Solar Powered Wheelchair Wins Award

Solar Powered Wheelchair Wins Award
By Energy Matters

A team from University of Virginia’s School of Engineering and Applied Science recently won first place in a 2012 World Cerebral Palsy Day competition for their solar powered wheelchair design.

We first reported on solar wheelchairs back in 2010, when Haidar Taleb had just begun a journey to take him across the United Arab Emirates.

Inspired by roofs on convertible cars, the lightweight solar panels on the U.Va. team’s wheelchair are retractable and don’t significantly add to its length, width, height or weight when stored. A system of hinges on both sides of the chair controls the deployment of the solar panels. The three panels have a conversion efficiency of 15% and a capacity of 160 watts.

Here is a link to a video demonstrating the chair in action!
http://youtu.be/GRr6O-1-Jqk


When fully deployed, the custom solar panels cover an area of over one square meter. The wheelchair can operate for more than 4.5 hours at a speed of 8 kilometres per hour on a fully charged lead acid deep cycle battery, a range increase of more than 40 percent over batteries alone. At a speed of 1.6 km/h and suitable light exposure, the wheelchair and can run “indefinitely”; without needing to utilise battery power.

Built with lightweight materials, while the system may look fragile, it has been designed to operate under conditions more extreme than would be experienced in normal use. The panels and retractable mechanisms account for less than 15% of the completed wheelchair’s unoccupied weight.

Anyone with enough physical dexterity to use a joystick can operate the chair; including retracting and deploying the solar panels. In addition to standard features common to this type of wheelchair, USB power outlets are provided that can power a wide range of small devices.

In a wonderful display of generosity, the team will use their prize money to perform some final tweaks to the chair give it the individual in Turkey who submitted the initial suggestion for a solar-powered wheelchair.

The remaining prize money will be returned to United Cerebral Palsy in support of future World CP Day competitions.

View original article.

Obama Administration Looks To Improve Transition Outcomes

By Michelle Diament

In an effort to identify better strategies to help young people with disabilities transition from school to work, a handful of federal agencies are seeking public input.

Starting Monday, the U.S. Departments of Labor, Education and Health and Human Services as well as the Social Security Administration are kicking off a two-week so-called online dialogue.

The agencies are asking policymakers, educators, service providers, families and youth with disabilities themselves to share their thoughts through a Web interface on how to improve transition outcomes.

Federal officials say they hope to learn about regulatory and legislative barriers that young people with disabilities are facing in accessing employment, education, Social Security and health and human services. Ultimately, the input received on the website may help shape future policies and practices, they said.

“We must ensure that our federal programs and resources support our nation’s youths and young adults with disabilities in reaching their dreams of economic empowerment and independence, and we need to hear from many people,” said Kathy Martinez, assistant secretary of labor for disability employment policy. “Speaking up online can help us identify barriers as well as opportunities that may exist at the federal level and also help us develop solutions.”

View original article.
 

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Woman with Cerebral Palsy Wants to Help the Blind

By Rachel Belle

When Kirkland’s Tania Finlayson communicates, what you hear is a series of beeps.

“I have cerebral palsy, which occurred at birth. My disability makes it hard for me to control my body movements. I have always been non verbal.”

Those words came out of a speaker, in a woman’s computerized voice, attached to her wheelchair. Tania tilts her head back and forth to trigger a couple of devices that allow her to use Morse Code to communicate. The Morse Code is translated to type on a screen in front of her, and then the words come out of a speaker. She started using Morse Code when she was 11 or 12 and it changed her life. She could finally communicate.

“My mom did not dress me in plaid anymore. I could tell on my brother. And I finally had the chance to annoy my dad with question after question about the world.”

Tania is out in the world. Always smiling, she met her husband Ken in a skydiving chatroom. Yes, skydiving. She has jumped from planes countless times.

“We have been together for 15 years and seven years ago we became parents to the most wonderful boy in the world. I have the best family. It still amazes me at times, how lucky I am.”

Tania was at a Flight For Sight Fun Run in Everett, an event that benefits Guide Dogs of America, when she realized just how lucky she was to have her vision.

“I am able to help others despite my physical challenge and I wanted to do more to help. So I thought driving to Spokane would challenge me and something that I could do almost on my own. I told Ken and my son first. Ken thought I was off my rocker but he supports me even so.”

From June 8th through June 11th, Tania will take to the open road and drive her wheelchair 300 miles from Kirkland to Spokane, with a goal of raising $42,000. That’s how much it costs to provide a blind person with a guide dog.

“I thought that she was crazy,” Ken said. “But, I mean, she’s come up with a lot of crazy things, I mean we met skydiving. One thing I learned about Tania is that it’s a lot more comfortable and safer to get behind her when she gets her mind in something, than get in front of her. Because if you get in front of her she’ll probably just run you over.”

Of course, Tania won’t be alone. Ken will ride his bike alongside her, as much as he can, and they’ll have a support van filled with family and friends.

When I asked Tania about where she gets her determination, she credits her family.

“A few doctors told my parents I probably wouldn’t amount to anything and would cause great distress to the family. They suggested my parents put me in an institution. But my parents did not take the advice and took the challenge. My family’s greatest gift to me was they raised me like a normal child and did not expect any less of me throughout my childhood.”

Ken says Tania designed her Morse Code translator herself, despite having a degree in recreation, not engineering, and she now markets the product to others with physical constraints.

Ken thinks she can do anything she puts her mind to.

“People say driving to Spokane is an amazing endeavor,” Tania says. “But in my eyes it is just a pebble in my journey in life to lend a helping hand to Guide Dogs of America. Hopefully I will be able to help knock a boulder out of someone’s path in their journey in life.”

To sponsor Tania’s journey, A Spokane Dash For Puppy Cash, click here or check out the Facebook page.

View original story with audio.

Traditional vs. Special Education for Children with Cerebral Palsy

By John Lehman

Every parent wants their child to have a well-rounded education, and parents of children with cerebral palsy are no different. However, it can be difficult deciding what educational environment will best suit the needs of a child with CP. Some parents find that a special education program, with specially trained instructors, is the best environment for their child. Other children with cerebral palsy benefit more from attending a mainstream school. Of course, every child with cerebral palsy is different, and each option has its advantages and disadvantages.

Mainstream School

This type of school is best suited for children whose cerebral palsy is considered mild, and works best earlier in the child’s education rather than later. Some parents feel that a child with cerebral palsy learns social skills and grows emotionally in a mainstream educational environment. By interacting with non-disabled children, proponents of this option suggest that children with cerebral palsy will learn routine, everyday practices faster. Including children with cerebral palsy in a mainstream school can also be beneficial for non-disabled children, who can learn to develop empathy towards those who are different from them.

Usually, parents and teachers will develop an Individualized Education Program (IEP) to ensure that a child’s needs are attended to. During your child’s schooling years, they may receive physical therapy, speech therapy and special considerations during certain classes. For example, physical educational requirements will likely be different for your child than other children, depending on the severity of their cerebral palsy. These specialized programs can also be beneficial if your child has developed learning disabilities as a result of cerebral palsy.

Special Education

This kind of educational environment is great for children whose cerebral palsy is severe. Unlike mainstream school, a special education system will often have instructors specifically trained to teach a variety of children with disabilities, including those with cerebral palsy. In a special school program, the school’s curriculum is tailored directly to each child’s needs, eliminating the worry that a mainstream school might move too fast for your child.

That is not to say that a child with severe cerebral palsy cannot utilize classes offered by a mainstream program. In fact, many disabled children in a special education program will take art or musical classes at a mainstream school while receiving math, writing and other common classes at their special school program.  Depending on the severity of their condition, some children may receive special education for only specific subjects and use a mainstream school for the majority of their education.

When deciding which educational environment is appropriate for your child, it is important to know that you are not alone. Your child’s teachers, doctors and therapists are all available to assist you and your child as best they can. By working together, you can ensure that your child receives the educational support they need.

Resources:

Education & Society – Cerebral Palsy

Cerebral Palsy World – Education

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Feeding Tubes for Nutrition and Medication

By John Lehman

View similar stories.

Sometimes, depending on the severity of the disorder, children with cerebral palsy have difficulties feeding themselves. In these cases, a feeding tube may be necessary for your child to meet his or her dietary and nutritional requirements. Feeding tubes could also be used to allow your child an easier way to take their medications. Learn more about how feeding tubes can help children with cerebral palsy.

When is a Feeding Tube Necessary?

There are several factors your doctor will consider before recommending the use of a feeding tube, including calorie intake or prolonged lack of weight gain. If calorie intake is not the issue, your child’s medications could be the culprit, as some medications can lead to vitamin deficiencies. In any case, your child’s doctor will evaluate your child’s nutritional needs and determine whether a feeding tube is needed.

What Makes Up the Formula?

Once the use of a feeding tube has been deemed necessary, the next step is determining what sort of food will be used. Your child’s doctor will likely consult with a nutritionist to decide on your child’s diet. There are a variety of options available for you. Doctors or natural food retailers can provide commercially made formulas designed to target specific deficiencies in your child’s diet. You can also make your own formula using a blender and ingredients your child’s doctor has deemed appropriate for your child’s dietary needs.

What is the Procedure?

The process of installing a feeding tube is known as gastrostomy. Depending on how long the tube needs to be installed, the surgeon will either install it through the nose leading into the stomach or directly into the stomach wall. Patients are often put under anesthesia, so the procedure should be painless.

Is Using a Feeding Tube Safe?

Using a feeding tube on children is the subject of some debate. Some medical researchers suggest that their use can lead to complications, including choking, bacterial infections and accidental inhalation of the formula (aspiration). There is also the possibility of organ ruptures, depending on where the device was installed. Keep in mind that it will be necessary to regularly clean the point of entry and ensure your child does not disturb the tube. If the tube is damaged or dislodged, it will need to be surgically replaced.

Despite these risks, research has shown positive results from the use of a feeding tube for children with cerebral palsy. A study was conducted in 1999 to determine the survival rates of children with cerebral palsy who had surgically placed feeding tubes. Of the 61 children, 90% saw improvement in their quality of life. Although it can be hectic to keep up with the schedule of maintenance and nutrition monitoring, the work will pay off by providing your child with a long and healthy life.

Further Reading:

Feeding Tube – WebMD

Feeding Tubes – LiveStrong.com

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Hyperbaric Oxygen Therapy: Does it Work for Children with Cerebral Palsy?

Hyperbaric Oxygen Therapy: Does it Work?

By John Lehman
View similar stories
Hyperbaric Oxygen Therapy (HBOT) is commonly used to treat scuba divers with the bends, but recently, the therapy has been used to treat certain types of cerebral palsy, as well. Opinions vary as to whether or not HBOT is an effective treatment for children with cerebral palsy. Some research has shown improvements in motor, verbal and visual skills. However, others feel there isn’t enough conclusive data to recommend it to people with cerebral palsy. We’ll review both sides of the argument to help you decide if HBOT is the right treatment for your child.

What is Hyperbaric Oxygen Therapy?

When using HBOT, the patient enters a specialized room or a glass chamber designed for manipulating air pressure. The procedure is painless and patients can wear comfortable clothes, listen to the radio, read or watch television while inside the room. The average session lasts roughly an hour, including decompression once the session has finished.
Once the patient is inside, the room is sealed and the air pressure within is raised to a point where the patient is breathing 100 percent oxygen. In comparison, the air you are breathing right now contains approximately 20 percent oxygen. Increasing the air pressure in this way allows for the lungs to take in three times as much oxygen as they normally would. With more oxygen intake within the body, damaged or disabled cells can be regenerated and potentially given a second chance to become functional again.

Are There Any Risks?

As with any medical procedure, risks do exist when using HBOT. Patients undergoing HBOT may experience barotrauma, a form of ear damage related to changes in pressure. The medical practitioner on site should be able to advise you on how to reduce health issues related to compression and decompression, which should prevent this from occurring. Other issues associated with HBOT include oxygen toxicity, headaches or fatigue. Thankfully, these risks are not very common.

Does it Really Work?

HBOT is a controversial treatment for those with cerebral palsy. Within the last decade, many studies have been conducted and results have varied. In 1999, a study was published by researchers at McGill University to test the effectiveness of HBOT in children with cerebral palsy. The study took 25 children with cerebral palsy, who each underwent 20 sessions of HBOT over a month-long period. Follow-up tests concluded that 67 percent of the children showed improvement in movement and a reduction in muscle spasticity.
However, a study from Canada in the late 1980’s was met with skepticism. The study gathered 473 children afflicted with spastic cerebral palsy and administered 20 one-hour sessions of the therapy to 230 children within the group. Upon reevaluation after six months, roughly 75% of the treated children had improved balance and a lowered frequency of convulsions.
The controversy stems from the remaining 243 children who were grouped into a placebo study. Unlike standard placebo studies, these 243 children were treated with a reduced version of HBOT, using 1.3 atmospheres of pressure as opposed to the 1.7 atmospheres of pressure used for the original 230. This has led some researchers to claim that the study did not use a true placebo. An article written by Pierre Marois provides further details regarding this controversy.
Even today, research is ongoing in regards to the effectiveness of HBOT for cerebral palsy. While more studies are published demonstrating improvement in the quality of life for those treated, others point out that the treatment does not cure cerebral palsy and that the effects of HBOT are not permanent. HBOT can also be a costly procedure and, therefore, may not be available for all families whose children have cerebral palsy. In any case, it’s best to speak to your child’s doctor about HBOT to see if the treatment is worth trying for your child.

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DIY Blenderized Diets for Tube Feeding

By Lee Vander LoopCP Family Network Editor
View similar stories.
Some children with severe cerebral palsy have feeding disorders which require tube feeding. Children who are unable to fulfill their nutritional needs using traditional feeding methods, those with oral motor skill dysfunction or children at risk for aspiration are typically candidates for tube feeding.
Often, doctors prescribe a commercial feeding tube diet, called an enteral formula, which has been specifically designed to meet a child’s nutritional requirements. However, parents still have the option to create their own blenderized diets with their doctor’s blessing. After all, homemade blenderized diets were the original tube feeding meals before the introduction of commercial formulas.
Any child with a feeding tube should be followed closely by a nutritionist, regardless of whether they’re on enteral feedings, blenderized diets or any other type of tube feeding regiment. Some parents may prefer a blended diet for their child, but are intimidated with the demands of researching calories, volume and nutritional content of a blended diet. It sounds like a daunting task, but many parents have developed their own easy, time saving techniques!

Is a Blenderized Diet Right for Your Child?

There are many factors to consider when deciding if a blenderized diet is the right choice for your CP child.
Pros:

• Diet can be customized for taste and nutritional need
• May be more cost effective then commercial formulas
• May be better tolerated then commercial formulas
• Can be customized to include a food group rich in any nutrients found lacking

Cons:

• May not provide all vitamin, mineral, fiber, hydration and caloric needs
• Can clog tubes
• Requires close monitoring and supervision by a dietician or nutritionist
• More time consuming than commercial diets

Recipe Sources

We’ve identified a few resources and recipes that parents can refer to when selecting the best blended diet for their child. One site is the Blended Food Resource Group at www.foodfortubies.com. This group provides tube-fed individuals with information, education and support regarding alternatives to commercial formula when medically appropriate.  In addition to their list of recipe suggestions and sample recipes, they highlight:
Pros and cons of a blended diet

• Important information to get started
• Blenders recommendations
• Tips to avoid clogs and guidelines for clog removal

Their forum offers a treasure trove of recipes and guidelines. I was especially impressed with this site when I noted that their sample recipes and forum recipes all provided exact caloric values of each ingredient.
One important factor I found mentioned over and over was the need for a high-speed mixer such as Vitamix, Blendtec or other blender capable of pureeing whole foods.
In the Ainsley Rae’s Blenderized Diet blog, a mom details important tips about how to use a variety of blenders and mixers, and provides guidelines for creating an Excel spreadsheet to accurately record your child’s diet and calories so that they can be reviewed by a nutritionist.

Sample Recipes

Breakfast Blend
1cup whole milk
1 2oz container stage 1 fruit
2 TBSP molasses
1/2 cup baby oatmeal with probiotics and dha
1 heaping spoon of greek yogurt
This makes about 375mls and appx 465cals… (1.2cals/ml)
The breakdown appx is 15g fat, 53g carbs and 12g protein.
Fruit Based Blend
1 tin banana & mango baby puree tin – 90cals
2oz avocado – 90 cals
2 T. cooked quinoa – ~50cals
1/2 t. probiotics
20mls yoghurt – ~20cals
2 t. olive oil 80 cals
2 T. baby rice cereal – 40cals
70mls rice milk – 46cals
+/- 2t. Agave syrup – 31 cals
Total 447 cals, 95%=425cals, therefore over 300mls = ~1.4cals/ml
1^st Blender Meal
1 avocado–350calories
1 pear–95calories
3oz of tofu–70calories
1 cup cheerios–150calories
1 cup whole milk–150calories
3tsp milk fortifier (dari-free)–70calories
2Tbsp flax oil–240calories
probiotic powder
Total calories = 1125

Additional Resources:

Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets
Blog: Mom backs real blended food for tube-fed tot
Blog: Mom blogs about her success with Blenderized Formula @ Homemade Blenderized Formula for G-Tube
Lucy’s Homemade Food Recipes for Feeding Tubes – Real Food for the Tube
Study: “Pureed by Gastrostomy Tube Diet Improves Gagging and Retching in Children with Fundoplication”
Meal Time Notions Products
Blenderized Diet
The Oley Foundation: “Making Your Own Food for Tube Feeding”

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Cerebral Palsy Occupational Therapist

Does your child have an occupational therapist? Check out this informative article (small excerpt located below) about what to expect from your occupational therapist. 

 

 

http://www.cpfamilynetwork.org/blogs/what-to-expect-from-your-occupational-therapist

 

 

Occupational therapy (OT) and rehabilitation deals primarily with the many muscles responsible for wrist, hand, and finger movements, muscles involved in facial expressions, and tongue movement and swallowing reflexes. Occupational therapists are trained in the rehabilitation of these muscle groups to help patients acquire or improve daily living skills needed for self-care, work, and play.

Occupational therapy uses a regiment of exercises, adaptive equipment, and training to help a child achieve the fine motor and life skills needed in work and play, further assisting a child in realizing goals and independence.

This type of therapy can be especially helpful to children with cerebral palsy, but any child experiencing challenges with swallowing, using eating utensils, holding and manipulating a pencil, dressing, or playing with small objects will benefit from occupational therapy.

 

The Best Apps for Children with Cerebral Palsy

Did your child receive an iPad for Christmas? We have compiled a list of APPS you made find helpful. Let us know if there are any others the community should know about in the comments!
http://www.cpfamilynetwork.org/blogs/the-best-apps-for-children-with-cerebral-palsy

Man With Cerebral Palsy Driven By His Passion For Music

Some may say that Korey Soderman dances to a different beat. The 23-year-old music fanatic who was born with cerebral palsy has always been restricted to a wheelchair, but that has never stopped him from rock’n and roll’n.

http://www.cpfamilynetwork.org/in-the-news/man-with-cerebral-palsy-driven-by-his-passion-for-music

Brother Shares Special Bond With Twin Who Has Cerebral Palsy

Here is a beautiful story of twin brothers who share a deep bond, even though one of them is severely handicapped. Read all about this heartwarming story in our latest "In the News" article.

http://www.cpfamilynetwork.org/in-the-news/brother-shares-special-bond-with-twin-who-has-cerebral-palsy

Cerebral Palsy Doesn’t Stop Woman From Earning Black Belt

Have you ever tried martial arts training? It's great way to strengthen muscles and improve balance. Check out this story of a woman with cerebral palsy who just earned her black belt!

http://www.cpfamilynetwork.org/in-the-news/cerebral-palsy-doesnt-stop-woman-from-earning-black-belt

The Total Guide: Home Buying for People With Disabilities

Have you ever wondered how to go about buying a home? Find out more about programs and assistance that can make home ownership a reality for those with disabilities in our latest "In The News" article.

http://www.cpfamilynetwork.org/in-the-news/the-total-guide-home-buying-for-people-with-disabilities

Therapy Options for Children with Tactile Sensitivity

By Lee Vander Loop
CP Family Network Editor

Many children with cerebral palsy experience some type of sensory impairment. A study by a Spanish university concluded that children with CP showed reduced sensitivity to non-painful stimuli but enhanced sensitivity to painful stimuli compared to healthy individuals. What’s behind these sensitivities and what can parents and caregivers do to help?

The Anatomy of Our Senses

The portion of the brain that responds to touch and other environmental stimulation is called the somatosensory cortex.  This system is responsible for multiple sensations including light touch, pain, pressure, and temperature. The somatosensory cortex also assesses the size, shape, and texture of objects based on their feel and helps judge body position using sensory input from the joints, muscle and skin.
Many times, cerebral palsy results in damage to this region of the brain, so it’s not surprising that many children with cerebral palsy experience sensory challenges and difficulties. Data suggest that altered somatosensory brain processing in people with cerebral palsy may cause overstimulation of the portion of the brain.  This can result in inappropriate responses to everyday experiences, such as physical affection, play, bathing and other activities.

Does Your Child Have Tactile Sensitivity?

Every child is sensitive from time to time, but frequent negative reactions to touch may indicate a problem. According to the Family Education Network, signs of tactile sensitivity in children include but are not limited to:

• Becoming upset about being dirty
• Difficulty feeling comfortable in clothing
• Anxiety about walking barefoot
• Avoiding touch
• Unusual sensitivity to pain
• Strong dislike of grooming activities such as nail clipping and hair washing

Children with sensitivities are often irritable and don’t adjust well to changes or new situations. They spend so much energy dealing with the many unpleasant perceptions and sensations they face on a daily basis, they don’t have much left to deal with anything else.

Helping Your Child Cope

If you suspect your child may be experiencing sensory processing difficulties, ask your pediatrician or therapist for an evaluation. If left untreated, tactile sensitivity can seriously interfere with a child’s quality of life.
Children suffering from environmental and tactile sensitivity often benefit from occupational therapy. An occupational therapist will work with a child in a sensory-rich environment to help them learn coping strategies that will allow them to behave in a functional manner in daily life.  Occupational therapy for children is designed to be fun but challenging, with the end goal that the child can eat, play with friends, attend school, and participate in other activities that were difficult before therapy.

At Home Activities

There are many activities you can do with your child at home to help them become more comfortable with “unpleasant” sensations. Your child’s occupational therapist will recommend activities appropriate for your child’s unique situation. A few of the most common at-home therapeutic activities are mentioned here.

The Wilbarger Brushing Protocol

This popular therapy relies on the application of firm and rapid pressure to the arms, hands, back, legs and feet with a specific plastic surgical scrub brush. This is followed by gentle joint compressions to the shoulders, elbows, wrists, hips, ankles and sometimes, fingers and feet. A knowledgeable therapist should tell you if this is an appropriate therapy for your child and show you how to conduct it properly.

Deep Pressure/Weighted Products

There are many wearable weighted products on the market designed to provide deep pressure to children suffering from tactile sensitivity. The deep pressure provides important sensory information to the joints and muscles that helps calm sensitive children. Weighted products should be used under the supervision of a pediatrician or therapist.

Messy Play

Many children with tactile sensitivity have an aversion to touching things of a certain texture or “messy” things. Therapists often encourage children to explore these items through play. Messy play can involve play dough, glue, finger paint, sand or other hands-on materials. Ease into messy play slowly. If your child is fearful of the materials, encourage play in a less threatening way. For example, therapists recommend you allow your child to use your hands to start touching the material. Allow him to put objects in and out of the messy materials. As your child becomes more comfortable with the material, slowly encourage him to explore it more. As with any therapy, you should consult your child’s doctor or therapist before beginning messy play at home.

Conclusion

Tactile sensitivity in children with cerebral palsy can have a huge impact on their quality of life. Supervised therapy should be started at an early age to help a child learn to overcome and cope with his negative reactions to daily activities. For more information about tactile sensitivity, talk to your child’s doctor and check out the additional resources listed below.

Additional Resources

Tactile Sensitivity in Children
Tactile Defensiveness… So THAT’S Why He Acts That Way!

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Hitesh’s Story: Turning Childhood Challenges into Motivation

Editor’s Note: Hitesh developed cerebral palsy after medical errors led to birth injuries. However, he hasn’t let his diagnosis slow him down! He approaches every challenge head-on to prove to himself and those around him that he can do anything he puts his mind to! Here is his story, in his own words.

By Hitesh Ramchandani

My Birth

On 20th January 1992 at 0144 hours I arrived on the planet called “Earth”. My mother and father were waiting for my arrival excitedly. I was their first child and unfortunately, they were not aware that their excitement was going to be changed into their biggest nightmare. The doctor made some mistakes during the delivery and as a result, I was born with cerebral palsy. I was labeled as disabled. My parents were taken aback, stunned and did not know how to react. Best part was, my mom did not even know what “cerebral palsy” was.

My Parents

My parents were strong and positive people. They knew deep down that God had given them such a child for a reason. They always treated me as a normal person. My father and mother had this strong belief that I would recover, never did they give up on me. The two of them always encouraged and motivated me to give my best in what ever I did. Doctors and teachers recommended to them to put me in a special school but they fought against it and made life for me as normal as any other child. They did not let the doctors’ opinion become their belief. They showered me with love. They spent a lot of time and money on my treatment. Due to that, I reached such a high level that whenever I looked down, I could not even measure how many levels and obstacles I have climbed! I love my parents – it  is such a blessing to have them.  My mom is the greatest woman – she used to take hours each day to make me drink a bottle of milk because she had to take caution that I did not choke due to my weak lungs.

My Childhood

Due to my problem, I had a tough childhood. People always made fun of me, imitated me. Some kids even thought I was an alien. This was due to the fact that during that time, the problem was bad. I could not even stand straight. My walking was like a drunken man walking. I had to use support; otherwise, I would lose balance. My speech was like an alien’s and people could not comprehend what I was saying. My muscles were extremely tight and tensed, especially muscles on my left, and I could not co-ordinate them. When people used to discourage me and make fun of the way I am, as a kid I would go home and cry. I still remember when I was 5 – I went to the park and no kid wanted to play with me because they thought I had a virus and if they touched me, they would be infected too! It makes me laugh when I remember that but during that moment I was so upset that I could not stop crying.  I thought God hated me and He was taking revenge – I was filled with anger and grief. Despite all the negativities, in my heart I always knew I was the best and I lived with a positive attitude. I knew that if I let the world break me, I would be finished before even beginning the race of life.
The positive things in my childhood were I had made amazing friends like Rahul Prem and Shiv Tulsiani. They are both my best buddies till today! They always encouraged me and lifted me up whenever I fell. I am also very lucky to have fantastic cousins like Vicky Vaswani and Karan Ramchandani; they are both like my elder brothers, backing me up whenever I need them. The best thing in my childhood was Natasha Ramchandani – the sweet little angel who entered my family when I was four. My mother gave birth to her on 1st June 1996. The first time I learnt how to walk was when Natasha was two and I was six – she started walking and I was surprised.  If she could walk, then why couldn’t I? Thus, I used that as a challenge and finally, I started walking.

Haig Boys’ Primary School

I entered Haig Boys’ Primary School at the age of 7. Every child is excited about the 1st day of school, but for me, it was the other way round. I was afraid that others would make fun of me and judge me. I was worried if I could cope with the schoolwork or not. I did not know if anyone would be my friend.
My classroom was on the 3rd floor and everybody used the stairs up to class but due to my disability, the school gave me the privilege to use a wheel-chair and a pass to use the lift. I was tempted to use those privileges, but I knew if I took advantage of them, I would never improve and remain where I was. Eventually, I decided to ditch the wheelchair and the lift pass and started to make my way up the stairs, just like everyone else – I did not need any “special” treatments.  The first time when everyone saw me climb up the stairs, despite the difficulty I faced each step, I became the school’s little hero. My principal was honoured to have me in the school and he believed I could be a symbol of inspiration to all the students. Despite my limitations, I always tried my best in my studies too and received passing marks most of the time, with some ‘A’ grades even.
There were times I failed, but my parents taught me that every failure is just another step closer to success. Most people fear failure but the most important thing they fail to understand is that failure brings one closer to success. Instead of regretting and lamenting on your mistakes and failure, learn from them and move on in life.
For example, if you have a gun in your hand and a bottle across from you, and your task is to shoot the bottle down, you just need to follow the steps.  Step one: you get ready, Step 2: you aim, Step 3: fire. If you miss, you won’t be crying right? You must repeat the three steps again and again until you get the bottle down. In fact, failing will just show you how inaccurate your aim was and the actions you need to take to make your next aim more accurate. So why can’t we apply the same concept in life?

Learning to Ride My Bicycle

My classmates would go cycling at the beach and I would be left out because I could not ride a bicycle. Thus, it became my motive to learn how to ride a bicycle. An average kid takes about 1-2 weeks to learn how to ride a cycle. It took me 3 months because of my condition – 91 days to be exact.
I used to practice cycling under my condominium everyday after school. Each day, I would come home with bruises on different parts of my body but still but I never gave up.  I was persistent.  I had to conquer this task!  One day I was practicing near the pool-side. I was so embarrassed that day because I ended up in the pool with my bike and so many people watching. I went home disappointed. I told myself, “never mind I will try harder tomorrow”. I was determined to learn this skill, despite the embarrassing failures that I encountered. On the 91st day, my body finally learned how to balance and I was riding a bicycle – IT  WAS BEAUTIFUL! The feeling was as good as flying.  I will never forget that day!
The moral is, don’t ever lose hope and give up. If I had given up on the 90th day, then I would have never seen the 91st day. Keep going and going, till you make it.

About the Author

Hitesh Ramchandani is now 20 years old and is pursuing his diploma in management studies at the Singapore Institute of Management. He is also taking a Neuro-linguistic programming course outside of school and is  a member of the Toast Master Club Singapore. His desire is to motivate everyone out there to never give up and to fight to the end. Most importantly, he wants to tell others, “don’t ever be discouraged by your problems because the bigger your problem, the bigger your destiny.”

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Student with Cerebral Palsy Achieves Academic Excellence

November 6, 2012
By Lissette Argenal

Design major Tony Dang’s smile reflects the resilience of the human spirit.

“My family is my strength,” Dang said through the augmentative communication device attached on his wheelchair.

At 3 months old, Dang underwent surgery and although the surgery was successful, it left him with many complications and limitations. Dang was diagnosed with Cerebral Palsy.

Despite the fact Dang has been disabled his whole life, not being able to walk or talk and having to overcome the boundaries of a wheelchair, his determination has been evident throughout his life.

“Tony is special to us and our family. He’s a very smart boy,” Dang’s mother Debbie Chau said.

Since the third grade, Dang formed part of the city of Berkeley Bay Cruisers power soccer team program until 2007.
He has won many championships throughout his years of participation, and even obtained third place in 2007 in the state of Indiana.

Dang graduated from Richmond High School and obtained a 4.0 GPA last spring semester at Contra Costa College.

Art department Chairperson John Diestler said that Dang sees the world as a great place, one in which he wants to be involved.

“He has a joy of learning because he has a joy of living,” Diestler said. “Tony might have some limitations, but don’t we all. The difference is Tony knows his limitations and works around (them).”

Dang said that Diestler is nice for believing in him.

Dang’s kind and gentle presence is felt by everyone who knows him. Longtime friend of Dang and his sister Jenny, Brandy Khamsouvong, said a person cannot help but feel joy when he or she is around him.

“He is like a brother to me. He is very close to his sister Jenny. He is a smart, outgoing person. He is active and likes to smile. Every time I see him he smiles,” Khamsouvong said.

Chau said she is proud of the young man her son has become.

She has made sure that throughout his life he does not feel any different from anyone else and most importantly experiences his true potential in life.

Chau made sure Dang attended preschool, kindergarten, elementary, junior high school and high school in the public school system.

“Because he is smart, he understands, and when we, my husband and I, get old in the future he will be able to take care of himself and be independent. I know he can do it because he is very smart. That’s why I try to do everything I can possibly do for him,” Chau said.

Dang shared his dream of one day being able to become independent and write music.

“I want to be rich and independent. I want to work hard and create beats,” Dang said.

Dang has written a song titled “Freestyle” and said he hopes people don’t underestimate people who appear different than them.

“Don’t think disabled people aren’t smart, because they are very smart,” he said.

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Finding Justice for Bailey

By Terresa Gaither

Mothers’ Day will always be a mixture of joy and sorrow for me. My son, Bailey, was born on this day, May 9, 1999, and I’ve been blessed by his existence every day for 13 years.
It was also the holiday that my doctors and nurses delayed too long in delivering Bailey, resulting in brain damage.
For a long time I blamed myself and God. I kept asking, “Why me?” Then, a very special person in my life told me that God gives special babies to special people. I feel honored to be the mother of a child with disabilities.
I ended up filing a lawsuit over Bailey’s birth. According to my suit, my doctor and nurses were negligent in continuing to give me larger and larger doses of Pitocin (a drug to induce labor), even though Bailey was showing signs of fetal distress. As a result, Bailey suffered “severe and permanent neurological damage,” by the time he was born, my lawsuit notes.
The doctor used a vacuum extractor to deliver Bailey, who weighed 8 pounds 15 ounces and was 21 inches long. I suffered major blood loss and third degree vaginal tears, which required surgical repairs, my suit documents.
According to my attorneys, the doctor should have come to the hospital sooner and delivered Bailey by C-section.

Normal Pregnancy Turns into Nightmare

Bailey was immediately transferred to the NICU at another hospital nearly 60 miles away. I remember before he left, getting to see him for 5 minutes, long enough to tell him I loved him. I wasn’t even able to touch him. You can’t imagine how hard it is to lay in a hospital bed while your son is in another hospital over an hour away fighting for his life.

Specialist Raises Questions About the Birth

Since that day, my husband, David, and I have had to fight for Bailey, who has mixed spastic dynostic cerebral palsy. He cannot speak, walk, sit up or feed himself.
The diagnosis took a year and a half and came from a specialist at a larger hospital near our small town in Alabama. He looked through Bailey’s medical records and, after telling us Bailey would always need specialized care, asked us if we had thought about getting an attorney.
We discussed his question all the way home and we made a decision together to start pulling Bailey’s medical records. It took me three months just to get the records from the hospital and the medical practice.

Persistence Leads to Janet, Jenner & Suggs

The first law firm we contacted kept our files for two years before saying they weren’t equipped to handle the case and that there wasn’t any negligence. The second law firm concluded the case was too big for them to handle, but advised us to keep pursuing legal action.  
At this time, we felt like giving up. It was my mom who wouldn’t let us, encouraging us to push forward.
While researching a special education class for Bailey on the Web, an advertisement for Janet Jenner and Suggs’ law firm caught my eye. I filled out the short contact form and within two weeks, a nurse called and asked me detailed questions. The firm took the case.
Because of a confidentiality agreement, I can’t disclose what happened with the case. But, I can tell you it was a long, drawn out process. But JJ&S attorneys kept us in the loop and assured us every step of the way.
Ken Suggs wasn’t just our attorney, he became our friend. We could tell he really cared about Bailey and we feel honored to have this remarkable attorney in our son’s corner. He’s the kind of attorney who is passionate about speaking for the kids who can’t speak for themselves.
About our case, Ken said, “It was obvious from looking at the medical records that standards of care weren’t followed. Typical of these cases, it wasn’t a single mistake, but a series of missteps and miscommunications that led to the outcome. The firm connected the dots, using the medical and legal expertise it is known for. Bailey and his family have a special place in my life, and always will.”

Bailey is the Joy of Our Lives

Bailey loves to go to school, play outside and spend summers on the lake. But what he enjoys the most is spending time with his brother, Cody, and his grandpa, Wes. He’s just a regular boy trapped in a body that doesn’t allow him to do the things he wants.
No matter what kind of a day we’ve had, Bailey can always make it better just by smiling. He is the joy of our lives.

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Columbia Launches Center For Cerebral Palsy Patients

October 30, 2012
By V.L. HENDRICKSON

When Debby and Peter Weinberg’s son, Henry, was diagnosed with a rare form of Cerebral Palsy when he was 3 months old, the family was lucky to able to turn to the doctors at Columbia University Medical Center for care. But, as Henry approaches adulthood, he has far fewer options for care.
“Ninety percent of CP patients now live until adulthood,” Mrs. Weinberg said. “That wasn’t always the case. Now there’s a big population of patients living to adulthood and no one was focusing on them. The focus was always on pediatrics.”
“Cerebral palsy is a little bit of an orphan disease, and hasn’t attracted a lot of attention over the years,” said Mr. Weinberg, who is a founding partner at Perella Weinberg Partners LP, a global financial-services firm. The center is a collection “of efforts to help people with CP with their issues.”
Patients with cerebral palsy, a group of disorders that affects speech, movement and cognitive function, often need special treatment from doctors experienced with the range of complications that can arise from even routine operations. Mrs. Weinberg relayed the experience of one adult CP patient, in need of hip surgery, who was referred by an orthopedic surgeon to a pediatrician who had experience with CP. The pediatrician, of course, wouldn’t operate on an adult. Fortunately, the patient was able to get care at Columbia’s new center, which has already begun reaching out to the CP community.
In addition to providing treatment for patients of all ages, the center, led by Dr. David P. Roye Jr., the St. Giles professor of pediatric orthopedic surgery at CUMC, will also help coordinate care for CP patients, educate their families and caregivers and conduct research. Doctors will study the impact of various treatments, to see if they make patients “more mobile, more independent, more pain free,” said Mrs. Weinberg. “If they give patients a better quality of life—that’s the goal.”
In addition, a patient registry of CP patients has been established at the center, providing valuable data for doctors and researchers all over the country. “The patient registry is in its infant stages, but it’s already the largest in the country,” Mrs. Weinberg said. “Lack of data has always been a problem.”
Henry, the Weinberg’s son, is now 17 years old and thriving in high school. But the family, who live in Greenwich, Conn., is relieved to know he will continue to have access to the best doctors as he becomes an adult. “There’s a lot of anxiety on the part of parents as to where their children will get care,” Mrs. Weinberg said.
The new center, a celebration of which was also scheduled for Tuesday, but will be rescheduled because of inclement weather, will help alleviate that anxiety for families all over the New York region.

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Student Finds Inspiration In Runner With Cerebral Palsy

October 22, 2012
By Arian Smedley

For Colt Yinger, a 13-year-old at Nelsonville-York Middle School, sports are second nature. He’s in his first year of cross country, plays football and performs in wrestling competitions around the country. He’s the type of kid who goes running with his dad even after a grueling football practice.

When he met Lucas Norman, a fellow 13-year-old cross country runner who suffers from a mild form of cerebral palsy, Yinger saw another example of dedication and hard work.

Cerebral palsy refers to a number of neurological disorders that affect body movement and muscle coordination, according to the National Institute of Neurological Disorders and Strokes.

“Seeing he has more trouble than everybody else race and with him having his problems really upset me,” Yinger said. “As I was watching him race every race to the best of his ability, giving it all he has, that inspired me. It inspired me to do what I did.”

Their last meet, the Tri-Valley Conference, was held on Oct. 13 at Wellston Middle School — Norman’s home school. When Yinger completed his race — placing sixth overall — he ran back to Norman and ran alongside him for the remainder of the course, encouraging him and cheering him on. That kind of gesture is appreciated even within one’s own team or in practice, but with an opponent and in competition, it stands out even more so.

This wasn’t the first time Yinger offered the support. When Norman tripped and lost his shoe in an earlier meet, Yinger picked up his glasses and helped him up, urging him to continue.

“I thought that was pretty nice of him,” Norman said Friday. “My mom said most people wouldn’t do that anymore.”

But that wasn’t enough for Yinger. After receiving his medal at the conference, he decided to give it to Norman to keep.

“This young man represented his school, Nelsonville-York, in such a positive way,” wrote Shelley Norman, Lucas’s mom, on the website www.trivalleyconference.com.

“I didn’t know what to think about it; he was really nice for doing it,” Norman said.

“For someone as a seventh grader to be that altruistic and think about other people makes me the most proud of him,” said Assistant Coach Noah Watkins, who was the acting head coach on the day of the last meet.

“(Colt) has been blessed with a lot of athleticism,” Watkins continued. “For him to see someone who wasn’t given everything that he was given athletically, he sees that as inspiration to see someone fight through a disability and overcome the odds. Plus, he’s found a friend out of it.”

Of the support he gets from Yinger and others, Norman said it can go both ways.

“It can get loud, and sometimes that makes me nervous, but sometimes when they’re cheering you on, you’ll just go faster,” he said.

When told Yinger is inspired by him, Norman said, “I think it’s really cool that he thinks of me like that.”

“I didn’t expect any attention to come to this,” Yinger said. “This is just something I just knew that I had to do, and I felt it was right to do.”

Shelley Norman wrote that she has found hope for the next generation.

“He is a true role model, and I will be forever grateful for the confidence he instilled in my son with one random act of kindness. … I am so proud of them both,” she continued.

Norman, whose participation this year was the first time he’d ever joined a sport, said he plans to run again next year. He’s also planning to wrestle and run track.

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