Very Cool Iphone App for Communication
I found this excellent video today while researching assistive technology for cerebral palsy and brain injury patients
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Children With Diasabilities get a place to play
In Chicago area this news story of community organizers making a difference. A park designed from the ground up with children with disabilities in mind.
"Accessibility provides opportunity for anyone, but especially for children," said Marilyn Weisner. "This accessible park provides an opportunity for children who are differently abled to play and learn, right alongside other children. And that is an invaluable opportunity."
Go read the whole story at the Chicago Tribune.com
Tweet thisNew Robotic Therapy Helps Children with Cerebral Palsy
Cerebral palsy is a disability that affects an estimated 8,000 babies each year. This neurological condition can have a lifelong impact on the movement and coordination of the body. Due to the nature of this disability and its affect on the brain and muscles, many children who live with cerebral palsy require a wheelchair or walker to move around. Not only is this technology helping kids move in a more normal fashion, but according to researchers it’s also helping kids with cerebral palsy feel more confident.
Little Girl Benefits From Technology
Jenna Culleeney was born with bleeding in her brain, which caused her to be born with the disability, cerebral palsy. At sixteen weeks she reportedly weighed a mere pound and a half. After having surgery to break and re-set her legs, she was still having trouble to walk says her mother, Nannette.
To help Jenna walk the therapists at Shriners’ Hospital for Children strapped her into a robotic machine that has recently been shown to help children with the disability balance and find a way to walk that works for them. The legs of the machine have been specially designed for children’s legs.
Therapy Details
The machine enables children to repeat the same motion on a consistent basis. This helps their muscles become stronger and even increases their endurance. There are currently six centers across the United States that are using this type of robotic therapy for children with the cerebral palsy disability.
Recycled Goods Used for Therapy
Making crafts has long been used by occupational therapists to help patients with mental and physical disabilities. Well what better way to create various objects through therapy than with various recycled goods? At the recycling therapist you can find different ways to be creative with your patients with the use of recycled materials.
Oftentimes patients aren’t willing to talk openly about a disability they may have. Or they can be in denial and be not willing to share any information about the challenges they face and in some cases, they may be unable to verbally communicate their problem. But through crafts their physical therapist is able to detect any disabilities or any issues that could be hindering their ability to lead a normal life.
The movements an individual makes when creating something can show a great deal about their neurological and sensory capabilities. Arts and crafts can also give clues about a person’s motor skills.
As a physical therapist when you use recycled goods to work with patients it not only helps with a disability but it can also do a great deal of good for the environment. The materials that are best to use are easily collected, free, and can be used in many unique and versatile ways to create a wide range of things. Not only can you create almost anything with recycled goods, but the products can be used over and over so your patients will have fun while working with them and feel rewarded in the end. The activities talked about throughout the blog are catered more towards adults with disabilities, but overall these crafts can be put together by those of all ages to help improve their fine and gross motor skills. There’s no need to waste money and materials to create with, use recycled goods and treat your patients and the environment well!
For more information on fun activities for those with disabilities, please visit www.kinderart.com
Hippotherapy Helps Treat the Disabled
Hippotherapy is a unique treatment that can be used to help both children and adults with a variety of physical, emotional, and communication disabilities. This technique uses the movement of the horse to help with neurological function and sensory processing for those with cerebral palsy, autism, multiple sclerosis, traumatic brain injuries and more. Hippotherapy is a treatment relies heavily on the actual movement of the horse through therapeutic riding.
How Does Hippotherapy Differ from Therapeutic Riding?
So you many be wondering, how does hippotherapy differ from therapeutic riding? Both of these activities rely on a horse’s movement to stimulate physical, mental, and emotional growth. However, each form of therapy is unique.
Therapeutic Riding is typically taught by a NARHA Certified Instructor and is conducted in a group or private setting. This form of therapy is formulated around teaching the riders to control their horse through various activities that help encourage the development of cognitive, physical and social skills. Therapeutic riding is commonly conducted in a group setting and is organized according to age, type of disability and level of riding skill.
Though hippotherapy is similar to therapeutic, there are some main differences. Hippotherapy is instructed by a licensed speech and language therapist, physical therapist, or occupational therapist. It is important that the therapist who is instructing the session is registered with the American Hippotherapy Association (AHA). He or she should also be a NARHA Certified Instructor. The rider works one-on-one with the therapist, which allows for more personal direction and attention. This way the therapy is also specifically directed at the rider’s individual needs and goals.
To get started with hippotherapy talk with your doctor or a therapist about the options available to you in your community.
For more information on hippotherapy and its benefits, visit www.americanhippotherapyassociation.org
Therapies to Treat Cerebral Palsy
Although no cure for cerebral palsy has been found yet, there are various treatments and different therapies that can help improve the lives of those living with the disability. Two forms of therapy that have been proven to help patients with cerebral palsy are hippotherapy and creating crafts.
Hippotherapy is a specialized treatment that can be beneficial to both children and adults who are living with various physical and emotional disabilities. This type of therapy is also unique in the fact that it can help those with speaking and language disabilities. Hippotherapy uses the way a horse moves while walking to help with neurological function and sensory processing. It can help those living with cerebral palsy, autism, multiple sclerosis, traumatic brain injuries, psychological disorders and more. Unlike other forms of therapy that use horses, hippotherapy doesn’t teach patients riding skills as part of their treatments. Instead, it is dependent on the actually pelvic movement of the horse as it walks to help an individual. To learn more about hippotherapy, visit http://www.horseot.blogspot.com.
Another form of therapy that is widely used on those with cerebral palsy by therapists is the art of craft making. Those with cerebral palsy can’t always verbalize how they’re feeling or specify what challenges them most in their day to day lives. But through activities like making crafts, physical therapists are able to detect these challenges and work on improving them. When someone is creating something their movements can show a great deal about their neurological and sensory capabilities. It can also give clues about the level of a person’s motor skills. To learn more about this form of therapy and how you can create crafts using recycled materials visit http://www.recyclingot.blogspot.com.
Both of these therapies can not only help patients living with cerebral palsy, but they can also be beneficial to those living with multiple sclerosis, brain injuries, autism, and a variety of other disabilities and physical and mental illnesses.
Resources for Cerebral Palsy Caregivers
Parents and others who care for a cerebral palsy child often forget to take care of themselves. However, it’s important for caregivers to care for their own well-being – to receive for themselves the care, support, and encouragement they so selflessly give to their child.
There are numerous resources available for caregivers. One particularly notable resource for family caregivers is the National Family Caregivers Association, or the NFCA. The group’s website helps to connect caregivers, as well as provide them with resources such as:
- Tips and tools
- Organizations and agencies with information on insurance, respite and training for caregivers
- Advocacy information
- Newsletters and other publications related to caregiving
- Educational resources
- More
Check out the NFCA website to see all that it has to offer.
What's New in Disability Activism?
If you’re the parent of a cerebral palsy child or a child with disability, it’s a good idea to stay up-to-date on legislative decisions that may affect your child’s education, health care, and future in general. The American Association of People with Disabilities (AAPD) is a great starting point to find out what’s being done for disability rights – and it’s a great starting point for becoming an activist for your child.
Below are some recent news and highlights from the disability community:
- Confirmation hearings for Judge Sonia Sotomayer’s appointment to the U.S. Supreme Court begin on Monday, July 13, 2009. A coalition of disability groups has spoken out in support of Judge Sotomayer, who has a history of justly deciding disability cases.
- President Barack Obama nominated Alexa Posny for Assistant Secretary for Special Education and the Senate confirmed disability rights leader Kathy Martinez as Assistant Secretary of the Office of Disability Employment Policy (ODEP).
- Representative Ed Markey (D-MA) introduced the 21st Century Communications & Video Accessibility Act of 2009, which seeks to ensure that Internet video and telecommunications are accessible to people with disability.
- July 26, 2009 marks the 19th anniversary of the passing of the Americans with Disabilities Act (ADA). The AAPD plans to celebrate this landmark Act on July 22.
To learn more about cerebral palsy or disability activism, visit the AAPD website or United Cerebral Palsy.
Registration Open for 63rd Annual Meeting of the AACPDM
The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) will be holding its 63rd annual meeting in Scottsdale, Arizona in September. The meeting is open to healthcare professionals, special education teachers, and anyone else who is interested or involved in the care of a cerebral palsy child.
The theme of this year’s meeting is Frontiers of Innovation: Combining Technology and Therapy to Improve Outcomes and will feature (among other things):
- Lectures and paper presentations
- Debates
- Vendor exhibits
- Breakfast with the experts
- Specialty sessions
To find out more about the meeting or to register to attend, visit the AACPDM website.
Coalition Fights for Accessible Technology
Laws intended to make technology more accessible to individuals with disabilities like cerebral palsy, hearing problems and paralysis, for example, are rapidly being outdated because of the rate at which technological advances are made. To make sure legislative and regulatory safeguards keep pace, a coalition of more than 230 organizations was founded.
COAT is the Coalition of Organizations for Accessible Technology and it has two primary areas of advocacy – communication and video programming access. Specific issues the group is concerned with include:
- Ensuring 911 calls can be made with Internet and video communications
- Extending telephone relay service (TRS) obligations to Internet-based providers
- Making sure Internet-based communications products and services are accessible
- Extending closed-captioning regulations to Internet-based video programming
- Requiring accessibility features on video programming devices
Accessible technology is important in our increasingly Internet-driven and technological world. If you would like to learn more about current laws on accessible technology and what’s being done to change these, visit the COAT website.
RESNA Annual Conference This Week!
From June 23rd through the 27th in New Orleans, RESNA (the Rehabilitation Engineering and Assistive Technology Society of North America) will be holding its annual conference. The conference is open to anyone interested in issues related to assistive technology (AT) and disability, and it’s a great opportunity for parents of cerebral palsy children to learn more about the latest advances in this field.
Assistive technology is aimed at improving the lives and potential of people with disabilities, and RESNA’s mission is to promote research, development and education to this end. The society’s annual conference features workshops, instructional courses, product demonstrations and much more.
Learn more about the event by visiting the RESNA website.
Conference Report Details Developments in CP Care
Healthcare options for children and adults with cerebral palsy are always evolving, and a new report details some more recent developments. The report, which primarily focuses on the use of orthotics (devices intended to support or correct musculoskeletal deformities), is a helpful resource for parents and others looking into cerebral palsy health services. It includes:
Manuscripts of papers presented at the recent conference of the International Society for Prosthetics and Orthotics (ISPO). Paper topics ranged from classification of cerebral palsy to surgical intervention, physiotherapy and orthotic management.
Conference background
Conclusions and recommendations
If you are interested in downloading the report, it’s available free of charge from the ISPO website.
Exceptional Parent Magazine Goes Digital
Exceptional Parent (EP) magazine is a great resource for parents of children with cerebral palsy or other special needs, and it’s even better now that it’s gone digital. The first issue is complimentary and is now available online.
Though a limited number of hardcopy magazines will still be printed, the online version features some special benefits including:
- Streaming audio/video
- Virtual page-turning, so it’s like flipping through a hardcopy magazine
- Bookmarking capabilities
- High quality images with zoom function
- No download wait times
- Keyword search
- User interface customization
- Earth friendly
The inaugural issue contains articles sports, disability living, travel and much more. Check it out at www.eparentdigital.com.
Summer is the Perfect Time for Aquatic Therapy
Now that the weather is warming up, it’s the perfect time to think about aquatic therapy. There are many benefits to aquatic therapy for people of all ages and abilities, but it is particularly beneficial for helping children manage their cerebral palsy symptoms in a fun and active way.
What is Aquatic Therapy?
Essentially, aquatic therapy involves any type of cardiovascular or conditioning exercises that are done in the water – usually an indoor or outdoor pool. Aquatic therapy is naturally low impact and the buoyancy of the water serves as a support for weakened limbs and other body parts. For children with cerebral palsy, the benefits of aquatic therapy include:
- Improved muscle strength and tone
- Improved self-esteem
- Increased flexibility, balance and coordination
In addition, aquatic therapy provides a source of recreation and socialization for kids with cerebral palsy. And it’s not necessary for the child to know how to swim since therapy can be done in shallow water or with the use of flotation devices. There are also assistive technologies that make water activities more accessible to people with disabilities. Visit ABLEDATA to see a list of assistive devices.
Education News for the Cerebral Palsy Community
It’s that time of year when parents are looking at education opportunities, alternatives and colleges for their cerebral palsy child. Education for the disability community has been in the news quite a bit recently, and we’ve come across a few articles we’d like to share. Some are purely informational and others are great resources.
Disability-Specific Scholarships on Disaboom – a listing of scholarships for disabilities ranging from visual to physical
Special Education Receives Major Funding Boost on eParent.com – regarding education appropriations under the newly passed economic stimulus bill
Introducing the New Google Lime Scholarship on Google’s blog – for students with disabilities pursuing university degree’s in computer science.
Justices Hear Case on Tuition for the Disabled from the New York Times – regarding what parents must do to get their child’s special education at a private school paid for with taxpayer money
What You Missed: Cerebral Palsy Conference Review
This year’s United Cerebral Palsy (UCP) Annual Conference – Growing an Agile Potent Network – was held in San Francisco last weekend. In case you weren’t able to make it, UCP is helping you to catch up on what you missed.
The group’s blog (UCPeople.org) features several posts which overview the weekend’s events, sessions and current trends, including:
- Award for Excellence winners
- Siblings as caregivers
- Emerging technologies
- Social networking
- Legislative priorities
- More
UCP is a great resource for parents of a child with cerebral palsy or other disability. The organization is national with local affiliates across the country. If you have a cerebral palsy child, you can learn more about the condition, additional resources, advocacy and much more by contacting your local UCP affiliate.
Interested in Summer Camp for Your Cerebral Palsy Child?
Summertime is approaching, and many parents are considering camp opportunities for their children. There are camps across the country that cater their programs to children with cerebral palsy and other disabilities. Below are a few resources that can help you in your search to find the best summer camp for your child:
Parenting Special Needs article on summer camps – provides detailed descriptions of various camps from Florida to Texas and California
UCP Listing of Summer Camps – offers comprehensive camp guides as well as information on individual camps
Very Special Camps – a website devoted to providing information on camps and programs for people with special needs. Camps can be searched according to a specific disability.
Easter Seals Residential and Day Camps – by contacting the organization through their website, you can learn more about Easter Seals camps across the U.S.
In our search for resources, we also came across two individual camps geared toward children with cerebral palsy: Shady Oaks Cerebral Palsy Camp in Homer Glen, Illinois and Camp Jabberwocky in Martha’s Vineyard. We think their sites might be worth checking out as well.
Overcoming Cerebral Palsy Symptoms: Check out an Abilities Expo near You
Abilities Expo is a vast tradeshow geared at improving the lives of people with disabilities and those who care for them. For individuals with mild to severe cerebral palsy symptoms, the show offers a peek at some of the latest cutting-edge technology as well as seminars and workshops that address a variety of disability issues.
The Abilities Expo is a 3-day event that will take place in:
- The New York metro area from April 17-19
- Southern California from May 29-31
- Chicago from June 25-27
- Atlanta from November 5-7
Admission to the event is free and visitors will have the opportunity to learn more about wheelchairs and other assistive technologies, travel services, daily living aids, home medical equipment, legal services and much more. In addition, the show will feature a family-oriented seminar and other special events.
To register for a show near you, visit the Abilities Expo website.
Keeping Your Cerebral Palsy Child Safe in the Car
Children with cerebral palsy sometimes require special accommodations, and many parents wonder how they can accommodate their child in the car. A new blog post by United Cerebral Palsy addresses this issue and provides a number of helpful resources, including:
- The American Academy of Pediatrics
- The Automotive Safety Program
- Easter Seals/Goodwill of Central Ohio
Go to the UCP blog, or learn more about Cerebral Palsy by checking out our ‘What is Cerebral Palsy’ page.
Vision Loss in Children with Cerebral Palsy
According to My Child without Limits, nearly two-thirds of children with developmental disabilities such as cerebral palsy, mental retardation and epilepsy also suffer from vision loss. The more severe the visual impairment, the more likely are additional health complications and delayed learning.
However, there is training and therapy available. If your child suffers from this particular cerebral palsy symptom, you may want to look into the following resources:
Family Connect, a site for parents of children with visual impairments
American Association of Pediatric Opthamology and Strabismus - AAPOS
Prevent Blindness America - Children's page
United Cerebral Palsy, My Child without Limits and the Easter Seals are additional organizations that may be able to assist you in your search for vision impairment resources.
Resource Find: Forms for Staying Organized
Staying organized is one of the greatest challenges caregivers and parents of special needs children face. Recently, one of our medical attorneys came across a great resource that can help families stay organized – a series of forms developed by United Cerebral Palsy that can be used for anything from doctor’s visits to notes for the babysitter.
The forms can be downloaded as PDF files from www.mychildwithoutlimits.com and include:
“All About Me” form – which you can give to your child’s school (teacher, nurse, counselor, etc.) or to a babysitter when you need a break
“Just in Case” sheet – for making sure emergency information is easily accessible to anyone who needs it
“Trip to the Doctor” form – to prepare for and keep track of doctor’s appointments
“Contact Sheet” – for keeping a record of phone calls made regarding your child’s care
“Medication Listing” form – for documenting the types of medication your child requires, when, how much, etc.
UCP Supports Inclusive Home Design Act
The national disability advocacy organization United Cerebral Palsy (UCP) is one of more than 20 groups coming together to support the much needed Inclusive Home Design Act. The Act is designed to increase accessibility in homes built with federal assistance.
Parents of children with severe cerebral palsy symptoms or other mobility issues know all too well the difficulties associated with finding accessible (and affordable) homes. Less than five percent of new homes built with federal assistance include features aimed at making them more accessible for people with mobility impairments to visit and live in.
The Inclusive Home Design Act seeks to change that by increasing the number of accessible homes built with federal money.
“Universal standards for homes built with federal money are long past due. Implementing accessible features when homes are built is a simple matter of fairness, cost effectiveness and common sense,” said Rep. Jan Schakowsky of Illinois, who introduced the legislation.
Accessible Features
If passed, the legislation will only affect new homes and will not cover renovations to existing homes. The bill will also require that new homes also meet a number of accessibility criteria, including:
- Widen doorways on the main floor for a greater space of passage
- Feature at least one “zero step” entryway and one wheelchair accessible bathroom on the ground floor
- Make controls for lighting and temperature reachable from wheelchair heights
Such modifications are relatively inexpensive (usually less than a few hundred dollars) when done at the time the house is built, as opposed to making renovations at a later point, which can cost upwards of several thousand.
Some states and cities have already adopted inclusive housing standards: Texas, Vermont, Kansas and certain cities in Illinois and Arizona.
Technology and Disability Conference Is Approaching
California State University Northridge (CSUN) is holding its 24th Annual International Technology and Persons with Disabilities Conference from March 16th-21st in Los Angeles. This year’s conference will focus on trends in assistive technology (AT) and will feature Keynote Speaker Anthony Coelho, the former U.S. Congressman who sponsored the American with Disabilities Act.
Assistive technology is basically anything that helps persons with disability in their daily lives. Wheelchairs, communication devices and similar aids are common examples of assistive technologies. For children and adults with cerebral palsy, there are many types of AT that can help individuals better manage their symptoms.
Registration is currently open – visit the CSUN website to learn more.
Celebrate Cerebral Palsy Awareness Month
Did you know that March is Cerebral Palsy Awareness Month? You can celebrate by raising awareness in your local community. There are various ways you can spread the word about cerebral palsy, including:
- Coordinating outreach events
- Submitting letters to the editors of local publications
- Blogging about the condition
In addition, you can contact your local United Cerebral Palsy (UCP) affiliate to find out when and where any special events are being held. If you live in the Atlanta area, you might want to consider attending an event sponsored by the Centers for Disease Control and Prevention (CDC) on March 20th.
Cerebral Palsy Group Launches New Website
United Cerebral Palsy (UCP) is a national CP association that has recently launched a new website aimed at helping families and professionals in four ways:
- to better understand developmental disabilities like cerebral palsy;
- to provide guidance with regard to early intervention services;
- to act as advocates for those with developmental disabilities; and
- to connect people through a social networking community.
The website is called My Child without Limits and in addition to the four main goals listed above, the site also features tips, news and resources.
Need Help Purchasing an Accessible Vehicle?
Purchasing an accessible vehicle for your cerebral palsy child or modifying your current vehicle to make it more accessible are both expensive undertakings. However, there are several avenues of possible financial assistance available to parents and caregivers.
Potential resources are listed in a great new feature on United Cerebral Palsy’s blog. The weekly feature is known as Ask Lara, and some of the resources she lists include:
- State Assistive Technology Programs
- Medicaid Waivers
- PASS Program for SSI beneficiaries
To see Lara’s full list of resources, click here.
Want to Know More about Tissue Banking for Cerebral Palsy?
The Cerebral Palsy International Research Foundation has created a new fact sheet on the topic of “Brain and Tissue Banking for Cerebral Palsy Research.” The sheet provides a brief summary of what tissue banks are and why they’re important for research into developmental disabilities like cerebral palsy.
If you want to know more about tissue banking, we think this fact sheet is a great place to start. Check it out.
Harnessing the Power of the Internet for Special Needs Kids
Our medical lawyers are always on the lookout for great new resources to share with parents of kids affected by cerebral palsy, and we recently came across a website called Parlerai. The site was created last year by the parents of a young girl with special needs, and its aim is to improve communication and collaboration among caregivers.
Taking care of a child with special needs can be a full-time job in and of itself, and the burden is on parents to make sure the lines of communication are open among all their child’s care providers. This is not always an easy task, a fact both Jon and Kristin Erickson soon realized after the birth of their daughter.
That’s why they decided to create Parlerai – to help others like themselves create a secure network of family, friends and healthcare providers in the interest of fostering increased collaboration and communication.
Parlerai offers a variety of affordable services for families, including:
- A closed and secure network for you, your child and anyone involved in your child’s life – features a database for parents to store documents, pictures, etc.
- A shared media library
- A calendar/scheduling function
- Alerts for urgent messages
- Blogs and instant messaging
To learn more about all this site has to offer, click here.
Caregivers Often Don't Get Relief They Need
Caring for a child with cerebral palsy or other special needs condition isn’t always easy, and often requires the use of complex technology and the management of multiple medications. Given the demands they generally face on a day-to-day basis, it is not uncommon for caregivers to neglect themselves.
The American Academy of Pediatrics suggests that support systems are in position to help caregivers of special needs children, and respite care is a type of help for caregivers that provides them with temporary relief from their duties.
Yet a new study suggests that nearly one quarter of caregivers for special needs children do not receive the respite care they need and deserve.
"These parents have to go through so much. They do it with a lot of love. But caregiving is not an easy task, and families need help caring for their children with special needs," said Dr. Savithri Nageswaran, lead researcher of the study.
Reasons cited for unmet respite care needs include:
- Lack of services available
- Transportation issues
- High cost
Lack of awareness of support services
The study also showed that caregivers of children with severe functional limitations and unstable health conditions had greater unmet needs than caregivers of children in stable health and without functional limitations.
If you are a caregiver to a child with cerebral palsy or other special needs, it’s important to understand that help is available. Check out our cerebral palsy resources page for more information.
What Is Cerebral Palsy? - New Podcast Provides Answers
If your child has been diagnosed with cerebral palsy, it’s likely you have lots of questions – the first of which is undoubtedly “what is cerebral palsy?” There are lots of great resources on the Web to help you answer this question, including a new podcast on the Centers for Disease Control and Prevention website.
The CDC podcast describes the causes, preventions, types, and signs and symptoms of cerebral palsy and is part of one organization’s efforts to raise cerebral palsy awareness. That organization, Reaching for the Stars, has also partnered with the CDC to add a new cerebral palsy fact sheet to the agency’s website.
We recommend both the CDC and Reaching for the Stars websites as good starting places for learning more about CP and ways to get involved in raising awareness.
Cerebral Palsy: Activism & Public Policy
There are perhaps no greater advocates for children who have received a cerebral palsy diagnosis than their parents. Two significant ways parents can help their children are through:
Activism – raising disability and CP awareness; and
Public policy – understanding how it affects children with disabilities such as cerebral palsy and advocating for change where needed.
Where to Get Started
United Cerebral Palsy is a national organization with local affiliates across the country dedicated to promoting change and progress for individuals living with disability. UCP is a great place for parents who are looking to get involved in activism and public policy to start.
The UCP website features a Public Policy Action Center, with information on advocacy campaigns, and a Public Policy Calendar for those interested in staying current. In addition, the UCP blog posts weekly policy updates.
Another helpful resource for parents who want to get more involved is JFActivist, which is a blog on public policy by two groups: the American Association of People with Disabilities and Justice for All. The blog provides information on current affairs, important issues, opportunities for action and much more.
All of these sites are good starting points for parents who wish to be the best advocates they can be for their cerebral palsy child.
Is Assistive Technology Out of Your Financial Reach?
Given the tremendous impact assistive technology can have on the lives of children and adults with cerebral palsy, it’s unfortunate that the devices are often out of reach financially for many families. One cerebral palsy resource families may want to look into is the Bellows Fund.
The Bellows Fund is named after Elsie S. Bellows, who in 1995 left money to United Cerebral Palsy (UCP) to provide assistive technology funding to families that demonstrate financial need. Families with a special need child and individuals with disability may apply for a grant from various UCP affiliates nationwide.
Grant money must be used to purchase approved assistive technology devices, defined by the government as:
Any piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain or improve functional capabilities of individuals with disabilities.
Items that qualify as assistive technology under this definition include:
- Wheelchairs
- Hearing/visual aids
- Van lifts
- Computer equipment
To learn more about qualifying for a Bellows Fund grant, contact your local UCP affiliate. If your affiliate does not offer the grant, you may wish to encourage them to apply for funding.
Support United Brachial Plexus Network on Facebook
If brachial plexus awareness is a cause you care about, you can now show your support and raise awareness on Facebook. The United Brachial Plexus Network is one of many causes Facebook users can support, and the group currently has about 200 members.
Facebook users who join the cause can participate in discussions, connect with others who are trying to raise awareness, follow UBPN fundraising goals, and even make donations. It’s also possible to share your cause with others.
There’s also an Erb’s Palsy Awareness cause on Facebook, which has become one of the world’s most popular social networking sites with more than 150 million users across the globe.
If you have a Facebook account, you may want to check out these and other causes you’d like to support. You can also find us on Facebook here.
Trouble Keeping Your Medical Records Organized?
Maintaining accurate medical records on your child is a must. However, record keeping tends to become more difficult when the child has a condition such as cerebral palsy. This is because children with special needs spend more time at the doctor’s office and often see multiple specialists.
Organizing medical records can help you give your child the best care possible. It will allow you to provide doctors with an accurate timeline of diagnoses, treatments and procedures your child has undergone, and in this way, you can help your child’s medical providers coordinate their efforts.
So how do you keep track of your child’s medical history? In the current issue of Parenting Special Needs online magazine, one mother shares the secrets that have worked for her. The article even includes a downloadable PDF for recording the contact information of your child’s providers.
If you haven’t already developed a record keeping system of your own, this looks like a good place to find some useful advice and get started.
Cerebral Palsy Resource Find: Informational Videos
We’re always on the lookout for helpful cerebral palsy resources, and we recently came across some informational videos on The Christopher and Dana Reeve Foundation website. The foundation has produced videos on topics including:
- Caregiving
- Recreation
- Therapeutic Horseback Riding
- Accessibility and Adaptive Equipment
- Health
- Quality of Life
- Active Living
- Much more!
The videos range in length from about two to 15 minutes, making them quick and easy to fit into your schedule and share with others. The site also features blogs, community forums, a newsletter and a free inter library loan program. Check out some of the site’s resources here.
Assistive Technology Conference Later This Month
The Assistive Technology Industry Association is celebrating its 10th annual conference in Orlando on January 28-31. Anyone interested in learning more about assistive technology is invited to attend, and it’s a great opportunity for parents of children with cerebral palsy to talk to leading AT vendors and have some of their questions answered.
Kids are welcome too, and for those with disability, it’s a chance to get some hands-on experience with new technologies. Some of the products and technologies to be featured at the conference include:
- Learning and literacy aids
- Computer access
- Communication devices
- Vision and hearing aids
- Games
- Adaptive devices and accessories
Families can use the conference to network, share ideas, attend educational sessions and talk to professionals in fields ranging from medicine to education. Those who wish to attend can register online. A registration fee applies, but the conference is free to the public during certain times (a pass can be printed from the site).
Further information about the conference can be found here.
Bookshare.org Benefits Kids with Disabilities
Does your child have trouble holding books because of cerebral palsy? Does he or she have visual impairments or a learning disorder such as dyslexia? Then you might want to check out Bookshare.org. It’s a great resource for people with disabilities, particularly students, who are unable to read standard print.
Bookshare.org offers a free online library to U.S. students who qualify. The library features wide range of books – including children’s books, bestsellers and even textbooks – in accessible formats like Braille Refreshable Format (BRF) and DAISY (synthesized speech).
New books are added to Bookshare’s library by member submissions, which are scanned by volunteers and made available to other members. Those who do not qualify for a free membership can join as a paid member as long as they meet the eligibility requirements.
Anyone can search Bookshare’s library online, and the website offers free webinars for people who want to learn how book sharing works.
Project Creates Possibilities for People with Disabilities
New technologies improve lives and enhance functioning in kids and adults with disabilities such as cerebral palsy. The founders of Project: Possibility understand this and have made it their mission to empower those in the disability community by making the world more accessible with innovative software solutions.
All of the software developed by the organization is open source and free to anyone who wishes to use it. Some of the group’s projects have involved software development in areas such as:
- Education
- Mobility
- Video gaming
- Music and Web access
Project: Possibility encourages the sharing of ideas and participants in the various projects include engineers, artists, educators, university students and people with disabilities. If you have an idea or would like to contribute to a project, visit the group’s website and learn more.
Oral Hygiene Tips and Resources for Children with Cerebral Palsy
Good oral hygiene is particularly important for children with cerebral palsy, who often experience a range of dental issues. For instance, kids with cerebral palsy tend to suffer from the following:
- Poor dental alignment
- Dental erosion caused by gastroesophageal reflux and/or vomiting
- Gingivitis caused by certain medications, especially seizure drugs
- Damaging oral habits such as teeth grinding, regurgitation, compulsive eating of non-edible substances and pouching (holding food in the pocket between the teeth and cheek for prolonged periods)
Good Oral Hygiene Starts at Home
One of the best ways of preventing oral health problems is by practicing good oral hygiene at home. The following are a few tips for taking care of your child’s teeth at home:
- Make sure to brush your child’s teeth after every meal and each dose of medication, which almost always contain sugar.
- Use a toothpaste approved by the American Dental Association
- Support your child’s head while brushing, and be sure to give lots of praise
- Provide your child with a healthy, low-sugar diet
- Take your child in for regular teeth cleanings and evaluations
Finding a dentist who specializes in the care of special needs patient is not always easy, but it will make a significant difference in the level of care your child receives. Children with cerebral palsy tend to have special needs when it comes to dental care: Some kids may need to be treated under general anesthesia, and others who have severe gag reflex may require special dental radiographs. Also, there may be special considerations for fillings and bridgework.
The National Foundation of Dentistry for the Handicapped, the Special Care Dentistry Association and the Association of State and Territorial Dental Directors are all great resources for those needing to locate special dental services in their area.
Assistive Technology Ideas Posted on Blog Carnival
A few weeks ago, we posted a blog about Lon Thornburg’s “Assistive Technology Blog Carnival.” At the time, he was asking for assistive technology gift ideas for people with special needs like cerebral palsy.
The results are now in – Find out what AT tools and gift ideas bloggers and blog readers are talking about this year by visiting the Holiday Gift Edition of the AT Blog Carnival.
Scholarships Awarded to Young Adults with Hemiplegia
The Children’s Hemiplegia and Stroke Association (CHASA) recently awarded $8,000 in education scholarships to young adults with hemiplegia, a type of cerebral palsy characterized by paralysis on one side of the body.
CHASA established a scholarship fund in 2007 in the name of Megan Chesney, a teenage girl who has helped raise money for the cause since she was six years old. Since 2005, Megan has organized a walkathon for her birthday celebration, asking for donations instead of presents.
Last year, Megan raised over $8,000 for the scholarship fund with her birthday walkathon event. The money was awarded in November to help young adults pay for college and trade school. Each of the recipients was diagnosed with hemiplegia as a child.
The scholarships are awarded annually, and the deadline for scholarship applications is March 1, 2009. Read about scholarship guidelines and eligibility information here.
Is Your CP Child Interested in Playing a Sport?
Just over a decade ago, the U.S. Department of Education reported that 95 percent of children with physical disabilities like cerebral palsy were prevented from full access to sports programs. While there have been efforts to change this fact, much still needs to be done. That’s where the American Association of Adapted Sports Programs (AAASP) comes in.
What is the AAASP?
Understanding the importance of school-based sports in the educational process, the AAASP created a model of interscholastic athletics geared toward students with disability. The adaptedSPORTS™Model is school-system based and:
- Establishes guidelines for participation, implementation, compliance and standardization
- Administers coach training and certification
- Develops rules of competition for each sport
Member programs are required to adhere to a schedule of seasonal sports, including wheelchair handball in the fall, wheelchair basketball and power soccer in the winter, and track and field, beep baseball and wheelchair football in the spring.
To learn more about the AAASP and member programs, visit the organization’s website at www.adaptedsports.org.
Book Offers Tips on Pediatric Surgery for Parents
Treatment options for children with cerebral palsy, Erb’s palsy and similar physical disabilities may include surgery. However, the decision to put your child through surgery can be a stressful one fraught with uncertainty, and this is especially true if the surgery involves a new technique.
Many parents are drawn to innovative procedures, particularly if those procedures offer new hope.
Still, there are a number of important considerations for parents. Understanding this, Dr. Armen Ketchedjian has written a book entitled Will it Hurt? A Parent’s Practical Guide to Children’s Surgery.
In his book, Dr. Ketchedjian offers some helpful tips and guidelines for parents who are considering a new surgical procedure for their child, including:
- Research the new procedure in credible medical journals
- Talk to the parents of children who have previously undergone the procedure
- Join a support group related to your child’s condition
- Visit the facility prior to surgery
“The more parents know, the better off they’ll be. New technologies and procedures are being developed all the time, so parents have a lot to learn in a short amount of time following a child’s injury,” he said.
Institute Offers Support to Families of Children with Disabilities
The Siskin Children’s Institute, headquartered in Tennessee, offers various kinds of support to families of children with disability, including research help, information on community resources, and workshops and education classes – all free of charge.
If you are a parent of a child with cerebral palsy, you may wish to check out Siskin’s:
- Free Online Library: The Institute features an online library where parents can go to find over 5,000 resources on disability topics such as cerebral palsy and autism.
- Education Programs: Through the Institute’s Center for Outreach and Adult Education, parents and families can attend free workshops led by therapists, special educators and other professionals. The Center also hosts free education series on topics ranging from disability awareness and parent advocacy to early childhood education and autism.
- Community Resources: Families can contact the Institute’s family support and resource coordinator to find assistance in their local communities.
Visit the Siskin website to learn more about how the Institute’s team of professionals can help you.
Tweet thisNew Children's Book Teaches Acceptance of CP
Children with physical limitations such as cerebral palsy face unique challenges once they reach school age. Perhaps the greatest of the challenges is overcoming difference to gain the acceptance of their peers. This is the challenge 8-year-old Zack faces as he embarks on a new year of school.
In her debut book, Do You Know How I Feel?, Zofia Kaczmarek tells the story of a young boy with cerebral palsy whose excitement over the first day of school is quickly replaced by disappointment. The story explores the social challenges of living with disability and issues of difference and acceptance.
Kaczmarek was inspired to write the book after working on a practicum as a special education assistant. She, too, lives with permanent disability as a result of a car accident in 2005.
Need Financial Assistance Caring for Your CP Child?
These are difficult economic times for many families across the country, especially for those trying to provide for a child with cerebral palsy or other special need. Medical care, housing, transportation, assistive technology — these are just a few of the things families of special needs children must budget into their finances.
However, it’s not just families who are suffering. Some state and local governments, and many charitable organizations are also feeling the strains of the current economic crisis, and this has led to some cutbacks with regard to the aid they are able to provide to the special needs community.
If you have a child with cerebral palsy and are experiencing financial difficulties, you may be eligible for help from the federal government. The website USA.gov provides information on government loans, grants, aid and other forms of financial assistance. It might be worth your while to look into.
Submit Your Holiday Gift Ideas to the AT Blog Carnival
Assistive Technology Blog Carnival is a blog hosted by educator and AT specialist, Lon Thornburg, and he’s asking you to submit ideas, reviews, and stories about your favorite tech gadgets. The goal is to post a “carnival” of ideas for people to use this coming holiday season.
Children with cerebral palsy or other special needs often benefit from assistive technologies – technologies that facilitate learning, mobility, and enjoyment of life. Assistive technologies include gadgets ranging from video games and specialized computers to movement and speech tools.
If you’re a parent of a special needs child and you have thoughts to share about a particular AT item, post a submission by December 12th. Low-cost or inexpensive suggestions might be especially useful for those experiencing financial hardship.
For those looking for gift ideas, suggestions for the holiday AT Blog Carnival will be posted on December 15th.
Project Serves Military Families of Children with Disabilities
Military families face unique challenges, and these challenges are often compounded when a member of the family has cerebral palsy or other special need(s). Because military families are required to move frequently, continuity of care is perhaps chief among the challenges faced by these families.
Navigating education laws and finding healthcare specialists is no easy task when moving from state-to-state. In most cases, these tasks must be performed without the help and support of local friends and family members.
STOMP (Specialized Training of Military Parents) was created in 1985 to empower military families and help them obtain the services and support they need regardless of geographic location. The group assists military families in several concrete ways:
Providing families with the training and information they need to ensure proper care of their child
Connecting military families and developing community support groups
Raising awareness of the issues surrounding special needs children in military homes
The project is federally funded and directed by parents who themselves understand the feelings of isolation and anxiety associated with raising a special needs child while serving in the military. To find out more about STOMP, visit the organization’s website.
Cerebral Palsy Travel Tips for the Holidays
The winter holiday season is one of the busiest in terms of travel, and many families prepare weeks or even months in advance to ensure their travel plans go as smoothly as possible. For families of children with cerebral palsy or similar disability, planning seamless travel often requires some additional considerations.
Listed below are some travel tips and resources for families traveling with a special needs child:
- Notify the airline in advance if you will need assistance
- Tag all equipment and mobility devices with identification information
- Pack medications separately
- Ask a security officer for assistance through the checkpoint if necessary
- Arrive early to give your family extra time to make it through security
- Be patient
Remember also that you have a right to remain by your child’s side during the security process and that the security officer is not permitted to remove your child from his/her mobility device.
For more helpful travel tips and advice, visit the Transportation Security Administration website or check out United Cerebral Palsy’s webpage on travel.
Happy traveling!
Cerebral Palsy Association to Host Gala for Research
The Cerebral Palsy International Research Foundation (CPIRF) will host a gala next month at the Four Seasons in Los Angeles to raise money for a new research initiative.
Recent data released by the Centers for Disease Control and Prevention show that the incidence of cerebral palsy is highest among African Americans and the cerebral palsy association CPIRF wants to focus more research in this area.
Money raised during the Power Heroes Gala on December 3, 2008 will go toward funding research to identify the causes behind racial disparities in cerebral palsy and similar developmental disorders. To learn more about this event, please visit the CPIRF website.
Creating a Multi Sensory Environment for Your Cerebral Palsy Child
Studies have shown that Multi Sensory Environments (MSEs) can improve the quality of life of children and adults with emotional, physical and developmental disabilities. According to the Hidden Angels Foundation, MSEs “promote intellectual activity and encourage relaxation” through multi-sensory stimulation.
MSEs are specifically designed to meet the user’s individual needs and may incorporate a variety of visual, tactile and auditory experiences. For instance, an MSE may include:
- Special lighting such as bubble lamps, colored lights, mirrored balls, etc.
- Tactile objects such as textured wall paper, soft or vibrating toys, bean bag chairs
- Sound effects including rhythmical music or sounds from nature
Children with cerebral palsy often face physical and/or cognitive challenges, and an MSE may help a child cope with or overcome their challenges. MSEs can also be used to provide relaxation, which is often an issue for kids with spastic cerebral palsy.
There are MSEs in various locations throughout the country, but you can also try to create a special space in your home for your child. Visit the Hidden Angels Foundation website to learn more about MSEs.
Tweet thisNovember Is National Family Caregivers Month
President George W. Bush recently proclaimed November as National Family Caregivers Month, making this November the first annual celebration of parents, grandparents, siblings and other family caregivers who make daily sacrifices for their loved ones.
As parents of children with cerebral palsy know, caring for a loved one with special needs often comes with everyday challenges (and rewards too). But caregivers should remember also to take care of themselves, a task that is all too often neglected.
This month, if you’re a family caregiver or know someone who is, check out the National Family Caregivers Association website for tips on how to celebrate.
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Foundation Funds Research on Hippotherapy and Cerebral Palsy
The Horses and Humans Research Foundation has granted $100,000 in funding to two universities, one of which will study the effect of hippotherapy (horse-assisted therapy) on head and body movement in 18 children with cerebral palsy.
A 2006 study showed that therapeutic horseback riding programs can benefit motor functioning in children with spastic diplegia, a common type of cerebral palsy, and in recent years, numerous equine-assisted therapy programs have been developed around the country to help individuals with disability.
This new study will be conducted over the course of 10 weeks by researchers at the University du Quebec a Trois-Rivieres, just northeast of Montreal. The other university to receive a grant, Good Hope Equestrian Training Center in Florida, will focus on the use of equine therapy in autistic children.
To learn more about equine-assisted therapies and studies, visit the North American Riding for the Handicapped Association or Horses and Humans.org.
Tweet thisInteractive Play for Children with Cerebral Palsy
Choosing toys for a child with disability can be a challenge for parents. For children with cerebral palsy, parents must take into consideration their child’s physical impairments as well as any communicative or cognitive difficulties.
Fortunately, there are a couple of great resources that can help parents find interactive toys and even local play groups for their child:
· Lekotek.org – This organization seeks to make play accessible to special needs children, and has 32 sites across the country that play sessions for families, computer play and software lending libraries, toy lending libraries and other play services to support children and their families
· Ableplay.org – This website provides information and ratings on toys so parents can make the best decisions for their child. Parents can search for toys based on specific needs or disabilities, including cerebral palsy, see product ratings and find out where to buy.
Both sites also offer newsletters so parents can stay up-to-date on the latest toys, games and play products for children with special needs.
Tweet thisA Medical Home for Your Cerebral Palsy Child
Obtaining comprehensive, compassionate and effective medical care is essential for ensuring the health and wellbeing of your cerebral palsy child. However, coordinating this type of healthcare is no easy feat for parents, and that’s where the National Center for Medical Home Implementation steps in.
According to the American Academy of Pediatrics, a medical home is a model for delivering accessible, continuous and family-centered healthcare with the goal of ensuring that all kids, especially those with special needs, have the support and services they need to thrive in their communities.
In 2007, the AAP and several other medical groups developed a few guiding principles for pediatric medical homes:
- Family-centered – creating partnerships between families and healthcare providers based on trust, collaboration and respect
- Community-based – emphasizing community networks that promote the health and wellbeing of families
- Transition – making sure that individuals receive continued support and services as they move from childhood to adolescence to adulthood
- Value –high quality healthcare that is affordable for families and cost-effective
To learn more about implementing a medical home for your cerebral palsy or special needs child, visit the National Center for Medical Home Implementation website.
Free Teleclass for Family Caregivers
November is National Family Caregivers Month, and to kick it off, the National Family Caregivers Association (NFCA) is hosting a teleclass designed to help caregivers become better advocates for their loved ones.
The theme of the two-part teleclass is “Communicating Effectively with Healthcare Professionals,” and it will be held on November 6th and 13th at 2 p.m. eastern time. The teleclass is aimed at providing caregivers with the communication skills necessary to improve medical results for their loved ones, enhance safety, and save money.
“Family caregivers play a key role in assisting and advocating for their loved one through the healthcare maze. Being able to communicate effectively is critical to ensuring loved ones receive safe and high quality care as for themselves,” said NFCA president Suzanne Mintz.
There are currently more than 50 million family caregivers in the U.S., some of whom are supporting loved ones with cerebral palsy. To register for the free teleclass, visit the NFCA website or call 800-896-3650.
Tweet thisCheck Out These Cerebral Palsy Resources
For individuals and families dealing with cerebral palsy, finding adequate resources for support (financial, emotional and physical) can be a challenge. However, there are numerous cerebral palsy resources out there – local and national, governmental and non-profit. Below are just a few cerebral palsy resources you may find helpful:
- United Cerebral Palsy Associations – UCP is a national advocacy organization that works through local chapters to provide support services to families and individuals dealing with cerebral palsy.
- Parent Training and Information Center – Every state has a PTI, though it may be called by a different name. These centers serve as excellent resources for parents of children diagnosed with cerebral palsy. Community Parent Resource Centers are a similar state resource but with a focus on helping those who are underserved.
- National Information Center for Children and Youth with Disabilities (NICHCY) – This is a good site for finding information about state agencies, organizations, educational programs and other resources for children with disabilities.
- U.S. Department of Education – Find out about education services in your state that are geared toward children with developmental disabilities. The DOE website also provides information about Individualized Education Programs (IEPs) and Individualized Family Service Plans (IFSPs).
- AbleNet – This company develops products and technology to improve the quality of life of children and adults with disabilities.
- Kids on the Block – A fun and interactive educational puppet show for kids. The show features puppets with various disabilities, and programs can be geared toward particular conditions like cerebral palsy.
Many of these organizations provide additional resources, and some publish newsletters on a regular basis.
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Cerebral Palsy and an adoption from Iraq
This from CNN. Capt. Scott Southworth deployed to Iraq and in the process adopted a young boy named Ala'a. It was a long drawn out process. You may be able to imagine how difficult it is to adopt a child from Iraq during these times.
I recommend that story. Read it here --> 'Web of miracles' join soldier, disabled Iraqi boy Tweet this
I recommend that story. Read it here --> 'Web of miracles' join soldier, disabled Iraqi boy Tweet this
Another Amazing Story -- Video
"Hope I inspire other disabled people to engage in their life term ambitions."
This man has used technology to allow him to be a DJ. His hands have limited dexterity so he types with his nose.
It shows how he uses the computer to make the mix.
In this video, I explain how I use my PC to enable me to be a DJ. As I'm disabled, I am unable to physically use real decks and mixers, etc.
I would like to dedicate this video to ellaskins, as he requsted me to do a video like this, and also inspired me to keep at DJ'ing.
Also, sorry about the sound quality.....
Feel free to contact me if you would like to know anything (my email/etc are on my profile)
http://www.dj.pedster.co.uk/
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Disability Resource Guide by Rudy
Head on over to Rudy's Disability Resource Guide.
Here's what he has to say about his blog Which has up to date and current content...Something I always appreciate in a blog.
Here's what he has to say about his blog Which has up to date and current content...Something I always appreciate in a blog.
Tweet thisThis is a web site with links to information on a wide variety of disability issues it is intended both for people with disabilities and those who wish to learn about disability issues. The main goal of this web site is to raise disability awareness and understanding. It's a place where people can do research on disability issues. I also wanted to be a place where people can share experiences and help each other.
About the founder of this site
my name is Rudy I have cerebral palsy and I am in a wheelchair. I have also had chronic pain for the past 10 years I love to do research and I hope people benefit from what I find and post on this web site.
Video Blog Youtube
I am constantly amazed at what Youtube has done to the Internet and to conversations about different subjects. It is not just a platform for watching home movies of dogs doing flips, cats caught in bags or a place to place advertisements to run elsewhere in the web.
It is also a place where people can Vlog or V-Blog (whatever you want to call it). A V-Blog is a Video Blog. So instead of maintaining a blog like we do here by typing, you can create a video entry and "post" your thoughts. Here's a guy (John) posting his first video in order to start a conversation and talk about himself. He happens to have cerebral palsy but that is only part of what he wants to blog about.
Link to his YouTube Home page, Pontificating Palsy
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It is also a place where people can Vlog or V-Blog (whatever you want to call it). A V-Blog is a Video Blog. So instead of maintaining a blog like we do here by typing, you can create a video entry and "post" your thoughts. Here's a guy (John) posting his first video in order to start a conversation and talk about himself. He happens to have cerebral palsy but that is only part of what he wants to blog about.
Link to his YouTube Home page, Pontificating Palsy
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Another Amazing Family
I have been reading Get Emily Walking for several months now. Today her entry really struck me. There are big emotional ups and downs for family's who have disabled children. Here's a quote from today.
http://getemilywalking.blogspot.com/2007/11/my-confusion.html Tweet this
Ask any mother with a chronically ill child and they will tell you that during this time you keep your head down and focused on keeping everything together. You can't look up for a second because if you do you'll lose it. If you start to cry you'll never stop so just keep your nose down and push to the end. Mom's with sick kids need gentle help. You have no idea what it's like to be a parent in control of everything one minute and the next you're free falling through the air not knowing where you're going to land. If you're like me you'll try to do it all alone until one day you're so sick you fear you might collapse and you finally admit to your friends that you need a little help. If you're lucky like me you'll have a group of special people who try to catch you. I'm very bad at asking for help, always have been and actually I've very unlikely too LOL but really good friends know what you need and just do it.I have nothing to add to that.
http://getemilywalking.blogspot.com/2007/11/my-confusion.html Tweet this
Bird on the Street
I've decided to start a new category here and I've called it "Amazing Families...Amazing Blogs". I have found over the years that I have been blogging that I routinely stumble upon blogs written by mothers, fathers, brothers and sisters about their life. Usually these blogs are highly personal, sometimes raw with emotion and incredibly honest about the struggles and joys associated with having a child or sibling with cerebral palsy or some other disability.
Today I start with "Bird on the Street" If you are interested head on over there and enjoy the writing. It is from the heart. Tweet this
Today I start with "Bird on the Street" If you are interested head on over there and enjoy the writing. It is from the heart. Tweet this
A pivotal role in the Houshold
Here a woman has been able to write, shop, do her banking, communicate and design her own websites. She has a pivotal role in the household because of technology. As she says in this video. The computer has saved her life.
Marie-France has lost her voice and can only move a jaw muscle because of Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neurone Disease (MND) or Lou Gherigs Disease. She shows how, with a single switch and AssistiveWare's Proloquo, KeyStrokes and SwitchXS software, she continues to perform a pivotal role in the household by doing the shopping, managing the bank accounts and even designing her own web site.Tweet this
We can because we think we can
More evidence that technology helps people with various disabilities. Heather is a woman with cerebral palsy. She has created a business in Graphics design. http://graphicsafoot.com/
From a YouTube Posting...
Watch her video at Youtube showing how she is able to create great designs.
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From a YouTube Posting...
Leigh-Anne Tompkins was born with cerebral palsy. This did not stop her from making her dreams come true. She graduated magna cum laude in Fine Arts and now has her own company: Graphics Afoot Studio Design.
Watch her video at Youtube showing how she is able to create great designs.
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More Assistive Technology
I have noticed lately the increase in assistive technology on the web. Back a couple of weeks ago I mentioned Glenda in Left Thumb Blogger . This time it's Mike Phillips. Here is a video showing what he can do in a gaming space. Here is his description from YouTube.
Mike Phillips is a gamer and freelance technology writer born with spinal muscular atrophy (SMA). Using his thumb and a proximity switch to access his computer he is a prolific journalist and has contributed chapters to several books. Assistive technology has opened the world for him.Tweet this
The Brain Injury Recovery Center
I received an email introducing me to this website. I went through it today and it is excellent. I recommend it for any family who has someone with a Traumatic Brain Injury.
Here is the email which describes the site quite well.
Here is the email which describes the site quite well.
[The Brain Injury Recovery Network offers] information to brain injury victims and families on the site and also have a toll free support line, all at no cost to the families. Our URL is below:Tweet this
www.tbirecovery.org
The Brain Injury Recovery Network is a 501(c)(3) non-profit organization dedicated to helping victims and families of brain and other serious injuries.
We have developed our Web site in an attempt to provide practical, actionable advice from people who have suffered through the same experience. Our goal is to see that victims of brain injuries are given every chance possible to recover. We provide information and support for both the crisis phase and the long-term care phase of recovery as well as prevention programs. During our family’s own experience with our daughter’s injury we felt there was an information void as we were thrown into a horrible situation without any guidance. We hope our site addresses some of the key issues.
Exceptional Parent Magazine
This magazine is for more than just cerebral palsy families. It is for parents, families, doctors or anyone involved with special needs.
The most recent issue on my desk has a cover story about Walter Reed Hospital and how it is working with its staff to help wounded military personnel overcome injuries.
Check it out at www.exceptionalparent.com
Tweet thisGroup B Strep
Group B strep is a naturally occurring bacteria that is present in the intestines and vagina of about 25% of women.
Group B strep (GBS) is a bacteria that should be routinely screened for in pregnant women. Why? Well the bacteria can infect the baby when the membranes of the amniotic sack break. This might occur during the actual labor.
If an infant is exposed to GBS then it can develope an infection that can possibly lead to meningitis and that increases the risk of brain damage and ultimately cerebral palsy.
Continue Reading... Tweet thisWhat is Physical Therapy
I was skimming through some Yahoo News today and found this article explaining in pretty straight forward terms what physical therapists do.
Tweet thisFavorite Medical Research Site
This is where I look for quick basic medical information to begin any search I have relatig to medicine.
Tweet thisUnited Cerebral Palsy
Are you looking for some information of Cerebral Palsy resources...Start here. United Cerebral Palsy. They say it best themselves.
United Cerebral Palsy (UCP) is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability.
You can put in your zip code to get local resources. If there are no local resources then they refer you to the state level. They have email notifications for new articles and "channels" or categories covering education, housing and much more.
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