30 April 2009
MY daughter is handicapped and has cerebral palsy and is a resident in Blenheim House, Thornaby. I live in Marton, she is still classed as a Middlesbrough resident.
We have recently been informed that Dial a Ride is combining with social care and the service will not operate from 3.30pm on Saturday until Monday morning. There seems to have been no recognition for the regular users of the weekend services.
What about the churchgoers and those who want to socialise on a Saturday evening?
My daughter receives £49.10 mobility allowance. How far will that go when the taxi fare is £16 return?
This is blatant discrimination for disabled people.
26 April 2009
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.
25 April 2009
Posted By: Donna Lowry
ATLANTA - On a recent day, Curry Harris, 14, is walking on a balance beam while wearing glasses with blue lenses that flashes lights on the left side every few seconds.
Curry is undergoing a session at the Brain Balance Center in Peachtree City, where he spends several days a week getting a combination of therapies to strengthen the right side of his brain. Therapists at the Brain Balance Center have diagnosed Curry on the autism spectrum and are working to strengthen the right side of his brain.
Dr. Robert Melillo is a chiropractic neurologist, professor, and researcher in childhood neurological disorders who founded the Brain Balance Centers and says with proper treatment, the symptoms of autism can disappear.
"He (Curry) is a child with typical right hemispheric delays, so we're going to use his left side of his world to exercise his right side of his body and his brain," says Melillo of Curry.
The Brain Balance approach seeks to strengthen either the right hemisphere of the brain for neurological disorders such as autism and ADHD and the left side of the brain for obsessive-compulsive disorder and dyslexia.
The basis of Dr. Robert Melillo's Brain Balance research is a drug-free approach for what he calls disconnected kids.
"What happens is you end up getting a child who can't really use their whole brain at the same time," he explains.
The Brain Balance Centers treats everything from diet to physical, sensory and academic areas. Three months of treatment in the program would cost on average about $6200.
"For instance, word reading would strengthen the left side of the brain, but reading comprehension strengthens the right side," Mellillo explains.
Curry's parents say he's progressed more than they could imagine.
"Curry's grade levels have come up," Aneta Harris, Curry's mom, explains. "His math, I think he's come up 2 or 3 grade levels in math. Reading comprehension has come way up."
"We think we can get a kid to their age level within a 3-6 month period," Melillo insists.
Every kid with autism?
Melillo admits "Not every child is going to get to a normal typical level," and the program may not make major differences in a child on the more severe end of the autistic spectrum, but he believes even those children can show improvement with therapy.
Curry's parents say while he is still a work in progress, they're pleased that he no longer has anger outbursts and isn't as socially awkward.
"Socially he has become a little more aware of people around him," his mom explains. "He's giving us hugs at home which weren't done before."
Dr. Melillo will talk about brain balance and sign copies of his book, Disconnected Kids, on April 23 at 7:00pm at the Sheridan Suites at Cobb Galleria.
The Brain Balance Centers located in Roswell, Suwanee and Peachtree Center will have a booth at theGeorgia Walk for Autism on May 3 at Atlantic Station.
Having skirted around the edges of disability, equality, human rights etc for a number of years I am a confirmed advocate for disabled people. so much so I work with and for disabled people every day. When I suddenly became disabled after a car accident it was a fairly rough ride, a huge steep learning curve which a mere mortal cannot hope to understand unless they have been there, done it and actually worn the T Shirt!
It was a turning point in my life, in fact in our lives as a family - one which looking back on I wouldn't change for the world, as it made me what I am, what I have and what I dream for today and for the future. It lost me friends, but it made me more, it lost me part of my life but enriched it 100 fold, it changed my goals which upset the applecart, but hey you rethink and get on with it!
We moved country, we started our own business, we work tirelessly, we have more stress, we learnt a new language, we have more debt that you can ever imagine but we also have amazing job satisfaction! Can't be all bad!
We are trying to change the preconceived ideas, we are trying to change an industry, we are trying to ensure people do live life to the full!
What are we doing - wheelchair accessible holiday accommodation - not so hard you all think - hey its not if you get it right, but how many hotels, rentals, hostels have you been to in your time that aren't right but think they are! Yep - thought so - 99% of disabled travellers have at some stage or another been on a holiday only to find they can't get to the loo, or have a shower, or worse still get in the front door..................complete nightmare...............yet the accommodation said they were accessible, in fact they had a wheelchair logo somewhere on their website, or brochure.
The fact of the matter is that 90% of these places have been designed/converted by a non disabled person, an architect who has read all the rules and regs for turning circles, hand rails, etc but not considered the fact at how bloody difficult it actually is to get in and out of a bath, or if you have a raised loo then one grab rail on one side isn't actually sufficient.
Right I am getting off my soap box now - this subject can go on forever - but we all know what I mean. So onto bigger and better things - we have done it and I truly mean that - we have a website that shows you everything about our apartments, it even has measurements, widths of doors, heights of loos, beds, etc. ALL of our accommodation is accessible, not just a small % I mean ALL of it, we have thought of other barriers, equipment or lack of it, support workers or lack of them, adapted transport or lack of it - all things that are incredibly important to disabled travellers, but so overlooked in the tourist industry. Some people want Tea and Coffee making facilities in their rooms, we talk about hoists and pressure mattresses. I don't sell our place on the wonderful beaches ten mins down the road, my sales patter is all about the bathroom and toilet facilities! You think I am joking - not in a million years!!!! LOL
This is what I mean......one of the tags for the photo of the bathroom is 'enough room to shower a horse' and we mean that, room for the wheelchair, a hoist plus the shower chair and then still room for support workers, etc, etc you get my drift?
I can't get it exactly right for YOU - you is too personal, and people are too individual, what works for one won't for another, etc, etc but generically speaking we have got it right, and we try to ensure that people can get about, are comfortable and have a great time whilst they're here - what more can you ask for?
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.
24 April 2009
A CHILD with a rare medical condition is responding well to an alternative therapy.
Tristan Forsdyke has had several sessions of Bowen Technique.
The 18-month-old has had hemiplegia since he was just five weeks old. It is a neurological condition which weakens one side of the body and affects one child in a thousand.
It is sometimes described as a form of cerebral palsy and the effects are similar to those of a stroke but it does not shorten a sufferer's life. Tristan wears a splint on his arm and an insole in his shoe to help with the weakness on the right side.
His mum Tess Forsdyke said: "He really enjoys the sessions.
"I've tried the technique myself as I wanted to know what he was experiencing.
"We have seen a real improvement in him since he started the sessions and he is making more attempts to use his weaker arm now."
The Bowen Technique is a gentle, deeply relaxing, physical therapy that frees the body to attain its natural balance and healing, addressing the body as a whole.
It often extends beyond the presenting symptom to the healing of underlying causes of illnesses.
In a session, the patient lies on a bed, wearing loosely fitting clothes and relaxes.
Tristan just sits in a chair as he is so small.
The therapists – Judith Watson and Norman Ogden – apply a series of movements along the spine and at specific points throughout the body. It is the deeply relaxed state which seems to act on the body's self-governing nervous system to enable it to regain its own natural balance. Mrs Watson said: "A very gentle technique for children was developed by Howard Plummer around 15 years ago involving moves over soft tissue – a slight variation of Bowen Technique.
"Mr Plummer has had fantastic results with children with cerebral palsy, autism and ADHD and dyspraxia.
"In some ways, Tristan has been a case study for us, his right arm and hand were badly affected and have improved.
"It's very effective for people who have had a stroke as the body is designed to heal itself."
The technique uses a high degree of physical manipulation and works with babies, children and the elderly.
Bowen is effective in treating a host of ailments including shoulder problems, RSI, back pain, sports injuries, migraine, respiratory problems, fatigue and stress.
"Clients frequently comment on how good they feel and how quickly they relax – as if they had just had a full body massage," said Mrs Watson.
Mrs Forsdyke organised an aquacise fund-raiser in December which raised £175 for the charity Hemihelp, which aims to promote the rights and well being of children with hemiplegia by providing information and support and by raising general awareness of the condition. Smart Therapies is in St Hilda's Business Centre, The Ropery, Whitby is run by Judith with Norman Ogden.
Further details are available at www.smart-therapies.co.uk.
For further information on hemiplegia visit www.hemihelp.org.uk
ASDA is to start selling walking sticks and wheelchairs to cater for Britain's ageing population.
It said becoming the first mainstream retailer to offer mobility aids would help 'eradicate the stigma' around disability.
The new range will include a collapsible wheelchair and fold-up walking stick as well as devices to help remove lids from jars and turn taps.
One step at a time: Asda is to offer a range of living aids including walking sticks and wheelchairs to help 'eradicate the stigma' around disability
The supermarket is also branching into the market for bathroom aids such as shower seats and raised toilet seats.
The move comes after research has shown that pensioners will make up almost a quarter of the population within 23 years.
The aids will also be targeted at younger people with disabilities and those suffering from sports injuries.
Dermot McLaughlin, spokesman for Mobilease, which has collaborated with Asda to offer the range of 15 products, said: 'Until a few years ago no one thought you should be able to buy televisions or mobile phones from supermarkets, but now this is accepted as normal.
'There was a time when pregnancy test kits and condoms were sold under the counter.
'A similar attitude has applied to our business, but all these barriers are about to be taken down. It is about time the things that make life easier are easier to buy.
'The most important thing is that having Mobilease available in Asda will gradually change people's perception of disability and eradicate the unnecessary stigma that has surrounded mobility products.'
The range will be sold in 75 Asda stores from Saturday, and rolled out to more of the chain's 350 stores if it proves popular.
Until now, mobility aids have only been available on prescription through the NHS or social services, independent stores or specialist websites and newspaper or television adverts.
Mr McLaughlin added: 'The mobility and living aids industry has been stuck in the dark ages for decades.
'The very products that are created to make life easier for people have been cursed by a strange irony - they are unnecessarily difficult to access.
'They should be easily available to customers, but the existing government system can be slow and restrictive.'
16 April 2009
He was referred by his GP to a specialist clinic in Cambridge where skin tests showed an allergic reaction to a variety of fruit and vegetables.
April 14, 2009
The most accessible parking spaces are often reserved for the disabled, but now so is one of the world's least accessible slices of real estate: the North Pole.
Over the weekend, David Shannon, a resident of Thunder Bay, became the first quadriplegic to reach the North Pole.
Almost 100 years to the day after Robert Peary claimed to have planted a U.S. flag on the spot, Mr. Shannon, 46, planted a wheelchair access sign at the northern end of the Earth's axis.
"This sign represents all peoples who have faced challenges or adversity in their lives and have dreamed of overcoming them. If we as people, work together in our homes, our cities, our countries and in our global village, there is no dream that cannot be realized," Mr. Shannon said, according to a post on the expedition's website, teamindependence.ca.
Mr. Shannon reached the pole in a specially crafted sled, under the power of his own triceps and with the assistance of fellow lawyer and Thunder Bay resident Christopher Watkins.
The two men spent the past two years devising equipment suitable for the journey, training along the snowy trails in their hometown.
"It took about two years to work out all the planning necessary to get the technology together, remembering that David would be heading to the North Pole but he does not move from the neck down, so therefore the winter protection that he needed was quite remarkable," Mr. Shannon's father, Bill Shannon, 70, said yesterday in an interview from his home outside Vancouver.
As a member of the University of Waterloo's rugby team, Mr. Shannon was injured during a team practice shortly before the first game of the season and only a week after his 18th birthday.
An angled break across his fourth and fifth vertebrae left him with some use of his triceps muscles, but very little else below his neck. Despite his injury, Mr. Shannon rolled his wheelchair across Canada in 1997, from the Atlantic to the Pacific Ocean, studied law and human rights at the London School of Economics and maintains his own law practice in Thunder Bay.
Bill Shannon said news of his son's arrival at the North Pole brought a mixture of pride and fear. The trip across Canada led to two broken ribs and he worried that without feeling in his lower body, frostbite and infection pose a constant threat.
Mr. Shannon and Mr. Watkins both suffered injuries in the final stages of the expedition, but the two men are now safely recovering with a third teammate, Darren Lillington, in Norway.
Nordic Walking Poles Are Helping Many with Balance and Stability Issues - Including Many of Our Recovering War Heroes
Glen Arbor, MI, April 15, 2009 ---- Nordic Walking instructor, running and ski coach, Pete Edwards, discovered five years ago that Nordic Walking Poles were not just for expert skiers deprived of snow, but doubled as an aid for those with balance and stability issues. He started volunteering to host free Nordic Walking Clinics at Multiple Sclerosis (MS), Parkinson's (PD) and Diabetes support group meetings. A couple years later he donated dozens of pairs of durable one-piece Nordic Walking poles to Walter Reed Veterans Hospital in Washington, DC. He has also shipped free Nordic Walking poles directly to injured soldiers returning from Iraq and Afghanistan after talking to their spouses and/or parents. Family members, doctors and physical therapists have been amazed by the improvement in posture, balance, stability and gate thanks to the use of Nordic Walking Poles in the correct lengths.For over 25 years Edwards has been coaching runners and skiers. His skiers have been ski walking and hill bounding with poles during the warmer months when snow could not be found.
After a knee injury ended his marathon running career, his Nordic Walking Poles saved the day – allowing Edwards to Nordic Walk and even Nordic Run (running with poles) pain free.Using the perfect length Nordic Walking Poles helps us to automatically walk with a super straight back - better walking posture is biomechanically a good thing. This improved walking posture when combined with the unique 4-Wheel-Drive type action of walking with poles radically reduces the stress to the shins, knees, hips and back. Nordic Walking is low impact and yet provides a highly effective workout - burning more calories and working more muscle groups than regular walking.Nordic Walking has been the fastest growing fitness activity in Europe for several years. Over seven million Europeans are walking with poles - in the city, in the country and up in the mountains. Walking with poles helps to burn more calories than regular walking, improves balance/stability, radically reduces the stress to the weight bearing joints and provides a workout for your upper body by engaging your arms and legs – a lot like cross country skiing.Nordic Walking’s winning combination of improved posture, a unique 4-Wheel-Drive type action and shock absorbing benefits are helping many individuals to walk comfortably again.
Nordic Walking Poles are helping individuals with balance issues, knee issues or new knees, hip issues or new hips, back issues (including those with rods in their back), weight issues, multiple sclerosis (MS), parkinson’s disease (PD), neuropathy, arthritis, bursitis, scoliosis, lumbar stenosis, fibromyalgia, post polio, osteoporosis, stroke recovery, cancer recovery and other limitations to walking. Nordic Walking poles are helping thousands of Americans get off the couch, successfully get outside, start walking safely and effectively launch much needed walking campaigns.Individuals that use canes and/or walkers often find that Nordic Walking Poles are much more comfortable and stable than their canes or walkers. Individuals that find pushing a shopping cart comfortable find that Nordic Walking poles provide even more support and much improved balance, stability and versatility. The feedback from amputees, individuals with head trauma and others with balance issues is consistent – the poles really do improve balance and stability.From a fitness standpoint, walking with the correct length poles and proper technique can burn up to 40% more calories than regular walking. Walking with Nordic Walking Poles can turbo charge any walking campaign.Real Nordic Walking Poles are equipped with comfortable fingerless glove type straps, durable metal tips (for use on trails, the beach, snow and ice) and special rubber tips/paws that are removable and designed for use on pavement and other hard surfaces. All poles from http://www.skiwalking.com/ and The American Nordic Walking System are also equipped with patented straps (patented by the Salomon Ski Company).Thanks to the efforts of Pete Edwards, SkiWalking.com and The American Nordic Walking System, individuals of All ages and All fitness levels, are safely unlocking the calorie burning and aerobic benefits of walking, hiking, trekking and running with poles. These durable one-piece poles prove to be safer, lighter and much more durable than cheap twist-locking adjustable length/telescoping/collapsible poles. Nordic Walking Poles from SkiWalking.com and The American Nordic Walking System also includes a free Nordic Walking DVD and there are a variety of exertion options to choose from regardless of age, balance and/or fitness level.
13 April 2009
A picture began circulating in November. It should be 'The Picture of the Year,' or perhaps, 'Picture of the Decade.' It won't be. In fact,unless you obtained a copy of the US paper which published it, you probably
Would never have seen it.
The picture is that of a 21-week-old unborn baby named Samuel Alexander Armas, who is being operated on by surgeon named Joseph Bruner.
The baby was diagnosed with spina bifida and would not survive if removed from his mother's womb. Little Samuel's mother, Julie Armas, is an obstetrics nurse in Atlanta . She knew of Dr. Bruner's remarkable
Surgical procedure. Practicing at Vanderbilt University Medical Center in Nashville, he performs these special operations while the baby is still in the womb.
During the procedure, the doctor removes the uterus via C-section and makes a small incision to operate on the baby. As Dr.Bruner completed the surgery on Samuel, the little guy reached his tiny, but fully developed hand through the incision and firmly grasped the surgeon's finger.
Dr.Bruner was reported as saying that when his finger was grasped, it was the most emotional moment of his life, and that for an instant during the procedure he was just frozen, totally immobile.
The photograph captures this amazing event with perfect clarity. The editors titled the picture, 'Hand of Hope.' The text explaining the picture begins, 'The tiny hand of 21-week- old fetus Samuel Alexander Armas emerges from the mother's uterus to grasp the finger of Dr. Joseph Bruner as if thanking the doctor for the gift of life.'
Little Samuel's mother said they 'wept for days' when they saw the picture. She said, 'The photo reminds us pregnancy isn't about disability or an illness, it's about a little person.' Samuel was born in perfect health, the operation 100 percent successful.
Now see the actual picture, and it is awesome...incredible....
Don't tell me our God isn't an awesome God!!!!!
Caroline Roberts The Guardian,
The topic is "space", and George is making a giant alien flower out of shiny, coloured paper. A teaching assistant helps him to spread the glue with a spatula. Jacob is watching intently and with evident delight as a handful of coloured sequins trickles through his fingers. Other pupils are squeezing lumps of green playdough.
This is not a primary school classroom. The class 3 pupils at St Margaret's school in Tadworth, Surrey, are teenagers with profound and multiple learning difficulties (PMLD) as well as complex medical problems. Like all of the 33 residential and 11 day pupils at the school, which is part of the Children's Trust charity, they are operating at a cognitive level similar to a child of between three and 12 months. Nevertheless, they are achieving. At the end of each lesson, teachers carefully record their progress, such as using their hands, focusing on an object or indicating a preference with a facial expression or gaze.
The recent death of Conservative leader David Cameron's profoundly disabled son, Ivan, has thrown a spotlight on the needs and rights of children like these pupils. Cameron spoke movingly of his "wonderfully special" son, and it is clear that other parents of children with PMLD also feel their sons and daughters are special and just as deserving of the opportunity to develop to their full potential as any other child. And this is what St Margaret's aims to do. "It's about giving these children the skills to live life to the max, and be as much in control of their lives as they possibly can," says the head, Jan Cunningham.
The national curriculum does not encompass children operating at such a low cognitive level so, 11 years ago, St Margaret's set about creating its own curriculum. It takes a holistic approach and provides a 24-hour programme that integrates learning and therapy, and is tailored to each individual pupil. There is also a doctor and nursing team. The school was judged outstanding by a recent Ofsted inspection and its curriculum, which was published in 2006, is now being used in over 40 other special schools in the UK and abroad.
The school has soft play areas and hi-tech vibro-acoustic and multi-sensory rooms, which help to develop pupils' ability to interact with the world around them. One room has a screen that produces coloured patterns in response to sounds made by the children, and a dark room helps to develop eye-tracking as they follow coloured lights. "Many of the pupils have limited vision and movement, and we're constantly trying to find ways to address that, and help them to develop their self-awareness and awareness of others," says teacher Ros Howe. The children also enjoy hydrotherapy in the swimming pool, and many off-site activities such as horse-riding.
Due to medical advances that have prolonged life expectancy for some conditions, the number of children with PMLD is increasing. School census figures suggest there are currently around 9,000 in the UK. Not all are as fortunate as those at St Margaret's. For the majority, the only education option is a special school catering for a much wider range of abilities. Staff might only encounter small numbers of pupils with PMLD and so lack expertise in educating them.
The Camerons have spoken about how happy they were with the education Ivan received at his school, Jack Tizard in Hammersmith, west London, where he was taught in a small group of children with similar needs. However, the headteacher at Jack Tizard, Cathy Welsh, is clear about the challenges many special schools face. "In this country, initial teacher training doesn't really address PMLD, so we have to coach teachers ourselves," she says.
"In South Africa and Australia, PMLD training is the norm and we used to be able to take teachers from these countries without any problem. Now they have to requalify here, which takes time and money. Addressing this problem at source by providing initial teacher training pathways in severe learning difficulties and PMLD would really help us."
Mary Greenway had problems finding a school with the right expertise for her profoundly disabled child. Eventually, Harry was allotted a place at St Margaret's, but sadly died after two years at the school. However, Greenway was so impressed with the education he received there that she continues to support the school as chair of governors.
"The local special schools didn't have the experience to meet Harry's needs and it was only when outreach nurses started doing therapy with him that we realised that there could be some achievement, and we fought for a place at St Margaret's," she says. "He used to be in pain and would cry a lot, but the doctors there had the experience to sort out his medication so he was more comfortable and started to be able to access the curriculum. He became much more tactile - it was a tiny step, but it did improve his quality of life immeasurably. We need more places like St Margaret's. It has a positive, 'can do' approach."
At St Margaret's, the fabric of the school is provided by the Children's Trust but, as with other special schools, funding of places is down to the education authority, primary care trust or social services. Sometimes it is a combination of all three, which is complex and can lead to delays. Welsh believes there needs to be a more coherent system. "The high-quality education to which our pupils are entitled is very staff-intensive and requires continuous collaboration between lots of professionals. When children's services and primary care trusts work in partnership and put in the resources, children with PMLD really benefit," she says.
Educating profoundly disabled children is expensive. As well as one-to-one attention, they need equipment such as wheelchairs, standing frames and spinal jackets, which have to be changed as they grow. Cunningham estimates all this costs at least £165,000 a year.
Money well spent
But for parents, it is money well spent. Jake Foreman's daughter, Hattie, has the neurological disorder Rett syndrome, in which St Margaret's has particular expertise. "People with no experience of children with profound disabilities may wonder if it's all worth it," he says. "But, from a parent's point of view, anything that can be done to enhance her happiness and skills is very important.
"We couldn't provide all the things she does, such as the riding. She has a tremendous rapport with animals, responds to swimming and music, and all these things have been taken up by the school. She has really developed in some areas, such as being able to maintain eye contact."
Luckily for Hattie, who is now 15, St Margaret's is developing a service for students to stay on up to the age of 25. This means she can continue to benefit as she moves into adulthood. "The sad thing for most people with PMLD is that, when they get to 19, the funding stops and they get put into residential homes, which rarely embrace education," says Cunningham.
She believes there is an urgent need for more funding to combine education with wrap-around care. "The government needs to get behind residential special schools. You can't put these pupils in a mainstream setting without medical facilities. Residential is often the best way forward for children with PMLD."
Ellie Banks loves her food, but for the last decade she has had chronic acid reflux (severe heartburn) and has had to watch what she eats.
Pizza has been out, so have spicy foods and even wine.
"I haven't been able to eat so many things," said the press officer, from Stoke.
Then at the end of last year Ellie was given surgery called a laparoscopic fundoplication.
The operation involves wrapping a piece of the stomach around the oesophagus to create a new valve to prevent acid backing up from the stomach.
It used to be done by opening up the chest cavity, but with the advent of keyhole surgery it is now a lot safer.
“ My life was put on hold ” Ellie Banks
There have been calls for the operation to be more widely available.
Ellie says the operation has transformed her life.
"I could just not get to sleep and kept waking up all night in absolute agony," she said.
"If I had eaten pizza or had had wine or anything like that it would hurt like hell and I would bring the food up. It was really quite vile.
"I saw loads of different doctors for about 10 years until they actually sent me to see a specialist.
"They gave me some tablets, but said there was nothing they could do about it.
"Because I was quite skinny and it is usually larger people who get it, they did not think I had the same problem.
"I cut down my drinking and started eating more healthily, but it did not make any difference.
"I did not want to be dependent on the tablets and did not like putting them into my body every day."
But Ellie said things moved very quickly when she went to see her new GP.
"He sent me for tests and then they put a tube down my nose and every time I ate I had to press a button to measure the acid.
"They said the acid was horrendous and put me in for the operation
"It was completely life changing."
NHS research by the University of Aberdeen recently found good results following surgery.
A year after keyhole surgery, only 14% of patients were still taking medication, compared with 90% of those treated with drugs alone.
A painful and burning sensation in the oesophagus, just below the breastbone usually associated with regurgitation of gastric acid
It is a very common condition with 20% of the population experiencing it at some point in their lives
Those at the more severe end of the spectrum can end up taking tablets for the rest of their lives
A trial of 800 patients suggested that the surgery should now be done more routinely in patients with chronic acid reflux.
The results so far suggest the procedure, although expensive at £2,000 per patient, is cost-effective because reflux sufferers no longer have to take medication and their quality of life improves.
But the researches are continuing to follow the patients for five years to check the benefits are long-term.
Professor Roger Jones, head of general practice at King's College London and chair of the Primary Care Gastroenterology Society, said he had a number of patients contacting him recently and asking for the surgery, but he said some GPs still knew little about the technique.
"I think it does not always cross GPs' minds that hospitals are doing this," he said.
"But it is quite an important message to get out to GPs that patients who require long-term treatment with severe symptoms this is something that they ought to consider."
Story from BBC NEWS:
12 April 2009
For the past year and some odd months, there has been words forming in me. Almost like chapters and ideas, examples of things that need to be scribbled down. I have been holding off from writing anything, as far as manuscript worthy because I simply refuse to write something similar to something I’ve already written in the past.
And now it seems I’ve stumbled upon something new, (new to me) thought provoking, fusterating, confusing and something even that can make me very uncomfortable. I find myself at a very weird place in life, in all aspects. For the sake of honesty, I want to say that maybe, I have lost sight of who God is to me.
I’ve lost it. Or him. In the ramblings of pastors, christians, other perspectives and voices in the world. No I am not renouncing Jesus or the Bible, so please don’t wet your pants right away. We don’t need you to do that right now!
You know, we humans are so very small in this world, I think we forget how small we are. Christians believe in something called ”The Body of Christ”, which is another word for community, but how is this? Have we ever opened our eyes and seen how divided we are, amongst ourselves?
I mean honestly. In one corner we have Christians shouting: “God hates you!”
And in the other: “Peace bro, hang ten man, its all about love!” (That was my surfs up impression, great movie!)
And in another: “We are fifty times more right then you, and you shall burn in hell for your sins!” (Like that helps!?)
Oh, and one other, those people with their bull horns.. you probably need to find another way… seriously.
And there’s me. I feel like I’m in the cross fire of it all. I was telling someone the other day, the image/vision that pops into my head when I experience this. Its like myself and Jesus (The Jewish Rabbi, not rock star) are looking at each other face to face, and these crowds of Christians are shouting their agendas at me, and I’m not even sure what the truth is anymore. But I know in my heart, that I simply adore this Rabbi and teacher. And would gladly follow him. If only this chaos would stop.
So yes, what is forming inside is indeed a second book. And it will be the best thing I have ever written.
I love you all. Go in peace.
Every designer brings his life experience to his work. But few do it as well or incorporate as much as British kitchen specialist Johnny Grey.
Grey's unconventional kitchens are a radical departure from conventional American ones. They feature jazzy colors, original artwork, playful, custom cabinetry best described as "sculptural" and work areas that are carefully tailored to a client's measurements. He developed his style after becoming seriously ill early in his career, he said in a recent interview.
When he was 28, Grey contracted mononucleosis. The disease dogged him for 10 years, causing continuous, debilitating fatigue. After two years he was able to work part time, but he remained exhausted and had constant back pain. Hoping to lessen the pain and build enough stamina to get through the day, Grey began to study the Alexander Technique, an approach to body movement developed more than 100 years ago by an Australian Shakespearean actor named Frederick Alexander to help him overcome stage fright.
The Alexander Technique teaches you to rethink the way you perform everyday tasks so that you do them more efficiently with far less energy, Grey said. The process also helps to reduce muscle tension, often the source of pain.
In describing how the technique helped him, Grey said that most of us waste far more body energy than we think. For example, he recalled that when he pantomimed brushing his teeth in a class, "My teacher showed me that I was using my entire body, but I only needed to use my wrist."
Grey began to rethink the way he prepared food. Zeroing in on even the smallest gestures, he realized that most of the body motions involved in cooking were limited to his forearms and hands. In ergonomic terms, the critical dimension for determining the height of work surfaces was not body height, as he had always thought, but the distance from the floor to the underside of the chef's elbow when it is bent at a right angle. He refers to this distance as the "flexed elbow."
The most demanding task in the kitchen is knifework -- the chopping, slicing and dicing. It requires a rapid up and down forearm motion. You can do this most efficiently when the counter height is three to four inches below your flexed elbow, Grey said.
Standing over a cooktop, you make a different motion -- stirring or turning with a tool that has a long handle. For this you'll be more comfortable if the cooktop is about five to six inches below your flexed elbow.
For bread or pastry making, you need to get your weight over the rolling pin or the dough you're kneading. For these, the counter should be eight inches below your flexed elbow.
For washing up, Grey said, the actual work surface is the sink bottom, which should be eight to 11 inches below your flexed elbow, while the counter height to either side of the sink need only be two inches below it.
When designing a kitchen, Grey varies counter heights according to the task to be performed at each. But, he said, the flexed elbow measurements are meant to be guidelines, not written in stone. Practicality dictates some flexibility in determining counter heights so different people can work in the same kitchen. But when the height difference between cooks approaches 12 inches, Grey designs the kitchen for the person who does most of the cooking, and adds a second food prep counter to accommodate the other person.
While getting the height of the food preparation area right prevents muscle strain, getting the cooktop height right has other benefits, Grey said. When it is lower, hot oil is less likely to splash in a shorter person's face.
In recent years many American kitchen designers have recommended raising the dishwasher so that a tall person or someone in a wheelchair can use it more easily. Grey concluded that keeping this appliance low made the task of loading and unloading a dishwasher more difficult for everyone, and he likes to raise it 10 to 14 inches.
Grey's experience with the Alexander Technique led him to study how body movement is affected by peripheral vision, which, surprisingly, turns out to be another source of muscle tension. When your eyes sense sharp corners on the edge of your path, they activate a stress response to ensure that you avoid hitting anything. This makes you more tense.
To counteract this and make the time spent in the kitchen more relaxing, Grey developed what he calls "soft geometry." His counters have round edges; his islands and the cabinetry below them are circular or elliptically shaped, while the counters and cabinetry opposite them are often concave. He also likes free-standing, floor-to-ceiling cylinder-shaped cabinets for storing large pots and pans. All these unusual shapes make the space feel more playful, which is also relaxing.
The unusual shapes would seem to require a bigger area for a kitchen, but Grey said the opposite is true. With a concave-shaped kitchen, you can get more cabinets and appliances into a smaller space, while freeing up more floor area so that two or more people can work at the same time.
Zeroing in on specifics, Grey said he vastly prefers end-grain butcher block for a food prep area because the wood is so dense it won't dull knife blades, it won't be scarred by chopping, and it's easy to keep clean. The actual size of a food prep area should be small, only about 18 to 24 inches wide with space on either side for pots or bowls. Grey likes a generously sized island, but he divides it into separate task areas, each with a different height.
American kitchen designers tend to box up everything behind closed cabinet doors, but Grey prefers open storage adjacent to the place where an item is used. He maintains this is more convenient, eliminates unnecessary movement and makes the space feel lived in. He puts plate racks above the dishwasher, open racks below a cooktop for large pots and hooks above it for cooking utensils or smaller pots.
For more information on Johnny Grey and his kitchens, see his book "Kitchen Culture: Reinventing Kitchen Design" (Firefly, 2004).
Katherine Salant can be contacted via her Web site, www.katherinesalant.com.
11 April 2009
05 April 2009
DESPITE a lifelong struggle with cerebral palsy, Daniel Johns’ positive attitude brings happiness to all who meet him.
Even after enduring two nine-hour operations within months of each other, Daniel pulled through with a grin on his face.
His constant cheerfulness has earned the 16-year-old admiration from friends and colleagues at Kilton Thorpe Special School, in Brotton.
And he has now been recognised for the joy he inspires with the Princess Diana Award for overcoming adversity.
Daniel lives in Loftus with his mum Lynn, 43, dad Peter, a Sky engineer, also 43, sister Lacey, 13, and brothers Mitchell, 13, and Louie, four.
Lynn said: “We were over the moon when we heard. His school put him in for it and it was written in his book when he came home that he was going to receive it. I rang all my friends and family!”
Daniel was born 24 weeks early and suffered bleeding in his brain, and had to fight for his life.
“He was born so early we always thought there might be a chance he would have cerebral palsy because he had bled. He fought so hard to live we weren’t bothered what he was like and it wasn’t a shock to us,” said Lynn.
Daniel was registered as blind from an early age and the Johns family have had to make adaptations to their house to make room for his wheelchair.
As Daniel got older he started to develop scoliosis in his upper body and doctors needed to operate to repair it.
“He had slight curvature in his spine for a while,” said Lynn.
“We always knew it was there from him being young but over time it was getting worse. It got to the point where he was in so much discomfort he had to lie down.
“The specialist said he had to have a major operation because if he didn’t, over time he would just curl up that much all his organs would squash.”
He had a nine-hour operation in January 2007, but had to go back for a second in the following April.
“It was horrendous,” said Lynn. “It was such a long operation and in the second he got an infection.
“He has recuperated quite well, amazingly - we don’t know how, after everything they did to him.
“He is so much better, but now they want to do his hip, because it is dislocated. His upper body is straight but he is sweeping to one side.”
Lynn added: Daniel has such a lovely personality, he can’t speak, but he smiles and everybody who meets him thinks they don’t have it bad at all.
“He doesn’t understand that he has won the Princess Diana Award and that’s a crying shame.”
Teacher Suzanne Laver, who nominated Daniel, said: “He is the most happy and content young man, he brings joy into everybody’s life, he is no bother at all.”
Daniel received his award, in front of his family and friends, from Mike Dillon, the director of adult and children’s services for Redcar and Cleveland, during a special assembly on Friday.