By Natan Gendelman D.O.M.P | http://www.healthinmotionrehab.com | http://www.enabledkids.ca
Traveling can be a great opportunity to learn about and experience
new things together with your child. When the process goes smoothly, it
is also a good way to develop closer ties among family and friends.
However, this process can also be challenging, especially when traveling
with a child that has special needs. Many of the patients and families I
treat from overseas have experienced issues with arranging
transportation, finding the right food and booking the right
accommodations. All of these items need to be arranged well in advance
in order for the whole process to run smoothly. As a result, I would
like to cover a few things to keep in mind when you’re preparing to
travel with your child. Hopefully this will aid you in plans for your
own trip with your child, and also generate a discussion about what
you’d like to share and learn more about in regards to traveling and
accessibility.
Food in foreign countries
Now whether or not a child or adult has special needs, what a person
eats can have a huge impact on their health, behaviour and cognitive
function. When traveling, this becomes even more important as food
sensitivities, allergies and intolerances can all pose risks during your
child’s mealtime. As a result, it is important to pay attention to what
you and your child are eating, and to ask questions about ingredients
and preparation wherever you go. Since the regulations regarding food
production change from country to country, even foods which are familiar
to you and your family may be grown, produced and processed according
to different standards.
For this reason, offer your child items that are light and easy to
digest such as plenty of fresh (preferably organic) fruits and
vegetables throughout the first few days of your trip. As well, certain
foods may contain different ingredients than your child is used to, such
as dyes or preservatives. As always, read the labels on the products
you buy and eat, and try not to switch drastically from the kinds of
foods your child is used to eating.
Accessibility Challenges
Another aspect of travel that you will need to consider is
accessibility, especially if your child uses a wheelchair or other
specialized equipment on a regular basis. Many countries have facilities
that are said to be accessible, but this may be different from what you
actually encounter while you are there. Last year when I visited Cuba, I
found it very hard to watch an elderly couple struggle to climb a steep
flight of stairs, as the plane they were trying to board didn’t have
any other means of access. Thinking about what a person using a walker
or wheelchair might encounter, it is extremely important to check with
your travel agent whether the place you are going will meet your child’s
accommodation needs, including facilitating ramps, elevators and a
roll-in shower.
Of course, when you decide to go on a trip with your child, it is
important to speak with him and help him understand where you all will
be going, and what for. There are some great articles by about.com and
Friendship Circle I’ve linked to below that give great tips on ways to
prepare your child for traveling. By getting him used to the idea of
going on the trip ahead of time, you can reduce any anxiety he may have,
and prevent him from becoming overwhelmed and overexcited by the
experience. I think that is an important step towards a fun and
successful travelling experience.
If you have any questions, comments or experiences to share about
what worked and didn’t work for you, leave me a comment down below or join our forum discussion. Thanks everyone!
For more information:
http://specialchildren.about.com/od/travelwithspecialneeds/Travel_with_Children_with_Special_Needs.htm
Some great articles from Friendship Circle’s blog about things to prepare:
http://blog.friendshipcircle.org/2012/01/09/a-special-needs-pre-flight-checklist/
http://blog.friendshipcircle.org/2012/03/05/packing-for-the-plane-your-complete-special-needs-checklist/
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts
22 March 2012
27 March 2010
Stretching the Mind and Body: The Benefits of Yoga for Children with Special Needs
NEW YORK, March 25, 2010 — In 2007, when Kami Evans’ daughter was diagnosed with hemi paresis, which is a mild case of cerebral palsy, she wondered: What can she do to help her? How active should she be? And how can she not be overprotective of her, especially when she goes off to school?
“The answer seemed to be involving my daughter in as many activities as I could. As a result, she was signed up for swimming, gym and music classes all by her first birthday. My daughter also had eight hours of physical and occupational therapy each week,” said Mrs. Evans.
As many doctors have stated to Mr. and Mrs. Evans, “The brain is so plastic.” Mrs. Evans continued, “And how active we remained with her treatment before she turned 24 months would impact how successful her recovery would be. We were on a mission.”
Then they found yoga. When a class with a few participants got cancelled, they hired the instructor to lead the lessons out of their home. At 15 months, she started to crawl by incorporating the rocking table and downward dog poses in her movements. At 20 months, she progressed to trying poses such as mountain, squats and elevator. Every day she would get the movements more and more.
Mr. and Mrs. Evans saw such a difference in their daughter’s development that they asked the instructor to come over three times per week. Meanwhile, they continued to take her to her usual classes and have her weekly eight hours of therapy sessions. But the yoga instruction was unique in that it was playful and enjoyable for her, prompting her to consider her time with the instructor as a play date.
When the instructor chose to pursue other interests, it encouraged Mrs. Evans to become certified. She first took a teacher training course at a Manhattan studio for children’s yoga, followed by training and certification working with children with special needs.
“Not only did I learn more about her yoga practice and how it enabled her to become increasingly aware of her body and personal space, but I was able to share this with other families as well. Inspired by this journey, I opened a yoga studio for children in Manhattan. This led me to share the benefits of yoga for children in more locations throughout New York City,” said Mrs. Evans.
Contact:
Kami Evans
Elahi Children’s Yoga
130 East 65th Street
New York, NY 10065
http://www.elahiyoga.com
212-249-0607
“The answer seemed to be involving my daughter in as many activities as I could. As a result, she was signed up for swimming, gym and music classes all by her first birthday. My daughter also had eight hours of physical and occupational therapy each week,” said Mrs. Evans.
As many doctors have stated to Mr. and Mrs. Evans, “The brain is so plastic.” Mrs. Evans continued, “And how active we remained with her treatment before she turned 24 months would impact how successful her recovery would be. We were on a mission.”
Then they found yoga. When a class with a few participants got cancelled, they hired the instructor to lead the lessons out of their home. At 15 months, she started to crawl by incorporating the rocking table and downward dog poses in her movements. At 20 months, she progressed to trying poses such as mountain, squats and elevator. Every day she would get the movements more and more.
Mr. and Mrs. Evans saw such a difference in their daughter’s development that they asked the instructor to come over three times per week. Meanwhile, they continued to take her to her usual classes and have her weekly eight hours of therapy sessions. But the yoga instruction was unique in that it was playful and enjoyable for her, prompting her to consider her time with the instructor as a play date.
When the instructor chose to pursue other interests, it encouraged Mrs. Evans to become certified. She first took a teacher training course at a Manhattan studio for children’s yoga, followed by training and certification working with children with special needs.
“Not only did I learn more about her yoga practice and how it enabled her to become increasingly aware of her body and personal space, but I was able to share this with other families as well. Inspired by this journey, I opened a yoga studio for children in Manhattan. This led me to share the benefits of yoga for children in more locations throughout New York City,” said Mrs. Evans.
Contact:
Kami Evans
Elahi Children’s Yoga
130 East 65th Street
New York, NY 10065
http://www.elahiyoga.com
212-249-0607
17 November 2009
Wrap Up a Wish: Hopes for greater mobility
Published online on Monday, Nov. 16, 2009
By Ron Orozco / The Fresno Bee
About the series
The wish: Criselda Ruiz wishes for an EasyStand Magician chair. Cost: $2,236
How to help: For the 17th year, The Fresno Bee, in partnership with the United Ways of Fresno, Tulare and Madera counties, is publishing Wrap Up a Wish, a series of stories about families, individuals and organizations with special needs -- and inviting readers to help with cash contributions. It's The Bee's hope that you, after reading these stories, will help make your neighbors' wishes come true. Just use a coupon that will appear inside The Bee through Dec. 10 to designate the recipient of your donation. On Christmas Eve, we'll follow up with a report on your response to Wrap Up a Wish.
Criselda Ruiz is the mother of seven children, including two sets of twins. She says she loves all her children the same but devotes quite a bit of attention to Janessa, 7. Janessa has cerebral palsy. All the other children, ages 2 to 13, are healthy, including Janessa's twin, Jonathan.
At 6 months old, Janessa began hemorrhaging. Doctors diagnosed her with cerebral palsy, a disorder resulting from damage to the brain that can affect coordination and muscle movement.
She wears leg braces and can't walk. She speaks just a handful of words, including "agua."
"I still love her either way," Ruiz says, tears welling in her eyes. "She's my special kid." The doctors told Ruiz that Janessa needed to sit up on her own by age 5. Otherwise, it may be harder for her to eventually walk on her own.
Sitting up hasn't happened yet -- and that concerns Ruiz.
Doctors believe an EasyStand Magician, a system that helps support a child in sitting and standing positions and can be easily moved, could help the girl. The device costs more that $2,000.
Ruiz's income is limited to $486 she receives monthly from Fresno County to care for Janessa. She lives in government-subsidized housing and receives food stamps.
"It's hard every month," says Ruiz, who has been separated from her husband for six months. "After all the bills are paid, there's a little left."
Janessa previously attended Storey Elementary School, which offered therapy programs suited for her. For a while, she needed the help of oxygen tanks. She now is in the second grade at Lane Elementary School.
Ruiz says Janessa is constant with her smile. "She is always happy," Ruiz says, adding that she is hopeful that Janessa will be able to walk.
"I pray for her all the time."
The reporter can be reached at rorozco@fresnobee.com or (559) 441-6304.
By Ron Orozco / The Fresno Bee
About the series
The wish: Criselda Ruiz wishes for an EasyStand Magician chair. Cost: $2,236
How to help: For the 17th year, The Fresno Bee, in partnership with the United Ways of Fresno, Tulare and Madera counties, is publishing Wrap Up a Wish, a series of stories about families, individuals and organizations with special needs -- and inviting readers to help with cash contributions. It's The Bee's hope that you, after reading these stories, will help make your neighbors' wishes come true. Just use a coupon that will appear inside The Bee through Dec. 10 to designate the recipient of your donation. On Christmas Eve, we'll follow up with a report on your response to Wrap Up a Wish.
Criselda Ruiz is the mother of seven children, including two sets of twins. She says she loves all her children the same but devotes quite a bit of attention to Janessa, 7. Janessa has cerebral palsy. All the other children, ages 2 to 13, are healthy, including Janessa's twin, Jonathan.
At 6 months old, Janessa began hemorrhaging. Doctors diagnosed her with cerebral palsy, a disorder resulting from damage to the brain that can affect coordination and muscle movement.
She wears leg braces and can't walk. She speaks just a handful of words, including "agua."
"I still love her either way," Ruiz says, tears welling in her eyes. "She's my special kid." The doctors told Ruiz that Janessa needed to sit up on her own by age 5. Otherwise, it may be harder for her to eventually walk on her own.
Sitting up hasn't happened yet -- and that concerns Ruiz.
Doctors believe an EasyStand Magician, a system that helps support a child in sitting and standing positions and can be easily moved, could help the girl. The device costs more that $2,000.
Ruiz's income is limited to $486 she receives monthly from Fresno County to care for Janessa. She lives in government-subsidized housing and receives food stamps.
"It's hard every month," says Ruiz, who has been separated from her husband for six months. "After all the bills are paid, there's a little left."
Janessa previously attended Storey Elementary School, which offered therapy programs suited for her. For a while, she needed the help of oxygen tanks. She now is in the second grade at Lane Elementary School.
Ruiz says Janessa is constant with her smile. "She is always happy," Ruiz says, adding that she is hopeful that Janessa will be able to walk.
"I pray for her all the time."
The reporter can be reached at rorozco@fresnobee.com or (559) 441-6304.
23 August 2009
Anat Baniel Method(R) Transforms the Lives of Children with Special Needs
Anat Baniel Method(R) Transforms the Lives of Children with Special Needs - Anat Baniel to Lead One-day Workshop for Parents and Practitioners
Parents of and professionals working with children with special needs are invited to attend a one day intensive workshop led by Anat Baniel, founder of the Anat Baniel Method and learn cutting edge, scientifically based techniques that rewire the child's brain to attain remarkable outcomes. http://www.youtube.com/user/abmethod
San Rafael, CA (PRWEB) August 14, 2009 -- Parents of and professionals working with children with special needs are invited to attend a one day intensive workshop led by Anat Baniel, founder of the Anat Baniel Method and learn cutting edge, scientifically based techniques that rewire the child's brain to attain remarkable outcomes.
The Anat Baniel Method offers an amazing utilization of brain plasticity principles for the transformation of children with special needs.
"Baniel has developed powerful, practical strategies for improving your abilities and building a better, stronger brain that are supported by the neuroscience of brain plasticity." -- Michael M. Merzenich, Ph.D
Children with special needs are often given a bleak prognosis. The parents are told to keep their hopes down, to be "realistic" about what is possible for their special needs child. http://www.anatbanielmethod.com/help-children-overview.htm
With the Anat Baniel Method, children born with special needs overcome limitations and achieve successful functioning beyond common medical prognosis in ways that are often described as miraculous. http://www.anatbanielmethod.com/parents-success-stories.htm
The ABM is gentle, utilizing innovative movements, awareness and the conditions the brain requires to help the brain of a special needs child form new neural connections and patterns that take the child beyond their current limitations. http://anatbanielmethod.com/move-into-life-the-book.html The professional and parent will acquire practical tools and an understanding of how to help the child develop a better and stronger brain that can create remarkable new possibilities for the child.
"I feel that Anat Baniel's work deserves to have the greatest possible audience, both in the rehabilitation medicine community and beyond." -- Dr. Daniel Graupe, University of Illinois, Chicago
The workshop is experiential and the participants will experience the power of their own bodies, brains, and minds to change powerfully. Meet and work with Anat Baniel in person at a one day workshop for parents and caregivers of and professionals working with children with special needs. This workshop will also be streamed live over the Internet.
DATE: August 29, 2009 - 9:30AM to 4:30PM
LOCATION: UC Santa Barbara, Corwin Pavilion
IN-PERSON: Early bird $99; after Aug. 15 $165; $199 at the door
STREAMING: Early bird $39; $49 day of the event
REGISTER: http://anatbanielmethod.com/workshops-public.htm#children
CONTACT: Claire Lanyado: 415.472-6622
Kris Costello: 805.717-0795
Practitioners using the Anat Baniel Method have facilitated breakthroughs with Learning Disabilities, Attention Deficit Disorder (ADD) & Attention Deficit Hyperactivity Disorder (ADHA). With the Anat Baniel Method many children diagnosed with Child Autism, Sensory Integration Disorder and Pervasive Developmental Disorders improve in remarkable ways, well beyond what they accomplished prior to working with ABM. When work begins with the child prior to age two and even three, often the child will stop demonstrating the initial symptoms and "lose" their initial diagnosis and older children's lives become fuller and freer. ABM has been successful in the treatment for Cerebral Palsy, Brain Damaged Infants and the Brain Injured Child, as well as with Brachial Plexus Injury, Infant Torticollis and other birth injuries and defects with new information necessary for it to form new neural connections and patterns. With the Anat Baniel Method (ABM) children diagnosed with Human Genetic Disorders like Fragile X Syndrome, Spinal Muscular Dystrophy, Down's Syndrome, Charcot-Marie-Tooth disease, or Chromosomal Disorders have improved in remarkable ways, in both physical and cognitive functioning. The Anat Baniel method for children offers a highly effective method for the child born with scoliosis, as well. http://www.anatbanielmethod.com
For more information, or to purchase DVD and CD programs of the Anat Baniel Method, please visit http://anatbanielmethod.com.
# # #
Contact Information
Claire Lanyado
Anat Baniel Method
http://www.anatbanielmethod.com
415.472-6622
Parents of and professionals working with children with special needs are invited to attend a one day intensive workshop led by Anat Baniel, founder of the Anat Baniel Method and learn cutting edge, scientifically based techniques that rewire the child's brain to attain remarkable outcomes. http://www.youtube.com/user/abmethod
San Rafael, CA (PRWEB) August 14, 2009 -- Parents of and professionals working with children with special needs are invited to attend a one day intensive workshop led by Anat Baniel, founder of the Anat Baniel Method and learn cutting edge, scientifically based techniques that rewire the child's brain to attain remarkable outcomes.
The Anat Baniel Method offers an amazing utilization of brain plasticity principles for the transformation of children with special needs.
"Baniel has developed powerful, practical strategies for improving your abilities and building a better, stronger brain that are supported by the neuroscience of brain plasticity." -- Michael M. Merzenich, Ph.D
Children with special needs are often given a bleak prognosis. The parents are told to keep their hopes down, to be "realistic" about what is possible for their special needs child. http://www.anatbanielmethod.com/help-children-overview.htm
With the Anat Baniel Method, children born with special needs overcome limitations and achieve successful functioning beyond common medical prognosis in ways that are often described as miraculous. http://www.anatbanielmethod.com/parents-success-stories.htm
The ABM is gentle, utilizing innovative movements, awareness and the conditions the brain requires to help the brain of a special needs child form new neural connections and patterns that take the child beyond their current limitations. http://anatbanielmethod.com/move-into-life-the-book.html The professional and parent will acquire practical tools and an understanding of how to help the child develop a better and stronger brain that can create remarkable new possibilities for the child.
"I feel that Anat Baniel's work deserves to have the greatest possible audience, both in the rehabilitation medicine community and beyond." -- Dr. Daniel Graupe, University of Illinois, Chicago
The workshop is experiential and the participants will experience the power of their own bodies, brains, and minds to change powerfully. Meet and work with Anat Baniel in person at a one day workshop for parents and caregivers of and professionals working with children with special needs. This workshop will also be streamed live over the Internet.
DATE: August 29, 2009 - 9:30AM to 4:30PM
LOCATION: UC Santa Barbara, Corwin Pavilion
IN-PERSON: Early bird $99; after Aug. 15 $165; $199 at the door
STREAMING: Early bird $39; $49 day of the event
REGISTER: http://anatbanielmethod.com/workshops-public.htm#children
CONTACT: Claire Lanyado: 415.472-6622
Kris Costello: 805.717-0795
Practitioners using the Anat Baniel Method have facilitated breakthroughs with Learning Disabilities, Attention Deficit Disorder (ADD) & Attention Deficit Hyperactivity Disorder (ADHA). With the Anat Baniel Method many children diagnosed with Child Autism, Sensory Integration Disorder and Pervasive Developmental Disorders improve in remarkable ways, well beyond what they accomplished prior to working with ABM. When work begins with the child prior to age two and even three, often the child will stop demonstrating the initial symptoms and "lose" their initial diagnosis and older children's lives become fuller and freer. ABM has been successful in the treatment for Cerebral Palsy, Brain Damaged Infants and the Brain Injured Child, as well as with Brachial Plexus Injury, Infant Torticollis and other birth injuries and defects with new information necessary for it to form new neural connections and patterns. With the Anat Baniel Method (ABM) children diagnosed with Human Genetic Disorders like Fragile X Syndrome, Spinal Muscular Dystrophy, Down's Syndrome, Charcot-Marie-Tooth disease, or Chromosomal Disorders have improved in remarkable ways, in both physical and cognitive functioning. The Anat Baniel method for children offers a highly effective method for the child born with scoliosis, as well. http://www.anatbanielmethod.com
For more information, or to purchase DVD and CD programs of the Anat Baniel Method, please visit http://anatbanielmethod.com.
# # #
Contact Information
Claire Lanyado
Anat Baniel Method
http://www.anatbanielmethod.com
415.472-6622
28 March 2009
Breakthrough Parenting for Children With Special Needs
By Judy Winter; 258 pages. Subtitle: Raising the Bar of Expectations
Winter combines her talents for journalism and parenting in a book that is part inspiration, part how-to, and wholly optimistic about your family's survival as you take on the challenge of raising a child with special needs. It's a particularly useful guide to those just starting out on the journey of dealing with special needs, and hearing from everybody that it's too hard and their life is over and their situation is tragic. Breakthrough Parenting offers a much-needed antidote to all that gloom and doom.
Pros
Takes an upbeat approach to the challenging task of special-needs parenting. Gives parents of children newly diagnosed a voice of experience to guide them, Full of specific tips for a variety of situations and relationships. Includes inspirational stories of individuals with disabilities succeeding. Offers listings of resources with every chapter
Cons
More useful to those just starting out than those who've been at it a while. May seem too upbeat if you're really struggling. Book was published in 2006, so some resources may not be up to date
Description
Part One: Welcome to Breakthrough Parenting for Children With Special Needs
Chapter 1: The Perfect-Baby Dream
Chapter 2: First You Cry
Chapter 3: No Labels, Yes Hope
Part Two: Guidelines for the Preschool Through College Years
Chapter 4: The Pre-K and Elementary Years
Chapter 5: Middle School, Junior High, and High School
Chapter 6: Advocating for Techniques and Programs That Work
Part Three: Focusing on the Family
Chapter 7: Embracing a New Definition of Family and Planning for the Future
Chapter 8: Preserving Your Marriage, Caring for Yourself, and Surviving the Death of a Child
Chapter 9: Meeting the Needs of Siblings
Part Four: Honoring Special Needs Excellence
Chapter 10: Honoring Special Needs Excellence
A Conversation With Timothy P. Shriver, Ph.D.
A Conversation With Dana Reeve
Guide Review - Book Review: Breakthrough Parenting for Children With Special Needs
Learning that a child has special needs can be traumatic for parents -- in no small part, because professionals tend to present it as the End of the World. They'd do a much better service by passing on this book, which acknowledges the grief that must be processed but also provides an action plan for getting on with your life and your child's.
Each section of the book starts off with a "Bill of Rights," including one for children and young adults; parents; siblings; and professionals. Among the rights Winter bestows on parents are the right to "Grieve the loss of a child with special needs" and "Ask tough questions, including Why? -- but also to "Celebrate your child's birth," "Move about freely in society with your child," and "Be proud of your child's accomplishments." Since our children are so often looked upon as nothing but tragic, I appreciated the balance.
Illustrating the points on hoping for the best for your child are stories of individuals with special needs and their families breaking expectations and living their lives. Also helpful are lists of resources at the end of each chapter that can send you off in pursuit of information for your particular situation.
If you've been a special-needs parent for a while and found your way to advocacy and empowerment and favorite resources of your own, the tips and pep talks here may be less useful than if you'd found them in the early days. Still, as your child grows and changes and moves on through school, there are always new suggestions that can help. And it may inspire you to think about how you can pass on your experience to parents starting out with trepidation, in a support group, a blog, or even a book of your own.
Winter combines her talents for journalism and parenting in a book that is part inspiration, part how-to, and wholly optimistic about your family's survival as you take on the challenge of raising a child with special needs. It's a particularly useful guide to those just starting out on the journey of dealing with special needs, and hearing from everybody that it's too hard and their life is over and their situation is tragic. Breakthrough Parenting offers a much-needed antidote to all that gloom and doom.
Pros
Takes an upbeat approach to the challenging task of special-needs parenting. Gives parents of children newly diagnosed a voice of experience to guide them, Full of specific tips for a variety of situations and relationships. Includes inspirational stories of individuals with disabilities succeeding. Offers listings of resources with every chapter
Cons
More useful to those just starting out than those who've been at it a while. May seem too upbeat if you're really struggling. Book was published in 2006, so some resources may not be up to date
Description
Part One: Welcome to Breakthrough Parenting for Children With Special Needs
Chapter 1: The Perfect-Baby Dream
Chapter 2: First You Cry
Chapter 3: No Labels, Yes Hope
Part Two: Guidelines for the Preschool Through College Years
Chapter 4: The Pre-K and Elementary Years
Chapter 5: Middle School, Junior High, and High School
Chapter 6: Advocating for Techniques and Programs That Work
Part Three: Focusing on the Family
Chapter 7: Embracing a New Definition of Family and Planning for the Future
Chapter 8: Preserving Your Marriage, Caring for Yourself, and Surviving the Death of a Child
Chapter 9: Meeting the Needs of Siblings
Part Four: Honoring Special Needs Excellence
Chapter 10: Honoring Special Needs Excellence
A Conversation With Timothy P. Shriver, Ph.D.
A Conversation With Dana Reeve
Guide Review - Book Review: Breakthrough Parenting for Children With Special Needs
Learning that a child has special needs can be traumatic for parents -- in no small part, because professionals tend to present it as the End of the World. They'd do a much better service by passing on this book, which acknowledges the grief that must be processed but also provides an action plan for getting on with your life and your child's.
Each section of the book starts off with a "Bill of Rights," including one for children and young adults; parents; siblings; and professionals. Among the rights Winter bestows on parents are the right to "Grieve the loss of a child with special needs" and "Ask tough questions, including Why? -- but also to "Celebrate your child's birth," "Move about freely in society with your child," and "Be proud of your child's accomplishments." Since our children are so often looked upon as nothing but tragic, I appreciated the balance.
Illustrating the points on hoping for the best for your child are stories of individuals with special needs and their families breaking expectations and living their lives. Also helpful are lists of resources at the end of each chapter that can send you off in pursuit of information for your particular situation.
If you've been a special-needs parent for a while and found your way to advocacy and empowerment and favorite resources of your own, the tips and pep talks here may be less useful than if you'd found them in the early days. Still, as your child grows and changes and moves on through school, there are always new suggestions that can help. And it may inspire you to think about how you can pass on your experience to parents starting out with trepidation, in a support group, a blog, or even a book of your own.
27 February 2009
Cameron: 'If we can't look after him, we have failed'
The Times
February 26, 2009
In an extract from their book, David Cameron's biographers explain the impact of Ivan
Francis Elliott and James Hanning
Ivan Cameron was born in Queen Charlotte's Hospital in London on Monday, April 8, 2002. The birth was by a Caesarean section, made necessary at the last minute because Ivan was the wrong way round in the womb. Otherwise it was a normal delivery of an apparently healthy baby boy. It was a joyful event but even then a period of mixed emotions: in nearby Hammersmith Hospital at the same time, David Cameron's godfather Tim Rathbone, Ian Cameron's schoolfriend and a significant personal and political inspiration, was having tests for cancer. He visited Samantha in hospital but was to die some weeks later. “The fact that he was dying while my son was being born seemed to have some kind of symbolism. It made his birth all the more poignant and moving,” Cameron later told a friend.
Although Ivan was their first child, they quickly sensed that something was wrong. At Queen Charlotte's he seemed to have occasional spasms. Otherwise he seemed a very sleepy child and Samantha struggled with breast-feeding. But the health visitor paying the routine postnatal call to Ginge Manor, where mother and baby had gone after leaving Queen Charlotte's, saw no reason to be alarmed.
Within a week of his birth it was clear that Ivan, still very sleepy, was losing weight. Sometimes his hand would spring open in a series of small but repetitive impulses. As first-time parents, David and Samantha Cameron had nothing to compare their son's behaviour to and, reassured by the advice of the health visitor, showed off their son to Dominic and Tif Loehnis that weekend.
But, as Ivan entered his second week, the jerks were becoming more pronounced. Annabel Astor had become sufficiently concerned to drive her daughter - on her birthday - and grandson to the local GP.
The doctor's initial diagnosis was that the newborn was suffering from a kidney malfunction. He directed them to the accident and emergency department of the John Radcliffe Hospital in Oxford. It was here that the baby had his first major seizure in front of a doctor.
The nature of Ivan's condition was beginning to be shockingly apparent.
David Cameron, joining his wife at the hospital, shared her distress as their tiny child was subjected to 48 hours of blood tests, brain scans and lumbar punctures. Of all the tests, the one that was picking up the most identifiable evidence of Ivan's problem was the electroencephalogram (EEG). The EEG records brainwave patterns from electrical signals emitted by the brain. This showed the high-voltage “spikes” that occur in epilepsy, but they were followed by very little activity.
After one last confirming EEG, Mike Pike, a paediatrician, took the couple into a side room to talk. With ominous purposefulness, he placed a box of Kleenex beside them. He told them that this was very serious, that the pattern he had seen was consistent with “a very poor outcome and severe disability”. Ivan, he said, would have “very serious difficulties”. Cameron, struggling to take the gravity of the diagnosis on board, said: “When you say he's got serious difficulties, does that mean he's going to have trouble doing his maths, or does that mean he's never going to be able to walk and talk?” Pike said simply: “I'm afraid it means he probably won't walk or talk.” Within a few days they had a name for Ivan's condition: Ohtahara syndrome.
The National Institute of Neurological Disorders and Stroke (NINDS) provides the following definition: “a neurological disorder characterised by seizures ... most commonly caused by metabolic disorders or structural damage in the brain, although the cause or causes in many cases can't be determined”. Most infants “show significant underdevelopment of part or all of the cerebral hemispheres. The course of Ohtahara syndrome is severely progressive. Seizures become more frequent, accompanied by physical and mental retardation. Some children will die in infancy; others will survive but be profoundly handicapped.” Unsure whether Ivan would live for weeks or years, Cameron ensured that his son was christened at the earliest opportunity.
Cameron has said that the news hit him “like a freight train”. A friend observes that the couple entered “a very, very grim and difficult period” Emotionally, they had to overcome the discrepancy between the elation they had felt at the birth of their first child and the reality of what lay ahead. “You are depressed for a while because you are grieving for the difference between your hopes and the reality,” he has said.
There were immediate practical issues to address, the most pressing of which was how best to manage his condition. Ivan went through further tests at Great Ormond Street and Queen Mary's hospitals in London as doctors experimented with cocktails of drugs. David and Samantha Cameron, taking it in turns to sleep beside their son on hospital floors, were given a brutal lesson in the reality of life as the parent of a disabled child. After his initial shock Cameron has described how he began to surface. “There was a moment driving home from hospital and just thinking ‘We are going to get through this. If we can't do a good job and look after him, then we have failed'.” Initially the Camerons tried to look after Ivan themselves, without the support of their local authority's social services department. For a year the couple struggled with the situation largely on their own, although they had help from a special-needs-trained nurse during the day. Three and a half months after Ivan was born, Samantha had returned to work - as planned - for two days a week, and after five months she was back doing nine-day fortnights. It was a difficult decision.
On the one hand she worried inconsolably about Ivan's minute-to-minute care, but, on the other, her career was important to her and she had always intended to carry on working.
Childcare was shared between them. Journalists spotted Cameron bottle-feeding his son in Westminster that summer and cited it as evidence of the changing nature of the Tory party, not knowing the fullness of that truth. The young Tory MP also took Ivan to meetings at Carlton, where he remained a consultant. Former colleagues could hardly fail to notice the difference in him. At Edwina Paine's engagement party, one said he seemed a “different man ... he seemed much less frivolous”. Another senior colleague said: “He'd walk around with that baby in a basket, he'd come to every meeting.” Where previously Cameron had appeared “arrogant”, “this was a real leveller”.
Giles Andreae has said that Ivan's handicap had given Cameron “more humility”. Cameron has admitted as much himself. “Having a severely disabled son does bring you into contact with a lot of other elements of life. You do spend a lot of time in hospitals, you meet a lot of other parents and families in the same situation. It's an eye-opener.” At one point, Ivan's blood pressure shot up and he had to be rushed to the renal unit at Great Ormond Street. Cameron found that hospital visit in particular a strange experience. “He was struck by the fact that there were all these kids there who had been on dialysis for months, being incredibly courageous with these awful, awful problems,” says a friend. “I think it made him realise that there are other people in similar situations. On one occasion he was there all night, and at about 4am he was reading Jack and Jill to someone else's kids, and then had to go to Parliament early the next day to carry on with life as normal.”
© Francis Elliott and James Hanning 2007. Extracted from Cameron: The Rise of the New Conservative (Fourth Estate, £18.99) Available from Times BooksFirst for £17.09, free p&p. 0870 1608080, timesonline.co.uk/booksfirst. The Times, on behalf of the authors and the publisher, has made a donation to Mencap and St Mary's Hospital
February 26, 2009
In an extract from their book, David Cameron's biographers explain the impact of Ivan
Francis Elliott and James Hanning
Ivan Cameron was born in Queen Charlotte's Hospital in London on Monday, April 8, 2002. The birth was by a Caesarean section, made necessary at the last minute because Ivan was the wrong way round in the womb. Otherwise it was a normal delivery of an apparently healthy baby boy. It was a joyful event but even then a period of mixed emotions: in nearby Hammersmith Hospital at the same time, David Cameron's godfather Tim Rathbone, Ian Cameron's schoolfriend and a significant personal and political inspiration, was having tests for cancer. He visited Samantha in hospital but was to die some weeks later. “The fact that he was dying while my son was being born seemed to have some kind of symbolism. It made his birth all the more poignant and moving,” Cameron later told a friend.
Although Ivan was their first child, they quickly sensed that something was wrong. At Queen Charlotte's he seemed to have occasional spasms. Otherwise he seemed a very sleepy child and Samantha struggled with breast-feeding. But the health visitor paying the routine postnatal call to Ginge Manor, where mother and baby had gone after leaving Queen Charlotte's, saw no reason to be alarmed.
Within a week of his birth it was clear that Ivan, still very sleepy, was losing weight. Sometimes his hand would spring open in a series of small but repetitive impulses. As first-time parents, David and Samantha Cameron had nothing to compare their son's behaviour to and, reassured by the advice of the health visitor, showed off their son to Dominic and Tif Loehnis that weekend.
But, as Ivan entered his second week, the jerks were becoming more pronounced. Annabel Astor had become sufficiently concerned to drive her daughter - on her birthday - and grandson to the local GP.
The doctor's initial diagnosis was that the newborn was suffering from a kidney malfunction. He directed them to the accident and emergency department of the John Radcliffe Hospital in Oxford. It was here that the baby had his first major seizure in front of a doctor.
The nature of Ivan's condition was beginning to be shockingly apparent.
David Cameron, joining his wife at the hospital, shared her distress as their tiny child was subjected to 48 hours of blood tests, brain scans and lumbar punctures. Of all the tests, the one that was picking up the most identifiable evidence of Ivan's problem was the electroencephalogram (EEG). The EEG records brainwave patterns from electrical signals emitted by the brain. This showed the high-voltage “spikes” that occur in epilepsy, but they were followed by very little activity.
After one last confirming EEG, Mike Pike, a paediatrician, took the couple into a side room to talk. With ominous purposefulness, he placed a box of Kleenex beside them. He told them that this was very serious, that the pattern he had seen was consistent with “a very poor outcome and severe disability”. Ivan, he said, would have “very serious difficulties”. Cameron, struggling to take the gravity of the diagnosis on board, said: “When you say he's got serious difficulties, does that mean he's going to have trouble doing his maths, or does that mean he's never going to be able to walk and talk?” Pike said simply: “I'm afraid it means he probably won't walk or talk.” Within a few days they had a name for Ivan's condition: Ohtahara syndrome.
The National Institute of Neurological Disorders and Stroke (NINDS) provides the following definition: “a neurological disorder characterised by seizures ... most commonly caused by metabolic disorders or structural damage in the brain, although the cause or causes in many cases can't be determined”. Most infants “show significant underdevelopment of part or all of the cerebral hemispheres. The course of Ohtahara syndrome is severely progressive. Seizures become more frequent, accompanied by physical and mental retardation. Some children will die in infancy; others will survive but be profoundly handicapped.” Unsure whether Ivan would live for weeks or years, Cameron ensured that his son was christened at the earliest opportunity.
Cameron has said that the news hit him “like a freight train”. A friend observes that the couple entered “a very, very grim and difficult period” Emotionally, they had to overcome the discrepancy between the elation they had felt at the birth of their first child and the reality of what lay ahead. “You are depressed for a while because you are grieving for the difference between your hopes and the reality,” he has said.
There were immediate practical issues to address, the most pressing of which was how best to manage his condition. Ivan went through further tests at Great Ormond Street and Queen Mary's hospitals in London as doctors experimented with cocktails of drugs. David and Samantha Cameron, taking it in turns to sleep beside their son on hospital floors, were given a brutal lesson in the reality of life as the parent of a disabled child. After his initial shock Cameron has described how he began to surface. “There was a moment driving home from hospital and just thinking ‘We are going to get through this. If we can't do a good job and look after him, then we have failed'.” Initially the Camerons tried to look after Ivan themselves, without the support of their local authority's social services department. For a year the couple struggled with the situation largely on their own, although they had help from a special-needs-trained nurse during the day. Three and a half months after Ivan was born, Samantha had returned to work - as planned - for two days a week, and after five months she was back doing nine-day fortnights. It was a difficult decision.
On the one hand she worried inconsolably about Ivan's minute-to-minute care, but, on the other, her career was important to her and she had always intended to carry on working.
Childcare was shared between them. Journalists spotted Cameron bottle-feeding his son in Westminster that summer and cited it as evidence of the changing nature of the Tory party, not knowing the fullness of that truth. The young Tory MP also took Ivan to meetings at Carlton, where he remained a consultant. Former colleagues could hardly fail to notice the difference in him. At Edwina Paine's engagement party, one said he seemed a “different man ... he seemed much less frivolous”. Another senior colleague said: “He'd walk around with that baby in a basket, he'd come to every meeting.” Where previously Cameron had appeared “arrogant”, “this was a real leveller”.
Giles Andreae has said that Ivan's handicap had given Cameron “more humility”. Cameron has admitted as much himself. “Having a severely disabled son does bring you into contact with a lot of other elements of life. You do spend a lot of time in hospitals, you meet a lot of other parents and families in the same situation. It's an eye-opener.” At one point, Ivan's blood pressure shot up and he had to be rushed to the renal unit at Great Ormond Street. Cameron found that hospital visit in particular a strange experience. “He was struck by the fact that there were all these kids there who had been on dialysis for months, being incredibly courageous with these awful, awful problems,” says a friend. “I think it made him realise that there are other people in similar situations. On one occasion he was there all night, and at about 4am he was reading Jack and Jill to someone else's kids, and then had to go to Parliament early the next day to carry on with life as normal.”
© Francis Elliott and James Hanning 2007. Extracted from Cameron: The Rise of the New Conservative (Fourth Estate, £18.99) Available from Times BooksFirst for £17.09, free p&p. 0870 1608080, timesonline.co.uk/booksfirst. The Times, on behalf of the authors and the publisher, has made a donation to Mencap and St Mary's Hospital
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