Navigating the World in a Wheelchair

By Crystal McClure

View similar stories.

One of the greatest challenges an individual with a disability faces is the issue of accessibility. Even today, there are still many places that are not fully accessible to those with disabilities; specifically those who use wheelchairs. Wheelchair-friendly establishments continue to be the exception rather than the rule.

Accessibility in the Home

As a child, I was often unaware of how often my wheelchair made it difficult for me to visit certain places. My parents did everything they could to ensure that my wheelchair did not cause me to be left out of many life experiences. They made modifications where necessary so places and things were accessible. My dad built ramps into our house so I could enter and exit the house on my own. When I reached my teen years, he made sure the bathroom was modified so I could do things on my own. Each time my grandfather built a new home for himself and my grandmother, he always made sure that I could get through all doors and hallways inside the house. I am very grateful to my family for always keeping an eye out for accessibility issues, whether in the home or out in public.

When I became an adult and had the privilege of purchasing my own home, only minor modifications had to be made. A ramp was installed to allow me to enter and exit. My dad installed a new high rise toilet so I would be able to use the bathroom without the need for a toilet chair over the commode at all times. This has made living on my own so much easier.

Challenges of Public Restrooms

Often, one of the biggest frustrations for those who use wheelchairs is public restrooms. During my childhood, my mother had to lift me on and off the toilet. Most times we would use a regular stall, which meant the door would not shut because of my wheelchair. This made me very nervous and I would hold it or not be able to use the restroom even though I really needed to go.

Many times, public restrooms are not big enough to accommodate larger-than-average wheelchairs, and in some cases, are not even designed to accommodate a regular size chair. This has been my experience in restaurants and hotels. Just as when I was a child, I have been in restaurants where my wheelchair barely fit into the stall and I could not close the door. When faced with this obstacle, I request to speak to the manager and am often told the restroom meets the required code.

While I understand public places meet code by having the handrails and a wider stall, that does not always mean that it is accessible for someone in a wheelchair. In my personal experience, the handrails are of no use to me as they are up too high and too far away from the toilet. When I do try to use them, I end up pulling my wheelchair under them instead of being able to pivot my body as needed. This has also caused me to jam my knees under a toilet paper holder.

Another issue I have with restrooms is my wheelchair sliding across the floor when I transfer. I have fallen many times because of this. It is very difficult to transfer when the toilet is standard height. Hotel showers are also not wheelchair accessible in many cases. This means that unless the person has someone with them who can lift them safely in and out of the bathtub, they have to sponge bathe and wash their hair in the sink.

Simple Steps to Improve Wheelchair Accessibility

There are some things that can be done to help improve accessibility for wheelchairs in public restrooms. First, persons building the restroom should make sure the stall is big enough to accommodate any size wheelchair and even scooters. Next, place rubber non-skid mats in front of the toilets. This will help secure the wheelchair into place so that it does not roll out or away from the user when he or she is transferring. Finally, all toilets in handicap stalls should be higher than a standard toilet. This will also help with the ease of transferring and reduce the chance that a handicapped person will fall.

Often times, the main door to the restroom is heavy and difficult to open in a wheelchair. I have been in some restrooms where the main door had a push button for opening. This would benefit accessibility for the disabled in all restrooms. If these steps were taken to ensure accessibility for those in wheelchairs, more issues such as these would likely be noticed and addressed.

Speak Up

As the caregiver of a child with a disability, you have the right to speak up and bring accessibility issues to the attention of management. Do not be afraid to be that voice your child needs you to be! As they say, it only takes one person speaking up to make a change. So, let’s speak up and see a change made for the benefit of the wheelchair community.

Have you or your child had frustrating experiences with wheelchair accessibility? Do you have any creative solutions or suggestions? Let us know in the comments!

Join Our Family

Sign up for our free e-newsletter for more blogs, articles and news about CP kids and their families.

Musician With Cerebral Palsy Advocates Against Bullying

Check out how this awesome musician with cerebral palsy stands up for kids who have been bullied. Read more about his music and passion for those with cerebral palsy in our latest "In the News" article. 

http://www.cpfamilynetwork.org/in-the-news/musician-with-cerebral-palsy-advocates-against-bullying

High School Senior Doesn’t Let Cerebral Palsy Slow Him Down

Doctors weren’t sure whether Ethan Schumann would live or die when he was born two months premature. Today Ethan is #1 in his high school senior class. Read more about Ethan and his inspirational story in our latest "In The News" story.

http://www.cpfamilynetwork.org/in-the-news/high-school-senior-doesnt-let-cerebral-palsy-slow-him-down

Inventors Called on to Develop Solar Powered Wheelchairs for People with Cerebral Palsy

Earlier this year, "World CP Day" held a global contest asking for inventors, designers, and developers to come up with ideas that would change the world for those with cerebral palsy. There were hundreds of submissions and the organization has settled on 3 that they think could make the biggest impact. Read about the 3 ideas in our latest "In The News" article.


http://www.cpfamilynetwork.org/in-the-news/inventors-called-on-to-develop-solar-powered-wheelchairs-for-people-with-cerebral-palsy

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!

Join Our Family

Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

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.

Join Our Family
Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

For more information about Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

Overcoming All Obstacles: Amanda Henderson Doesn’t Let CP Stop Her

Amanda Henderson’s life hasn’t been easy. But it’s the hardships that have made her stronger.
Henderson was born an orphan with cerebral palsy in Moscow, Russia, in 1997. When her parents Dee and Ken Henderson adopted her, at the age of 22 months, she couldn’t walk or talk. She’s undergone two major reconstructive surgeries, numerous treatments and has endured physical therapy nearly every day since the age of 2. Yet, despite the struggles, Amanda Henderson has flourished.


On the field, she’s a leader for the South Washington County Thunderbolts softball and soccer teams. Off the field, she’s an “A” student, an advocate for valuable programs and all-around sweet girl.
“She is resilient, tenacious and passionate,” Thunderbolts head coach John Culbertson said. “That goes for her schoolwork, Special Olympics, the Thunderbolts, her friends, you name it. I think she wants to prove she can overcome. She definitely knows what she wants and will work her butt off to get it.”

Her list of accomplishments isn’t a short one.
A junior at East Ridge High School, Amanda is currently a co-captain of the South Washington County Thunderbolts adapted soccer team. She’s also been a captain of the Thundberbolts softball team, where she’s a two-time All-Conference player and has earned team MVP and All-State Tournament honors.

Last winter, she not only won a gold and two silvers in the Special Olympics as a swimmer, she also volunteers for the organization on the Youth Activation Committee and helped raise $1,000 for the program by organizing a Polar Bear Plunge fundraiser. She also advocates for Spread the Word to Stop the Word – a national campaign that encourages people to pledge to stop using the word “retard.”

She has 10 varsity letters, was a National Honor Society member as a freshman and is an East Ridge Ambassador. Amanda is not only enrolled in entirely regular-curriculum courses at East Ridge, she also takes Advanced Placement classes and holds a 3.84 grade point average.
In two years she hopes to go to college in order to study Graphic Communication. She also currently has her driver’s permit and will soon obtain her license to drive.
However, what stands out even more than the accolades and accomplishments, is Amanda Henderson’s bright spirit and happy demeanor. She has a peaceful energy and her positivity is contagious.
“She’s just very friendly,” Thunderbolts assistant coach Lindsay Bolin said. “All the kids can go up to her and talk about anything. She’s very open. Even when she is having a bad day, she never shows it. She is always smiling.”

Cerebral palsy (CP) causes physical disability in development, mainly in the realm of body movement. Other conditions can include seizures, epilepsy, speech and language or other communication disorders, along with eating problems, sensory impairments, mental retardation and learning and behavioral disorders, among other issues.

Since birth, Amanda has been effected on her right side with CP. It’s believed when she was born, blood vessels burst effecting her development – some cognitive, but mostly physical.
“When we got to the orphanage in Russia, the doctor asked us if we knew about her legs,” Dee Henderson said. “That was the first we had heard of it. We knew that she would need glasses. That wasn’t a big issue. But, the doctor said she probably had something like Cerebral palsy.”
Though shocked to learn of her disability, Dee and Ken Henderson didn’t waver and brought baby Amanda back to Minnesota, where she’s lived ever since.
“Even before we had a chance to meet Amanda, we fell in love with her when we saw her on a videotape,” Dee Henderson said. “I knew from the moment I saw her – her eyes and her smile – she was the only child I wanted to adopt.”

Learning to function physically has been a daily struggle for the Amanda. Throughout her life, amid the numerous surgeries, casts and procedures, the Hendersons literally had to teach Amanda how to crawl and walk and train her to be ambidextrous with both her feet and her hands.
“For the most part, with a lot of physical therapy and macaroni and cheese and French fries, she’s a happy, healthy young lady,” Dee Henderson said. “Most people don’t even know she has Cerebral palsy.”

Though she didn’t want to try it at first, Amanda has played softball for the Thunderbolts since seventh grade and soccer since eighth grade.
“I think it helps me stay in shape and not be a couch potato,” Amanda said. “It helps me with my Cerebral palsy, because it keeps me practicing with my right leg. I’ve seen improvement with myself from last year. I’m actually even using my right leg more than my left now.”
This fall, Amanda’s teammates elected her as one of two co-captains of the Thunderbolts soccer team. She said she wasn’t expecting it “at all.”
“The other players sometimes come to me for advice,” Amanda said. “Since I am one of the better players, I guess, I know what to do and can help them to improve. That gives me a sense of accomplishment that I can actually help out.”

Amanda said she likes both softball and soccer for different reasons. She said softball is more mental and soccer is more physical.
“I think the most important thing about adapted sports is that it’s given her the confidence to believe that she can compete in sports, that she can be a leader and she can participate in something she may not have thought she could,” Dee Henderson said. “So often these kids have struggles in life that not everyone else has. To see the joy this brings them, when they wouldn’t necessarily have that is just wonderful.”

The Minnesota Adapted Athletics Association first formed in 1984. Its mission is to “provide youth with disabilities the same opportunity as other students to enjoy the benefits of a quality high school sports program.” In 1992 the MAAA was accepted into the Minnesota State High School League. Minnesota is the only state in the country with a high school sports league for kids with disabilities.
“The state of Minnesota deserves a lot of credit, because a lot of states don’t have these kinds of programs,” Ken Henderson said. “For a lot of these kids, it’s not all about winning, it’s about competing. They like to win, don’t get me wrong, but those kids are having fun win or lose. Amanda enjoys being successful at it and being with these kids. There’s a lot of camaraderie between these kids. There’s a community and a lot of support.”

Culbertson said he witnessed a progression in Amanda before last year.
“When she took over the pitching job in softball, we kind of saw a blossoming and a growth in terms of physical ability, confidence and the other kids looking up to her,” he said. “She’s one of those kids you love to coach, because she will look you in the eye, listen to you and go out and do it.
“I don’t have kids, but if I did, I’d love to have a kid like that.”

Join Our Family
Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

Teen With Cerebral Palsy Bridges Gap For Those With Disabilities

November 1, 2012
By Lissa Blake

Imagine having to play charades all day in order to get others to understand you.

That’s what life is like for Lydia Dawley, a sophomore at Decorah High School who suffers from cerebral palsy.


“It’s very frustrating,” said Dawley.

But although Dawley is confined to a wheelchair, she doesn’t let it get her down – or even slow her down. Dawley is becoming an outspoken advocate for persons with disabilities, presenting to college classes, at political forums, symposiums and conventions.

“Making your voice heard is only one part. The wheelchair doesn’t define me. It means you have to do things differently, not that you can’t do things,” she said.

Dawley recently returned from a trip to Des Moines, where she was a special guest at the Midwest Association for Medical Equipment Suppliers (MAMES).

Dawley, who dreams of someday being a lead advocate for persons with disabilities, said she enjoyed having the chance to meet Congressman Tom Latham.

“I feel so honored … I was so interested in listening to what he was saying and learning so much more about government and what I can do to help make a difference for others. I have already started writing some letters,” she said.

While Lydia is non-verbal, she is still cognitively on target. She is able to “speak” through an augmentive communication device which is attached to her wheelchair. The apparatus, available through Talk to Me Technology, works two ways: first, there is a camera attached to the screen. It zones in on the pupil of her eye, which she can then use to point to letters on a keyboard. Second, she has a Blue Tooth attachment on her wheelchair joystick.

“What is so cool about this is it sends a light to the pupil of my eye. Without this, I wouldn’t have the opportunity to speak in class or communicate with my friends,” said Lydia.

While this method of communication is relatively time-consuming, she has some preprogrammed phrases that help her on a daily basis. When preparing a lengthy speech like the one she gave at MAMES, she develops the text ahead of time, and is then able to play her speech, which sounds like a computerized female voice.

“She has a business card that says ‘A teenager with a voice! Trying to close the gap,’” said her mother, Jacque.

In the speech she typically gives, Lydia explains how she was born with her umbilical chord wrapped twice around her neck.

“I wasn’t breathing and was brought back to life. So now you can tell people you met a dead person,” quips Lydia.

She explains that cerebral palsy is a non-progressive, non-curable disease that she will have all her life. It results in a group of chronic conditions which inhibit her body movements and muscle coordination.

She credits her amazing drive and motivation to the support of her parents, Nathan and Jacque Dawley, of Bluffton.

“When I was 18 months old, a doctor tried to tell my parents they needed to accept that I was disabled. My dad picked me up and walked out of the room. Lucky for me, my parents have always listened to their gut feeling. They’ve always given me a chance,” she said.

“If my parents had listened to that doctor that day, I wouldn’t be here today to talk to you. People believing in me gives me the feeling there’s nothing I can’t do,” she said.


Early support:

Dawley said because she is non-verbal, she had to learn to read at a very young age to be able to communicate.

“My preschool teacher, Beth Crawford, told my parents, “There is something in this girl’s head,” said Lydia.

“I learned early on to communicate in nontraditional ways, to make friends, to get along in life. Interestingly enough, I witnessed some amazing changes in other students. They realized that if a person who can’t walk can do the things I was doing, everyone is capable if you believe in them.”


No limits:

Dawley is active in 4-H and shows goats, sheep, horses and her dog at the fair. She also gave her prepared advocacy speech through a communication competition in 4-H.

At school, she recently participated in speech competition. Her instructor, Amanda Huinker, helped pave the way for her to utilize her assistive technology device to excel at district competition, after which she moved on to state, receiving No. 1 ratings from all the judges.

Huinker said she really enjoyed working with Lydia on her speech.

“The process of working with Lydia was such a positive one; I too grew from the experience. She is an amazingly sweet girl who wants to make her mark on the world just like everyone else, and she most definitely does have the power to make a difference through her words; the fact that her words come through the voice of a computer doesn’t change the powerful message behind them – perhaps it even strengthens it,” said Huinker.

In her spare time, Lydia works with families of children with disabilities at Team Rehab in Decorah. In 2001, the Dawleys traveled to Poland with therapist Lisa Krieg to learn about Therasuit therapy, which is now available to patients in Decorah.

“Lydia talks to a lot of the patients who go there as an inspiration for the patient and their parents, of how not to let obstacles get in your way. They see what an inspiration Lydia is. How life doesn’t have to stop because they have a disability,” said Jacque, who added she is willing to help families get in touch with the companies who offer the assistive technology her daughter uses.


So proud:

Jacque said she and Nathan are so proud of Lydia and how she has become such a strong advocate.

She credits much of Lydia’s success to the Decorah School System.

“They were wonderful, helping us figure out how Lydia’s school days can go, how to help her do the work. They know she’s capable. Like Beth Crawford said: she gets it and you need to not let her stop,” she said.

“I feel very fortunate to live in this District and to have this school system behind us. Many other students we meet from other districts and other states don’t always have that support. Decorah is advanced in their thinking and in their technology and in their willingness to put the students’ needs first,” said Jacque.


What’s next?

Lydia has been asked to attend several upcoming technology lobbying events.

She said after graduation, she hopes to go to college at the University of Northern Iowa or in Washington, DC in order to work in speech pathology or get into government.

“With a supportive family, therapy and assistive technology, people with cerebral palsy can lead productive lives … If given the right tools, they can offer so much to society. I hope you will take time in your life to realize that everyone is capable. Everyone has a voice,” she said.

Join Our Family
Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

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.

Join Our Family

Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

For more information on Cerebral Palsy please visit our website:
http://www.cpfamilynetwork.org

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.

Join Our Family
Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

San Francisco Giants Coach Triplets Overcome Cerebral Palsy Adversity

October 11, 2012
By Mark Emmons

When Natalee Righetti decided to write a book about her life, she set about the project the same way she does everything: just a little differently.

She typed one-handed on her laptop.

The result was the aptly titled autobiography “Beautifully Different” where Natalee, the daughter of Giants pitching coach Dave Righetti, describes growing up one of triplets whose premature births resulted in health complications for each of them — including the cerebral palsy that caused permanent muscle weakness throughout the left side of her body.

“I never really wished that I had two good hands or two good legs,” said Natalee, 21. “The way we came into the world was such a special thing, and it was amazing that we were even alive. Even if life can be full of challenges, I wasn’t going to let my disability prevent me from doing what I want.”

That includes writing a book that she hopes will inspire other young people. It also offers a glimpse into the private family life of one of the Bay Area’s most recognizable sports figures. Dave and his wife, Kandice, long preferred to raise Natalee, Nicolette and Wes out of the spotlight so the children’s lives could be as normal as possible.

But now they’re proud that the story has been told by someone who knows it best — the child who has overcome the most.

 ”She really brought our life together but wrote it through her eyes,” Dave said. “There have been people over the years, like sports writers, who wanted to talk about these things, and I really never have. But to have her do it is just really special. It’s certainly not easy putting her life out there the way she has.”

There’s a reason why Kandice calls them “our miracle kids.”

The slim, self-published volume tells of how — because their mother could not carry children — they were conceived through in vitro fertilization with Kandice’s sister serving as the surrogate. Born at just 27 weeks and each weighing less than 3 pounds, they wouldn’t leave the hospital for two months and then embarked on a childhood filled with doctors, therapists and procedures.

Natalee, who was born with hydrocephalus, or fluid in the brain, endured the worst. The resulting brain damage caused the partial disability on her left side, including limited use of her arm. She took her first steps with a tiny walker and had epileptic seizures as well as five surgeries.

Nicolette lost her hearing after an allergic reaction to a medication at age 1 and would attend the Jean Weingarten Peninsula Oral School for the Deaf until she was 9. She had two cochlear implant operations that now provide 80 percent of normal hearing. While Wes needed eye surgeries, he has dealt more with learning issues.

Dave, who during his 16-year career threw a no-hitter as a Yankees pitcher and also saved 46 games in one season, occasionally talked publicly about the triplets’ health problems when they were very young. But by the time his playing days were winding down, the well-liked local sports figure known as “Rags” had stopped doing interviews about them so they wouldn’t be on public display.

What fans never saw was how hard it was on the stoic baseball man and his wife.

“There were a lot of restless nights and long drives to the ballpark,” said Dave, a San Jose native who became the Giants pitching coach in 2000. “It seemed like every month there was some new trouble. I tried to be strong and tough for my family, but looking back, it just wears you down when you see your kids like that. But I know it was toughest on them.”

Natalee fills in details as she writes with a raw honesty about growing up in Los Altos, determined not to be left out of the things all the other kids were doing. There were years of difficult physical therapy sessions and, in some ways, even more painful emotional moments of struggling to find acceptance.

“There was a time when I was very self-conscious about getting looks,” said Natalee, who today wears a constant smile and seems perfectly at ease with herself. “One time a softball coach from another team was watching me play and said: ‘You know it’s easier using two hands.’ I just said: ‘For me, not so much.’ “

A mature response for someone who was about 11 at the time, playing on a Bobby Sox team with her sister. Their father taught Natalee to play like Jim Abbott, the former major-league pitcher who because he had only one hand would catch the ball and then quickly take off his glove so he could throw it. She also played volleyball until her sophomore year of high school by bumping the ball with one arm and developing a knack at serving.

“What I’ve learned is it’s important to do whatever you want and not be worried about not being good enough,” said Natalee, who organized a Disability Awareness Day while attending Mountain View High School. “There’s always a way around challenges if you look for them.”

It helps when your siblings have your back. At a photo shoot in the Rancho San Antonio Open Space Preserve last week, it was evident how the three — now junior college students — look out for one another. Wes made sure Natalee kept her balance as they walked down a tricky dirt path. Natalee, in turn, was repeating questions for Nicolette just in case she didn’t hear them.

“It’s not like we thought about it while growing up, but in a way we’ve always been in this together,” said Wes, a music technology major who plays guitar and sings. “We were all connected in that we tried to understand what the other ones were going through.”

That was especially the case for the sisters.

“It took a lot of training just to speak,” said Nicolette, who has gravitated toward dance. “Because we both had to work so hard, we’re always talking about how to handle things.”

Doing everything one-handed has taken a toll on Natalee’s good shoulder, forearm and hand — making it difficult for her to drive. But for someone who describes herself as a “differently abled person,” it’s just something else to overcome.

“Everyone has challenges,” she said. “But I think for kids with disabilities, it’s really important to know that they’re not alone in whatever they’re going through.”

Join Our Family

Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

Student with Cerebral Palsy Blogs for Teens

October 4, 2012
By David Whiting

Some say forget weaknesses, focus on your strengths. But there are those who turn weakness into inspirational power.

If you’re young and have cerebral palsy, chances are you’ve heard of Katy Fetters. If you haven’t, here’s your chance to meet Fetters in her salad days. I suspect we’ll be hearing more from this college sophomore.

Fetters, now 20, launched her teen cerebral palsy blog three years ago, just won a $19,000 scholarship for an essay about her condition and this summer was profiled on national television.

When many her age aren’t sure what they’ll do with their lives, Fetters already is changing lives.

The spark? Insecurity.

• •

Fetters and her twin sister, Sara, were born at 27 weeks. They each weighed about 2 pounds.

Sara was OK. But doctors said Katy would never walk, never talk.

I meet Fetters at her school, Soka University, built on a bluff in Aliso Viejo. Standing before glistening pools, there’s a blonde in aviator sunglasses who looks as if she walked out of the MTV show “Laguna Beach.”

I’ve read Fetter’s blog. Insecure? Come on.

Fetters walks toward me. She is not fast, tilts up and down a little, sort of drags her left leg.

For a young woman raised in a culture where appearance is paramount, it’s a tough way to make an entrance.

Regardless, Fetters walks with purpose, determination and an emerging confidence.

We walk around campus, climb stairs, sit – and talk.

Those baby doctors had no idea whom they were dealing with.

• • •

Cerebral palsy is a non-progressive disorder caused by damaged motor control centers. It can occur during pregnancy and through age 3. Premature infants are especially vulnerable.

There are many forms, many stages. Fetters calls her condition mild. She explains that her brain has a hard time, sometimes an impossible time, telling the left side of her body what to do.

Her left hand works, but not nearly as well as her right. He left leg? Not so much.

But that has never stopped Fetters from doing anything. Except surfing.

Fetters grew up in Huntington Beach with a younger sister, an older brother and Sara. For a kid with CP, as Fetters calls cerebral palsy, she says hers was the perfect family.

Big brother offered a buffer when he was a high school senior and Fetters was a freshman. She had Sara and other friends as companions. And mom and dad understood the depth of human potential, of tapping into inner strength.

Her mother, Carolyn, was a rower while at UCLA where she happened to study CP. Her father, Paul, moved from Michigan to California to become a bodybuilder and is founder of the Training Spot gyms in Huntington Beach.

Growing up wasn’t about can’t. It was about can.

• • •

When Fetters was a toddler, she didn’t toddle. She crawled, combat style, arms pumping, legs following. She mastered walking when she was 3.

When friends started to skateboard, Fetters flopped on her belly and turned her skateboard into a sled.

She didn’t think much of her switch-ups. She just wanted to play. It wasn’t until the twins were 5 and Sara started riding a bicycle that Fetters grasped she was different. It took her three more years to ride a bike.

“Looking back,” Fetters laughs, “I was a nut.” A tough nut.

She joined AYSO soccer when she was 8 and didn’t stop until last year. Her secret? “Not to outrun but to outsmart.”

But on the field she mostly forgot about CP – just as her teammates did. She sometimes wondered, “Why am I so slow?”

Still, there were stark reminders. Growing up, she was supposed to do physical therapy an hour a day. A series of casts stretched her ankle. Doctors operated on her leg to lengthen a tendon. She had to wear a brace on her leg every night – she still does – and during the day for months at a time.

But her teen years proved even more challenging.

• • •

In middle school, Fetters went out for cross country and managed to keep up with the middle of the pack.

Still, one kid said she had a fake leg. Another said, “I heard you can’t run.”

Fetters used the comments as fuel, posting her best mile ever.

Understand, that mile came with suffering. “I hate running,” Fetters confesses. “It’s the hardest thing in the world.”

High school, with far more students and a much larger campus, tested her limits. “I fall a lot in general. I trip over my own feet,” she says.

One day, she took a dive in front of a bunch of upperclassmen, books and knapsack splayed. No one teased her, but she felt humiliated, defeated.

She went home and cried, withdrew. Then in the summer of 2009, before her junior year, she regrouped.

Fetters cut her waist-length hair to a bob, took ownership of what she now calls a “disability” with her fingers marking the quotes and – with the help of Stanford University student Greg Greiner – started teencerebralpalsy.com.

The blog was an instant hit. Today, Fetters gets 5,000 page views a week and hears from people as far away as Africa and Australia.

One teen: “Hi, I’m 16 and have CP (I’m in a wheelchair at the moment). I have been having a really hard time at school because I just don’t fit in.”

Fetters’ reply: “I have found that it is easier to connect with people if you are more open with them about how CP affects you.”

Fetters shakes her head, “It’s crazy to realize how much power there is in words. I had no idea I was considered inspirational.”

But it wasn’t just others that Fetters was inspiring.

• • •

Being human, Fetters has her down times. Watching herself on Fox’s show “Live Life and Win” was the best and worst of times.

“Who ever would have thought I’d be on TV,” she says, still marveling at the experience. At the same time, she hated watching herself. “I didn’t realize I walked like that. That was really overwhelming.”

But Fetters shakes off the negative and focuses on the positive, saying the show helped others find her blog, a blog she credits for a huge shift in her confidence.

For her next project, Fetters is considering writing a book about what she’s learned to help students who struggle in high school.

It could be a book for all teens.

Join Our Family

Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

Student with Cerebral Palsy Blogs for Teens

October 4, 2012
By David Whiting

Some say forget weaknesses, focus on your strengths. But there are those who turn weakness into inspirational power.

If you’re young and have cerebral palsy, chances are you’ve heard of Katy Fetters. If you haven’t, here’s your chance to meet Fetters in her salad days. I suspect we’ll be hearing more from this college sophomore.

Fetters, now 20, launched her teen cerebral palsy blog three years ago, just won a $19,000 scholarship for an essay about her condition and this summer was profiled on national television.

When many her age aren’t sure what they’ll do with their lives, Fetters already is changing lives.

The spark? Insecurity.

• •

Fetters and her twin sister, Sara, were born at 27 weeks. They each weighed about 2 pounds.

Sara was OK. But doctors said Katy would never walk, never talk.

I meet Fetters at her school, Soka University, built on a bluff in Aliso Viejo. Standing before glistening pools, there’s a blonde in aviator sunglasses who looks as if she walked out of the MTV show “Laguna Beach.”

I’ve read Fetter’s blog. Insecure? Come on.

Fetters walks toward me. She is not fast, tilts up and down a little, sort of drags her left leg.

For a young woman raised in a culture where appearance is paramount, it’s a tough way to make an entrance.

Regardless, Fetters walks with purpose, determination and an emerging confidence.

We walk around campus, climb stairs, sit – and talk.

Those baby doctors had no idea whom they were dealing with.

• • •

Cerebral palsy is a non-progressive disorder caused by damaged motor control centers. It can occur during pregnancy and through age 3. Premature infants are especially vulnerable.

There are many forms, many stages. Fetters calls her condition mild. She explains that her brain has a hard time, sometimes an impossible time, telling the left side of her body what to do.

Her left hand works, but not nearly as well as her right. He left leg? Not so much.

But that has never stopped Fetters from doing anything. Except surfing.

Fetters grew up in Huntington Beach with a younger sister, an older brother and Sara. For a kid with CP, as Fetters calls cerebral palsy, she says hers was the perfect family.

Big brother offered a buffer when he was a high school senior and Fetters was a freshman. She had Sara and other friends as companions. And mom and dad understood the depth of human potential, of tapping into inner strength.

Her mother, Carolyn, was a rower while at UCLA where she happened to study CP. Her father, Paul, moved from Michigan to California to become a bodybuilder and is founder of the Training Spot gyms in Huntington Beach.

Growing up wasn’t about can’t. It was about can.

• • •

When Fetters was a toddler, she didn’t toddle. She crawled, combat style, arms pumping, legs following. She mastered walking when she was 3.

When friends started to skateboard, Fetters flopped on her belly and turned her skateboard into a sled.

She didn’t think much of her switch-ups. She just wanted to play. It wasn’t until the twins were 5 and Sara started riding a bicycle that Fetters grasped she was different. It took her three more years to ride a bike.

“Looking back,” Fetters laughs, “I was a nut.” A tough nut.

She joined AYSO soccer when she was 8 and didn’t stop until last year. Her secret? “Not to outrun but to outsmart.”

But on the field she mostly forgot about CP – just as her teammates did. She sometimes wondered, “Why am I so slow?”

Still, there were stark reminders. Growing up, she was supposed to do physical therapy an hour a day. A series of casts stretched her ankle. Doctors operated on her leg to lengthen a tendon. She had to wear a brace on her leg every night – she still does – and during the day for months at a time.

But her teen years proved even more challenging.

• • •

In middle school, Fetters went out for cross country and managed to keep up with the middle of the pack.

Still, one kid said she had a fake leg. Another said, “I heard you can’t run.”

Fetters used the comments as fuel, posting her best mile ever.

Understand, that mile came with suffering. “I hate running,” Fetters confesses. “It’s the hardest thing in the world.”

High school, with far more students and a much larger campus, tested her limits. “I fall a lot in general. I trip over my own feet,” she says.

One day, she took a dive in front of a bunch of upperclassmen, books and knapsack splayed. No one teased her, but she felt humiliated, defeated.

She went home and cried, withdrew. Then in the summer of 2009, before her junior year, she regrouped.

Fetters cut her waist-length hair to a bob, took ownership of what she now calls a “disability” with her fingers marking the quotes and – with the help of Stanford University student Greg Greiner – started teencerebralpalsy.com.

The blog was an instant hit. Today, Fetters gets 5,000 page views a week and hears from people as far away as Africa and Australia.

One teen: “Hi, I’m 16 and have CP (I’m in a wheelchair at the moment). I have been having a really hard time at school because I just don’t fit in.”

Fetters’ reply: “I have found that it is easier to connect with people if you are more open with them about how CP affects you.”

Fetters shakes her head, “It’s crazy to realize how much power there is in words. I had no idea I was considered inspirational.”

But it wasn’t just others that Fetters was inspiring.

• • •

Being human, Fetters has her down times. Watching herself on Fox’s show “Live Life and Win” was the best and worst of times.

“Who ever would have thought I’d be on TV,” she says, still marveling at the experience. At the same time, she hated watching herself. “I didn’t realize I walked like that. That was really overwhelming.”

But Fetters shakes off the negative and focuses on the positive, saying the show helped others find her blog, a blog she credits for a huge shift in her confidence.

For her next project, Fetters is considering writing a book about what she’s learned to help students who struggle in high school.

It could be a book for all teens.

Join Our Family

Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

Proving the Doctors Wrong - Growing Up with Cerebral Palsy

Proving the Doctors Wrong

By Ben Jackson
My name is Benjamin David Cummings-Jackson and I was born with Hemiplegic Cerebral Palsy. I was born on January 20^th 1993 in Brooklyn, New York at Interfaith Hospital. After birth I was immediately rushed to neonatal care and spent ten days in the hospital. Doctors told my mom everything I would never be able to do, such as walking. They also expressed that my entire life would be confined to a wheelchair. They said I wouldn’t be able to attend school, have a social life and pretty much be limited due to my cerebral palsy. Doctors even suggested that mom just let me die, because I would be a burden and too much to deal with. Fortunately, my mom put it in God’s hands and took me home.

Exploring My Strengths Through Sports

Growing up with CP was no easy task; I took my first steps when I was 18 months old. As a kid, I was always very energetic and passionate about sports. The first sport I remember being heavily involved in was basketball. Although basketball wasn’t easy for me, I was eager to learn and adapted a strong work ethic that I still carry with me to this day. Sports taught discipline which helped me in school, allowing me to excel in all subjects. My favorite subjects were math and history. Although I was determined, school was tough because I was the only disabled kid in the entire school and I didn’t know what it was at the time but I just felt different.
In seventh grade my family moved to Pennsylvania and I attended Clear Run Intermediate. At first, I was just the new kid so everyone was kind of cautious when approaching me, but as the weeks went on everyone was very accepting. After a year went by I moved up to eighth grade. I now went to Pocono Mountain West Junior High School. The Junior High school was different; there were a lot more kids which was a challenge for me because I was pretty much the only kid with a physical disability. One day on my way out of the building to catch the bus to go home, I saw a poster that said “Come be a part of the West Wrestling Team.” I took a sign-up sheet home and showed my mom and dad.
My parents have always been very supportive of me, so when the idea of wrestling came up they encouraged me to go for it. Wrestling in junior high was the biggest challenge I have ever taken on, because it was the most physical and I loved it. The first two years of wrestling involved intense workout both in the weight room and on the mat. But it was all worth it, because in my second year I won my first wrestling match by pin. Everyone was so happy for me. That’s when I discovered that with hard work anything is possible.

An Award-Winning Senior Year

Entering high school I had a new reputation as the heart of the wrestling team. High school was great. I kept my grades high, allowing me to achieve honor roll multiple times. Since academically I had my standards set, I was able to focus on wrestling when I was not studying. Every afternoon at 2:45pm, I would go to wrestling practice for two hours, then go home and do homework before bed. As my high school years went by, both my physical and mental appearance grew stronger. Senior year I was determined to make my last year my greatest achievement yet.
The first wrestling match of senior year I was awarded “The Chris Hernandez M.V.P Award.” Chris Hernandez was a former wrestler at Pocono Mountain West whom was tragically killed, so when I won his award it meant the world to me. I would go on to win six more matches that year, which were my most so my goal was achieved. At the annual wrestling banquet, I was given the honor of getting my own award named after me, “The Ben Jackson Courage Award.” It brought me to tears. Every year, my award will be handed out to a new wrestler. As the year went on I was also given other awards including the “Ray A. Kroc Youth Achievement Award” followed by “The Donald Cramer Memorial Award,” which was given to me at graduation.

Continuing to Chase After My Dreams

Today, I attend Northampton Community College and this will be my second year. College has presented me with many challenges, but I never let anything defeat me and I don’t plan on starting now. My first year I was teased and laughed at when walking down the halls. It did hurt my feelings, but my goal was never to find satisfaction in others. My goal was to go above and beyond in my academics and I did exactly that by making the Dean’s List. My life has been filled with challenges, but every challenge has been followed by a triumph of success.

About the Author

Benjamin David Cummings-Jackson lives in Pennsylvania, where he continues to exceed all doctors’ expectations. He is excelling in college and hopes to inspire others to achieve their dreams.

Join Our Family

Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

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/