc. We encourage Deaf Parents to share their experiences, both negative and positive so we can put forward stories and highlight the issues faces by Deaf Parents."

Angela Spielsinger, researcher for BBC See Hear added: "We are keen to hear your experiences on the attitudes of medical professionals towards deaf parents who have hearing and Deaf child/ren. As Deaf adults have a 90% chance of having hearing children and what support they actually received from the professional."

"I would be grateful if you as a Deaf parents who have faced these issues and please feel free to contact me if you are interested."

Please submit your experience urgently to angela.spielsinger@bbc.co.uk or info@deafparent.org.uk.

To learn more, please visit Deaf Parenting UK: www.deafparent.org.uk or email info@deafparent.org.uk

Hello all.

Yesterday was my first chance to grab a mic and share my life with willing ears. I never got nervous until the car ride. My Dad and I discussed how my approach to this was going to be. I hadn't written any notes or bullet points on anything, because for some reason it just doesn't sit well with with.

My Dad warned me not to tell the crowd my entire life story, to leave room for them to buy the book after if they wanted too. When we got there, a fire began to burn in my stomach, maybe it was due to the fact that I was hungry or everything that I've been longing and hoping for was about to become real.

As I sat in the car, I examined the amount of cars and people walking in and out. Which there were many. My Dad helped me into my wheel chair an we then went into the conference hall. It was fairly big, and some people were dressed to the nines, and me in a pin stripe shirt and jeans and black shoes.

I wanted to rock the man in black look, but NE is so gosh darn hot, and I really didn't want to die early. Anyhow, when we were inside we were met by my new friend Brian. He is a very cool guy. He seated us at a table at the very front of the room.

Lunch was being served, and while we ate the good food. Brian and I talked about writing. He to is a fellow writer. He is working on his first book and I am honored to help him get his first book published.

While others were still eating, Brian and I talked about life and faith and hope. He to was a believer in Jesus. So that calmed my nerves a bit, in between the small talk. People that would chime in a say: "Hey Brian, what's the program for today?"

Brian would say: "Well we have an author here (Brandon Ryan) who wrote a book on his life". The responses would be "wow" or even a nod of approval. Before I new it, it was time to take my position in front of the podium and share myself with the sixty plus crowd.

Brian, read from a brief Biography that I sent to him as an introduction. The room was so silent, as though they were waiting for some famous musician to strike the first not on a piano, as my Dad wheeled me up there. I knew in my heart that there was no turning back.

I did what I always do. Bring it from the heart and nothing less. I started to talk about my life, what my condition was and the challenge it has made my life. I talked about the pain I've gone through, the scars on my body and the operations they were from.

I then went on to talk about life for others and how painful it can be. Babies who never get a chance to be brought into this world, people who cut, people who suffer from depression and not wanting to get out of bed every morning.

People watched and listened as though nothing else mattered, not getting back to their jobs or anything. Every one was in the moment. I openly talked about suicide and how thoughts of it were sometimes worse than actually going through with it. I even talked about how important it was to start living life.

That it wasn't about the money being made in life, we can't take anything with us when we die. Except how we lived are lives. I told the everyone how important it was to start living life today, for something more. And that if they knew of someone who was hurting or suffering, to please go and try and help them any way they could.

I ended my talk with a quote from Mother Teresa: "We are not called to do great things, only small things with great love."

Then it was time for a small question and answer session. People asked about my life and if I was on any medication. To which I replied yes, but very little, only really an anti depressant to help combat my own fight with an illness. Other questions were somewhat business related, which I didn't mind.

But the past was still yet to come. Several people approached me about how they could buy the book. I had brought a huge box full, as others made their way to my Dad to handle the money side of things. I was approached by a few people that worked in the Millard school district, they told me up front that they wanted to book me to come speak at their schools.

As some of you may or may not know, the Omaha and Millard area have been on the end of school shootings, threats and other life altering events. This clicked in my mind and I said yes to them right away.

Others came to me shook my hand and asked me to sign their books. Which I did with delight. I looked everyone in the eyes and asked them how they were doing in life. People told me that I had such a great voice and that they would help me get more events like this. Which brought me great humility and joy.

While some were talking to my Dad, I spoke with a lady (Who's name I forgot) but we had the most honest conversation in three to four minutes. She told me that she had a friend who's son committed suicide. I told her how sorry I was to hear that, and that it is horrible. She asked me if I had a business card, but I didn't because they were all gone, as always.

But she wanted her friend to contact me, because he runs and organization that deals with coping with the loss of a loved one from Suicide. So without thinking I wrote down my number to give to him. And I hope and pray he calls.

While I was still signing books and shaking hands. My Dad talked to tall man named Mike. I had no clue, what he did at all. So when my Dad and I got back into the car to drive home, he told me that Mike worked for the Millard Board Of Education. Which took me be surprise.

My Dad told how Mike told him that he was very serious about booking me for a large assemble. Which made me smile from ear to ear. I was ready to do it right then and there. Not because if being center stage or having attention, but because of the chance to be a light in the darkness.

This all means so much to me. I know this is only the start of greater things. And I cannot find the words to thank God for granting me the chance to talk about the hope that he gives everyday.

And I thank you so much for all of you who have supported me from the start, without you I wouldn't be this far. But I need all of you to get excited and on fire with me, please. Please tell your churches or venues about my story. Read it if you have not already.

I believe that lives are being changed and great things are in store for our world. So lets believe in recovery and redemption. Because its either we choose one or the other. we either choose to live or we perish. Lets choose to live.

With love,

-Brandon the writer.

CranioSacral Therapy: Discover Healing in A Gentle Touch

Candi Sparks, Licensed Massage Therapist (LMT #3465) for Rain the Salon and Day Spa participated recently in the CranioSacral Theraopy workshop offered by The Upledger Institute, Inc. of Palm Beach Gardens, Florida, an innovative healthcare organization that offers continuing education courses to medical professionals worldwide. This technique has been taught internationally and to be able to offer these services to the Monroe area is a big plus. CranioSacral Therapy was developed by osteopathic physician John E. Upledger in the early 1970's.

CranioSacral Therapy is a light-touch approach that helps alleviate pain from the body. This technique is used to detect and correct imbalances in the craniosacral system. These imbalances may lead to sensory, motor and/or neurological dysfunctions. The CranioSacral system is made up of membranes and cerebrospinal fluid that surrounds and protects the brain and spinal cord. From the top of the bones of the skull, face and mouth-which make up the cranium-all the way down to the tailbone.

The Central Nervous System has a large impact over a body's health and well-being but most importantly, the CranioSacral System has more influence over the Central Nervous System. With everyday tensions and stresses in life, the body absorbs them and eventually can hinder other systems from performing effectively. The muscles and tissues tighten over time causing pain and tension in the body. CranioSacral Therapy helps to eliminate the pain and tension naturally and strengthens the body's resistance to disease and promotes a sense of well-being.

This therapy is also used to release tension deep in the body to improve whole-body health and performance. It also allows the body's self-healing mechanisms to correct the body and relax. Anyone at any age from adults to infants can benefit from CranioSacral Therapy because it is so gentle. It has been proven successful relief for a wide range of medical problems associated with neurological dysfunction-conditions include: headaches, migraines, chronic neck and back pain, TMJ Dysfunctions, chronic fatique, stress and tension-related disorders, motor-coordination impairments, brain and spinal cord injuries, fibromyalgia, scoliosis, ADD/ADHD, learning disabilities, depression and many other conditions.

Each CranioSacral therapy session is highly individual and results will vary. Clients remain fully clothed during each session and relax on a comfortable heated table. Most sessions last about an hour and can be deeply relaxing. Experience how you can feel better now and eliminate the pain. Call and schedule your reservation today with Candi at Rain the Salon and Day Spa, 318-651-8088.

IT WAS supposed to be the most magical moment of Sally Johnson's life.

As midwives placed her new born baby boy in her arms, she looked down adoringly into his little face - and realised he was not breathing.

Within seconds the delivery room at Wordlsey Hospital in Dudley went into overdrive as nurses and specialists began the battle to revive baby Owen.

That moment was nine years ago and in the intervening years Sally has battled - not only to get the best services for her son, whose lack of oxygen at birth led to him having cerebral palsy, but also to cope with its effect on herself.

The family hit the headlines this summer when Owen was finally awarded an £8 million payout at the High Court to pay for his needs for the rest of his life.

But what about Sally's needs? How does a mum cope with a birth trauma on such a massive scale?

Although this summer Dudley Group of Hospitals NHS Trust accepted responsibility, Sally spent years blaming herself for Owen's health problems.

In reality, there was nothing she could have done.

Midwives and nurses managing the birth at Wordsley Hospital did not call for an obstetrician after an abnormal test showed foetal distress during birth and as a result Owen experienced near total asphyxia, cutting off oxygen to his brain.

Independent medical experts found that Owen should have been born 17 minutes earlier when he would have been born "neurologically intact".

But initially, Sally and her husband Paul, had no idea what had happened.

"They put Owen on me and they let his dad cut the cord," recalls Sally, now aged 34.

"I knew immediately that there was something wrong. I had read so many books and seen so much stuff on the television about giving birth that I knew how the baby was supposed to be and he wasn't doing anything. He wasn't crying. He wasn't breathing."

As health specialists dashed in, Owen was resuscitated, placed in an incubator and rushed to the special care baby unit.

All the while his parents were in shock.

"He was our very special baby. We had planned so much and we had really wanted this baby and suddenly this was all happening," says Sally.

"It was just mayhem. I just kept having visions of someone standing over me saying 'I'm really sorry....'

"It felt like forever before he gave a gasp of air and they took him off to an incubator to the special care unit."

The couple were lost in a sea of uncertainty.

"It was 10.25pm when I had him but it was 1.30am before we were taken down to the unit. We were just left in a room until then," says Sally. "And when I saw him, nothing had prepared me for what I saw. He was so tiny and there were just all of these tubes everywhere. I couldn't hold him, all I could do was put my hand in and touch him.

"They told us the next 24 hours were crucial and we had a very poorly child but no-one could tell us what was happening or why."

Owen proved to be a little fighter. Within two days his condition had stabilised a nd in two weeks he was allowed back at the family's Dudley home. But the couple's nightmare was not over as they gradually discovered all of the health problems Owen had - and battled to find the truth.

"I hated myself," says Sally.

"I just kept asking 'what I had done?' and 'why me?' I had tried to do everything right but I kept thinking there must have been something I had done.

"We had a meeting with the hospital to try to find out if it was something we had done and they told us it was 'just one of those things'."

After nine months the couple were given Owen's diagnosis - he had cerebral palsy.

It helped immensely to have a diagnosis and to begin to plan for the future but even then the couple were finding it hard to cope.

"I was losing weight, I had all my hair cut off, I stopped caring what I looked like," says Sally.

"It was a really hard time. Anyone with a baby knows how hard it was but I had no experience at all of a child with special needs. All the babies I had held before had been healthy babies so I kept worrying about every single thing.

"I wasn't given any counselling and there wasn't any help for me. I did have anti-depressants for a short time but I didn't want to become reliant on them. My friends and family were there and Paul was doing all he could but he had to go to work and I just felt so isolated at home trying to cope.

"I felt all alone and it would have helped me so much if I had had someone to talk to and to help me."

The family wanted to do their best for Owen and, with the help of funding from Caudwell Children, he attended the Foundation for Conductive Education in Cannon Hill Park in Birmingham which specialises in helping child ren with conditions such as Cerebral Palsy. He also attends, and loves, Sledmere Primary School in Dudley.

But it has very often been an uphill battle ensuring all the appropriate support is in place, not least a five year battle for compensation for their son.

Over the years Owen has learned to talk, walk, feed himself and develop other movements, skills and interests.

Sadly his parents are now separated, although Paul, a 42-year-old brick layer, is still very much a hands-on dad.

"Paul is the best dad Owen could have," says Sally. "But with everything that was going on we just couldn't get on together any more."

Owen has turned out to be cheerful and bright as a button.

"He is quite intellectual and loves things like history," says Sally. "He is very lively and is always on the go. He loves all sports but his favourite is golf. He goes to the Adventure Golf at Star City as often as he can - they say he goes more than the professional golfers!"

Receiving the compensation has finally given the family space. Sally is preparing to move herself and Owen into a new bungalow in Moseley which can be adapted to meet the youngster's needs and the family are able to pay for care to ensure Sally is able to have some time to herself.

"At one point we were looking at having to sell our home to pay for the therapy that Owen needed," she says. "It is such a relief to know that Owen will now be cared for for all his life.

"We adore Owen. He is a very special child, CP or no CP, and there is a very special bond between us."

Good afternoon ladies and gentlemen, boys and girls. Thank you for inviting me to your school today, and to share with you a part of who I am. This afternoon, I will not only read to you a piece of my autobiographical book,” The Broken Hoof,” but we will move together in rhythm, while teaching, and, I will empower you with some videos of where I have come from and what gifts I’d like to give to all of you. I’d liked to help you learn that “Anything is Possible” if you put your mind towards it.

You are all sitting here before me now, because deep, down inside of your own heart, you believe in yourselves like no one else does or ever has. You believe in your own individuals gifts and talents. And you believe that you are very special, in a very unique way. Each and every one of you, just like me, I’m sure, has had to overcome challenges and extreme difficulties. We all have these difficulties and obstacles, however, not all of us have the courage and strength, to face up to them, accept them, learn from them, grow from them, and change our attitudes in a positive way, while becoming willing to do what ever it takes to reach the goal we desire so badly.

Today, we will find new techniques; new approaches, and new ways to bring about these changes within ourselves, our attitudes, our beliefs, and our lives. We will begin right where we are now. And we will do it with unconditional acceptance and kindness. We will learn to be gentle with ourselves and our feelings. And, we will learn to accomplish our challenges one at a time. Today we will have some fun exploring ourselves with some of these methods.

We as individuals, have the power to change, along with change the world around us, but only if we have that willingness. This willingness within, will take us on marvelous journeys, but only if we trust this power of belief, then and only then will our accomplishments be unlimited.

When I was your age, the young people who surrounded my world, were all disabled. Why, you might be asking yourself? Well, I’ll tell you. When I was five months old, I got very sick. It left me with the paralysis you see today on my left arm and leg. I could not go to a regular school, because I could not learn like other children my own age. I had a learning disability called dyslexia. This learning problem made it very, very, hard for me to read, write, and do math like the other children in my classes. Thus, I had to go to a school that had children with Cerebral Palsy, like me, polio, multiple sclerosis, down syndrome, and other disabilities.

These were the only young people that I knew. So I had to create different ways to learn. I had to motivate myself, and tell myself that I could pass a test. I had to learn to be open minded. I had to learn to believe in myself, and to believe that no matter what my outer appearances looked like, I could change it. I would keep telling myself that I could change my life and the world immediately around me.

The difference in having a disability now, verses when I was a child, was that the educational system did not have the laws that you have today. I was pushed into classes where I was not learning like the other children around me. And when my mother got the first special education teacher, by talking to the principal, I was put in a classroom, behind a screen, to figure things out for myself, while sitting all alone for hours at a time, to fend for myself.

Finding my dance teacher, Al Gilbert, changed my life completely. Through his caring, gentle, and poised composure, I learned by example what it took to give it to myself, and then, eventually to all of you. Everyone of you here today, are here because you want to be here, you want to change and make your life better, and, you want to find and develop your gifts and share them with the world. This is and can be possible. It is all encompassing.

I would like to share a little bit of the journey I took to try to change some of the attitudes about what people with my disability were able to do. I spent a lot of time trying to put together the pieces of the puzzle called learning. Just as dance had made my body and spirit strong, now I was on a quest to find the tools which would unlock the door for me. Inadvertently, I helped unlock the doors for all disabled people.

I understood intuitively, that I would some day have to ultimately care for myself completely. To do that, I needed a good job. To get that job, I needed a higher education. And, I needed to learn all the things I never learned in 12 years of my fundamental schooling. The people, who were supposed to be helping me, sadly didn’t see thing the same way I did. They felt I should settle for something less than I believed I was capable of. To make a long story short, I fought and won the first Civil Rights Case in California, this guaranteed my right to earn an Associate of Arts degree in English and dance. While I was at college, I found helpers who understood my desire to learn all the things I never learned before.

This now led me to succeed in many different areas. I became an adaptive fitness instructor, an advocate, a published author, and a public speaker. My book, which I am going to read from shortly, was published in 2006, but took over twenty years to complete. And, in its infancy, it won second place in the Kaleidoscope Literary Prose Fiction Art award of 1983. I know every one of you has something to offer and give to the rest of the world. It is all about unlocking it. My hope is that my story and my visit here with you today, is the key that unlocks a door of deep desires for you. My other hope is that you find the power within yourself to succeed and the ability to be positive in every way. I hope that by me speaking here today helps you to find the area, the talent, and the gift you so joyously feel within your heart to give and share with the world.

A Long time ago, I found a poem by a famous British amputee; William E. Henley. He lost both his legs at the age of 12. When I first read these words, in college, these words from Maya Angelou sung sweetly in my spirit. Angelou first sees this as a mark of paternalistic contempt. She is held by a white superintendent in school who has just told her class, to be content to be athletes and cotton pickers. She turns it into an anthem or song of praises for our people and hers. It goes like this… “It matters not how strait the gate, how charged with punishment the scroll. I am the master of my fate, the captain of my soul.

I leave you with these sweet empowering words- take them home with you today to conquer and triumph! Make a positive mark on this world and leave a path behind you that no one else has ever left before.

Thank you for allowing me to share this with you, today. I will now answer any questions that you may have or that cross your mind.

One of the thing I have always struggled with is the argument between the help I felt I needed, and that which helpers were willing to give me. This was particularly true with my education. I have struggled for many years as you have heard me write about because I didn't receive the help I truly needed. People either got to much or too little of what they really needed. Especially today, where there is very little concern for individual learning styles and needs.

Educator are too worried, anxious, and obsessed with target and memorization. Leaving out the most important concepts to build not only skill, and memorization, but self-confidence and self-esteem. Unfortunately, because I was not getting the help I needed, I had to find other sources and ways to thrive, learn, and retain. My educators, had little understanding of my potential.

Later, I had to fight for the right, to learn, and to go to college, to fill all the empty spots I had not learned in twelve years of education in the educational system. What is wrong with this picture? Today, the educational system has not gotten any better. So my dear readers, and friends, we must forge forward, stay motivated, and educate ourselves though travel, reading, and conversation. However, there is far more to be learned.

I had learned a great deal from my own experience, and thoughts I worked with while doing adaptive aerobics and Yoga. The journey is not over my friends. Yet I think we are turning a corner. Every time I write I am learning from you, as you are from me. The computer is the greatest tool for interaction and learning this world has known.

Music and Dance have been a gift to my life ever since I can remember. I began dancing at the age of 3 1/2 years old. And from the moment I heard my very first piece of music, and performed my very first shuffle ball change, I knew the difference it was making in my life. It brought a peace, love, and joy to my inner being as well as a self- worth and confidence that have helped me in so many other goals and dreams I have achieved throughout my life

Not only by listing to the sounds and rhythm's of each music, and melody presented to me, but through share willingness and determination to execute these steps and techniques, accurately, even though my body had a physical impairment and challenge of Cerebral Palsy, did I, or was I able to weep and see not only me developing my abilities, but conquering the challenges before me.

These daily and weekly lesson's brought to my body, mind, and soul something I have carried with me all these years later. It all began way back when. But before anyone knew what positive affects and effect's it would have on a persons spirit and life, let alone a person with a physical disability or learning disability - I knew the benefits it gave me.

I know how music, and dance have straighten my body, brought peace to my heart, and helped me to develop my coordination and so many other things the experts talk about today.

I am only me. I may not have financially been able to conquer my education, or get or be given a degree, because of some knowledgeable person who tried to dictate what they wanted for my life. But I have soared, attained, and accomplished goals in my life, without this piece of paper; they call a degree and I am an expert in my own right.

I know more through personal experience than most book learned people;. I know first hand how music and dance have helped me. It has not only been physically, but it helped me with my learning and with my thought processes as well.

It helps to move through a situation at hand, however, sometimes if you can't, if one is willing, like I have been all my life, it may take years, and years, and years in a particular area in order to have a break through or healing. Sometimes I think my issue will never end, or that I won't be healed! It is a wound that keeps coming back time and time again. No matter how deep I dig to release this from my being, it's still there! It haunts me like a ghost! And then, suddenly, I am lead to someone else or lead towards a whole new direction and action in my life to take. All I find I need to have is an open mind and a willingness that never quits!!!!!

One of the on-going challenges I've been experiencing has physically gone on for the last 35 years. I don't like to talk about this much, because I've worked on it for so long I am hear to tell you that I am still alive and ticking and getting to the root cause. I have learned to cope and accept my allergies to all the different food I have. I will continue on, because I must! I will seek more, and research more, and reach out to those Doctors who I think might be able to help further! You see, in the last 5 years my body has been reacting violently to foods and not getting the nutrient to what I eat.

I have been working with the best Naturopathic Doctor's around. And Monday, I will be going to see a new Homeopathic Doctor. These challenges have been far more heart wrenching than my Cerebral Palsy and Learning Disability. When I begin to think about this for a minute, it is very painful, it is more painful, and up there emotionally with fighting for my life and my education with my Civil Rights Case, or trying to prove to the world that I am a capable person in doing anything I put my mind towards doing!

But I will survive and get through this just like everything else! I really will!

When I was born just over 26 years ago I was diagnosed with Cerebral Palsy of the lower limbs and after Mum pushed for an investigation, rigid scoliosis of the spine. (I’ll come back to this a little later).
The medical professionals told my parents not to expect much because according to their research CP suffers were pretty much ‘vegetables’ in most cases (understanding of the condition was much less than it is today and society’s attitude was very different).
Having a disabled Son was too much for my Dad, who was part of a very wealthy family whom had made their fortune in the construction industry, he and his family tried to persuade Mum that she should put me in an institution as having a disabled Son would have brought shame on the family in the circles in which they mingled as disabled people were seen as stupid and frankly not human and so of course I would not have been a suitable heir to their empire.
Thankfully Mum told them to take a hike and continued to fight the hospitals to get me the operations I needed.
They initially told her that there was nothing wrong with my back and that she was just being neurotic.
After obtaining a second opinion from one of the foremost experts on Scoliosis it was finally acknowledged that I had the condition, Mum made me do lots of exercise and I can do a lot of things that traditionally people with rigid scoliosis cannot, this is the end of the medical bit!

Education

For the first three years of school I was placed into a school for kids with special needs as the consultant I was under for my Scoliosis was concerned that I could get knocked over on my crutches and that it could damage my back or kill me in the worst case.
It was good fun but I was mostly learning things at home because the curriculum was geared toward those with severe learning difficulties and so did not stretch the brain very much.
After 3 years I moved to a mainstream middle school so that I could integrate.
Unfortunately, it did not quite work out that way, due to the appearance of my back and the fact I wanted to work I was subject to bullying.
I did however have one good friend, an able-bodied girl called Kelly.
Unfortunately, her family moved to Australia for a time and then came back and I bumped into her about 10 years ago but unfortunately I forgot to exchange contact details and as she is not particularly tech savvy I’ve got no hope of getting in touch via the web  (one of life’s regrets I suppose)
Anyway it was here that I discovered my love of technology and I learnt all I could about MS-DOS and the BBC micro and was frequently called upon to sort out problems when the teacher responsible for IT was not available.
I also left my mark on that school; I managed to persuade the headteacher to apply to the council for funding to put in a ramp up to the playing field.
The council approved, the ramp was built and still stands to this day!
From there I moved to secondary education, unfortunately the bullying continued and I was told by one person ‘I’m sorry I can’t be your friend as otherwise they will bully me’
I withdrew from socialising and concentrated on developing my knowledge of computer systems and technology in general, this did unfortunately give the bullies more ammunition but I didn’t really care, I got tagged as having a ‘social problem’ by the education authorities
I did average in my GCSEs and went onto study GNVQ Business at Intermediate and Advanced levels, achieving a Distinction in both despite the continued bullying.
I got an offer for one of the top Universities in the UK for technology but my grade for mathematics was just below the entry requirement and I nearly had a coronary when I looked over how much I would have walked out with as regards debt so I decided not to go that route.

Work

After completing my GNVQs I was offered a job working as a Learning Support Assistant at my secondary school for a year to work with kids with special needs to improve their IT skills as the other members of the team would not go near a PC (I had done this as my service to the school when I was in sixth form)
After a year, the funding for my post dried up so I was made redundant.
I then applied successfully for a job on a technical support desk for a large distance education provider and have been there for 5 and a half years now.
It took a while for colleagues to accept me and that I knew what I was talking about but at least they now listen to me as in 2005 I successfully passed the exams to become a Microsoft Certified Desktop Support Technician on the first attempt, the only person in the office to do so!
Since then only two sat the exams.

The person I am now and my future plans

I am probably viewed as quite an intense person (if by that you read boring as a lot of people do then so be it!) and my primary interest is still technology, particularly networks and I am looking to develop my career within this area and would like to start my own business providing consultancy services.
I also have an interest in trance music which is a subgenre of what many retailers term electronica (but no I don’t compose or play a note but I do fancy having a stab at DJing some day)
I should also be learning to drive sometime soon.

Anyway, thanks for reading, if you would like to drop me a line or leave a comment, please feel free to do so.

Progressing through school, it became apparent my handwriting was never going to be that good due to motor skills. Teachers found my writing ineligible, and hard to read for marking. It was decided I should learn to type. I have used a typewriter since I was 8 years old, at school and home.

My school was a junior and senior school in one building. I moved through school at a steady pace. Where my disability was concerned, physiotherapy was ongoing. While in junior school, I went horse riding at a riding centre, at Buckingham Palace mews. When sitting on a horse, I did exercises to co-ordinate upper body balance. Whilst at the riding school, I had the opportunity to see close up, the Queens Golden stage coaches, which are still being used for state occasions today.

From the age of ten I started swimming. Our school organised swimming trips at a local sports centre, once a week. Then it was decided to have our own swimming pool built attached to the school. We all helped raise the money towards the pool being built. Every pupil was sent home with a yellow labeled collection tins. At the time my grandmother worked in a cafe in a local market arcade. I can remember the yellow labelled tin sitting on the counter for people to make a donations. Once enough money had been collected, the building work commenced. From the school hall, through huge windows, we first saw, the ground being cleared, then the foundations and pipes being laid. Next came the red bricks which gradually formed the walls. It was an exciting time for us, as the pool was to be officially opened by celebrity Jimmy Savile. Months passed, then finally the pool was ready. Being purpose built for disabled children, it had two ramps for wheelchair users, or those who walked, but could not climb stairs. One ramp took you up to a sort of platform which had the second ramp going into the pool itself. I was never able to swim unaided as I found it difficult to learn to float, so had to always wear an inflatable rubber ring. The temperature of water was very warm and relaxing, I remember having enjoyable swimming sessions in the school pool.


Around the age of 11, while attending physio sessions at the hospital. The physiotherapist treating me, suggested I go to a boarding school. I was totally against the idea, as I hated the thought of leaving home. I was very happy at school and home, so why change that. Because I made my feelings on the matter very clear, it wasn't pursued any further.

Since birth, my weight, height and disability were checked regularly at appointments, to the hospital outpatients clinic, and then reviewed by a consultant. My right leg had always had problems with weight bearing. When standing, my right leg would rise up into a bent position, so I would look similar to a Stork. A surgeon examined me, to see if any surgery could be carried out. The consultant thought my hamstring was to tight and required an operation to loosen them. After investigation, it was decided that an operation would have little effect, or accomplish any improvement. And an initial result following surgery, will only be temporary and not permanent. Therefore, continuing physio was the only route to follow.

As I approach my teens, I became very interested in fashion and make-up. I was always good at reading, and enjoyed teenage magazines. One very popular magazine during the seventies was called Jackie. Magazines became a passion of mine, as I would study and ponder the models showing latest fashion trends. Then I became obsessed with cosmetics. As time went on, I experimented with make-up to see if I was able to apply it well, and to my surprise I could. I remember well known cosmetics brands out then, such as, Avon, Rimmel, and famous vintage perfumes by Faberge' and Lentheric. My favourites were Kiku and Tweed. And Avon did a range of products mainly for children named, Peaches and Cream.


My interest in music gathered pace during my teens. I went through the phase of having my walls covered with pictures of pop stars, from floor to celling. It was a time of incessant Rock and Pop music. The decade of the seventies, served as a period of me liking all sorts of music in the beginning. I started with Cliff Richard, which now seems ridiculous for a young teenager. But, I moved on to the likes of Slade, Bay City Rollers, David Cassidy and The Osmands and more........ Then I discovered Soul Music, in the form of Motown from America, as well as Disco. At this point all my wall posters were torn down, and thrown away.

Some of you may of read the entry "For the Love of Rachel" well I am great friends with this family and I thought I would share or should some of the conversation that David and I had recently


Hi Susie!
welcome home
Many Thanks! Good to be back!
We took a 3 day cruise with the girls to the Bahamas very nice nice to spend time with the little ones

David you don't know how close Rachel is to me it was just like reading my life unfolding.

I am so glad that you read her story! Thank you so much for your kind words!
its a pleasure

Rachel is in bed today. Had a teeth cleaning and x-rays. She is such a sweetheart.
I really enjoy your blog

There seems to be many nice people who visit your site.

Amy just came in and said Hi

The reason I say Rachel is so close is because I also wore dolls cloths, ok i wasn't that small but was premature, so as I say we are so close its unreal

But the main thing is that you grew up to be a wonderful person!

thank u

I am hoping the same for Rachel and Amy

I like to think I I have achieved most things I want too.

I think it is not so much the challenges that we face but how we as human beings rise to try to meet them.

yes

It's the environment that makes people disabled

Excellent point!

Well it is because if there were things like lower kerbs lower door handles etc
there wouldn't be the issues

exactly

I hope you enjoyed my blog as much as I did your book my aim is to show it how it is
I really do!

is it how you expected it to be since we have met

I have been very pleasantly surprised

It is always easier talking to someone on the telephone so IM has been fun. It has also let me meet very nice people like you!

one thing that i hope you might realise is that there is hope for Rachel and Amy as they get older, what I mean is it is possible to be independent because I know parents of disabled children always fear for the time when they no longer there to look after them

Absolutely and taking to you makes me so much more appreciate that

That is a great fear of ours

it may just feel like a huge mountain and that you will never get to the top, Yes I can totally understand that fear and it is a real fear. Although there is one thing you can do to help Rachel and Amy, and i still do it today.

If Rachel can be independent and live happily it will be more valuable to Susan and I than anything Tell me..

Well it maybe something that u want to incorporate into life now and that is sort of 3 lists

1st is a list of everything Rachel and Amy if you wish can't do
2nd is a full list of wot they can do like use knife fork etc doesn't matter how small
then and this is the sort of action plan one the 3rd is a list of things that can be done eg small goals to help them and you etc to remove the can't items and place them on the can list. Eventually you should see the I cant list reduce and the yes I can do this expand, and as they get older the lists will forever change

That is wonderful advice. Thanks you so much I will share with my wife Susan!

By having the 3rd action one you can work on little things so that the can't becomes achievable and it might be that something is repetitive but and this is only something I have realised over last year or so which is that my cerebral palsy is slowly decreasing.

That is great advice!

And that is down to my own conductive education of repeating stuff because what is happening and I can only assume that it may work for others is

That is wonderful!

By repeating something by means of doing something in the same pattern, like picking up a cup, what happens is if you pick it up exactly the same way every time
then the signal realises in the brain that hang on a minute this is the same every time, it seems to bypass the damaged part of brain and resend it down the correct neuro pathway and reconnects properly.

I am a big believer in cognitive retraining!

So that Rachel's brain will send the correct message to her when she does that task

i have found since I started doing this movement with my reciprocal walker I can walk better and I don't have any muscle tightness at all, I believe that I have reconnected the pathways.

It shows just how much plasticity that is in the human brain

And I haven't had any medication for nearly 2 yrs plus the hard work to take advantage a different pathways.

That is terrific Susie!

Earlier in my story I mentioned about Conductive education as a possible reason for the major changes since I started using my frame. The more I read about it the more I am sure that I have found the reason and solution for my vast improvement and continued improvement. The way I see it is with the frame I am doing the same movement all of the time to walk and the more I do it the more automatic it has become and therefore my brain has become switched on to this consistent movement because it doesn't alter at all and there is not a different way I can do it. There fore my brain has got no choice really if I want to walk then I have to do it this way and the message has got to go down the nureopathway that is there and not divert if you see what I mean.

The link below explains it perfectly and I agree with it every step of the way because I can say that my brain has rewired itselfHow Does Conductive Education Work? It is like my brain has been a huge maze with lots of twists and turns and dead ends so to speak, but now it’s as if those twists and turns have linked up and bridged the gap and now I can follow the correct nueropathway

27 August 2003 Hydrotherapy has started again today and it went very well. My balance is improving both sitting and standing and I feel like I am starting to improve this is my eighth session. I am doing a lot of sitting balance and reaching exercises and strengthening work. I am seeing the Consultant on 29 August for a review appointment.

29 August 2003 The appointment went well today. I went and had 2 new x-rays taken one standing with back to the machine and one taken standing sideways on. The Consultant was very happy with the results.

1 September 2003 Hydrotherapy session went well today, I feel as through I am getting stronger. I have another session next week.

27 February 2004 I can't believe it is coming up to my next review appointment with my Consultant. My back feels good and the thing that amazes me in all of this is that on the 13 March 2004, it will be a year since the operation; the time has just flown by. Went to see the Spine Consultant today and he was delighted with my progress.

I had 2 x-rays taken and I was also pleased how it looked. I still can't believe it is coming up for a year. I feel and look really straight and I am delighted I had it done, I have a new lease of life and pain free from the day it was done and it's great. I have to go back in 6 months to see the Consultant.

13th March 2004 Well the 1st year has arrived and my back is great, all the pain I had was gone on day one and never returned. I can't really tell my back has rods in etc it just feels like it’s never happened.

I was able to get in the pool by using the pool hoist as I am unable to walk up the steps. Once I was lowered into the water it was really warm and I stayed on the hoist seat so that I could do the exercises with the physiotherapist. It felt a lot easier to do the exercises in the water compared with doing exercises in the physiotherapy room, because the water was taking the weight of my body making it easier for me to move.

25 June 2003 I attended my second hydro session today and I was in the water for 15 minutes today. It was perfect: I did my first set of exercises sat on the hoist again and then I came off the seat and held the bars and I tried standing. Some of the water had to be taken out of the pool as I was unable to reach the bottom. Once some of the water had been removed and I was able to stand for a few minutes, it was really good and I was able to do exercises using a float. I found it a bit difficult at first to balance and the Physiotherapist helped support me.

5 July 2003 I went on Wednesday and it was a good session that lasted for 20 minutes. I started with my exercises while sat on the seat in the water and then the Physiotherapist helped me over to a step that was place in the water near the hand rail and I stood on the step with some support. I then did some exercises on the step holding onto the bar and then I managed to stand for a few minutes without holding on and it was great. I am going back on Wednesday and hopefully I am going to do some floating on my back.

11 July 2003 I went for another hydro session on Wednesday and it was great I didn't get to do any floating this week maybe next week. I did manage all my other exercises though and managed to stand without holding onto the bar for much longer. The Physiotherapist started to make the water move making it harder to keep balance but I managed to stay standing which means that I am getting stronger.

16 July 2003 I have been for hydro twice this week. On Monday I did a lot of sitting balance and standing balance work and today we started off doing the same exercises and then I did some work while floating on my back I loved. I had a special pillow which went around my neck a bit like a travel pillow, and then they had a special float which consisted of two big pieces of polystyrene and a kind of sling attaching the polystyrene at each end and this was put around my back and then I laid back onto it and I was fully support floating on my back, which was fantastic. I then did a series of exercises to help strengthen my back and stomach muscles.

I attended the clinic today to review my current wheelchair. The backrest has now been adjusted and some of the support padding has been removed as I no longer need the same level of support which I was pleased about. They are going to order some brake extensions so that it is a bit easier to reach the brakes.

I also attended physiotherapy today which went well and hopefully I will be going for Hydrotherapy soon. I have now been home for about eight weeks and I feel that I am improving all the time. I found it quite difficult when I first came home and mum needed to help me quite a lot. I am now finding it a lot easier and am able to do a lot more on my own, for example getting dressed, getting in and out of bed, going to the bathroom, and getting in and out of the bath. Still find getting in and out of the car a bit difficult sometimes. I am also gaining more confidence day by day and I keep thinking, "Well I couldn't do that last week and now I can". I am going for Physiotherapy again on Tuesday 3 June and I also have to go for an assessment on 6 June in the Physiotherapy Department at the hospital I had my operation at. I think it's so they can assess me before I star my Hydrotherapy.

I went for Physiotherapy yesterday and it went really well. After I had finished walking in the bars my Physiotherapist placed a small wooden step in the bars for me to see how well I could step up and down. At first it felt a bit strange although I managed it with her help and it really good as I feel as if my mobility is beginning to come back. We are going to continue to work on it in the bars to help strengthen my legs and help improve my walking. Once I had had a short rest I went for a walk using my frame and I managed to walk further than the last time although this time, you guessed it, I managed to walk back.

12 June 2003 Physiotherapist says I am coming on leaps and bounds compared to when I first saw her. Each week I tired to walk a bit further and succeeded. This week after doing all my exercises and walking practice in the bars, I managed to walk all the way to the Day room, and back again to the Physiotherapy room which for me is quite a long distance. I was really pleased with myself and that I had been able to walk without getting tired. Today instead of pushing myself from the Day room to the Physiotherapy Room for my appointment I am going to walk down to the Physiotherapy room with my Physiotherapist.

Following my treatment I managed to stay out of my chair and walk to where I wanted to go instead of using my chair. I must admit by evening I was getting tired. Today I have managed the same and as yet not used my wheelchair.

I went for my Hydrotherapy Assessment on 6th June 2003 and it went well and I got the go ahead to start Hydrotherapy. The hospital rang me on Thursday and said my first Hydro session is on 23 June 2003 which I am looking forward too. 3 months now since Posterior Correction and Spinal Fusion T10 to L5 Operation 13 March 2003. It has now been three months since my operation and I am feeling really well.

I feel that I am a lot straighter now compared with last year. After I had had my operation and I started moving around it felt like I had swallowed cement and it felt really solid. Now as time has passed I don't feel that anymore and it just feels like I don't have two metal rods in my back. I can't believe how straight I am and I am really pleased that I don't have to use my left arm to support myself anymore. It was a strange feeling to use a knife and folk again. I used to struggle with having to use my left arm to support myself now I don't have to do that anymore. I also that I am able to use two hands when using a keyboard which is a lot faster.

Comprehensive mainstream school

When I was 11 I started my local. The School had a Special Needs Building incorporated within the main school which allowed us to integrate with the mainstream lessons and still have access to Physiotherapy and Hydrotherapy and any special lessons. I slowly was integrated into the mainstream for all my lessons and only went back for my weekly physio.

I found it strange at first just because of the amount of students in the school as I had only been used to small class sizes etc. I studied for my GCSE's although I didn’t pass them all with high grades I passed them all the same. In the early days I don’t know who was more nervous the students because they weren’t used to disabled students in there school, or me because I wasn’t used to a mainstream school. This soon passed and it was just the norm and we/I was accepted as being part of the school.

One of my favourite lessons was PE and I remember getting assessed by a wheelchair therapist for a sports wheelchair one with a low back and no arm rests so that it was easy to use twists and turns etc. I loved that chair because I was able to go really fast in it which was great when we played wheelchair basket ball. I also spent time on the trampoline with my Physio bouncing around it was surprising how easy it was to move.