Doctors Using Cord Blood to Treat Cerebral Palsy

Have you considered storing cord blood for later use? Many children with cerebral palsy have benefited from this procedure. Read more about cord blood storage and the benefits in our latest "In the News" article.
http://www.cpfamilynetwork.org/in-the-news/doctors-using-cord-blood-to-treat-cerebral-palsy

Christmas iPad, Digital Books Open New World of Learning

Did you give your child an iPad for Christmas? Will they be using it for school work? Are you struggling with where to find educational books online that aren't wildly expensive? Our good friend Valerie Chernek has provided us with an amazing resource for those looking for free textbooks for their children to read on the iPad. Read all about digital learning and where to find high quality e-books for free in our latest blog!

http://www.cpfamilynetwork.org/blogs/ipad-opens-new-world-of-learning

Advice to Expecting Parents about Assisted Delivery Using Vacuum Extraction

When a mother is unable to deliver a child on her own, assistive equipment may be used to help speed the birthing process. Because the need for vacuum extraction (VE) is always a possibility during childbirth, parents need to be aware of what it entails and what questions to ask of their doctor.

http://www.cpfamilynetwork.org/blogs/advice-to-expecting-parents-about-assisted-delivery-using-vacuum-extraction?utm_campaign=CPFN+Eblast+-+Dec+26.+2012&utm_medium=email&utm_source=newsletter&utm_content=Vacuum-Assisted+Delivery

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

Dorsal Rhizotomy Operation Helps Young Man Achieve Dreams

Have you considered a dorsal rhizotomy operation? Here is one family that did and is seeing amazing benefits. Tell us your experiences and any questions you may have in the comments.

http://www.cpfamilynetwork.org/in-the-news/dorsal-rhizotomy-operation-helps-young-man-achieve-dreams

Don’t Hesitate to “Bother the Doctor” During Holidays

CP Family Network Medical Director Giles Manley, M.D., encourages parents to trust their instincts and contact their doctor if something seems wrong with their unborn child or infant over the holidays. He described a recent case where delayed medical intervention resulted in cerebral palsy:

I settled a case recently where a pediatrician sent an infant with severe jaundice home on New Year’s Eve with instructions to the parents to “check back in 2-3 days.” The baby had elevated levels of bilirubin in the blood, which is a sign that the liver is not cleansing the blood like it should, and is a serious condition if not treated quickly. The delayed treatment resulted in brain damage to the child.

So I always remind expectant parents, stand up for your rights as a patient over the holidays. If you think there is an issue with your pregnancy or your newborn baby, don’t let health care providers put off tomorrow what should be addressed today. If your doctor will be out of town, make sure you have his cell phone number and the name and phone number of the doctor who will be filling in for him or her. Then, don’t hesitate to use it if anything seems unusual.

To see a list of symptoms that warrant contacting your doctor, read Don’t Hesitate to “Bother the Doctor” During Holidays.

For more information please visit:

http://www.cpfamilynetwork.org

Students Visit Classmate With Cerebral Palsy

Students who found out their classmate with cerebral palsy was too sick to attend class decided they would just bring the class to him! Read more about this beautiful act of kindness in our latest "In The News" story.

http://www.cpfamilynetwork.org/in-the-news/students-visit-classmate-with-cerebral-palsy

Cerebral Palsy Doesn’t Stop Man From Being Adrenaline Addict

Our latest "In The News" story highlights a young man with cerebral palsy who wouldn't let being in a wheelchair stop him from being a thrill-seeker. Andrew Giffin proves just because you are disabled doesn't mean you can't lead a life full of adventure.

http://www.cpfamilynetwork.org/in-the-news/cerebral-palsy-doesnt-stop-man-from-being-adrenaline-addict

Empty Stocking Fund: Providing Christmas Cheer for Special Needs Families

Raising a special-needs child can be very costly. This can mean money for Christmas presents can be hard to come by. A charity organization in Amarillo, Texas created the "Empty Stocking Fund" to help special-needs families have a Merry Christmas.

http://www.cpfamilynetwork.org/stories/empty-stocking-fund-providing-christmas-cheer-for-special-needs-familie

Joy Prom Allows Special Needs Students

Do you all know about Joy Prom? It is a unique prom created for children with special needs. It is a beautiful way to give special needs children a moment they may otherwise never get.

http://www.cpfamilynetwork.org/in-the-news/joy-prom-allows-special-needs-students

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

How To Adapt Toys For Children With Disabilities

With Christmas right around the corner, do you often wish there were more disability-friendly toys? Ever wonder how you could adapt popular toys for your disabled child to enjoy? The good folks at Nationwide Children’s Hospital spent the weekend showing parents how to modify existing toys with disability-friendly features. Read more about this process in our latest "In The News" article.

http://www.cpfamilynetwork.org/in-the-news/how-to-adapt-toys-for-children-with-disabilities

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

Student’s Work May Help Diagnose Cerebral Palsy Earlier

Do you wish hospitals were able to diagnosis cerebral palsy earlier? Can you imagine being able to start treatment within days rather than months or years? A student at Virginia Tech is working on being able to do just that.

http://www.cpfamilynetwork.org/in-the-news/students-work-may-help-diagnose-cerebral-palsy-earlier

Heartwarming Video of Wrestler Who Lets Boy with Cerebral Palsy Win

Our latest "In the News" story showcases a young man who goes above and beyond the call of duty to make a classmate with cerebral palsy feel like a winner.

Do you all have similar stories of compassion for the disabled? Tell us about them in the comments.
http://www.cpfamilynetwork.org/in-the-news/heartwarming-video-of-wrestler-who-lets-boy-with-cerebral-palsy-win

Nike Delivers Custom Shoes to Teen with Cerebral Palsy

November 26, 2012
By Allan Brettman

View similar stories in our “In the News” section.

It started with an impassioned letter from a Parkland, Fla., teenager to Nike Chief Executive Mark Parker. It ended with a dream come true.

Matthew Walzer told Parker he has cerebral palsy, that he weighed 2 pounds, 14 ounces at birth and that doctors told his parents their son would never walk.

They were wrong, Walzer wrote. He can walk with some difficulty, has a perfect grade point average and he’s headed to college next year.

But Walzer had a request for Parker, which blazed through Twitter and Facebook as the #NikeLetter, gaining more fuel on the sneaker blog nicekicks.com and eventually making its way to Parker, who was attending the 2012 Olympic Games in London.

“I am able to completely dress myself, but my parents still have to tie my shoes,” Walzer wrote. “As a teenager who is striving to become totally self-sufficient, I find this extremely frustrating, and at times, embarrassing.”

To his surprise, an official at Nike contacted Walzer through Twitter three days after he wrote that letter, asking for his phone number.

Later that day, John Poyner, a 23-year-old product manager for Nike’s Jordan Brand, called.

The first thing Poyner wanted to say was that he, too, has cerebral palsy and he, too, has a passion for sports but can’t play them.

The two talked for nearly an hour.
Later, Nike connected Walzer with Nike designer Tobie Hatfield.

Walzer, 17, told Hatfield about the physical challenges he faces every day, the difficulty in finding adequate shoes and the elements that might make for a cerebral palsy-friendly Nike shoe.

Hatfield, whose brother Tinker also works at Nike, has some experience working with physically challenged athletes. His product collaborators include Oscar Pistorius, the double amputee Olympic sprinter from South Africa, and amputee triathlete Sarah Reinertsen.

The size 10 shoe Hatfield engineered for Walzer was a twist on an existing Nike Hyperdunk basketball shoe. Instead of laces, the shoe used a zipper in front — personalized with “Walzer” on the zipper — and a large Velcro wrap at the ankle. A pair arrived at Walzer’s home Oct. 28.

He has worn the shoes at school, where he navigates with a wheelchair and a cane.

But he doesn’t wear the shoes every day. He doesn’t want to get them unnecessarily dirty, like at one of his beloved NASCAR races.

He says the shoes aren’t perfect, that he’s suggested more design changes to Nike to accommodate the inward rolling sole that is common among people with cerebral palsy. The Oregon company sent Walzer two more pairs, again free of charge, just before Thanksgiving.

Walzer says he could have presented his request to another shoe company, but focused on Nike since it’s his favorite brand. He also said he was motivated to write Parker based on a famous quote from the company’s co-founder, Bill Bowerman: “If you have a body, you are an athlete.”

Walzer, who aspires to be a sportswriter, even used a coaching analogy in describing how cerebral palsy has, in a way, helped him.

“It’s that coach that pushes and pushes you to reach your goals.

“It’s your enemy in a good way and a bad way. It’s your enemy that makes you want to go out there and say ‘I will do whatever I want to do."

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Cerebral Palsy Family Network Photo Contest Winner

Photo Contest Winner: Life with Halyn

By Jamie Strickland
View similar blogs.

This is Halyn Jean Strickland, of Roanoke Rapids, NC, and her daddy, enjoying a relaxing day at the beach. Our story begins on November 10, 2006. Halyn was born on this date at only 26 weeks gestation. She remained in the NICU from that day until February 8, 2007. She had a grade 3 IVH at birth, and she also has hydrocephalus. At 1 yr. old, she had a VP shunt inserted in her head to drain any excess cerebral spinal fluid from her head, into her abdominal cavity. She was diagnosed with spastic CP at 2 yrs. old. The CP affects her lower extremities for the most part, and slightly affects her right arm/hand as well.

From the day she came home from the hospital until her third birthday, she was fortunate to receive help from an Early Intervention Program in our area. This group helped with finding Halyn great physical, occupational, vision, and speech therapy programs. Since turning 3, she has enrolled in a special needs pre-k and kindergarten, where she continues to receive physical and vision therapy at her school.
We also incorporate physical therapy at home into her playtime. She enjoys when we lay on our backs and pretend to be in a bicycle race. This helps strengthen her legs and stretches her hamstrings. I also do my own version of hippo-therapy, by getting down on all fours and having Halyn straddle and sit on my back as I go back and forth across our living room imitating a horse. Since Halyn’s CP affects mainly her legs, her grandfather came up with an idea where the two of us would hold a broomstick in our hand and have Halyn hold on in the middle of the broomstick and carefully walk along with us. This allows Halyn to try to walk with her hands held midway of her body, rather than having her arms up in the air by holding our hands. Believe it or not, this actually does seem to help and it helps our backs too, being that we don’t have to lean over and walk along with her as she holds our hands.

Another thing that we have recently discussed was Botox treatments. We have had a consultation, but the doctor didn’t want to go forward with them at the moment and has put her on a medicine called Baclofen. She has been taking it for about 6 months now, and in my opinion, it hasn’t really helped a lot, and I am searching for another doctor that would recommend the Botox.
In addition, Halyn has a gait trainer and a wheelchair. She also wear AFO’s (leg braces), and soft knee braces, called snoopies, that keep her legs straightened out during sleep. I have also sought out others that are going through the same thing for ideas that can help improve the quality of her life, like the Cerebral Palsy Family Network. I enjoy reading the posts from others and have become friends with many.

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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Young Man with Cerebral Palsy Transforms His Health

November 12, 2012
By Cathy Dyson

Sometimes, John Langin works out in a baggy old baseball shirt that means a lot to him.
Not because the name on the front is the “Braves,” though it suits Langin. He was born with cerebral palsy and fought to do the same things other kids did—then had to listen to them make fun of his disability.

The shirt reminds Langin how far he’s come.
He was 11 when he got it. He was so overweight, he needed an extra-extra-large adult size. Langin kept adding on the pounds until after high school, when he was inspired by a contestant on the TV show, “The Biggest Loser.”
He cut out snacks and ate more home-cooked meals, then sought a personal trainer to get in shape.
As a result, the 20-year-old lost 120 pounds in a year and gained the self-esteem he lacked as a youth. He’s able to do bench presses and squats, jog up stairs and jump from the floor to a box several inches off the ground.
“Hey, not bad for somebody who was not supposed to walk,” said Shane Miller, his personal trainer at American Family Fitness near Massaponax.

A GRIM DIAGNOSIS
Langin lives in Spotsylvania County with his mother, Carol. His father, John, died in 2010.
At 2, his parents were told he had been born with cerebral palsy, a disorder that can affect movement, learning, hearing, seeing and thinking.
Problems often are caused by an abnormality in the brain and develop in the womb. They also can happen any time during a baby’s first two years.
Langin had had a rare infection when he was 2 months old, and doctors weren’t sure if his problems were from the infection, cerebral palsy or both.
“At 5, they told me he would probably never walk or run or do more than be able to write his name,” his mother said. “They said I’d be lucky if he graduated from high school.”
His mother considered him lucky because he was more mobile than most cerebral palsy patients, though his gait was noticeably different.
Classmates were more than happy to point out the crooked way Langin walked and how he almost hopped when he tried to run. Kids made fun of how he wrote, too, and Langin said his big block lettering still looks like a third-grader’s.
Langin turned to food to try to make himself feel better after a long day of cruel comments.
“The bigger I got, the more depressed I got so the more I ate,” Langin said in a video he did with Miller about his transformation. “I would eat mozzarella sticks, snack cakes—you name it, I ate it.”
His mother knew how much he was suffering at school and let him raid the cupboards.
“I would do anything to make him happy, to make him feel loved, and food was great for that,” she said.
She later realized she was compounding the problem.
“His size is just as much my fault as anybody’s,” Carol Langin said. “I hope he learns from my mistakes You can’t find joy with food.”

A WORK IN PROGRESS
Langin weighed 320 pounds when he decided to lose weight. He dropped about 60 pounds on his own before heading to American Family Fitness in April of this year.
The membership director paired Langin and Miller—though Miller and Carol Langin believe God had a hand in bringing them together.
The two began with exercises that increased his range of motion, just as Miller would do with anyone who’s out of shape.
The trainer knew Langin had had numerous operations to correct issues related to his cerebral palsy. He wasn’t sure how much Langin could do—or if he could do certain movements at all.
Once he realized he could get all Langin’s muscles firing and joints working without hurting him, he turned on the heat.
The two have run sprints and climbed hills, rolled tractor-size tires in the parking lot and built up the strength in Langin’s legs, his weakest body part.
Miller has been amazed by how Langin’s body has responded. The young man who started workouts six months ago—on his butt, without bearing any weight or testing his core strength—regularly breaks his own records on rowing machines and with bench presses.
“How awesome is that?” Miller said. “Every day we work together, he is blowing my mind about what he is capable of doing.”
Langin routinely gets to the gym 30 minutes ahead of his session with Miller so he’s warmed up and ready. He regularly stays after and comes in at least once a day on his own.
His mother says he has the highest tolerance for pain of anyone she knows. Miller regularly asks Langin if he’s hurting, especially after he did 60 “junkyard dog pushups” when he had 30 pounds of chains hanging from his neck. Langin repeatedly swore that he wasn’t sore.
Miller has to insist that Langin take a day of rest to allow his body to heal.
“I think he’s the only client I’ve ever told not to come to the gym,” Miller said.

‘A LIGHT BULB WENT OFF’
Miller cited several examples of Langin’s willingness to change any aspect of his diet or workout routine.
Miller suggested eating more vegetables—beyond corn, green beans and mashed potatoes. Langin sampled zucchini, acorn, butternut and yellow squash. He missed pasta, so his mother substituted spaghetti squash for angel-hair noodles, and Langin said he can’t tell the difference.
One day, Miller encouraged Langin to try three new machines in the workout area. The next time the two went to the machines, Langin had been on every apparatus in the place—and there are several hundred different pieces.
“He really will do whatever it takes,” Miller said.
Langin’s mother said it’s part of his tunnel vision. When something catches his interest, he gives it his entire focus.
Langin, who gets Social Security for his disability, decided to focus this year on getting fit. Next, he’ll set his sights on becoming a personal trainer.
“It’s like a light bulb went off in his head, and it burns every day,” his mother said. “Some days, brighter than others.”

‘NEVER BEEN HAPPIER’
Miller doesn’t refer to Langin as the guy with cerebral palsy or the one who lost 120 pounds.
“I describe him as the guy with no excuses,” he said.
He’s heard other trainers fuss at clients for not giving it their all. When Langin is on the floor, working out next to someone who is struggling, another trainer will point at Langin and say to his client, “He’s got cerebral palsy? What’s your excuse?”
Another trainer, who saw Langin on the stairs, nodded and said, “What’s up, superstar?”
Langin, who graduated from Courtland High School in 2011, recently worked out with some fellow graduates. Joshua Bailey and Peter Garrison played football at Courtland and were among the few who looked out for Langin in school.
“We all knew he had knee problems,” said Bailey, adding he had no idea Langin had the wherewithal to make such life changes. “You impressed me, John.”
Garrison called him “awesome.”
That interaction wouldn’t have happened 100 pounds ago, Miller said. Langin wouldn’t have seen the two in the gym or had the confidence to work out with them, the trainer said.
“People can’t believe the changes I’ve made,” Langin said, smiling. “I’ve never been happier in my life.”
John Langin had his motivation tattooed inside both forearms. “Determination–Dedication” is on one side, and “I only get this one body” on another. Langin has six goals:

• 1. To become a personal trainer.
• 2. To compete in a CrossFit event, which would test his overall fitness and strength.
• 3. To be under 200 pounds, “just to see it on the scale.”
• He hit 200 last week.
• 4. To tone up a little more.
• 5. To get to the peak of Old Rag Mountain. He and trainer Shane Miller made it 4 miles up, then had to turn around because they were pressed for time.
• 6. To run–walk a marathon.
  

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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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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.”

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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.

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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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My Child With Cerebral Palsy Can’t Sleep

By Lee Vander Loop

I saw a cartoon in the newspaper the other day that featured a conversation between a sleep-deprived mom and dad arguing over who should get up for the 3 a.m. feeding. It was a reminder that sleeplessness is an inevitable part of parenting a newborn that most, at least when they’re past it, can take lightly, since it usually lasts a few months.
But what if it doesn’t? What if after six or seven months a child doesn’t show signs of ever being able to sleep more than a few hours? What does a parent do then?  Parents with children who suffer from a neurological birth injury soon learn how that injury has impacted their child’s ability to sleep. For many, their child’s sleeplessness may be one of the first issues they discuss with the pediatrician.

Underlying Medical Issues

First and foremost, determine whether your child’s sleeplessness is being caused by other factors such as sleep apnea, reflux or seizures. Discuss these possibilities with your child’s pediatrician. Many children may experience sleeplessness as a result of environmental, auditory or dietary factors in their lives.
Your child should be seen for evaluation, testing and treatment by a child neurologist, or neurodevelopmental specialist and possibly a behavioral psychologist experienced in sleep disorders. Many large teaching hospitals and specialty hospitals have Sleep Disorder Clinics with trained medical and psychological staff that can assess and help in the treatment and management of a child’s sleep disorder. Some of the more common tests are:

• Polysomnograms (PSG) –  The PSG monitors many body functions including brain (EEG), eye movements (EOG), muscle activity or skeletal muscle activation (EMG),  heart rhythm (ECG), breathing functions and peripheral pulse oximetry. It is usually conducted in a sleep lab at night, although it is possible to also do it in the home setting. It involves attaching electrodes to the patient and monitoring for several hours over several days.

• Multiple Sleep Latency Test (MSLT) -  This is a daytime study usually conducted the day after a formal night time sleep study has been conducted. The study measures how long it takes for a child to enter a sleep state after he or she begins napping. The test usually is conducted in a sleep lab.

• Actigraphy –  An “actigraph” is a small, wristwatch-sized device that records movement and is often attached to the wrist or ankle. The actigraph records an “actigraphy” report, which is usually taken over a period of weeks to establish the pattern of sleep and wakefulness. Often used in conjunction with a sleep diary, actigraphy in children can provide additional information about their sleep.

• Overnight EEG with video monitoring – This test is used to determine if a child may be suffering from epileptic or other seizures at night. Because children with disabilities often have difficulty adapting to new environments, strangers and difficulty with touching, attaching electrodes is challenging. A 2010 study reported that children with disabilities can be helped through a sleep study with the aide of conditioning techniques .

Environmental Factors

After any underlying medical problem have been diagnosed and treated, parents can turn to other healthy sleep techniques. These include:

• Establishing a “bedtime routine” such as a warm bath, rocking, calming music, or a story.

• Ensuring quiet. Many children with neurological disorders and sleep disorders are light sleepers and awaken at the slightest stimulation.

• For infants, swaddling, or tightly wrapping in a blanket, may be calming.

• Not intervening too quickly if the child wakes up crying. Children may be able to learn self-soothing techniques if allowed to do so. If your child is simply cooing or talking and entertaining themselves, don’t interfere.

• Use a baby monitor so you know what’s happening but you don’t stimulate your baby with your presence.

Medications

Medications can also influence sleep, so be sure to explore this with your physician. Pharmacists are also wonderful resources for information about drug side effects. If your doctor prescribes a medication, be sure to ask about side effects and alternatives should one not work. Also be aware that some medicines will only work for a short period of time before your child develops a tolerance for it and so dosages may change. Other medications may carry a risk of dependence.
In my research I’ve read of parents using a variety of medications, some with more success than others. An example of some of the medication options mentioned are:

• Klonopin – Klonopin is the trade name for clonazepam, which works by calming brain waves and nerves. However, some studies have discouraged use of this class of medications in those with traumatic brain injury. See  PubMed Abstract of 2010 study by the Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Chicago Illinois

• Clonodine –  PubMed Abstract of a 2005 study conducted in the UK reports improvements in the sleep patterns of children with neurological and developmental disorders following the use of Clonidine. While many studies have been conducted in relation to Clonodine for sleep disorders in children with ADHD, few can be found dealing with children with moderate to severe neurological and developmental disabilities.

• Melatonin: According to MedlinePlus, melatonin is a hormone produced by the pineal gland in the brain that regulates our sleep-wake cycle. Clinical data suggests that melatonin is a commonly prescribed drug for disturbed sleep in children with neurodevelopmental disabilities. Melatonin used as medicine is usually made synthetically in a laboratory. It is most commonly available in pill form, but melatonin is also available in forms that can be placed in the cheek or under the tongue. This allows the melatonin to be absorbed directly into the body. People use melatonin to adjust the body’s internal clock. It is used for jet lag, for adjusting sleep-wake cycles in people whose daily work schedule changes (shift-work disorder), and for helping blind people establish a day and night cycle. The Natural Medicines Comprehensive Database that rates effectiveness based on scientific evidence rated melatonin as likely effective for “sleeping problems in children with autism and mental retardation.” Also, see  “Melatonin for Treatment of Sleep Disorders at the Department of Health & Human Services, Agency for Healthcare Research and Quality.

• Acupuncture – Some parents have tried alternative medications such as acupuncture which seemed to provide immediate, short term influence but nothing long lasting that had any impact on chronic night time sleeplessness.

More About Sleep

Sleep disorders are a common problem in children with cerebral palsy as well as Alzheimer’s disease, stroke, cancer, and head injury. These sleeping problems may arise from changes in the brain regions and neurotransmitters that control sleep, or from the medications used to control symptoms of other disorders.
Many parts of the brain play an important role in the process of sleep. Damage to cerebral pathways, the mid brain or cerebral cortex can all impact a child’s ability to sleep. My own daughter with severe global brain injury has never established a routine sleep-wake pattern.
A deeper understanding of sleep disorders in general can be found in Brain Basics: Understanding Sleep by the National Institute of Neurological Disorders and Stroke.
According to a study conducted in Ireland, among children with cerebral palsy, sleep disorders are more prevalent in children with spastic quadriplegia, those with dyskinetic CP, and those with severe visual impairment. Both medical and environmental factors seem to contribute to the increased frequency of chronic sleep disorders in children with CP, according to the study.

Why Sleep is Important

We all know sleep is important. People become quickly disoriented for lack of sleep. We simply don’t function without sleep. Why? Here’s what the experts believe:

• Sleep gives neurons used while we are awake a chance to shut down and repair themselves. Without sleep, neurons may become so depleted in energy or so polluted with byproducts of normal cellular activity that they begin to malfunction.

• Sleep allows the brain a chance to exercise important neuronal connections that might otherwise deteriorate from lack of activity.

• Deep sleep coincides with the release of growth hormone in children and young adults. Many of the body’s cells also show increased production and reduced breakdown of proteins during deep sleep. Since proteins are the building blocks needed for cell growth and for repair of damage from factors like stress and ultraviolet rays, deep sleep may truly be “beauty sleep.”

• Activity in parts of the brain that control emotions, decision-making and social interactions is drastically reduced during deep sleep, suggesting that this type of sleep may help people maintain peak emotional and social functioning while they are awake.

• A study involving rats showed that certain nerve-signaling patterns that the rats generated during the day were repeated during deep sleep. This pattern repetition may help encode memories and improve learning.

The Importance of REM Sleep

Only after 1953, when researchers first described REM in sleeping infants did scientists begin to carefully study sleep and dreaming. In their studies scientist discovered that we typically spend more than two hours each night dreaming, and soon realized that the strange, illogical experiences we call dreams almost always occur during REM sleep. While most mammals and birds show signs of REM sleep, reptiles and other cold-blooded animals do not.
REM sleep begins with signals from an area at the base of the brain called the pons (illustration). These signals travel to a brain region called the thalamus, which relays them to the cerebral cortex – the outer layer of the brain that is responsible for learning, thinking, and organizing information. The pons also sends signals that shut off neurons in the spinal cord, causing temporary paralysis of the limb muscles. If something interferes with this paralysis, people will begin to physically “act out” their dreams – a rare, dangerous problem called REM sleep behavior disorder.

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