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Cerebral Palsy

Cerebral palsy is the name for a group of lifelong conditions that affect movement and co-ordination, caused by a problem with the brain that occurs before, during or soon after birth.

Symptoms of cerebral palsy

The symptoms of cerebral palsy aren’t usually obvious just after a baby is born. They normally become noticeable during the first two or three years of a child’s life.

Symptoms can include:

  • delays in reaching development milestones – for example, not sitting by eight months or not walking by 18 months
  • seeming too stiff or too floppy
  • weak arms or legs
  • fidgety, jerky or clumsy movements
  • random, uncontrolled movements
  • walking on tip-toes
  • a range of other problems – such as swallowing difficulties, speaking problems, vision problems and learning disabilities

The severity of symptoms can vary significantly. Some people only have minor problems, while others may be severely disabled.

Causes of cerebral palsy

Cerebral palsy can occur if a baby’s brain doesn’t develop normally while in the womb, or is damaged during or soon after birth.

Causes of cerebral palsy include:

  • bleeding in the baby’s brain or reduced blood and oxygen supply to their brain
  • an infection caught by the mother during pregnancy
  • the brain temporarily not getting enough oxygen (asphyxiation) during a difficult birth
  • meningitis
  • a serious head injury

But in many cases, the exact cause isn’t clear. 

Treatments for cerebral palsy

There’s currently no cure for cerebral palsy, but treatments are available to help people with the condition be as active and independent as possible.

Treatments include:

  • physiotherapy – techniques such as exercise and stretching to help maintain physical ability and hopefully improve movement problems
  • speech therapy to help with speech and communication, and swallowing difficulties
  • occupational therapy – where a therapist identifies problems that you or your child have carrying out everyday tasks, and suggests ways to make these easier
  • medication for muscle stiffness and other difficulties
  • in some cases, surgery to treat movement or growth problems

A team of healthcare professionals will work with you to come up with a treatment plan that meets your or your child’s needs

Outlook for cerebral palsy

Cerebral palsy affects each person differently and it may be very difficult to predict what the outlook will be for you or your child.

Generally speaking:

  • most children live into adult life and some can live for many decades
  • the condition may limit your child’s activities and independence, although many people go on to have full, independent lives
  • many children go to a mainstream school, but some may have special educational needs and benefit from attending a special school
  • the original problem with the brain doesn’t get worse over time, but the condition can put a lot of strain on the body and cause problems such as painful joints in later life
  • the daily challenges of living with cerebral palsy can be difficult to cope with, which can lead to problems such as depression in some people

Speak to your care team about the likely effects of cerebral palsy on you or your child. If you require a specialist pushchair, talk to one of our advisors about the options available and charity funding. Call our Helpline on 01670 458624

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Down’s Syndrome

Down’s syndrome, also known as Down syndrome, is a genetic condition that typically causes some level of learning disability and characteristic physical features.

Around 775 babies are born with the condition each year in England and Wales.

Many babies born with Down’s syndrome are diagnosed with the condition after birth and are likely to have:

  • reduced muscle tone leading to floppiness (hypotonia)
  • eyes that slant upwards and outwards
  • a small mouth with a protruding tongue
  • a flat back of the head
  • below-average weight and length at birth

Although children with Down’s syndrome share some common physical characteristics, they do not all look the same. A child with Down’s syndrome will look more like their mother, father or other family members than other children with the syndrome.

People with Down’s syndrome also vary in personality and ability. Everyone born with Down’s syndrome will have a degree of learning disability, but the level of disability will be different for each individual.

What causes Down’s syndrome?

Down’s syndrome is caused by the presence of an extra copy of chromosome 21 in a baby’s cells.

In the vast majority of cases, this isn’t inherited and is simply the result of a one-off genetic mistake in the sperm or egg.

There is a small chance of having a child with Down’s syndrome with every pregnancy, but the likelihood increases with the age of the mother. For example, a woman who is 20 has about a 1 in 1,500 chance of having a baby with the condition, while a woman who is 40 has a 1 in 100 chance.

There is no evidence that anything done before or during pregnancy increases or decreases the chance of having a child with Down’s syndrome.

Life with Down’s syndrome

Although there is no “cure” for Down’s syndrome, there are ways to help children with the condition develop into healthy and fulfilled individuals who are able to achieve the level of independence right for them. This includes:

  • access to good healthcare, including a range of different specialists
  • early intervention programmes to provide support for children and parents
  • good parenting skills and an ordinary family life
  • education and support groups to provide information and help for parents, friends and families

Improved education and support has led to more opportunities for people with Down’s syndrome. These include being able to leave home, form new relationships, gain employment and lead largely independent lives.

However, it is important to remember each child is different and it is not possible to predict how individuals will develop.e

Associated health conditions

There are a number of disorders that are more common in people with Down’s syndrome. These include:

  • hearing and vision problems
  • heart disorders, such as congenital heart disease
  • thyroid problems, such as an underactive thyroid gland (hypothyroidism)
  • recurrent infections, such as pneumonia

Delayed development

All children with Down’s syndrome have some degree of learning disability and delayed development, but this varies widely between individual children.

Children with the condition may be slower to learn skills such as:

  • reaching
  • sitting
  • standing
  • walking
  • talking

A child with Down’s syndrome will gain these skills eventually – it simply takes more time.

Around 1 in every 10 children also experience additional difficulties such as autism spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD).

Our support

If you have a child with Down’s syndrome and they require a specialist pushchair, perhaps if they an older child and need a larger buggy or if they have challenging behaviour or no sense of danger and need this to keep them safe when out and about – please contact us as we may be able to help you.

Freedom for Kids Helpline: 01670 458624

Email: info@freedomforkids.co.uk

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Urgent Action Needed To End Equipment Crisis

A disabled children’s charity published a damning report today exposing major and unlawful failings surrounding the provision of specialist equipment to some of the UK’s most vulnerable children. 

Newlife the Charity for Disabled Children is urgently calling on the government to help those children whose lives are at risk because they don’t have the specialist equipment they need. 

In its report, Equipment Crisis for Disabled Children, launched today at the House of Commons, the charity highlights why children are being deprived of specialist equipment like walking frames, specialist car seats and beds, and has published a practical four-point-plan to fix it.  

“All children have the right to be safe and free from pain, they have a right to learn and a right to reach their potential regardless of diagnosis or disability,” explains Mrs Sheila Brown, OBE, Newlife CEO, and mum to two disabled children herself. 

“But every single day severely disabled and terminally ill children are denied their fundamental rights because existing policies preclude them, or decisions are made based on frugality rather than health and necessity.  The result is children are left to suffer in pain, their safety compromised, isolated from the world.” 

83% of local authorities apply unlawful ‘blanket bans’ that restrict equipment 

The use of blanket bans by local statutory services is widespread and challengeable in law.  This is one of the points Newlife is calling for action on.  Often used as a way to ration shrinking budgets, a blanket ban means local authorities refuse to provide a particular piece of equipment ‘under any circumstances’. Each authority has its own criteria for applying these bans for example; no wheelchair assessments for under threes and no walking frames for a child who will never walk independently. However, by far the most common is the blanket refusal to fund specialist, protective car seats for disabled children, irrespective of whether there is a medical need for one with 83% of local authorities applying such a ban.   

89% of children MISSING from disability registers 

Eight percent of children in the UK have a disability – just over 1.1 million children in all.  The Children’s Act 1989 requires all local authorities in England ‘establish and maintain’ a register of children with a disability in their area.   However, data exclusively obtained by Newlife shows less than 11% of children are included on local disability registers.  

Sheila continues: “Knowing the true number of disabled children in need is crucial. If only 11% are visible to public authorities, it’s impossible to budget and plan resources and services effectively in order to meet the need.  This also explains why local health and social care services are drastically failing to provide the care, support and equipment they need.”  

Medical improvements mean children born with conditions or who develop disabilities because of illness or accidents are surviving but with very complex needs requiring intensive support and in most cases multiple pieces of specialist equipment.  

Despite demand for equipment reaching critical levels, a quarter of local statutory services cut spending during 2016/17

Sheila continues: “There’s lots of complex reasons why children are being failed.  The law protects their rights to live safely, to have the opportunity to learn and to reach their potential, whatever that may be. 

“This matters to every family, cancers, accidents, birth defects and infections.  These risks are with us every day.  No-one thinks it will happen to them.  I didn’t, but that’s the reality.

“We believe that if the government ‘fixes’ the four big issues highlighted here, then hundreds of thousands of our children will benefit.”

NEWLIFE’S FOUR-POINT-PLAN

We are calling on national and individual local statutory services to work with us to put in place our four-point-plan which will change hundreds of thousands of children’s lives:

FIX ONE: Cease the use of blanket bans for rationing equipment

Blanket bans are commonly used as a way to manage budget constraints.  Essential equipment is denied ‘under any circumstances’, this is arbitrary and fails to respond to their assessed needs.  

FIX TWO: Establish and emergency equipment response service 

Children in crisis cannot get equipment quickly enough.  Local statutory services don’t have an effective emergency equipment response service for children in urgent need.  This needs fixing to prevent injury, to allow hospital discharge and to relieve pain. 

FIX THREE: Introduce maximum waiting times for equipment assessments across health and social care

Waiting times for assessments for essential equipment are not capped, and there are widespread lengthy delays – families can wait months, sometimes years before their child is prescribed the equipment they need.  This leaves disabled children living in pain or at risk of injury and their families in constant anxiety.  They simply can’t wait. 

FIX FOUR: Ensure every disabled child is counted

Disability registers are failing.  Without an accurate measure, health and social care services cannot budget to meet the need.  Local authorities must put in place an accurate way to measure the number of disabled children to ensure that no child is invisible.  

www.newlifecharity.co.uk
November 27, 2018

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Charitable Funding Advice on Special Needs Pushchairs for Disabled Children

Every day I get asked Can you help me? I don’t know what to do as my disabled child needs a buggy and the NHS can’t help / won’t fund it / have offered me something that doesn’t meet our needs…I have two children and need a double buggy….I can’t afford a pushchair….HELP, I don’t know where to turn!

The good news is that in the vast majority of cases WE CAN HELP. You may need a single stroller or double special needs buggy, you may have one or two disabled children and/or siblings, you may even have a baby on the way and an older disabled child who’s got way too big, tall or heavy and now outgrown their standard buggy. You may even have a young child with a condition and need to carry medical equipment. Whatever your needs are, we are a friendly team who want to help and we do this by talking to you about your specific requirements for your disabled child / children AND your needs as a family unit.

Whatever disability your child or children have, I’m sure we can help you find a suitable pushchair for them. We have helped families who have children with Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), Cerebral Palsy, Downs Syndrome, Global Developmental Delay (GDD), Sensory Processing Disorder, Behavioural conditions, Genetic disorders, Chromosome abnormalities, Heart defects, Hypermobility and many other life-limiting or terminal conditions. Whether you’re a parent of a disabled child, a foster carer or have adopted disabled children, please get in touch and we will endeavour to do our very best for you and your family.

Don’t worry – we will guide you through what paediatric and mobility equipment is available for your children whether it’s a basic stroller, a 4-wheeled pushchair, a 3-wheeler all-terrain buggy or a tilt-in-space pushchair and if you need a single or double buggy, we can advise on options for a second child. We understand that often parents don’t want a medical-looking pushchair and we have buggies that won’t shout ‘I’m a disabled child’. We will do our best to find you the most appropriate pushchair for your disabled child and one that will allow you to get out and about with ALL your family.

Sometimes we have to be creative and this is where our experience comes in handy, we know what’s out there on the market, AND what’s not! We have been able to help thousands of parents over the years and whilst there has never been a wide choice for pushchairs for disabled children, there are some really good buggies for children from 2 years upwards and we even have super large pushchairs for teenagers and young adults. If you have two or three children to transport then this is where our knowledge and experience is invaluable as we have been able to accommodate most circumstances and provide a practical pushchair option to families who have been struggling to get and about with their children.

You can find all our pushchairs suitable for disabled children under our Special Needs department. Here you will find single pushchairs and double buggies and should you need extra seats or an option for another child, then we have other options that we can talk you through. Our most popular options are the Joggster Twist, which now has a new 2nd seat called the Shuttle, the Special Tomato Jogger is a great option for the taller child, and the Special Tomato EIO can be turned into a double buggy by adding a Buggypod side seat (or a rear Perle seat). For larger children, teenagers and adults we have the Axiom Endeavour, which is a super-big all-terrain pushchair and if you have two disabled children to transport, there is the ultimate customised double pushchair – the Axiom Endeavour Double is two single pushchair that lock together to make a double and then release to go back to 2 singles…how nifty is that! We’ve also recently developed specialist Flexi-Connect Buggy Connectors that allow you to join two larger specialist pushchairs together, so you can use them as singles or a ‘double’ – these are a world first and an innovative new product that will help families get out and about.

We will also help by taking you through the process by which you can apply for funding for your children’s mobility equipment and we have included a list of some of the organisations that could possibly help you fund pushchairs or other equipment for your disabled child. This list is mainly by condition with some general national charities at the end. It is not exhaustive and there are many other charities as well as local or regional organisations that may help you.

And help can come in many forms e.g. St Austell’s Brewery in Cornwall, Champney’s Hotels and even Radio Stations have funded special needs buggies – so don’t just think about those charities you may have heard of…ask around, look in the local paper, communicate with others on general special needs or condition-related forums, use social media (there are lots of support groups on Facebook) and Google to seek out anyone who may be able to help you. We find that local organisations are very willing to fund equipment to help local people and they are generally quicker to make a decision!! We are fortunate to have worked with many fantastic local, regional and National charities and are grateful for all buggies they have funded which has helped to improve the lives of thousands of families.

We also provide advice and equipment to some of the UK’s largest charities like Newlife Charity for Disabled Children, Whizz–Kidz and Caudwell Children as well many NHS Wheelchair Services, Primary Care Trusts, Family Support Workers, Occupational Health Therapists and many other people who may be involved with assessing and/or advising parents and carers of disabled children. Outside the home, we have also provided Special Schools with single and double buggies for children with a wide range of disabilities and different ages, allowing them to take more children out and take part in activities which they may not have been able to before. If you are a SENCO and know anyone we can help, please contact us for more information.

If you are waiting for a referral to NHS Wheelchair Services or have been turned down for a pushchair, then please get in touch as we can often help you apply for funding and supply a pushchair. We have found many parents spend a long time waiting to see wheelchair services only to find that they are not eligible for a pushchair or that the NHS are unable to supply an appropriate buggy, particularly when you have two children. We can help you as we have a range of options for two children, and have even managed to help families with 3 or more children too.

If you have children under 3 years old, you may not even get referred as they don’t generally see children before this age. However, your child may have special needs, or have a medical condition that requires them to be in a different type of pushchair, perhaps for medical needs you need a parent facing pushchair so you can monitor them closely, or perhaps you need to carry medical equipment alongside your child. It may even be that your child may be very big for their age and have outgrown their buggy and need something more robust. Either way, when the NHS cannot help, we probably can, so please give us a call on our helpline. We’re here to help you get the support you need.

When applying for funding you will need to provide evidence of your child/children’s disability, information on your family circumstances and in some cases, family finances. For evidence supporting your application, ask for a report/letter from health professionals like your child’s Occupational Therapist (OT), Physiotherapist, Health Visitor or even their GP. You can also ask a Social Worker, Family Support Worker or SENCO for a supporting reference. Your OT / Wheelchair Service may be able to advise you on the most appropriate condition-specific charity. We have lists of charities in our Rersource Centre, the majority may be able to provide funding even if you do not have a specific condition. If you would like more help and advice on either who can support your application or which charity to apply to then please call our helpline on 01670 458624 and we will be happy to help.

We hope this gives you some help and guidance in your search, however please CALL US for more advice and support – we have many years of experience in the special needs community and we are here to help you and your family.

Our Helpline Number is 01670 458624 or Email us at: info@freedomforkids.co.uk

You can find specialist mobility equipment including buggies, postural supports and seating aids and pushchair accessories in our Products department.

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Twins & Autism Spectrum Disorder (ASD)

Twins and Autism Spectrum Disorders – here, we share some results of studies of twins and the incidence of autism.

Two studies, one in the United States (done by David Greenberg, a geneticist at Columbia University in New York) and other in Britain (done by Christopher Gillberg of St George Hospital Medical School in London), found a higher rate of autism among twins.
 
The rate of autism in identical twins was 12 to 14 times that of the general population, and the rate of autism in fraternal twins was about 4 times higher than the general population. Another study presented at a conference in Boston in 2005 postulated that birth month greatly affects the chances of twins suffering from autism with twins born in January having an 80% higher chance of developing the disorder than twins born in December.

 

While this information may seem scary at first, it is important to note two things: most of these studies relied on small samples groups, which may not provide the most reliable information. Also, the Columbia study limited itself to twins with siblings with autism, which has been identified as a risk factor for developing the disorder, and may have skewed the results.

 
Finally, most twins will not suffer from autistic disorders, and even if one twin does develop autism, there is no guarantee that the other will develop it as well (even amongst identical twins). One mother of twins kept a daily diary on her fraternal twins development; through this diary, one can see signs of autism in one of the twins dating from six months of age. Now twelve years old, one twin is autistic, and the other is unaffected. However, the mothers documentation of the twins development opened the eyes of researchers and parents as to the pervasiveness of this disorder, and the possibility that it can be identified much earlier than previously thought.

 

For years, scientists, parents, and doctors have debated the causes of autism. At first, twin studies seemed to point to a genetic cause for the disease; however, the increased risk amongst fraternal twins (though not as high as that of identicals) seems to indicate that perhaps something about being a twin could also be a factor. This means that environmental factors in the womb, placental development, or even the experience of being raised with a same-age sibling could have some triggering effect for autism.

Some authorities estimate that the incidence of autistic disorders has increased over 172% since 1990. Others argue that the incidence of autism has remained static, but our ability to identify and assist autistic children has improved. 

For more information on the studies cited in this article, and to access information on having twins assessed for autism, see the links below (Please copy and paste these into your browser):
Excess of Twins among Affected Sibling Pairs with Autism: Implications for the Etiology of Autism David A. Greenberg, Susan E. Hodge, Janice Sowinski, and Doug Nicoll from The American Journal of Human Genetics
http://www.journals.uchicago.eduJHG/journal/issues/v69n5/013031/013031.html

Increased Rate of Twins among Affected Sibling Pairs with Autism
Catalina Betancur, Marion Leboyer, and Christopher Gillberg
from The American Journal of Human Genetics
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=447617

AWARES article on Boston Autism Conference
http://www.awares.org/pkgs/news/news.asp?showItemID=546&;board=&;bbcode=&;profileCode=ion=

Smile for the Cameraand for science (article about mom who kept twin diary) from the age.com.au

http://www.theage.com.au/articles/2005/03/19/1111086056480.html

Warning Signs and Symptoms of Autism and Pervasive Developmental Disorder (PDD) from Autismwebhttp://www.autismweb.com/signs.htm

(Please copy and paste these links into your browser to view):