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 Down syndrome. Show all posts
Showing posts with label Down syndrome. Show all posts
22 March 2012
23 May 2009
New treatments used for kids with old medical problems
WICHITA, Kansas – Yoga is often used for exercise and relaxation, but now doctors are recommending it for children with special needs. It’s just one example of new approaches to old medical problems. What’s meant to be a workout is just fun for six-year-old Jami. She has cerebral palsy, which caused her muscles to constrict and tighten. So, her doctor recommended yoga. "I was surprised-- I guess more hopeful that it would work,” said Jami’s mother Patty Moulds. “It kind of makes sense when you think about yoga is stretching."
Instructor Sheryl Haynes uses several yoga poses to strengthen Jami’s lower back and leg muscles. "Since she's a tippy-toe walker, getting stretched out back here, the calves and tendons back through here -- we're working on things that do that,” Haynes said. She also works with kids who have Down’s syndrome and other developmental delays. She uses nursery rhymes practice their language skills at the same time.
It’s modern therapy based on an ancient exercise. Another unusual treatment that more parents are turning to for help is at a chiropractic clinic, where the doctor claims he can cure colic. What's more, he says it only takes a few weeks. Colic affects one in five babies, causing uncontrollable crying. "Constantly from morning until night, into the wee hours of the morning,” said Rachel Murphy of her baby’s crying. “It was 24 hours she cried." But Ella was treated by Dr. Dennis Scharenberg, who believes he knows what causes colic. He says a weak valve between the babies’s small and large intestines leads to painful indigestion. "And when I strengthen that muscle, it stops leaking, and when it stops leaking, the colic is gone,” Dr. Scharenberg said. “It's gone and it doesn't come back." He simply messages the muscle for about 20 minutes several times a week. "After about three treatments, we noticed a significant improvement -- a lot less crying, more sleep at night,” said mother Crystal Jones. All of the moms say they were skeptical at first, but desperate enough to give it a try. "It's like it's too good to be true, but it is, and it works,” said mother Jennifer George. So, why don’t other doctors do it? Dr. Sharenberg says it’s a technique he developed himself and actually volunteers his services to get the word out, hoping it will bring help for the helpless and peace of mind for parents.
Instructor Sheryl Haynes uses several yoga poses to strengthen Jami’s lower back and leg muscles. "Since she's a tippy-toe walker, getting stretched out back here, the calves and tendons back through here -- we're working on things that do that,” Haynes said. She also works with kids who have Down’s syndrome and other developmental delays. She uses nursery rhymes practice their language skills at the same time.
It’s modern therapy based on an ancient exercise. Another unusual treatment that more parents are turning to for help is at a chiropractic clinic, where the doctor claims he can cure colic. What's more, he says it only takes a few weeks. Colic affects one in five babies, causing uncontrollable crying. "Constantly from morning until night, into the wee hours of the morning,” said Rachel Murphy of her baby’s crying. “It was 24 hours she cried." But Ella was treated by Dr. Dennis Scharenberg, who believes he knows what causes colic. He says a weak valve between the babies’s small and large intestines leads to painful indigestion. "And when I strengthen that muscle, it stops leaking, and when it stops leaking, the colic is gone,” Dr. Scharenberg said. “It's gone and it doesn't come back." He simply messages the muscle for about 20 minutes several times a week. "After about three treatments, we noticed a significant improvement -- a lot less crying, more sleep at night,” said mother Crystal Jones. All of the moms say they were skeptical at first, but desperate enough to give it a try. "It's like it's too good to be true, but it is, and it works,” said mother Jennifer George. So, why don’t other doctors do it? Dr. Sharenberg says it’s a technique he developed himself and actually volunteers his services to get the word out, hoping it will bring help for the helpless and peace of mind for parents.
13 April 2009
Why aren't there more places like this?
The death of David Cameron's son has turned the spotlight on a very special group of schools
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.
Full potential
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."
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.
Full potential
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."
27 March 2009
Seizing the day
Young man undaunted by developmental disabilities
By Pam Mellskog
2009 Longmont Times-Call
LONGMONT — Though blue jean-clad and just 20 years old, Kyle Sanchez talks and acts like a gentleman.
He criticizes rap music for lyrics that “disrespect women” and holds his mother’s hand in public if she — a 42-year-old widow disabled by multiple sclerosis — becomes unsteady on her feet.
Sanchez — who lives with her and his younger brother, Andrew — got a job last year to help pay the family’s bills. But his helpful attitude earned him more than a paycheck.
Sanchez received the Governor’s Summer Job Hunt Award from 400 nominees statewide in August. In March, he became the 2009 Direct Support Professional of the Year in Colorado — recognition bestowed by the Virginia-based American Network of Community Options and Resources, a nonprofit, national trade association.
The kudos means more given his once-desperate survivor status as a baby born 16 weeks early on May 18, 1988.
His family waited two months to touch him. Eventually, they dressed him in Cabbage Patch Doll clothing and made tiny diapers with gauze.
Dolores Sanchez, Kyle Sanchez’s maternal grandmother, put down her knitting and held up her hand to describe the situation.
“He fit in the palm of my hand. ... And there wasn’t a part of his body that wasn’t attached to something,” she said, referring to the ventilator, monitor wires, intravenous lines and feeding tube. “I didn’t know how God was going to work this miracle, because I didn’t see it happening.”
The Children’s Hospital in Denver, where Kyle Sanchez lived until age 7 months, gave him a 20 percent chance of survival and a 10 percent chance of survival without serious disability.
No one except his mother, Maria Sanchez-Trujillo, expected him to live, much less to walk or talk.
Kyle Sanchez survived and then got help from age 3 on at the Lafayette-based Imagine! center for people with developmental disabilities. In 2007, he graduated from Skyline High School in Longmont.
“But he said it had always been his dream to work,” said Heather Hine, his supervisor in Imagine!’s Out and About program.
She hired him last May to work full time last summer as an assistant in this recreation therapy program for Imagine! clients. Participants include people ages 7 to 21 living with developmental disabilities such as autism, cerebral palsy and Down syndrome.
Kyle Sanchez now works part time in Out and About’s after-school program.
Hine remembers him arriving for the interview wearing pressed slacks, a dress shirt and a tie. After he interviewed well, she offered him the job.
“You should have seen his face. It was one of shock and just sheer joy,” she said. “He kept saying ‘Thank you,’ and ‘I’m going to work so hard.’”
Kristen Erby, a career counselor with Workforce Boulder County in Longmont, applauded him for landing a competitive job.
“Nobody with disabilities wants to be put (to work) in the back of a warehouse,” she said. “He’s compassionate and a great role model to the camp participants because he’s overcome his own barriers to employment.”
For instance, Kyle Sanchez struggles to understand time. To get to work or to his desk at Life Strategies University — the St. Vrain Valley School District’s two-year life skills program in Longmont — he stands by the family’s mailbox and waits until his cell phone’s digital clock reads 7:59 a.m.
Then, he knows to head for the bus — a service with time-sensitive schedules he worked for years to understand.
His prematurity also affected his fine motor skills. Tying shoes and opening potato chip bags remain a challenge.
But Kyle Sanchez can do nothing more than take medication for the worst consequence of his early birth — a weak heart. His ticker may fail to give him the years he wants to work, start a family and enjoy his surprising life.
“The attitude for me would be, ‘Keep on goin’ ’til you can’t no more,’” he said.
Pam Mellskog can be reached at 303-684-5224 or pmellskog@times-call.com.
By Pam Mellskog
2009 Longmont Times-Call
LONGMONT — Though blue jean-clad and just 20 years old, Kyle Sanchez talks and acts like a gentleman.
He criticizes rap music for lyrics that “disrespect women” and holds his mother’s hand in public if she — a 42-year-old widow disabled by multiple sclerosis — becomes unsteady on her feet.
Sanchez — who lives with her and his younger brother, Andrew — got a job last year to help pay the family’s bills. But his helpful attitude earned him more than a paycheck.
Sanchez received the Governor’s Summer Job Hunt Award from 400 nominees statewide in August. In March, he became the 2009 Direct Support Professional of the Year in Colorado — recognition bestowed by the Virginia-based American Network of Community Options and Resources, a nonprofit, national trade association.
The kudos means more given his once-desperate survivor status as a baby born 16 weeks early on May 18, 1988.
His family waited two months to touch him. Eventually, they dressed him in Cabbage Patch Doll clothing and made tiny diapers with gauze.
Dolores Sanchez, Kyle Sanchez’s maternal grandmother, put down her knitting and held up her hand to describe the situation.
“He fit in the palm of my hand. ... And there wasn’t a part of his body that wasn’t attached to something,” she said, referring to the ventilator, monitor wires, intravenous lines and feeding tube. “I didn’t know how God was going to work this miracle, because I didn’t see it happening.”
The Children’s Hospital in Denver, where Kyle Sanchez lived until age 7 months, gave him a 20 percent chance of survival and a 10 percent chance of survival without serious disability.
No one except his mother, Maria Sanchez-Trujillo, expected him to live, much less to walk or talk.
Kyle Sanchez survived and then got help from age 3 on at the Lafayette-based Imagine! center for people with developmental disabilities. In 2007, he graduated from Skyline High School in Longmont.
“But he said it had always been his dream to work,” said Heather Hine, his supervisor in Imagine!’s Out and About program.
She hired him last May to work full time last summer as an assistant in this recreation therapy program for Imagine! clients. Participants include people ages 7 to 21 living with developmental disabilities such as autism, cerebral palsy and Down syndrome.
Kyle Sanchez now works part time in Out and About’s after-school program.
Hine remembers him arriving for the interview wearing pressed slacks, a dress shirt and a tie. After he interviewed well, she offered him the job.
“You should have seen his face. It was one of shock and just sheer joy,” she said. “He kept saying ‘Thank you,’ and ‘I’m going to work so hard.’”
Kristen Erby, a career counselor with Workforce Boulder County in Longmont, applauded him for landing a competitive job.
“Nobody with disabilities wants to be put (to work) in the back of a warehouse,” she said. “He’s compassionate and a great role model to the camp participants because he’s overcome his own barriers to employment.”
For instance, Kyle Sanchez struggles to understand time. To get to work or to his desk at Life Strategies University — the St. Vrain Valley School District’s two-year life skills program in Longmont — he stands by the family’s mailbox and waits until his cell phone’s digital clock reads 7:59 a.m.
Then, he knows to head for the bus — a service with time-sensitive schedules he worked for years to understand.
His prematurity also affected his fine motor skills. Tying shoes and opening potato chip bags remain a challenge.
But Kyle Sanchez can do nothing more than take medication for the worst consequence of his early birth — a weak heart. His ticker may fail to give him the years he wants to work, start a family and enjoy his surprising life.
“The attitude for me would be, ‘Keep on goin’ ’til you can’t no more,’” he said.
Pam Mellskog can be reached at 303-684-5224 or pmellskog@times-call.com.
11 December 2008
Music therapist brings harmony to disabled children and adults
For 30 minutes every Thursday afternoon, the music room is quiet except for the tickling of small fingers on the keyboard and the occasional giggle.
It doesn’t matter that cerebral palsy has compromised Madelynn Legge’s motor coordination. For those moments, the 5-year-old from Scituate sits on the piano bench or nods her head to the rhythmic tunes of the ivory keys. Horn, slide whistle and kazoo, she gets moving.
Eve Montague has taught Madelynn since she was 2 to use music as a way to improve coordination, gait and balance.
For the past four years, certified music therapist Montague has been using song and sound to open the world to disabled individuals at the Duxbury campus of the South Shore Conservatory.
Montague, 48, of Pembroke, uses music to create an environment where her students can explore their own world with freedom and safety.
“Music has been a pathway for those with communication barriers to find their voice and express their needs and wants,'' Montague said.
Madelynn can’t talk and finds it hard to produce enough sound to laugh, says her mother, Melanie Legge.
“Most people take laughing for granted,'' Legge said. “For our daughter, laughing occurs when her father does a running cannon ball into the swimming pool for the sheer delight of hearing Madelynn laugh.
“Eve has this same effect on Madelynn.''
That effect was evident from the start when Legge saw her daughter stand on her own for the first time, mesmerized by Montague and her music, almost forgetting about her lack of balance.
Patient and energetic, Montague pours her heart and soul into the 30-minute session, Legge says.
Rhonda Carson says her son Billy, 26, born with Down syndrome, didn’t play the piano before he began working with Montague.
Carson says Montague has Billy pick out a few songs on the keys and he sings now with more rhythm.
“When Billy sings with Eve, you can hear them all the way down the hall,'' Rhonda chuckles. “She brings out the music in him.''
Before coming to the conservatory, Montague spent 12 years as coordinator of the creative arts department at the Massachusetts Hospital School in Canton, a nonprofit servicing children with neuromuscular, progressive diseases.
It was there she developed a performing arts program and a music therapy internship program.
Montague says, “I was excited by the idea that the power of music could transcend learning challenges and help individuals lead as independent lives as possible.''
Montague said music helps people relax and reduce pain and anxiety. It also guides them to work within structure and demands. Montague tailors her teachings to suit each student’s needs.
Madelynn, who could not speak or walk, has developed into a steady walker who can even run.
“Music has helped organize her motor patterns,'' Montague says.
And the joy is not all Madelynn’s.
“I have the opportunity to witness the power of music as it opens new learning channels for those who struggle with more traditional forms of learning,'' Montague said.
“Seeing growth as an individual becomes more confident, empowered and independent in their life-long learning – and knowing I may have opened some doors for them – is truly powerful.''
It doesn’t matter that cerebral palsy has compromised Madelynn Legge’s motor coordination. For those moments, the 5-year-old from Scituate sits on the piano bench or nods her head to the rhythmic tunes of the ivory keys. Horn, slide whistle and kazoo, she gets moving.
Eve Montague has taught Madelynn since she was 2 to use music as a way to improve coordination, gait and balance.
For the past four years, certified music therapist Montague has been using song and sound to open the world to disabled individuals at the Duxbury campus of the South Shore Conservatory.
Montague, 48, of Pembroke, uses music to create an environment where her students can explore their own world with freedom and safety.
“Music has been a pathway for those with communication barriers to find their voice and express their needs and wants,'' Montague said.
Madelynn can’t talk and finds it hard to produce enough sound to laugh, says her mother, Melanie Legge.
“Most people take laughing for granted,'' Legge said. “For our daughter, laughing occurs when her father does a running cannon ball into the swimming pool for the sheer delight of hearing Madelynn laugh.
“Eve has this same effect on Madelynn.''
That effect was evident from the start when Legge saw her daughter stand on her own for the first time, mesmerized by Montague and her music, almost forgetting about her lack of balance.
Patient and energetic, Montague pours her heart and soul into the 30-minute session, Legge says.
Rhonda Carson says her son Billy, 26, born with Down syndrome, didn’t play the piano before he began working with Montague.
Carson says Montague has Billy pick out a few songs on the keys and he sings now with more rhythm.
“When Billy sings with Eve, you can hear them all the way down the hall,'' Rhonda chuckles. “She brings out the music in him.''
Before coming to the conservatory, Montague spent 12 years as coordinator of the creative arts department at the Massachusetts Hospital School in Canton, a nonprofit servicing children with neuromuscular, progressive diseases.
It was there she developed a performing arts program and a music therapy internship program.
Montague says, “I was excited by the idea that the power of music could transcend learning challenges and help individuals lead as independent lives as possible.''
Montague said music helps people relax and reduce pain and anxiety. It also guides them to work within structure and demands. Montague tailors her teachings to suit each student’s needs.
Madelynn, who could not speak or walk, has developed into a steady walker who can even run.
“Music has helped organize her motor patterns,'' Montague says.
And the joy is not all Madelynn’s.
“I have the opportunity to witness the power of music as it opens new learning channels for those who struggle with more traditional forms of learning,'' Montague said.
“Seeing growth as an individual becomes more confident, empowered and independent in their life-long learning – and knowing I may have opened some doors for them – is truly powerful.''
15 August 2008
Tropic Thunder Blasted by Disability-Rights Groups
By Terri Mauro
Tropic Thunder, the Ben Stiller comedy opening Wednesday, is being sold as an equal-opportunity offender, the kind of film that has Jack Black making fart jokes and Robert Downey Jr. in blackface. You don't expect a lot of sensitivity from a rowdy R-rated satire on the excesses of Hollywood actors and war movies. But advocates for people with developmental disabilities are accusing the filmmakers of crossing the line between good dirty fun and hate speech.
Disability-rights groups including The Arc, Special Olympics, and the National Down Syndrome Congress are not amused by a subplot involving Stiller's character, an action-movie star who made an unsuccessful stab at Oscar respectability by playing a man with intellectual disabilities in a movie called Simple Jack. Well, we'd say "a man with intellectual disabilities." The film says "retard." A lot. Journalist Patricia E. Bauer, who has been covering the brewing controversy in her Disability News blog, shared this approximate tally after an advance viewing:
Number of repetitions of the word "retard" or its variations: At least 16 in the "full retard" scene alone, not counting the uses of words like "idiot," "moron," "moronical," "imbecile," "stupid," "dumb" and "the dumbest M*****F***** that ever lived." All are used to describe the character of Simple Jack, who is described in an introductory segment as a "mentally impaired farm hand who can talk to animals."
That "full retard" scene (see a video on the About.com Movies site) involves Stiller and Downey discussing the perils of getting too far into a role like "Simple Jack," with Downey's more accomplished actor character advising Stiller's to "never go full retard." That phrase already landed on a t-shirt, and the Simple Jack movie had its own website for a while featuring the tagline, "Once Upon a Time ... There Was a Retard."
The film has its Los Angeles premiere today; also today, screenings are scheduled for disability-rights groups in the hope of heading off protests. Based on Bauer's observations from her early screening, it seems as though the offensive material is pervasive enough that it would be difficult to excise quickly. DreamWorks, the studio behind the film, has already indicated that no such cuts will be made. Perhaps they're hoping that advocates will decide it's no big deal once the material is viewed in context.
Or, more likely, they don't care. I have an unhappy suspicion that the target audience for a movie like this is one that will be more eager to see it if they think it's drawing protests. When you're trying to cultivate an air of outrageousness, picketers and boycotts kind of do your selling for you, don't they? Especially when you're offending a group that the public at large doesn't exactly bend over backwards to be respectful toward. In a way, I'm more worried about my daughter's English teacher who thought "Mongoloid" was a perfectly good word to put on a vocabulary test than I am about a deliberately offensive comedy using an offensive word offensively.
Except ... does this comedy really mean to be as heedlessly offensive as it claims? They had me going for a while, until I read this exchange in an interview with the stars in this week's Entertainment Weekly about the potential for problems with Downey's skin-darkening character:
ENTERTAINMENT WEEKLY: The challenge with that character was to find the right line. You want to make fun of this pompous actor, but if you play it wrong, it verges on being minstrel-like. Your costar Brandon T. Jackson told me there was a scene in the script where Osiris uses the N-word and that he said it went over the line.
ROBERT DOWNEY JR.: Brandon might have saved the movie that day.
BEN STILLER: For sure. We were rehearsing in Hawaii and we got to that scene and I said to him, ''What do you think of this?'' Brandon said, ''This feels wrong.'' It was definitely a constant process of feeling it out.
Hmm. Feeling it out. Finding the line between rowdy fun and hate speech. How handy it must be to have somebody on set who can let you know when you've gone "over the line." I was reminded of something Bauer wrote early in her coverage of the controversy, in response to that "equal-opportunity offender" excuse:
People of different races surely were involved in the making of this film, and were able to express opinions about which references were humorous and which might have gone too far. So were people with different sexual orientations. How many people with cognitive disabilities were involved in the making of this film? Were any people with cognitive disabilities involved in focus groups for this film? How many are employed by Dreamworks, or by parent company Paramount?
I doubt there are any good answers to those questions. I've had respect for this studio and these actors in the past, and it sort of amazes me that it would have occurred to no one to get a reality check on this plot from someone involved with Special Olympics or The Arc. For those who think all this furor is just proof that these organizations can't take a joke, it's instructive to look at the relationship between Special Olympics and another crude comedy that played on stereotypes, the Farrelly Brothers' The Ringer. That film was enthusiastically embraced and promoted by Special Olympics, and not for nothing, employed many actors with intellectual disabilities who were in a position to provide a counterpoint to those stereotypes.
No such counterpoint is offered in Tropic Thunder, and not much creative thought seems to have gone into this particular storyline. And that's too bad, because I don't think actors who take on disability roles as awards-bait are a bad target for satire. I've read interviews with actors who seem to believe that they understand everything there is to know about living with a disability because they played a disabled character, and I'd be willing to laugh at that. Using self-consciously politically correct language, certainly a valid target in liberal Hollywood, might actually have made the satire sharper. It ought to have been possible to make this about mocking self-absorbed and condescending actors, as the filmmakers claim was their aim, and not about mocking people with disabilities.
Falling back on an offensive word to get laughs is lazy comedy, and if the film's potential fans aren't bothered by the language, they should be bothered by that.
What do you make of all this? Will you boycott the film? Would you have seen it in the first place? Do you think protests will hurt the film or help it? Share your thoughts
Tropic Thunder, the Ben Stiller comedy opening Wednesday, is being sold as an equal-opportunity offender, the kind of film that has Jack Black making fart jokes and Robert Downey Jr. in blackface. You don't expect a lot of sensitivity from a rowdy R-rated satire on the excesses of Hollywood actors and war movies. But advocates for people with developmental disabilities are accusing the filmmakers of crossing the line between good dirty fun and hate speech.
Disability-rights groups including The Arc, Special Olympics, and the National Down Syndrome Congress are not amused by a subplot involving Stiller's character, an action-movie star who made an unsuccessful stab at Oscar respectability by playing a man with intellectual disabilities in a movie called Simple Jack. Well, we'd say "a man with intellectual disabilities." The film says "retard." A lot. Journalist Patricia E. Bauer, who has been covering the brewing controversy in her Disability News blog, shared this approximate tally after an advance viewing:
Number of repetitions of the word "retard" or its variations: At least 16 in the "full retard" scene alone, not counting the uses of words like "idiot," "moron," "moronical," "imbecile," "stupid," "dumb" and "the dumbest M*****F***** that ever lived." All are used to describe the character of Simple Jack, who is described in an introductory segment as a "mentally impaired farm hand who can talk to animals."
That "full retard" scene (see a video on the About.com Movies site) involves Stiller and Downey discussing the perils of getting too far into a role like "Simple Jack," with Downey's more accomplished actor character advising Stiller's to "never go full retard." That phrase already landed on a t-shirt, and the Simple Jack movie had its own website for a while featuring the tagline, "Once Upon a Time ... There Was a Retard."
The film has its Los Angeles premiere today; also today, screenings are scheduled for disability-rights groups in the hope of heading off protests. Based on Bauer's observations from her early screening, it seems as though the offensive material is pervasive enough that it would be difficult to excise quickly. DreamWorks, the studio behind the film, has already indicated that no such cuts will be made. Perhaps they're hoping that advocates will decide it's no big deal once the material is viewed in context.
Or, more likely, they don't care. I have an unhappy suspicion that the target audience for a movie like this is one that will be more eager to see it if they think it's drawing protests. When you're trying to cultivate an air of outrageousness, picketers and boycotts kind of do your selling for you, don't they? Especially when you're offending a group that the public at large doesn't exactly bend over backwards to be respectful toward. In a way, I'm more worried about my daughter's English teacher who thought "Mongoloid" was a perfectly good word to put on a vocabulary test than I am about a deliberately offensive comedy using an offensive word offensively.
Except ... does this comedy really mean to be as heedlessly offensive as it claims? They had me going for a while, until I read this exchange in an interview with the stars in this week's Entertainment Weekly about the potential for problems with Downey's skin-darkening character:
ENTERTAINMENT WEEKLY: The challenge with that character was to find the right line. You want to make fun of this pompous actor, but if you play it wrong, it verges on being minstrel-like. Your costar Brandon T. Jackson told me there was a scene in the script where Osiris uses the N-word and that he said it went over the line.
ROBERT DOWNEY JR.: Brandon might have saved the movie that day.
BEN STILLER: For sure. We were rehearsing in Hawaii and we got to that scene and I said to him, ''What do you think of this?'' Brandon said, ''This feels wrong.'' It was definitely a constant process of feeling it out.
Hmm. Feeling it out. Finding the line between rowdy fun and hate speech. How handy it must be to have somebody on set who can let you know when you've gone "over the line." I was reminded of something Bauer wrote early in her coverage of the controversy, in response to that "equal-opportunity offender" excuse:
People of different races surely were involved in the making of this film, and were able to express opinions about which references were humorous and which might have gone too far. So were people with different sexual orientations. How many people with cognitive disabilities were involved in the making of this film? Were any people with cognitive disabilities involved in focus groups for this film? How many are employed by Dreamworks, or by parent company Paramount?
I doubt there are any good answers to those questions. I've had respect for this studio and these actors in the past, and it sort of amazes me that it would have occurred to no one to get a reality check on this plot from someone involved with Special Olympics or The Arc. For those who think all this furor is just proof that these organizations can't take a joke, it's instructive to look at the relationship between Special Olympics and another crude comedy that played on stereotypes, the Farrelly Brothers' The Ringer. That film was enthusiastically embraced and promoted by Special Olympics, and not for nothing, employed many actors with intellectual disabilities who were in a position to provide a counterpoint to those stereotypes.
No such counterpoint is offered in Tropic Thunder, and not much creative thought seems to have gone into this particular storyline. And that's too bad, because I don't think actors who take on disability roles as awards-bait are a bad target for satire. I've read interviews with actors who seem to believe that they understand everything there is to know about living with a disability because they played a disabled character, and I'd be willing to laugh at that. Using self-consciously politically correct language, certainly a valid target in liberal Hollywood, might actually have made the satire sharper. It ought to have been possible to make this about mocking self-absorbed and condescending actors, as the filmmakers claim was their aim, and not about mocking people with disabilities.
Falling back on an offensive word to get laughs is lazy comedy, and if the film's potential fans aren't bothered by the language, they should be bothered by that.
What do you make of all this? Will you boycott the film? Would you have seen it in the first place? Do you think protests will hurt the film or help it? Share your thoughts
09 August 2008
Creative Hands therapy benefits those with limited mobility
Art meets medicine in a unique form of vocational therapy that employees of Avenues adult vocational rehabilitation program in Pottville are learning.
Through the Creative Hands pottery program, which began last month, employees are learning a new skill that also has therapeutic benefits, said Denise Keitsock, the program supervisor at Lessie’s Greenhouse and Gift Shop, a supervised vocational rehabilitation workshop for individuals who are physically and/or mentally challenged.
Working with the pliable clay increases and improves strength, flexibility and dexterity, which is particularly beneficial for those who may have limited or impaired mobility or stiffness in their fingers, hands and upper body, Keitsock said.
“It’s also a real good way to build confidence and self-esteem, and a sense of achievement,” she said. “The pottery workshop is one of the many things Avenues employees are learning which will help them seek employment in the competitive work force.”
Approximately 30 adults work in the supervised workshop, which is located in the Avenues building at 2 Park St., Agricultural Park, Pottsville.
Mary Byrne, owner of the Mad Potter, Pottsville, helped the group get started by donating the use of her kiln to fire the molded pieces.
“When I first heard about it, I thought it was an excellent idea,” she said. “Working with clay is very calming, very relaxing; I have customers all the time who tell me that it’s their form of therapy. And it does give a real sense of accomplishment. You’re taking a piece of mud, and turning it into something useful, like a coffee mug or a plate, a bowl. It’s a creative outlet.”
Using their hands to press and shape the clay, the employees design the brown stoneware into ashtrays, bowls, birdfeeders, plates and other functional items.
“Every piece is as unique as each individual,” Keitsock said.
They’re called pinch pots because they’re created by pinching the clay, she said.
Employees in the pottery workshop work on their projects in the activity room, and when the pieces are finished, they’re delivered to Byrne’s shop at 6 S. Centre St., where she fires them in her kiln. The finished work is then sold in the Avenues gift shop.
Many of the employees in the pottery workshop also work in the carpentry and greenhouse occupational therapy program at Avenues.
The greenhouse is named after Lessie Weaver, the late daughter of Mal Weaver Bartram, a founding member of United Cerebral Palsy of Schuylkill, Carbon and Northumberland counties.
The agency was founded as UCP in 1952 by a group of parents, and now serves the diverse needs of people with cerebral palsy as well as many different disabilities, including Down syndrome, autism and pervasive developmental disorder.
When the name was changed to Avenues in 2004, the UCP Greenhouse was renamed as a tribute to Bartram’s daughter, who suffered from cerebral palsy.
In the greenhouse program, Avenues employees learn all types of planting skills, working with greenhouse supervisors and program specialists.
They grow seasonal flowers that they sell to the public during seasonal community sales, as well as balloon bouquets, gift baskets, seasonal items, dried arrangements and other creative items.
In the Trash to Treasures carpentry program employees take apart, refinish and paint old donated items, and transform them into decorative and functional household objects like coat-racks, plant stands, shelves, furniture, bookcases, tables and picture frames.
Through the Creative Hands pottery program, which began last month, employees are learning a new skill that also has therapeutic benefits, said Denise Keitsock, the program supervisor at Lessie’s Greenhouse and Gift Shop, a supervised vocational rehabilitation workshop for individuals who are physically and/or mentally challenged.
Working with the pliable clay increases and improves strength, flexibility and dexterity, which is particularly beneficial for those who may have limited or impaired mobility or stiffness in their fingers, hands and upper body, Keitsock said.
“It’s also a real good way to build confidence and self-esteem, and a sense of achievement,” she said. “The pottery workshop is one of the many things Avenues employees are learning which will help them seek employment in the competitive work force.”
Approximately 30 adults work in the supervised workshop, which is located in the Avenues building at 2 Park St., Agricultural Park, Pottsville.
Mary Byrne, owner of the Mad Potter, Pottsville, helped the group get started by donating the use of her kiln to fire the molded pieces.
“When I first heard about it, I thought it was an excellent idea,” she said. “Working with clay is very calming, very relaxing; I have customers all the time who tell me that it’s their form of therapy. And it does give a real sense of accomplishment. You’re taking a piece of mud, and turning it into something useful, like a coffee mug or a plate, a bowl. It’s a creative outlet.”
Using their hands to press and shape the clay, the employees design the brown stoneware into ashtrays, bowls, birdfeeders, plates and other functional items.
“Every piece is as unique as each individual,” Keitsock said.
They’re called pinch pots because they’re created by pinching the clay, she said.
Employees in the pottery workshop work on their projects in the activity room, and when the pieces are finished, they’re delivered to Byrne’s shop at 6 S. Centre St., where she fires them in her kiln. The finished work is then sold in the Avenues gift shop.
Many of the employees in the pottery workshop also work in the carpentry and greenhouse occupational therapy program at Avenues.
The greenhouse is named after Lessie Weaver, the late daughter of Mal Weaver Bartram, a founding member of United Cerebral Palsy of Schuylkill, Carbon and Northumberland counties.
The agency was founded as UCP in 1952 by a group of parents, and now serves the diverse needs of people with cerebral palsy as well as many different disabilities, including Down syndrome, autism and pervasive developmental disorder.
When the name was changed to Avenues in 2004, the UCP Greenhouse was renamed as a tribute to Bartram’s daughter, who suffered from cerebral palsy.
In the greenhouse program, Avenues employees learn all types of planting skills, working with greenhouse supervisors and program specialists.
They grow seasonal flowers that they sell to the public during seasonal community sales, as well as balloon bouquets, gift baskets, seasonal items, dried arrangements and other creative items.
In the Trash to Treasures carpentry program employees take apart, refinish and paint old donated items, and transform them into decorative and functional household objects like coat-racks, plant stands, shelves, furniture, bookcases, tables and picture frames.
02 August 2008
Pondering the Past, and Guiding Individuals Towards Their Future
Good afternoon ladies and gentlemen, boys and girls. Thank you for inviting me to your school today, and to share with you a part of who I am. This afternoon, I will not only read to you a piece of my autobiographical book,” The Broken Hoof,” but we will move together in rhythm, while teaching, and, I will empower you with some videos of where I have come from and what gifts I’d like to give to all of you. I’d liked to help you learn that “Anything is Possible” if you put your mind towards it.
You are all sitting here before me now, because deep, down inside of your own heart, you believe in yourselves like no one else does or ever has. You believe in your own individuals gifts and talents. And you believe that you are very special, in a very unique way. Each and every one of you, just like me, I’m sure, has had to overcome challenges and extreme difficulties. We all have these difficulties and obstacles, however, not all of us have the courage and strength, to face up to them, accept them, learn from them, grow from them, and change our attitudes in a positive way, while becoming willing to do what ever it takes to reach the goal we desire so badly.
Today, we will find new techniques; new approaches, and new ways to bring about these changes within ourselves, our attitudes, our beliefs, and our lives. We will begin right where we are now. And we will do it with unconditional acceptance and kindness. We will learn to be gentle with ourselves and our feelings. And, we will learn to accomplish our challenges one at a time. Today we will have some fun exploring ourselves with some of these methods.
We as individuals, have the power to change, along with change the world around us, but only if we have that willingness. This willingness within, will take us on marvelous journeys, but only if we trust this power of belief, then and only then will our accomplishments be unlimited.
When I was your age, the young people who surrounded my world, were all disabled. Why, you might be asking yourself? Well, I’ll tell you. When I was five months old, I got very sick. It left me with the paralysis you see today on my left arm and leg. I could not go to a regular school, because I could not learn like other children my own age. I had a learning disability called dyslexia. This learning problem made it very, very, hard for me to read, write, and do math like the other children in my classes. Thus, I had to go to a school that had children with Cerebral Palsy, like me, polio, multiple sclerosis, down syndrome, and other disabilities.
These were the only young people that I knew. So I had to create different ways to learn. I had to motivate myself, and tell myself that I could pass a test. I had to learn to be open minded. I had to learn to believe in myself, and to believe that no matter what my outer appearances looked like, I could change it. I would keep telling myself that I could change my life and the world immediately around me.
The difference in having a disability now, verses when I was a child, was that the educational system did not have the laws that you have today. I was pushed into classes where I was not learning like the other children around me. And when my mother got the first special education teacher, by talking to the principal, I was put in a classroom, behind a screen, to figure things out for myself, while sitting all alone for hours at a time, to fend for myself.
Finding my dance teacher, Al Gilbert, changed my life completely. Through his caring, gentle, and poised composure, I learned by example what it took to give it to myself, and then, eventually to all of you. Everyone of you here today, are here because you want to be here, you want to change and make your life better, and, you want to find and develop your gifts and share them with the world. This is and can be possible. It is all encompassing.
I would like to share a little bit of the journey I took to try to change some of the attitudes about what people with my disability were able to do. I spent a lot of time trying to put together the pieces of the puzzle called learning. Just as dance had made my body and spirit strong, now I was on a quest to find the tools which would unlock the door for me. Inadvertently, I helped unlock the doors for all disabled people.
I understood intuitively, that I would some day have to ultimately care for myself completely. To do that, I needed a good job. To get that job, I needed a higher education. And, I needed to learn all the things I never learned in 12 years of my fundamental schooling. The people, who were supposed to be helping me, sadly didn’t see thing the same way I did. They felt I should settle for something less than I believed I was capable of. To make a long story short, I fought and won the first Civil Rights Case in California, this guaranteed my right to earn an Associate of Arts degree in English and dance. While I was at college, I found helpers who understood my desire to learn all the things I never learned before.
This now led me to succeed in many different areas. I became an adaptive fitness instructor, an advocate, a published author, and a public speaker. My book, which I am going to read from shortly, was published in 2006, but took over twenty years to complete. And, in its infancy, it won second place in the Kaleidoscope Literary Prose Fiction Art award of 1983. I know every one of you has something to offer and give to the rest of the world. It is all about unlocking it. My hope is that my story and my visit here with you today, is the key that unlocks a door of deep desires for you. My other hope is that you find the power within yourself to succeed and the ability to be positive in every way. I hope that by me speaking here today helps you to find the area, the talent, and the gift you so joyously feel within your heart to give and share with the world.
A Long time ago, I found a poem by a famous British amputee; William E. Henley. He lost both his legs at the age of 12. When I first read these words, in college, these words from Maya Angelou sung sweetly in my spirit. Angelou first sees this as a mark of paternalistic contempt. She is held by a white superintendent in school who has just told her class, to be content to be athletes and cotton pickers. She turns it into an anthem or song of praises for our people and hers. It goes like this… “It matters not how strait the gate, how charged with punishment the scroll. I am the master of my fate, the captain of my soul.
I leave you with these sweet empowering words- take them home with you today to conquer and triumph! Make a positive mark on this world and leave a path behind you that no one else has ever left before.
Thank you for allowing me to share this with you, today. I will now answer any questions that you may have or that cross your mind.
You are all sitting here before me now, because deep, down inside of your own heart, you believe in yourselves like no one else does or ever has. You believe in your own individuals gifts and talents. And you believe that you are very special, in a very unique way. Each and every one of you, just like me, I’m sure, has had to overcome challenges and extreme difficulties. We all have these difficulties and obstacles, however, not all of us have the courage and strength, to face up to them, accept them, learn from them, grow from them, and change our attitudes in a positive way, while becoming willing to do what ever it takes to reach the goal we desire so badly.
Today, we will find new techniques; new approaches, and new ways to bring about these changes within ourselves, our attitudes, our beliefs, and our lives. We will begin right where we are now. And we will do it with unconditional acceptance and kindness. We will learn to be gentle with ourselves and our feelings. And, we will learn to accomplish our challenges one at a time. Today we will have some fun exploring ourselves with some of these methods.
We as individuals, have the power to change, along with change the world around us, but only if we have that willingness. This willingness within, will take us on marvelous journeys, but only if we trust this power of belief, then and only then will our accomplishments be unlimited.
When I was your age, the young people who surrounded my world, were all disabled. Why, you might be asking yourself? Well, I’ll tell you. When I was five months old, I got very sick. It left me with the paralysis you see today on my left arm and leg. I could not go to a regular school, because I could not learn like other children my own age. I had a learning disability called dyslexia. This learning problem made it very, very, hard for me to read, write, and do math like the other children in my classes. Thus, I had to go to a school that had children with Cerebral Palsy, like me, polio, multiple sclerosis, down syndrome, and other disabilities.
These were the only young people that I knew. So I had to create different ways to learn. I had to motivate myself, and tell myself that I could pass a test. I had to learn to be open minded. I had to learn to believe in myself, and to believe that no matter what my outer appearances looked like, I could change it. I would keep telling myself that I could change my life and the world immediately around me.
The difference in having a disability now, verses when I was a child, was that the educational system did not have the laws that you have today. I was pushed into classes where I was not learning like the other children around me. And when my mother got the first special education teacher, by talking to the principal, I was put in a classroom, behind a screen, to figure things out for myself, while sitting all alone for hours at a time, to fend for myself.
Finding my dance teacher, Al Gilbert, changed my life completely. Through his caring, gentle, and poised composure, I learned by example what it took to give it to myself, and then, eventually to all of you. Everyone of you here today, are here because you want to be here, you want to change and make your life better, and, you want to find and develop your gifts and share them with the world. This is and can be possible. It is all encompassing.
I would like to share a little bit of the journey I took to try to change some of the attitudes about what people with my disability were able to do. I spent a lot of time trying to put together the pieces of the puzzle called learning. Just as dance had made my body and spirit strong, now I was on a quest to find the tools which would unlock the door for me. Inadvertently, I helped unlock the doors for all disabled people.
I understood intuitively, that I would some day have to ultimately care for myself completely. To do that, I needed a good job. To get that job, I needed a higher education. And, I needed to learn all the things I never learned in 12 years of my fundamental schooling. The people, who were supposed to be helping me, sadly didn’t see thing the same way I did. They felt I should settle for something less than I believed I was capable of. To make a long story short, I fought and won the first Civil Rights Case in California, this guaranteed my right to earn an Associate of Arts degree in English and dance. While I was at college, I found helpers who understood my desire to learn all the things I never learned before.
This now led me to succeed in many different areas. I became an adaptive fitness instructor, an advocate, a published author, and a public speaker. My book, which I am going to read from shortly, was published in 2006, but took over twenty years to complete. And, in its infancy, it won second place in the Kaleidoscope Literary Prose Fiction Art award of 1983. I know every one of you has something to offer and give to the rest of the world. It is all about unlocking it. My hope is that my story and my visit here with you today, is the key that unlocks a door of deep desires for you. My other hope is that you find the power within yourself to succeed and the ability to be positive in every way. I hope that by me speaking here today helps you to find the area, the talent, and the gift you so joyously feel within your heart to give and share with the world.
A Long time ago, I found a poem by a famous British amputee; William E. Henley. He lost both his legs at the age of 12. When I first read these words, in college, these words from Maya Angelou sung sweetly in my spirit. Angelou first sees this as a mark of paternalistic contempt. She is held by a white superintendent in school who has just told her class, to be content to be athletes and cotton pickers. She turns it into an anthem or song of praises for our people and hers. It goes like this… “It matters not how strait the gate, how charged with punishment the scroll. I am the master of my fate, the captain of my soul.
I leave you with these sweet empowering words- take them home with you today to conquer and triumph! Make a positive mark on this world and leave a path behind you that no one else has ever left before.
Thank you for allowing me to share this with you, today. I will now answer any questions that you may have or that cross your mind.
28 July 2008
What Can I Do
This morning I received a Google alert on learning disabilities, and, oh how I wanted to participate and get involved, and work with these people and share with them what I know to enlighten them. However, the position was in England I believed. It was being part of a council and having a voice for all people with LD to make legal changes in our system, and laws, and to help individuals with learning disabilities.
If people would learn to take our word seriously, that would be such a blessing! Not only for all the millions and millions of individuals, but to get real, honest feedback from people who have paid the price mentally, emotionally, or physically, instead of thoughts who have never experienced having a challenge like this at all.
This would be a sincere humbling; if organizations, companies, our government, legislation, and leaders would take a positive step forward to hear our voices and put us on committee's and councils to change the way things are now... It would be a gift to all society and man kind if we were heard and truly listened to.
It would be even sweeter if we were compensated financially for our knowledge and really taken seriously. I personally would fight the good fight to bring all kinds of change to make a huge difference and impact for others as I have done for myself First I would stop categorizing us with people of down syndrome, mental retardation, ADD and so forth. I would also find a much better word to describe us. I would not use degrading, heart-wrenching titles; and labels such as: developmentally delayed or disabled.
I would do all I could to first de-signify people who never chose to be disabled in the first place, or to be labeled. I would start by finding real human ways and approaches to treating us with dignity and respect.
If people would learn to take our word seriously, that would be such a blessing! Not only for all the millions and millions of individuals, but to get real, honest feedback from people who have paid the price mentally, emotionally, or physically, instead of thoughts who have never experienced having a challenge like this at all.
This would be a sincere humbling; if organizations, companies, our government, legislation, and leaders would take a positive step forward to hear our voices and put us on committee's and councils to change the way things are now... It would be a gift to all society and man kind if we were heard and truly listened to.
It would be even sweeter if we were compensated financially for our knowledge and really taken seriously. I personally would fight the good fight to bring all kinds of change to make a huge difference and impact for others as I have done for myself First I would stop categorizing us with people of down syndrome, mental retardation, ADD and so forth. I would also find a much better word to describe us. I would not use degrading, heart-wrenching titles; and labels such as: developmentally delayed or disabled.
I would do all I could to first de-signify people who never chose to be disabled in the first place, or to be labeled. I would start by finding real human ways and approaches to treating us with dignity and respect.
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