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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


 

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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






 

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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.



 

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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.

 

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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.  

 

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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.


 

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You don’t have to feel helpless if you are the parent of a cerebral palsy child. You are your child’s greatest advocate and though it may not always seem to be the case, your voice does matter. Below are five tips on how to be the most effective advocate for your child:
 

1. Choose an issue of importance to you and your child – Is it education? Accessibility? Healthcare? Once you have your issue, ask yourself what you would like to see accomplished and then list ways in which this might be achieved.

2. Find other supporters – Parents, healthcare groups, disability organizations, and government officials working on similar issues can be of great assistance to you.

3. Share your story – Educate others by sharing your story with lawmakers, civic groups, non-profit organizations and professional societies. You may even want to write a letter to the editor of your local newspaper.

4. Never give up – Changing policy is no easy feat, but don’t let this get you down. Persistence is key.

5. Vote – Make sure to choose candidates whose interests are in line with yours.

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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.



 

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Social networking – everybody’s doing it, and there are numerous outlets for individuals to make meaningful connections. Among the more common social networking sites are Facebook, MySpace and Twitter. But now there is a site specifically dedicated to those whose lives are in some way impacted by cerebral palsy, and it’s aptly called Cerebral Palsy Social.
 

People are encouraged to share their stories, discuss new technology or treatments, ask questions and just generally interact to build a stronger, more informed cerebral palsy community. The site allows video and audio uploads as well as blog posts and photo sharing. Twitter, FriendFeed and Skype are also accessible through the site.

Sign up for an account at  www.cerebralpalsysocial.org.



 

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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.


 

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May is National Stroke Awareness Month and this is a perfect time to learn more about the risk of stroke in children and babies. According to the National Stroke Association, strokes in kids are rare (3 cases per 100,000 children each year) but are slightly more common in children under 2.

When strokes occur in the womb or in the first year of life, there is a greater risk for cerebral palsy.  Cerebral palsy is a group of movement disorders for which there is no cure, though many treatments help to improve the quality of life in those affected.

To learn more about cerebral palsy and stroke, check out the Children’s Hemiplegia & Stroke Association website.

 

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From June 4th through June 7th, people from all across the country will converge on Miami, Florida to participate in the No Barriers Festival – an event that seeks to inspire individuals to overcome their personal challenges.

Who’s Invited?

Everyone is welcome to participate in the festival. In fact, one of the main goals of the event to encourage interaction between athletes, manufacturers, individuals with disability (including those struggling with cerebral palsy symptoms) and anyone who wants to live a more active life.

Where?

The No Barriers Festival will be held at Shake-A-Leg Miami, an inclusive community-based center where children and adults with physical, developmental and financial challenges can go to participate in aquatic sports and activities.

Learn More

To learn more about the No Barriers Festival, visit  No Barriers USA or  Shake-A-Leg Miami.

 

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Folic acid has long been known to cut the risk of brain and spinal cord defects when taken as a supplement during pregnancy. Now it’s also being linked to a significantly reduced risk of premature delivery.

Premature birth is one of the greatest risk factors for conditions such as cerebral palsy and mental retardation. But if taken for one year prior to pregnancy, folic acid can cut the risk of early preterm birth (28-32 weeks gestation) by 50 percent and very early preterm birth (20-28 weeks) by 70 percent.

These findings are based on an analysis of folate supplementation in 38,033 women who participated in a National Institutes of Health study. The research is published in the current issue of PLOS Medicine, an online journal.

The March of Dimes recommends that women take 400 micrograms of folic acid every day.


 

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All children need and deserve to play, but this is not always easy for the special needs child. Children with cerebral palsy and similar disabilities often feel like outsiders, watching other kids play but not being able to participate themselves. However, a new park seeks to change this dynamic.

Opening in the fall of 2009, Morgan’s Wonderland in San Antonio, Texas will cater to special needs kids, their families and their caretakers. The park is a whopping 21 acres in size and features fully accessible restrooms, playgrounds, train rides, a gymnasium, a sensory village, picnic areas, a music garden and more!

In addition, the park is equipped with a controlled entry and exit for security and visitors receive special tracking wristbands for added safety. And the best part about Morgan’s Wonderland – admission is FREE for special needs kids and adults, as well as their family and friends!




 

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Ankle foot orthoses (AFOs) are types of braces commonly used to treat certain cerebral palsy symptoms – for instance, AFOs may be used to support weak limbs or they may be used to hold contracted muscles in a normal position.

Fit is everything when it comes to AFOs. In fact, achieving optimal results depends on the proper fit and alignment of the brace. But how, as a parent, can you determine whether or not your child’s brace fits properly? Registered Orthotic Assistant and Certified Fitter of Orthotics, Loretta Sheldon, answers this question in a  new article on eParent.com.

In the article, Sheldon provides a number of tips and things to look for when evaluating the fit of your child’s brace, including:

• The space between the heel and the heel cup
• Toe length and extra room for growth
• Brace height and width

Sheldon also discusses brace habituation (adjusting to wear) and working with your clinician. If an AFO has been recommended for your child, this article will prove a helpful resource.




 

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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

 

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Just days after announcing the closing of a therapeutic horse riding program at the University of New Hampshire that serves children affected by cerebral palsy and other disabilities, the dean of the school’s College of Life Sciences and Agriculture said the program would remain open pending further review.

The announcement that the self-funded program would be closed came as an upset to many parents, students and children. Money for the 20-year-old program is raised through fees and fundraising, and a review is being conducted to assess its financial future. The review will be submitted to the dean by July 1st, after which time a more definitive decision regarding the program will be made.

Therapeutic horse riding, also known as hippotherapy, has been shown to improve muscle tone, motor development, coordination and posture in cerebral palsy children. To learn more about hippotherapy, visit the American Hippotherapy Association website.


 

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With summer on the horizon, many families are planning for a vacation. For families with a cerebral palsy child, there are special considerations that need to be made. Below are some things you should consider when planning your trip:

Special hotel or air travel accommodations – For instance, if your child is in a wheelchair, you’ll probably want a room on the first floor of a hotel.  You’ll also need to know if the hotel room has a wheelchair accessible bathroom. For air travel, you should contact the airline ahead of time to ensure things go as smoothly as possible on the day of your flight.
 

Other travel accommodations – Are you renting a car? If so, does the vehicle need any modifications for your child? Will you need a specialized car seat?
 

Medication considerations – Make sure to pack any necessary medications (preferably in your carry-on). Remember to pack extra as a precaution. It’s better to have too much than not enough.
Insurance and emergency information – Having this information on hand could save you a lot of trouble should you need it.
 

Disability access – If you’re heading to a theme park or particular attraction, call in advance to make sure they’re accessible. You may also want to find out what kind of equipment they provide for patrons, such as wheelchairs and strollers.
 

Talk to your child about what to expect on your trip and allow your child time to regroup when necessary.

And last but not least, have fun!


 

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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.



 

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The documentary film Shooting Beauty: Everyone Deserves a Shot takes a refreshing perspective on what it’s like to live with cerebral palsy and other disabilities. The film follows aspiring fashion photographer, Courtney Bent, who discovers a new world when she starts teaching people with disabilities about her craft.

Bent provides each of the photographers featured in her documentary with a camera designed to meet their specific needs – in some cases, that means the camera is connected to the individual’s wheelchair; in others, the camera is positioned so that buttons can be manipulated with the photographer’s tongue. The resulting images provide a poignant look into what the world looks like through the eyes of disability.

For more information about this film or to find out about screenings, visit the documentary website at http://everyonedeservesashot.com/

 

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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.

 

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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.


 

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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.

 

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Seizures often affect children with developmental disabilities such as cerebral palsy. If your child has this cerebral palsy symptom, you might be interested in a live online seminar taking place on May 19th from 7:00-9:00 PM EDT.

The seminar will discuss developing a seizure readiness plan, among other things, and is geared toward parents, teachers, nurses, caregivers, emergency responders and anyone else who works with children affected by seizure disorders.

Dr. Orrin Devinsky, Professor of Neurology, Neurosurgery and Psychiatry, will be speaking. The event is free and registration is ongoing at www.epliveonlinc.com.

 

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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.

 

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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.

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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.




 

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The son of British opposition leader David Cameron recently died. The 6-year-old boy had cerebral palsy and a rare seizure disorder. His death has prompted many questions about cerebral palsy symptoms and causes, and the Associated Press published an article outlining the some basic information about the condition.

Among some of the facts highlighted in the article are:

Cerebral palsy affects approximately one in 500 babies born each year in the United States.

The condition affects the entire body in about 80 percent of cases.

It is often diagnosed in infancy or early childhood.

Symptoms include developmental delays such as difficulty rolling over, sitting, crawling and walking.

Associated conditions include mental retardation, vision impairment, breathing problems and skeletal deformities.

To learn more about cerebral palsy symptoms and other facts, you can access this Associated Press article.

 

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Financial worries are compounding for many families right now, some of whom have experienced job losses, loss of health insurance and even the threat of foreclosure. Among those hardest hit by the current economic recession are families caring for a child with cerebral palsy or other disability.

Shrinking state budgets often lead to the cutting of vital disability services and support, and this leaves many families in dire financial and emotional straits. It’s no surprise that given the high stakes of the economic downturn that the coming 2009 Disability Policy Seminar will focus on the funding of disability programs such as health care and long-term services.

The seminar, which is titled A New Era: Embracing Opportunities in the Face of Grave Challenges, will take place in Washington D.C. from April 27th-29th. Space is limited, so you may want to register now at UCP website if you’re interested.


 

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Cerebral palsy is often not diagnosed until a child reaches one year of age or later, and many parents may not be aware of the signs and symptoms associated with this condition – which affects thousands of babies born in the U.S. each year.

One of the main signs that a child might have cerebral palsy is motor (or movement) delays. A list of other signs and symptoms parents should look out for can be found on the Reaching for the Stars (RFTS) website.  

RFTS is a non-profit organization dedicated to furthering research efforts for the prevention and treatment of cerebral palsy. In addition to the information sheet on cerebral palsy symptoms, the site has a number of other helpful resources as well as opportunities for advocacy.

See Also: Cerebral Palsy Symptoms

 

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Several films being featured at this year’s Washington D.C. Independent Film Festival (DCIFF) explore the theme of “Power Within” as it relates to disability. Movies can be a great option for some family fun, and this festival may be especially worthwhile for families with children affected by cerebral palsy and other disabilities.

The festival runs from March 4th – 15th and those in the DC area may want to check out some of the following “Power Within” entries:

      Henry O!

      Birdy

     The Making of Agamemnon

     Here’s Herbie

For more information on the festival, visit the DCIFF website.
 

 

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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.


 

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The Pediatric Neurology Cerebral Palsy Center at St. Louis Children’s Hospital and Washington University School of Medicine are presenting the 5th Annual Cerebral Palsy Conference: Building the Road to Independence on March 27-28, 2009.

It promises to be a great conference for parents to attend, featuring talks a wide variety of topics such as:
 

• Epilepsy in children with cerebral palsy
• The safety and efficacy of Botox treatment
• Orthopedic management
• Vision problems associated with cerebral palsy
• Selective dorsal rhizotomy
• Intrathecal baclofen pumps
• Individualized therapeutic strategies
• Creative therapy for the hemiplegic hand
• Sports and adaptive physical education
• Martial arts
• Primary care issues for cerebral palsy patients

In addition, there will be question and answer sessions each day, a children’s panel , a teen panel, and a dance performance. Registration is currently open – If you’re interested, you can see the agenda and find out more about registration here.

 

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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.

 

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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.  


 

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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.






 

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From February 18th – 21st, renowned researchers from around the world will gather in Sydney, Australia for the largest cerebral palsy convention to date: The 3rd International Cerebral Palsy Conference.

The event, which will feature experts from various disciplines, seeks to promote collaboration among specialists for the advancement of cerebral palsy treatments. This year’s theme is “Across the Life-Span” and featured speakers include:

Dr. Roslyn Boyd, a physiotherapist recognized internationally for her cerebral palsy research

Dr. Eve Blair, an epidemiologist with over 25 years of experience

Dr. Donna Ferriero, who serves as the Director of the Neonatal Brain Disorder Laboratories and co-director of the Newborn Brain Research Institute at UCSF

Dr. Fiona Stanley, founding Director of the Telethon Institute for Child Health Research

For more information about this event, visit CP 2009

 

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If passed, pending legislation in Illinois will require insurance companies to cover treatment costs for children with cerebral palsy, autism and other physical disabilities. The new governor has not said whether he will approve the bill, which could affect tens of thousands of children across the state.

Insurance companies currently deny what they consider “habilitative” treatment, or treatment intended to help children develop new skills or ones they haven’t mastered. Without insurance coverage, many parents are unable to afford therapies that could improve their child’s life.

“It’s an important bill for families with kids that need this therapy,” said Senator Maggie Crotty, one of the sponsors of the bill.

 

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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.

 

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Best-selling author James Patterson held an eBay auction accepting bids to name a character in an upcoming novel.  Proceeds from the auction will go to support the Cerebral Palsy International Research Foundation, which is holding a gala event on March 1st.

Patterson, whose books have sold more than 150 million copies worldwide, is perhaps best known for his popular detective series featuring Alex Cross.

About the Families of Distinction Gala

The gala event is being held at the Plaza Hotel in New York to honor individuals and families who are committed to improving the lives of those with disabilities such as cerebral palsy, autism, and Parkinson’s. It will feature both a silent auction and a live auction in addition to the awards ceremony.

To learn more about this event, visit the CPIRF website.

 

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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.

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Eighteen year old Andy Sullman has cerebral palsy, but you wouldn’t know it to see him running. For nearly a year, he’s been training to run a marathon. Running has helped him overcome his cerebral palsy symptoms – something he was unable to do with traditional treatments like physical therapy.

Andy says running has made him stronger. Just before he began running, Andy began to lose feeling on the left side of his body and his head began to droop toward his shoulder. Now he stands straight and strong.

In It for the Long-Term

Andy was born prematurely and there were complications. A delay in treatment caused him to suffer brain damage, according to his mother, Dominique Sullman. On Sunday, Andy will run in the Chevron Houston Marathon.

“I want to run a marathon because I really enjoy running, and I want to show people that anybody can run a marathon with training,” he said.

And running is something Andy says he will continue to do. “It’s given him independence for life. It’s given him normality. There are so many kids out there with CP, maybe this can give them hope,” his mother said.



 
 

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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.

 

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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.


 

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Gary Lynn is no ordinary teenager. At 16 years old, he has his own foundation dedicated to improving the lives of people with cerebral palsy through fundraising, education and research.

An avid sports fan from Houston, Texas, Gary knows firsthand the challenges involved in living with disability. He has spastic cerebral palsy and is confined to a wheelchair. But he doesn’t let this stop him. His foundation just held its first annual golf tournament which raised $4,000.

The money raised was donated to the Cerebral Palsy International Research Foundation. Next month, the Gary J. Lynn Foundation will host a Chili Cook-off fundraising event featuring Eric Winston of the NFL’s Houston Texans.

To read more about Gary and his foundation, visit his website here.

 

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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.

 

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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.

 

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The disability community will usher in the new president on January 18, 2009 with the Disability Power & Pride Inaugural Ball. A first-ever event for the disability community, the ball will feature special guests, great food, live music, dancing — and you’re invited!

Joining the celebration will be disability leaders and advocates from across the country, as well as federal legislators and government officials from the new administration.

To learn more about attending this historic event, download the invitation package on the Disability Power & Pride website. Assistive listening devices and sign language interpreters will be available at the event.

 

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More than $30,000 was raised for UCP Wheels for Humanity at the third annual Rock to Roll benefit in West Hollywood on December 14th. The event featured rockers from bands such as Social Distortion, Bad Religion, NOFX and Pennywise, among several others.

The money will go to support UCP Wheels for Humanity, which has been donating refurbished wheelchairs to those in need since 1996. Over 40,000 children and adults in countries across the world have received free wheelchairs through the program.

United Cerebral Palsy is a leading advocacy group for individuals with cerebral palsy and other disabilities and the group has more than 100 local affiliates throughout the United States.



 

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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.


 

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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.

 

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The Coal Fund is being used to help families in Tennessee pay for heat in their homes this winter, which fewer families are able to do during tough financial times. One family helped by the Coal Fund has been hit especially hard by these times—a single mom with three children, one of whom has cerebral palsy.

“As prices increase, she is having a difficult time trying to keep things together on the small disability check she receives. Things just got too hard for her to be able to afford heating oil,” said Carmen Ricker of Greeneville-Greene County Community Ministries, the group that administers the fund.

Money from the fund was used to help the woman purchase heating oil for her home. According to Ricker, all the funds raised through the end of the year will likely be used for home-heating assistance.

Tough Times for Families of Special Needs Children

Caring for a special needs child during a positive economic climate is challenging for most families, but when jobs are lost and benefits cut, some families will have to struggle all the more. The Coal Fund is just one of many programs across the U.S. helping families in need.

If you are struggling to make ends meet and are caring for a special needs child, you may wish to contact your local Easter Seals organization or other charitable foundations in your area for resources or assistance.
 

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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.

 

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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.

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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.


 

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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.

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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.


 

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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.

 

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Spasticity is a condition that affects some individuals with cerebral palsy, multiple sclerosis, and brain or spinal cord injury. Those who have spastic cerebral palsy experience impaired movement due to muscle stiffness, involuntary muscle spasms and limited range of motion in joints.

Dealing with any kind of physical impairment can be a challenge, and many people turn to community support groups or networks to share their stories, experiences, and advice. Online communities are especially popular, and one in particular seeks to empower and connect individuals with spasticity.

That community is called Exploring Spasticity and it invites anyone whose life is touched by spasticity – caregivers, children, adults, family members, and friends – to join. People are encouraged to share their stories, some of which are featured in an annual complimentary spasticity calendar.

The website also offers information on spasticity treatment as well as links to resources.






 


 

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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.


 

 

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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.

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Children with special needs such as cerebral palsy tend to require significant emotional and physical support from their parents. However, siblings of special needs kids often have needs of their own and parents can help meet these needs through programs specifically designed for sibling support.

One such program is The Sibling Support Project. This national nonprofit organization is dedicated to increasing support for siblings of children with disabilities and mental illness. The Project works to achieve its mission through:
 

• Informational workshops
• Listserv hosting for peer discussions
• Training community service providers to create sibling peer groups (Sibshops)

By visiting the organization’s website, parents can find a Sibshop in their area or learn how to start one. Parents can also join the SibParent listserv to discuss the unique issues, joys and concerns associated with raising children with and without special needs.

 



 

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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.

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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.

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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.

 

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With the recent economic crisis, many parents are becoming increasingly concerned about their children’s future financial security. This is especially true of parents caring for a child with special needs, who often require long-term and expensive care.

For instance, caring for a child with cerebral palsy over the course of a lifetime may total over half a million dollars. And as the lifespan of individuals with disabilities increases, it’s more likely that a special needs child will outlive his or her parents.

A Few Options

Creating a special needs trust is one popular option these days. This kind of trust provides money for certain expenses related to quality of life (entertainment, grooming, etc.), while at the same time guaranteeing continued access to government programs like Medicaid and Social Security.

Additional options include retirement and estate plans as well as insurance policies. If your child has cerebral palsy or other special need, a professional can help you develop the best plan given your individual circumstances. Talking to an attorney or financial planner is generally a good place to start.

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Parents of children with cerebral palsy may find valuable information and resources in EP Magazine (for Exceptional Parent). The monthly publication and website, eparent.com, are dedicated to supporting the special needs community with practical advice and emotional encouragement.

Families and individuals with special needs can go to the website for national disability news as well as information on:

• Educational policies, strategies and alternatives
• Financial strategies and planning
• Federal policy and advocacy
• Legal issues , such as trust creation
• Military family issues
• Mobility and technology
• Sports and recreation

Finding positive avenues for support and information is crucial for families dealing with cerebral palsy and other special needs, and this is one more resource we think is worth looking into.

 

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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 6^th and 13^th 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.

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The World Congress on Disabilities is holding a two-day conference and expo in Jacksonville, Florida on November 21st and 22nd. One of the featured conference tracks is pediatric cerebral palsy and it focuses on new approaches to treating this increasingly diagnosed condition.

Families can attend the conference to hear experts speak on various topics including:
 

• New techniques for managing spasticity and contracture
• Intensive pediatric physical therapy
• Intensive feeding therapy
• Hippotherapy
• The stages of grief for families of children with disabilities

The Congress also features a family conference track that provides information on education policies affecting children with disabilities and strategies on helping kids make their educational journeys successful.

 

Families may also find value in the expo portion of the Congress, which exhibits the latest products and services available to the disability community.

 

To learn more about the WCD Expo, visit the website: http://www.wcdexpo.com/2008/fla/index.cfm.

 

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United Cerebral Palsy (UCP) is jumping on the social media bandwagon with a Twitter account, a blog and profiles on several popular social networking sites. UCP is a leading cerebral palsy association, dedicated to disability advocacy and support.

Twitter launched microblogging (short and frequent posts of 140 words or less) to the forefront of social media with its launch in 2006. Sticking to this format, the UCP Twitter site provides brief updates about UCP and news snippets relevant to people with developmental disabilities like cerebral palsy.

The advocacy group also hosts a regularly updated blog and has networking profiles on MySpace, Facebook and YouTube.

Social media such as these raise awareness about developmental disabilities and help to keep people informed. The more support these sites receive, the greater the potential for increasing general public knowledge and effecting positive change.

We're on Twitter too.  Follow Dave at @DaveAustin

 

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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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