Raising Awareness of Cerebral Palsy Through Art

The Power of a Little Green Ribbon

By Janet Harrold
Writing for the CP Family Network
For over 20 years now I have been expressing myself through art. It wasn’t until 5 years ago, when my beautiful granddaughter was born with cerebral palsy, that I started including a green awareness ribbon in my work.

The Search for Answers

Before Hailey was born, I really didn’t know too much about CP. When we first found out that Hailey had cerebral palsy I felt helpless. I thought to myself, how can I possibly help my family when I don’t know the first thing about her diagnosis? Like so many others, I craved information. I began scouring the Internet every night desperately searching for ways to help Hailey have a better quality of life. I admit that even after 5 years of gathering information like a beaver gathers wood, I still do not know all that there is to know about her diagnosis. But, I have learned a lot more than I ever thought that I could. I have met some of the strongest and most caring people and have built relationships with others who live the same life that Hailey lives. That life consists of love, courage, happiness and often times a life full of physical pain, discomfort, and exhaustion. The challenges she faces every single day are at times overwhelming.

Spreading the Message

Through it all, Hailey continues to smile her contagious smile and her determination is like no other. When Hailey was first diagnosed, I spent weeks and months crying. After the initial shock of her diagnosis began to wear off, I dried my eyes and decided to pick myself up and dust myself off and vow to never cry for Hailey again. After all, crying wasn’t going to help her one bit. I began writing about the things that I had learned so that others behind me could begin their journey armed with more information than we had as a family. My blog, “Painting For Hailey,” was written to educate my extended family and introduce them to the wonderful little girl that we are so blessed to have in our lives.
Raising awareness and educating others about CP became a top priority for me. I wanted to be sure to keep the tone of my blogs very positive. Remembering all that I have learned doesn’t come particularly easy for me. I am well aware that middle age is creeping in; my memory doesn’t serve me as it once did. I find myself leaving notes everywhere so I won’t forget things. I’ve even reverted back to my childhood methods to try and keep myself on track. When I was a child, lessons were easier to remember if they were taught through song or word association. I paired up my encouraging words with vowels. This helped me to remain positive. I constantly rehearsed these words:

• A-ADVOCATE
• E- EDUCATE
• I-INSPIRE
• O-OBSERVE
• U-UPLIFT

5 simple words with a positive message. I built my posts around these commandments.

Advocacy Through Art

The idea of raising awareness everywhere and any way eventually translated into my artwork. I found myself leaving hidden messages of green awareness ribbons in every painting that I painted. At first they were very discreet; they were unobtrusive. Later they had become more blatant. I’ve written the quote, “I am a delicate flower; you are the sunshine that helps me grow,” to accompany the picture shown here. In this piece, you can see the ribbon on the girl’s necklace. Suddenly, this became more of a trademark for me and eventually a game for others. I get emails saying, “I can’t find the ribbon. Did you forget to put it in the painting?” Or they would request that I paint the ribbon in a specific spot. I have also been told of other causes that the green ribbon represents, such as organ donors, mitochondrial disease, leukemia and so many others.

Mission Accomplished

People are now looking beyond the painting and searching for the green ribbon. A subliminal message, I admit; but an important message nonetheless. This is only a small step in raising awareness for CP, but if each of us take many small steps, who knows how far we may walk together?

About the Author

Janet Harrold is a firm believer in educating others about disabilities. As an artist, she says, “Every brush stroke I make on raw canvas is a stroke of love. I paint to raise money and awareness for Cerebral Palsy.” One hundred percent of the money she makes selling her paintings goes directly to her granddaughter’s alternative therapies.To view more of Janet’s artwork, visit her art blog Brush Stroke of Love.

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$30 Gadget Lets You Control Computer With Your Eyes

September 25^th, 2012

By Tom Levitt

Take two video-game console cameras and one pair of horn-rimmed glasses and for around $30 you have a device that will allow you to control a computer or, potentially, even a wheelchair with your eyes.

Previously, if you wanted to buy similar eye-tracking equipment it would have cost you upwards of $8,000. Now, scientists in London have pioneered a device, the GT3D, using components anyone of us can buy from the shopping mall.

 

The breakthrough could help millions of people suffering from Multiple Sclerosis, Parkinson's, muscular dystrophy and, potentially, opens the door to a new era of hands-free computers, allowing us to use them without a mouse, keyboard or touch screen.

For the lead researcher Dr Aldo Faisal, a neuroscientist at Imperial College in London, the new device only came about because of his obsession with disassembling gadgets.

"I like to play with gadgets and was playing with a popular video-game console," he said. "I hacked it and discovered it was very fast and better than any webcam for movement. Actually, it was so fast that I found we could record eye movement with it."

Tracking eye movement is no mean feat. Our eyes move 10 to 20 times a second, so a standard webcam or even film camera will miss most eye movements and where we are looking. As such, it is perhaps no surprise commercial eye-tracking devices are so expensive

Luckily for Faisal and his team of researchers, video game console makers have been willing to bulk buy the technology needed to make good enough cameras. They make a loss on the console cameras in the expectation of making it back on accompanying video game sales.

"We originally created the device for £39.80 ($64) but recent falls in the price of video game console cameras mean we could now actually make the same device for about £20 ($32)," says Faisal.

The eye-tracking device works by first establishing where the eyes are looking, through a relatively straight-forward calibration process. The user puts on the glasses, with the two attached cameras, and stares at a computer screen full of dots. They are then told to look at different dots, with software developed by the researchers working out how the eye looks at each dot.

Once calibrated, the device can be used to control a mouse on the screen and is so accurate that if you were in a normal-sized room and wearing the device it would be able to locate where you were looking to within the size of a grapefruit, say its developers.

Existing commercially available devices such as the Tobii PCEye and the EyeTech TM3 also allow users to control a computer with their eye instead of a mouse. Like the GT3D, they use two cameras and say they can be used to surf the web, send emails and do anything a handheld mouse can do -- but they are priced between around $5,000 and $7,000.

And if you search online, you will find many amateur attempts to create eye-tracking devices just like the GT3D. But Faisal says the difference with his is that it has been properly tested and proven to work -- a demonstration of his device has been published in the peer-reviewed journal BMC Neuroscience.

Unsurprisingly, the interest in his technology has been huge, he says. Several companies have already approached him to develop and mass-produce the device. However, Faisal says, none have so far embraced his ambition for making it available at a low cost to millions. Instead, they all preferred to undercut existing eye-tracking devices by 10%.

"My mission is that we forge technology with neurological science to find ways to help millions of people with disabilities, such as loss of limbs or muscular disorders, use technology in a cheap way," said Faisal. "We want to make sure people can buy the device for no more than £80 ($125)."

If no commercial partner comes forward within the next year or two, Faisal says they will publish all the information about their device and software online and make it freely available for anyone to replicate.

For many disability campaigners, such a device cannot come soon enough. "Those with extreme muscle-wastage in their arms often rely on carers to work on a computer, cannot position themselves comfortably at a keyboard and quickly suffer fatigue from typing," says Dr Marita Pohlschmidt, director of research at the UK-basedMuscular Dystrophy Campaign, who calls it a "potentially life-changing innovation."

"It also offers us an exciting glimpse of future possibilities -- optical control of hoists, beds, blinds, kitchen and entertainment equipment. The impact of recovering the independence to do such things for disabled people, their carers -- and for family life -- would be vast,' she adds.

Faisal says it would already be possible to control a wheelchair with their device. The main obstacle is how to differentiate between where someone is looking at where they actually want to move to in the wheelchair. He says this has been overcome by his researchers through the use of a wink as a command trigger. "We use a wink rather than a blink because you never wink by accident," explained Faisal.

However, while he can see its popularity for disabled or elderly people, Faisal remains uncertain about whether cheap eye-tracking devices are ready to take over from the mouse and touch-screen computers. "Perhaps it will bring in a new era of hands-free computers. But there is a problem in that the computer industry is moving towards touch systems with the iPad, so I'm not sure the mass-market is going to embrace eye-movement just yet. Also, I am not sure it is ready for use with complicated applications like, for example, Photoshop."

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Special Needs Parents: How to Cope with Grief

Special Needs Parents: How to cope with grief
September 24th, 2012
By Karen Wang

Three times in the past two weeks I’ve been asked, “How do you remain so strong?  How do you cope day-to-day?”
 
The Process of Grieving
That’s a big question for many parents of children with disabilities or medical needs.
The famous “five stages of grief” aren’t necessarily predictable when a parent is dealing with a child’s loss of health or developmental skills.
The denial, anger, bargaining, depression and acceptance may be a whirlwind; one or more stages may pop up unexpectedly when a child misses a milestone (I was hit hard when my 3 year old began to surpass his 9 year old brother in many developmental areas); or the parent may find a completely different way of coping and problem solving.

The Right Way to Grieve
There is no such thing as a “correct” way to grieve.  At one end of the spectrum, a parent may suffer symptoms of Post-Traumatic Stress Disorder, especially after witnessing a child’s medical procedures or life-altering events.

At the other end of the spectrum, some parents report no feelings of grief or loss, and take a pragmatic approach to supporting their children’s needs.  According to Laura Marshak and Fran Prezant, co- authors of Married With Special Needs Children, these are all healthy, natural reactions.

My Losses
When I realized that my son was developmentally delayed and would not have a typical childhood, I felt a sense of loss on many levels.
First there was the loss of my own expectations for my son.  I also walked away from my teaching career and my incomplete doctoral dissertation to care for my son full-time.
I lost my health, partly due to the stress of being a caregiver, with frequent infections, chronic thyroid problems and even cancer.
I lost many of my friendships, professional relationships and family relationships because I was physically and emotionally unavailable to everyone except my son.
Feeding and calming my son required 100% of my energy around the clock, and he did not accept alternate caregivers. I packed up and moved to Planet Autism.

Emotional Memory
Ten years later, I still feel sadness or sorrow from time to time.  Both of my children were screamers when they were little; so when I see relaxed, happy, social babies and toddlers, I am reminded of what I missed.
“But you have two beautiful children,” a friend told me when I confided this to her.  I do enjoy  and cherish my children – even at their fussiest!  But I also remember the stress of not being able to comfort my baby, and knowing that the intense, long periods of screaming were a symptom of a larger, lifelong issue.
Emotional memories such as these can be triggered at any time by a reminder of an emotional event.
OK, so grief and sorrow are normal for parents of children with special needs.  The question is:
What am I going to do with my grief?

1. The Calm Mom
 I’ve found that the same methods that alleviate my son’s panic attacks also help me deal with everyday stress.

In her book Becoming A Calm Mom, author Deborah Ledley recommends tools for developing a calmer lifestyle based on the principles of cognitive-behavioral therapy.  She starts with identifying the negative thoughts and behaviors that a person wishes to change.
It is necessary to allow enough time to make big and small decisions, since those are a major source of stress for parents.  Time is also needed to strengthen communication and relationship skills, because honesty and reciprocity are the fast track to becoming calmer.
When these new habits are in place, breathing exercises, positive visualization, muscle relaxation and other relaxation strategies provide physical and emotional calmness.

2. Spirituality
On many days I think that the only two things going for me are my maternal instinct and my faith in a higher power.  Each day begins and ends with prayer.  During the day, I consciously try to offer every breath of my body as a prayer.
My autistic son has been my spiritual teacher since the day he was born.  Because of him, I feel the connectedness of life more fully, and my perceptions of the world are heightened – colors are brighter, emotions are stronger, moments seem frozen in their sweetness and fragility.  I carry those moments of awareness with me during my darkest hours.

3. Volunteer Work
Sometimes it helps to remove the focus from my family’s needs and to do something to help others. I’ve been doing various types of community volunteer work with my kids since they were babies.
I once taught an adult education class while wearing my infant son in a sling.  When my son was a toddler, we assisted with worship services at a nursing home.  I always have my younger son with me when I volunteer at his older brother’s school.
Last summer we ran a lemonade stand at a community garage sale and donated all of the proceeds from the lemonade stand to a community group.  If I can’t find a volunteer opportunity where my kids are welcome, I create an opportunity!

4. Research And Advocacy For My Child
I may as well come out and admit it: in my heart, I’m still an Ivy League academic.  I dive right into the medical research databases, and I know what baloney smells like.
I am able to discuss my son’s education and therapy with intelligence and clarity, and I am able to exchange helpful ideas with his team.  I am able to implement the results of my research at home, and I’ve seen my son benefit from my efforts.  That’s empowerment all around.

5. Learning To Enjoy My New Normal
I could complain for a really long time about the 10 years of sleep deprivation torture that I’ve endured.  But complaining doesn’t change it.
Instead I choose to reflect on what those long nights have revealed to me: the hours spent cuddling a wide-awake child on the sofa in the dark; the long walks at the crack of dawn; knowing that I don’t regret my losses, because in return I gained something that I had never imagined.

6. Keys To The Universe

I recently discovered The Autism Mom’s Survival Guide by Susan Senator, an outstanding book about everyday coping.
The author emphasizes the importance of self-care for all caregivers.  She interviewed parents in the autism community and drew from her personal experience to produce a list of suggestions for dealing with stress, which she calls “The Keys to the Universe: Small Pleasures That Make A Big Difference.”
Some of the items on the list include:

• Taking just a few minutes to spend on a hobby
• Meeting a friend for dinner or coffee
• Making the beauty of nature part of the day (even if that means just buying flowers at the grocery store)
• Listening to music
• Visiting a website that helps you with your overall life philosophy
• Stimulating your intellect
• Challenging yourself physically
• Indulging in a small treat.

Grief, sorrow and all types of intense emotion can change anyone, for better or for worse.  I know that I am a different person now.  But maybe this is the person I was supposed to be all along.


About the author:
Karen Wang is a Friendship Circle parent. You may have seen her sneaking into the volunteer lounge for ice cream or being pushed into the cheese pit by laughing children. She is a contributing author to the anthology “My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities”

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How to Choose an Emergency Generator

By Lee Vander Loop
CP Family Network Editor

Many families with special-needs children face a multitude of challenges that others may never experience. The challenge of an extended power outage is frustrating and inconvenient to any family, but when you factor in a special-needs child who relies on medical equipment such as oxygen, a feeding pump or other life-saving equipment, a power outage can quickly become a medical crisis.

While raising our daughter with severe cerebral palsy, there weren’t many moments that would strike fear in my heart. Power outages, however, put me in full panic mode. Because Danielle was dependent on a variety of equipment to keep her stable, I was in “full throttle mode” when the lights flickered. In order to keep our sanity and ensure Danielle’s health, we decided we needed to invest in an emergency power source.

Selecting a Generator

A portable generator is normally the first choice when selecting an emergency power source. When selecting a portable generator or other alternate source of power, you first need to understand what your average “daily load” is. This is the amount of power required to operate equipment under normal working conditions. A certified electrician can assess your power needs in relation to lighting, medical equipment and other household usage you might need during emergency situations.

The number of household items or medical equipment to be powered will influence the type of power supply needed. Once the daily energy requirement is established, a range of options can be considered.

Types of Generators

Reciprocating Engines

These are the most common form of small generator. A reciprocating engine is similar to an automobile engine, using fuel combustion to drive pistons. In generator-only systems, the generator must be sized to handle the peak expected load, but the system frequently runs at lower loads at reduced efficiency. This type of generator has low initial cost compared to other options, but high operating costs due to the need for fuel.

Diesel Generators

• Most common option
• More expensive than gasoline, but more reliable and longer-lived
• Fuel does not burn as cleanly as other options

Gasoline Generators

• Gasoline is widely available
• Cheaper than diesel generators and available in smaller sizes
• Normally used as emergency back-up generators due to their shorter operating lifetimes

Propane Generators

• Quieter and cleaner than diesel and gasoline options
• Environmentally friendly; spilled propane evaporates rather than contaminating a site
• Well-suited to use in a hybrid system with solar or wind, though they are not optimal for serving as the sole (or primary) energy source

Whole House Generators

Whole house generators are another option when considering emergency backup power. Although more costly then a portable generator, a whole house unit offers a more hands-free solution in emergency situations. The average price for a whole house generator unit ranges from $8,000 to $10,000. This does not include the necessary transfer switch.

Whole house generators come in 4 sizes ranging from 22-48 kilowatts. Your electrician will determine the size you need based on your electricity usage. The majority of newer homes are built with 200-amp electrical service. This means that the MAXIMUM amount of electricity that your home can use is 200-amps.

Home Standby Generators

Unlike whole house generators, these units are not capable of restoring power to an entire house. Standby generators are capable of powering 8-16 circuits in your electrical panel. Newer and more expensive models offer an intelligent automatic transfer switch that can actually restore power to your entire panel, with limited energy consumption.

Generator Safety Tips

• Get advice from a licensed electrician. Make sure that the generator you purchase is rated for the power that you think you will need.
• Do not connect your generator directly to your home’s wiring. Connecting a portable electric generator directly to your household wiring can be deadly. You could also cause expensive damage to utility equipment and your generator.
• Hire a licensed electrical contractor to install a transfer switch. The transfer switch shifts power from the utility power lines to the power coming from your generator.
• Never plug a portable electric generator into a regular household outlet. Plugging a generator into a regular household outlet can energize “dead” power lines and injure neighbors or utility workers.
• Don’t overload the generator. Overloading your generator can seriously damage your valuable appliances and electronics. Prioritize your needs. A portable electric generator should be used only when necessary and only to power essential equipment.
• Never use a generator indoors or in an attached garage. Just like your automobile, a portable generator uses an internal combustion engine that emits deadly carbon monoxide. Only operate it outdoors in a well-ventilated, dry area away from air intakes to the home and protected from direct exposures to rain, preferably under a canopy, open shed, or carport.
• Read and adhere to the manufacturer’s instruction for safe operation. Do not cut corners when it comes to safety.
• Never refuel a generator while it is hot. Fuel could spill on the exhaust and cause a flash fire. Always let the unit cool before refueling.

Other Emergency Considerations

• Even if you have emergency backup power such as a portable generator, it’s still smart to have an emergency response plan in place.
• Portable generators take time to start, so you need to be able to meet your child’s immediate needs until you can power up your generator or alternate energy source.
• Always have a battery-operated lighting source or flashlights readily available in your child’s room and multiple rooms throughout the house. Battery-operated Coleman lanterns are nice for this, providing hands-free light.
• If your child is on oxygen and has an oxygen concentrator that would lose power during an outage, always make sure you have a portable oxygen supply readily available and ready to use, including having the needed regulator attached.
• Equipment such as feeding pumps and pulse-ox monitors come with a backup battery source, but they only last several hours. Unless you’re using this equipment in transit, always keep it plugged into an outlet to conserve your backup battery source.
• If you have a portable generator, always keep it fueled and have a backup fuel supply available.

Conclusion

Making preparations for unexpected emergencies can have a major impact on the wellbeing of your special-needs child, not to mention your stress level and sanity! Visit the CP Family Network Facebook page to find out what other cerebral palsy families are doing to prepare for the unexpected. We also recommend you check out these links for more emergency preparedness tips:
Whole House Generator Buying Guide 
American Red Cross Disaster Preparedness for People with Special Needs

Cerebral Palsy Family Network

iPhone & iPad: IOS 6 Disability Features Overview

September 19, 2012
By Luis Perez 

Apple has been working on making the upcoming iOS 6 more accessible to those with hearing, vision, learning, and mobility disorders.
At WWDC Apple introduced Guided Access, which helps those with learning disabilities remain focused on tasks by restricting touch input on selected screen areas. A parent or instructor can also disable the home button, preventing the user from leaving an app. For people with autism or learning disorders this feature will be very welcome, making the iPad a perfect tool for focused learning.

VoiceOver, which aids users with low-vision or blindness, will be improved as well. It will now integrate with AssistiveTouch, Zoom and most impressively, Maps. When coupled with the upcoming turn-by-turn navigation, this new accessibility may remove the need for many current apps that specialize in navigation for people with vision loss. Also those with the new iPad will have the improved Siri digital assistant, who will be partnering with apps that will keep users up to date on sports, movies, and more.
For those with hearing loss, Apple announced on their Web site that they are “working with top manufacturers to introduce hearing aids that will deliver a power-efficient, high-quality digital audio experience.” These hearing aids are being designed for use exclusively with the iPhone 4S. However, we hope to see them also work on the iPad by release date as it would be great for the elderly who often suffer from vision loss.
Overall, Apple has a great record of creating ways that allow everyone to use their iDevices. In iOS 6 they have raised the bar even further. We cannot wait to test out the newest features first hand and report to you. Do you think Apple could do more or have any other suggestions to help those with disabilities?

Here is a more detailed look into the new features.

• Guided Access: for children with autism, this feature will make it easier to stay on task. Guided Access enables a single app mode where the home button can be disabled, so an app is not closed by mistake. In addition, this feature will make it possible to disable touch in certain areas of an app’s interface (navigation, settings button, etc.). This feature could be used to remove some distractions, and to simplify the interface and make an app easier to learn and use for people with cognitive disabilities. Disabling an area of the interface is pretty easy: draw around it with a finger and it will figure out which controls you mean. I loved how Scott Forstall pointed out the other applications of this technology for museums and other education settings (testing), a great example of how inclusive design is for more than just people with disabilities.
• VoiceOver integrated with AssistiveTouch: many people have multiple disabilities, and having this integration between two already excellent accessibility features will make it easier for these individuals to work with their computers by providing an option that addresses multiple needs at once. I work with a wounded veteran who is missing most of one hand, has limited use of the other, and is completely blind. I can’t wait to try out these features together with him.
• VoiceOver integrated with Zoom: people with low vision have had to choose between Zoom and VoiceOver. With IOS 6, we won’t have to make that choice. We will have two features to help us make the most of the vision we have: zoom to magnify and VoiceOver to hear content read aloud and rest our vision.
• VoiceOver integrated with Maps: The VoiceOver integration with Maps should provide another tool for providing even greater  independence for people who are blind, by making it easier for us to navigate our environment.
• Siri’s ability to launch apps: this feature makes Siri even more useful for VoiceOver users, who now have two ways to open an app, using touch or with their voice.
• Custom vibration patterns for alerts: brings the same feature that has been available on the iPhone for phone calls to other alerts. Great for keeping people with hearing disabilities informed of what’s happening on their devices (Twitter and Facebook notifications, etc.).
• FaceTime over 3G: this will make video chat even more available to people with hearing disabilities.
• New Made for iPhone hearing aids: Apple will work with hearing aid manufacturers to introduce new hearing aids with high-quality audio and long battery life.
• Dictionary improvements: for those of us who work with English language learners, IOS 6 will support Spanish, French and German dictionaries. There will also be an option to create a personal dictionary in iCloud to store your own vocabulary words.
• Word highlights in speak selection: the ability to highlight the words as they are spoken aloud by text to speech benefits many  students with learning disabilities. Speak selection (introduced in IOS 5) now has the same capabilities as many third party apps in IOS 6.

These are the big features that were announced, but there were some small touches that are just as important. One of these is the deep integration of Facebook into IOS. Facebook is one of those apps I love and hate at the same time. I love the amount of social integration it provides for me and other people with disabilities, but I hate how often the interface changes and how difficult it is to figure it out with VoiceOver each time an update takes place. My hope is that Apple’s excellent support for accessibility in built-in apps will extend to the new Facebook integration, providing a more accessible alternative to the Facebook app which will continue to support our social inclusion into mainstream society. You can even use Siri to post a Facebook update.

Aside from the new features I mentioned above, I believe the most important accessibility feature shown today is not a built-in feature or an app, but the entire app ecosystem. It is that app ecosystem that has resulted in apps such as AriadneGPS and Toca Boca, both featured in today’s keynote. The built-in features, while great,  can only go so far in meeting the diverse needs of people with disabilities, so apps are essential to ensure that accessibility is implemented in a way that is flexible and customized as much as possible to each person. My hope is that Apple’s focus on accessibility apps today will encourage even more developers to focus on this market.

Another great accessibility feature that often gets ignored is the ease with which IOS can be updated to take advantage of new features such as Guided Access and the new VoiceOver integration. As Scott Forstall showed on chart during the keynote, only about 7% of Android users have upgraded to version 4.0, compared to 80% for IOS 5. What that means is that almost every IOS user out there is taking advantage of AssistiveTouch and Speak Selection, but only a very small group of Android users are taking advantage of the accessibility features in the latest version of Android.

Big props to Apple for all the work they have done to include accessibility in their products, but more importantly for continuing to show people with disabilities in a positive light. I loved seeing a blind person in the last keynote video for Siri. At this keynote, Apple showed another  blind person “taking on an adventure” by navigating the woods near his house independently. As a person with a visual disability myself, I found that inspiring. I salute the team at Apple for continuing to make people with disabilities more visible to the mainstream tech world, and for continuing to support innovation through inclusive design (both internally and through its developer community).

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Cerebral Palsy: Developmental Milestones Birth to 12 Months

By Lee Vander LoopCP Family Network Editor
Many children with cerebral palsy are diagnosed shortly after birth. Others, however, may go months or even years with no diagnosis. Without a diagnosis, valuable early therapies and treatments are delayed.
How is a parent struggling with the question “is my child developing normally?” supposed to tell? If you are concerned, you should not hesitate to talk to your doctor. Trust your hunches. According to research, parental concerns detect 70% – 80% of all disabilities in children. So if your gut is telling you something is not right, chances are, it’s not.
Meanwhile, there are guidelines known as “developmental milestones” to help parents determine whether or not their child is keeping up with his or her peers. These milestones are a set of functional skills or age-specific tasks that most children can do at a certain age range. For children who have suffered a brain injury at birth, however, these guidelines often don’t apply. Depending on the severity and location of the brain injury, some children experiencing developmental delays may be able to achieve milestones only through a variety of therapy and interventions. Others with severe brain injuries may never achieve some developmental milestones.

Signs of Cerebral Palsy in Infants Up to 12 Months

The signs of cerebral palsy vary greatly because there are many different types and levels of disability, but an early indication is a delay in controlling movement of the head or arms and legs. This list of cerebral palsy symptoms, divided by age range, is not comprehensive but serves as a good starting point to determine if your child may have developmental delays. If you see any of these signs, call your child’s doctor or nurse.

• 2 months and older:
  • Have difficulty controlling his head when picked up
  • Have stiff or shaky arms or legs
  • Have stiff legs that cross or “scissor” when picked up
  • Have oral motor difficulties and problems sucking and feeding
• 6 months and older:
  • Continue to exhibit poor head control when picked up
  • May reach with only one hand while keeping the other in a fist
  • Have problems eating and drinking
  • May not roll over without assistance
  • May not be able to push up with their hands when laying on their stomach
• 10 months and older:
  • Crawl by pushing off with one hand and leg while dragging the opposite hand and leg
  • Not be able to sit by himself or herself
• 12 months and older:
  • Not yet crawl or attempt to pull themselves up
  • Not be able to stand with support

Basic Developmental Skills

Cerebral palsy is caused by a problem in the brain that affects a child’s ability to control his or her muscles. Problems in different parts of the brain cause problems in different parts of the body. There are many possible causes of problems, such as genetic conditions, problems with the blood supply to the brain before birth, infections, bleeding in the brain, lack of oxygen, severe jaundice, and head injury. A child who lacks basic motor skills will have difficulty reaching subsequent milestones without help.
The Interdisciplinary Council on Developmental and Learning Disorders Outlines the six basic developmental skills which lay the foundation for all learning and development. Although all children develop at their own rate, growth can be defined in the following areas:

• Gross Motor – Gross motor enables your baby to achieve major milestones such as head control, sitting, crawling, maybe even starting to walk. Children exhibiting a delay in gross motor skills need to be evaluated as early as possible so they can start getting physical therapy to help them strengthen their muscles.
• Fine Motor – These skills allow a child to hold a spoon, or pick up a piece of cereal between thumb and finger. Children exhibiting delays in these skills will have difficulty holding a spoon, manipulating small objects or grasping items between their thumb and fingers.
• Sensory – Sensory skills include seeing, hearing, tasting, touching and smelling.
  A child with a brain injury may have trouble processing information from these senses, a condition known as Sensory Processing Disorder. Normally diagnosed by developmental pediatricians, pediatric neurologists and child psychologists, children experiencing difficulties with sensory processing may exhibit either a “hyper” (over) or “hypo” (under) sensitivity to stimulation of the senses.
An infant with hypersensitivity may:

• Dislike being touched or dressed
• Seem intolerant of normal lighting in a room
• Startle easily at small sounds
An infant with hyposensitivity, may:

• Seem restless and seek stimulation
• Not startle or respond to loud noises
• Language – A child with cerebral palsy may lack the muscle strength in the mouth and tongue to control sounds or may have trouble hearing or processing sound, all of which will delay language. An infant developing normally from birth to 5 months will react to loud sounds, turn her head toward a sound source, watch your face when you speak, make pleasure and displeasure sounds (laugh, giggle, cry, or fuss), and make noise when talked to. Other milestones are listed by the National Institute on Deafness and other Communication Disorders.
• Social and Emotional– Social and emotional milestones are often harder to pinpoint than signs of physical development. A child from birth to 12 months who has trouble processing sensory input or who has poor control of movement because of a brain injury may be delayed in:
  
  • Crying to express distress or to attract attention
  • Fixating on faces
  • Smiling purposefully at certain people (mom, for example)
  • Cooing or laughing to attract attention
  • Playing “peek-a-book” or other game
  • Responding to their own names
  • Developing stranger anxiety
  A full list of both social and emotional milestones is listed here.

An Important Note about Developmental Milestones

Developmental milestones are only guidelines. No two babies are alike and no two develop the same, though most reach certain milestones at similar ages. Every child develops at their own rate. If your child was born prematurely, you will need to look at the guidelines a little differently. Also, all human development depends on environmental stimulation. A child deprived of a loving, nurturing and stimulating environment will experience developmental delays.
Your baby’s physician will evaluate your child’s development at each well-baby visit. Don’t be surprised if the pediatrician tells you not to worry, to be patient, to give your child more time to develop. Often, that’s what parents hear, especially in the early stages of investigating their child’s apparent delays. And it’s often true. Children develop at different rates; the pediatrician is well aware that many children show sudden bursts in development rather than slow, steady growth.
On the other hand, your pediatrician may recommend that a developmental screening be conducted. Its purpose is to see if your child is experiencing a developmental delay. The screening is a quick, general measure of your child’s skills and development. It’s not detailed enough to make a diagnosis, but it will show whether a child should be referred for a more in-depth developmental evaluation.

Resources

You can find a wonderful interactive Milestone Checklist at the CDC, provided by the National Center on Birth Defects and Developmental Disabilities. It details specific developmental accomplishments and allows sharing of forms with other caregivers for their input. http://www.cdc.gov/ncbddd/actearly/milestones/index.html
The American Academy of Pediatrics offers a Parenting website, healthychildren.org: Ages & Stages:
http://www.healthychildren.org/English/ages-stages/baby/pages/Developmental-Milestones-1-Month.aspx
National Library of Medicine, National Institute of Health, Medline Plus, Infant and Newborn development
http://www.nlm.nih.gov/medlineplus/infantandnewborndevelopment.html
March of Dimes, Your Growing Baby
http://www.marchofdimes.com/baby/growing_indepth.html
Center for Disease Control and Prevention, CDC, Child Development
http://www.cdc.gov/ncbddd/child/

The Triumphs and Challenges of My Teenage Years

By Crystal McClure
Writing for the CP Family Network
In my last blog, I wrote about what it was like growing up with cerebral palsy. That story primarily concentrated on my elementary school years. As any adult knows, the middle school and high school years can often be the toughest, especially for children with disabilities. I decided I wanted to share my experiences and the lessons I’ve learned in order to encourage others to persevere through the hurdles they face as a teenager.

Middle School

The transition from elementary to middle school was not as difficult as I had expected it to be. I was going to a brand new school just like everyone else. I reconnected with a few people from my pre-school days at Spring Creek who also have disabilities and use wheelchairs, walkers etc. It was a comfort knowing I “wasn’t the only one.” I became really good friends with Alex Kanavos in the sixth grade. He also has Cerebral Palsy and uses a wheelchair. We still talk to this day.

Near the end of my sixth grade year, I went back to Shriners Hospital in Kentucky, where I had 2 weeks of physical and occupational therapy. I learned how to dress myself, transfer to and from bed, and also how to go to the restroom on my own with someone just there to spot me. This was a big accomplishment in my life and still remains so. It was freeing knowing that I did not have to ask for help to get dressed and that I could do things on my own like any other 12 year old.

However, bathroom breaks proved to be one of my troubling times in middle school. It seemed as though I always had to go at the wrong time. The aides were eating lunch and would ask that I return at a later time, or my teacher didn’t like the time I chose because it was near the end of class. I was allowed to leave class 5 minutes before the bell rang for class change. Sometimes, this still wasn’t enough time to go to the bathroom and get to class in time to get settled. Why? I was not able to use the bathrooms in our wings (each grade had their own hallway). I had to go to the Multi-Handicap room, which was in the middle of the school, to use the restroom. Going into class late was not only an embarrassment for me, but also a disruption to the class as a whole.
Overall, my middle school experience was great with the exception of the bathroom issues. I am grateful that I was able to take those two weeks at Shriners to become more independent. Not only did I learn to do a lot on my own, but it helped shape me into a strong-willed person and gave me high confidence and self-esteem.

High School

High school, on the other hand, proved to be a bit more challenging. I still attended school with many of the same people from both elementary and middle school, but my freshman year we also combined with a school from Chattanooga. I still had the same friends and made many acquaintances along the way. I didn’t have the bathroom issues like I did in middle school, thank goodness.
My main issue in high school was other people. I was bullied. Nothing severe but nonetheless, it is still what I consider bullying. I was trying to go through the cafeteria one day to get to the lunch line and there were students in my way. I said, “Excuse me” three times and no one moved. I then proceeded and blew the horn on my power chair to let students know I needed through. When I did this, a girl got in my face and said some profane words along with telling me I did not have the right to use my horn. There were a couple other instances my Freshman and Sophomore years, but they were addressed by teachers and staff.
One of the most sobering moments of my high school years was not being able to attend my Junior Prom. It was set on a local riverboat which was not handicap accessible. My mother and several teachers I had grown to know well made sure that my Senior Prom was accessible for me. I had my own kind of Cinderella story that night, as in I was home when the clock chimed 12!
My Senior year in itself was probably the one I enjoyed most, but not without some flaws. During the last half of my Senior year I had enough credits to be able to only attend school for half the day. I had no way home in the middle of the day so I chose to attend half-day vocational school. I chose to be in the Graphic Design class there, which ended up being somewhat of a nightmare. I was not able to use the machines to learn anything. Because of this, the teacher just sat me in front of a computer and asked that I write a book about myself. I did this for a while, then quickly realized it wasn’t what I went there for and in essence I was being discriminated against. I addressed this issue with the staff of the school and  they placed me in Cosmetology where I finished the rest of the year.
Graduation day, May 17, 2002, was one of my proudest moments. I am the first person in my family on my Father’s side to receive a high school diploma.

Lessons Learned

Even though there were some rough patches during those seven years, given the opportunity I wouldn’t change them. I learned how to become my own person, and how to persevere and push on through tough times. For this, I am forever grateful.

About the Author

Crystal McClure lives in Tennessee. She owns her own home and holds an Associates Degree in Office Administration. She is pictured with her boyfriend, Mike.

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Dr. James Klausner: Conductive Education

September 12th, 2012
By Danielle Torrent
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James Klausner wasn’t looking for an additional career when he decided to start a rehabilitation program for kids with Cerebral Palsy. He already was quite busy with his day job as a lecturer at University of Florida and a physicist. It would be enough to nominate him for the Spirit of Gainesville award for his work as a professor. But he wanted to help kids in Gainesville, kids just like his son, who passed away at age six. He wanted to make them mobile, more independent, educated and accomplished. Hopefully, he would help them walk. In 2006 he started The Gainesville Conductive Education Academy. With a program modeled after the world famous Peto method, James Klausner took on a second day job without pay. He never turned a child away and as the head of The Jordan Klausner Foundation created in his son’s memory he tried with all his might to balance his need to help the local community with ever limiting funding to keep the facility running. Conductive Education is a method very little known in America, but quite popular worldwide, especially in the 1980′s. It doesn’t enjoy the financial support of insurance or the recognition of the US medical community. Conductive Education was developed in Hungary in the 1940′s. The theory behind was that people with neuromuscular disabilities can learn and improve through routines, movement and repetition. James wanted for the parents in Gainesville to have it as an option, to have the information and then make choices. He created an Academy that was free for most, affordable for the rest and he persuaded a Hungarian conductor, Kata to join his cause.

Dr. James Klausner

25 years ago I was just like the kids James Klausner has helped in Gainesville. I know what it did for me. I know what it’s like to fight with limitations of your own body only to raise above it and get better. Today I’m an attorney. Cerebral Palsy never goes away, of course I can see, but you can limit the way it affects you. That’s what James Klausner tried to do, against the odds, by bringing the approach that helped countless kids to Gainesville. To give them the gift of mobility. And also to start the discussion about the education and therapy choices in America and how we view Cerebral Palsy today. He didn’t make CE widespread, but he got his foot through the door.

This is our last chance to honor Dr Klausner’s efforts. After years of struggles the school has shut down this year. I know it was not an easy decision for him. It’s not that Cerebral Palsy is no longer a concern in Gainesville, but the logistics, the finances, the economic crisis we all live in, finally became too much for this one person, who tried to make a difference. He sacrificed a lot of personal time, energy and money. He thought of others first.

Last year I was nominated for the Spirit of Gainesville award, for my work with the school. But James is the true champion of Conductive Education. I’m just a success story. He has inspired me to help others like me. At the school little miracles happened daily. Yet, the media mostly ignored him. This is our chance to correct it. The school has closed but his efforts were not a failure. Not to his students, his other students, those who now walk, speak and move. Not to me, as I build by career around disability law issues and all the others he has touched. The school has closed, but the Foundation will continue, James assured me. For Jordan and for other kids in Gainesville.

Second Nomination

By day, James Klausner plays the role of what many people would call a rocket scientist. A professor of mechanical and aerospace engineering at the University of Florida, his research in thermal fluid sciences has landed him positions on panels for NASA and the National Science Foundation, and resulted in numerous awards and recognitions for his theoretical and experimental work on heat flow transfer. But the rest of the time, Klausner is focused on improving the lives of children with neuromuscular disabilities in Gainesville and surrounding areas.

In 1999, he established the Jordan Klausner Foundation in memory of his son, Jordan, who was afflicted with cerebral palsy. The foundation is a 501c3 nonprofit run primarily by volunteers that offers a range of services to the disabled community in North Central Florida, including educational opportunities for children, advocacy and legal services. It is mainly supported by parents and relies on grants, donations and McKay scholarships for funding. In 2006, Klausner opened the Gainesville Conductive Education Academy, a Florida charter school that combines rehabilitation and education to help children become more functional and independent. The key to Conductive Education is having children follow carefully designed scripts of exercises to make them stand, move and walk with the use of specially designed furniture that also serve as rehabilitation tools. The facility applies the therapy method developed in Hungary in the 1940s by Andras Peto. Over the decades, Peto’s Institute in Budapest has become a popular destination for Cerebral Palsy parents from all around the world, with many witnessing great progress in their children’s walking, talking and other functionality skills. The Gainesville Conductive Education Academy’s instructor, Katalin Szcoboda, received training for this method in Hungary. The school’s goal – unlike the outcome of many public schools, which results in disabled children becoming dependent on wheelchairs and classroom aides – is for children to become as independent and as functional as they can be. The Jordan Klausner Foundation’s motto states: “Helping special children help themselves.” The school operates year-round, providing otherwise unavailable educational options for North Central Florida’s population of children with disabilities and their families, with the ultimate goal of incorporating students into the public school system. Students have commuted from Orlando and as far north as Georgia to participate in the academy’s summer camp, as there are no other Conductive Education facilities available in the area.

Cerebral Palsy is an umbrella term for a number of neuro-motor disorders involving brain injury at birth or during pregnancy. An estimated two-to-three live births per thousand are diagnosed with the condition, with some studies suggesting raised rates in recent years. It affects children in all countries and all social groups. The condition mostly affects walking, control over limbs, balance and speech and in most cases, renders the body spastic. James Klauser has devoted an immeasurable amount of time and personal sacrifice to get the foundation and school off the ground, organizing fundraising events, applying for Federal grants and ensuring the students have a safe, welcoming facility to attend. He is committed to helping kids in the community and building a sustainable organization that will be able to help generations of families. For more information, please visit www.jordanklausnerfoundation.org.

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Blurring the Line Between Man and Machine

By Stacey Bucklin
A recent story in The Economist focused on a new collaborative research endeavor known as the RoboLaw project. The research will focus on how the law should deal with technologies that blur man and machine. These types of technologies are becoming increasingly relevant as science develops prosthetic limbs and assistive devices that replicate the functions of the human body more closely than ever before.

Individuals with disfigured or missing limbs may choose to replace them with prosthetic ones. People with intellectual or physical limitations that prohibit them from communicating may rely on electronic devices to serve as their voice. These types of artificial devices are commonly used today, but will become more popular as they become more lifelike and less cumbersome for the user.
The RoboLaw project will investigate whether these technologies will be considered part of the person that relies on them. Is a person’s prosthetic limb legally a part of their body? What about a wheelchair that a disabled person relies on for mobility? This may seem trivial, but in cases where the device is lost or damaged, determining the separation between man and machine is critical.

New technologies may impact the very definition of disability as we know it. For example, if robotic devices can restore sight to a blind person, is that person no longer consider disabled? It may be necessary to redefine what disability is, a move which could have great impact on existing disability laws.

The RoboLaw researchers hope to release their findings in 2014. Their announcement could either stifle or spur on future innovation for the disabled. The CP Family Network will be watching this story as it develops so that we can help you understand the possible implications for your CP child and your family.

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