Red At The Rep

 

 

On November 5th Arkansas Down Syndrome Assoc. and Precious Baby Ministry will be hosting the wonderful play Red at The Rep in Little Rock.  The play is directed by Robert Hupp and stars Joseph Graves.  We will have heavy hors d'oeuvres by Flavours and a silent auction.  Proceeds will allow ADSA and PBM to provide a scholarship for families who have children with Down syndrome to pay for a special neurodevelopmental program.  This will allow these families a special opportunity to participate in advanced therapeutic modalities that they may not otherwise afford.  This special program is not covered by insurance and therefore is a complete out of pocket expense for families. 

 

For tickets please call (501)350-6000 or (501)952-7814. 

 

Thank you for your support in making this a success.

 

 

 

 

 

 

 

 

RED

 

 

"There is only one thing I fear in life, my friend... One day the black will swallow the red."

 

Mark Rothko is in his New York studio in 1958-9, painting a group of murals for the expensive and exclusive Four Seasons restaurant. He gives orders to his assistant, Ken, as he mixes the paints, makes the frames, and paints the canvases. Ken, however, brashly questions Rothko's theories of art and his acceding to work on such a commercial project.

 

 

 

 

The play won the 2010 Drama League Award for Distinguished Production of a Play and Molina won the Distinguished Performance Award.

 

The play was nominated for a total of seven Tony Awards, winning six, including: Best Play, Best Featured Actor in a Play for Eddie Redmayne, Best Direction of a Play for Michael Grandage, Best Scenic Design of a Play for Christopher Oram, Best Lighting Design of a Play for Neil Austin and Best Sound Design of a Play for Adam Cork.  All in all, it received the most wins out of any other production that season. The play also won the Drama Desk Award for Outstanding Play while Grandage and Austin were honoured with Drama Desk Awards for their work. Molina, Cork and Oram were also similarly nominated.

 

 

Famous People With Down Syndrome

In the past Robin did a wonderful post regarding famous people with Down syndrome children.  It has been a very popular post.  So this time I decided to really go for it, how about some rock star Down syndrome people that are famous.

Need inspiration, here you go.



Courage to Conduct

Hu Yizhou cannot read music. Yet when he hears it, the affect it has on him is startling. He gives it his undivided attention, bending his head to hear every note.

Born in 1978 in Wuhan, Hubei Province, Hu, better known as Zhouzhou, was diagnosed with Down's Syndrome, a congenital handicap that has severely limited his intellectual growth. But music is not only about intelligence.

Those who believe that intelligence can be measured would do well to watch Hu, who, with an Intelligence Quotient of 30 (the minimum IQ of an adult is 70) is nevertheless a dynamic presence onstage. Hu is living proof that human beings should not be judged by numbers. Invited as a guest conductor by the National Symphony Orchestra of the United States and the Cincinnati Symphony Orchestra, Hu has already attained international recognition for his achievement. He has also conducted the symphony orchestras of The Central Ballet Troupe of China and the Central Opera Theater. During his latest concert series in the city, he wielded his baton in front of the Shanghai Broadcasting Symphony Orchestra, conducting Brahms' Hungarian Dance No.5, and Strauss's Radetzky March.

Hu has the ability to feel the various movements in a com-position, commit them to memory, and lead the orchestra members with the passion, if not the precision, of a seasoned conductor.

Though some might not consider the 24-year-old a bona fide conductor, there is no doubt about his enthusiasm for music.

Wang Bin, a 11-year-old blind Peking Opera performer, is one of Hu's best friends, and he seemed more comfortable with Wang than with the throngs of reporters waving microphones in his face upon his arrival in Shanghai. To a reporter who politely asked who his favorite composer was, the camera-shy conductor muttered Strauss.

Zhang Huiqin, Hu's mother, says that her son has "an innate sense for music" and when he hears it, whether it's emanating from a department store speaker or a home stereo, "he gives it his full, undivided attention."

Jiang Xiebin, a famous Chinese conductor, was quoted as saying that Hu's talent is "pure beauty," and that the young man has a connection with music that cannot be taught -- a soulful sensitivity to harmony and melody that "even some trained conductors lack."

The young conductor's father Hu Houpei is a cellist in Wuhan Symphony Orchestra, and when Hu was a child, his dad always took him along to rehearsals. The child showed an interest in music from an early age, listening quietly at first, then gradually beginning to imitate the movements of the conductor, Zhang Qi.

In 1997, Zhang Yiqing, a documentary director with Hubei TV Station learned of Hu's interest in music. The director made a documentary about Hu's fascination with music that was aired in China, Europe and the US, which brought the young man to the attention of several prominent orchestras. Joining the troupe of disabled performers, Hu has toured around China and the world.

www.china.org.cn/english/culture/56696.htm

The Student who become the teacher

Columbia, SC (WLTX) - One local assistant teacher is living proof that with motivation and a positive attitude there is nothing that can't be accomplished.

"I always tried hard, and I always did my best," said Bryann Burgess, an assistant teacher with a school called Kindermusik.
From day one, the 22-year-old came into this world with an extra obstacle.  "I was born with down syndrome, on August 20th, 1988," Burgess said.

Something that many would see as a difficulty, she turned into an inspiration.  "I'm studying music and theater. It's my major."
Bryann is a junior at USC's Carolina Life non-degree program.
"I'm now living on campus. For the very first time this year and it's really exciting. It was a big challenge from going from home schooling to a big campus at USC, and to live on campus. It was hard. But we did it!"

She's ultimately wants to be a full-time teacher, and is getting hands on experience teaching music along side the director of Kindermusik, Ally Trotter.  "Something about Bryann that I love, is her "authentic". She brings who she is to class."  "I've always wanted to express myself in music," said Bryann, "that's what I've learned in Kindermusik, is just to express myself and enjoy learning."

Bryann brings something invaluable to her students.
"I always tried hard, and I always did my best. No matter what happens, I just keep on going and dust myself off."
Bryann is proof that with hard work and a positive attitude, you can do anything.  "It's been wonderful. It's been quite a journey and the dream never ends," Bryann said.




http://www.wltx.com/news/article/121995/2/Teacher-Born-With-Down-Syndrome-Breaks-Sterotypes



And the Emmy goes too...


Lauren Elizabeth Potter, born May 10, 1990 is a 23-year-old American film and television actress. Lauren is most known for her portrayal of Becky Jackson, the Cheerios co-captain on the hit TV show Glee. Lauren is also a strong activist for individuals with developmental disabilities and has traveled around the country to speak out against bullying that this population often faces. She is connected to such organizations such as The Down Syndrome Association and the American Association of People with Disabilities and is currently a board member for International Best Buddies. Lauren was born in Inland Empire, California and grew up in Riverside, California. She is seen sometimes at the local YMCA. She graduated from Polytechnic High School in Riverside. 

Lauren has also teamed up in the past with Special Olympics CEO Tim Shriver in a campaign that was designed to engage policy makers, parents, and educators to stop bullying that individuals with disabilities are often faced with. In November 2011, President Barack Obama appointed Lauren to the President’s Committee for People with Intellectual Disabilities, where Lauren advises the White House on issues related to that population. Lauren also appeared alongside with Jane Lynch for a PSA (Public Service Announcement) for the campaign "Spread the Word to End the Word," which aims to end the use of the “R word”.

Efrat and Mantanel

Efrat Dotan and Matanel Bitton are tow of SHALVA's young adults with special needs.  Efrat is 26 years old and has Down syndrome while Matanel Bitton is 19 years old and has developmental disabilities.  For a year and a half, they toured Israel and interviewed well-known personalities.  Asking original and sometimes challenging questions, both Matanel and Efrat prove that charisma and personal charm can effortlessly close the gaps that separate individuals with disabilities and individuals without disabilities. 

Among the personalities that have faced the Bitton/Dotan microphone are Prime Minister Benjamin Netanyahu, US Ambassador to Israel James Cuningham, President Shimon Peres, Philanthropist Shari Arison and supermodel Bar Rafaeli.  The Israel Press Associatioin has presented them with press credentials and Minister or Foreign Affairs, Danny Ayalon, appointed them as Israel's 'Good Will Ambassadors'.  The concept is a joint initiative of SHALVA and the popular Ynet news website.

Efrat and Matanel hit the international scene on a recent trip t the AIPAC Conference in Washington DC.  These two young people were able to ask questions about the America-Israel relationship and make it one step close to getting to the White House.  A documentary film about this project is being produced and, without a doubt, the resulting footage will be both dramatic and powerful.

Matanel Bitton and Efrat Dotan have begun to challenge public opinion about individuals with mental disabilities and have already opened the doors to new opportunities for this community.  They are wonderful examples of societal integration and previously untapped human potential.

Multi-Talented Musician

30-year-old Sujeet Desai is an accomplished musician born with Down syndrome. Sujeet plays seven instruments. Bb and Bass clarinet, Alto Saxophone, Violin, Trumpet and Piano. In June 2001 he graduated from high school with honors and in May 2003 from the Berkshire Hills Music Academy in Massachusetts after two-year residential Post-secondary study in Music and Human services. Sujeet travels worldwide to do inspirational solo music performances and self-advocacy workshops. After the graduation he worked as a teacher's aide for a music department in an elementary school and continues to introduce music to individuals at their activity time at their support service centers. Currently he plays his music in community churches, nursing homes, senior centers, hospitals to bring joy to those away from home and family .Sujeet enjoys independent living in his home in Niagara Falls, NY. In 1998, when Sujeet started to volunteer his entertainment the overwhelming response received from his audience led to his decision to make music his career. Since March 2000 he has performed in over 40 states, and 13 countries. Sujeet is a recipient of over dozen of International awards for his music and self-advocacy. One of which is President's award received in Singapore.

Besides music Sujeet has a 2nd degree Black Belt in martial arts Tae Kwon Do. And been “Sensie” at his Martial Arts school teaching students. He is a winner of Gold & silver medals in the World Games'99 Special Olympics in Swimming and numerous medals in Special Olympics in Alpine skiing, Cross-country running and Bowling. He enjoys writing emails to his fans from all over the world that visit his web site. Sujeet opened his web site in 1997 in his computer graphic class, which is visited by over 164,000 people from around the world with rave reviews.

Sarah Gordy-Actress



The actress with Down's syndrome who has earned a milestone role in BBC's Upstairs Downstairs drama

Proud: Upstairs Downstairs actress Sarah Gordy with her supportive mother Jane in Medeira. Jane describes herself as a 'mother with claws'

The Specials

The Specials, a docusoap about five housemates who live the classic student life in Brighton. If that sounds like any other predictable teen reality television show, this is a series with a difference: all five housemates have learning disabilities.
The series, which launches online today, follows Lucy, Lewis, Sam, Megan and Hilly. Aged between 19 and 23, they have been friends since childhood. Four of them have Down's syndrome and one has Williams syndrome, a neurodevelopmental disorder characterised by unusual language skills.
Producer and director Katy Lock wanted to feature friends who shared the classic problems of growing up, from first love to heartbreak, finding a job to arguing over the remote. The feel of the series is described as "Friends meets Skins", and is meant to be funny, touching, honest and "definitely not worthy".

Count Us In: Growing Up with Down Syndrome


Two young men with Down syndrome talk frankly about careers, friendships, school, sex, marriage, politics, and independence. Recipient of seven national awards, including the EDI Award from the National Easter Seal Society.

http://www.amazon.com/Count-Us-Growing-Syndrome-Harvest/dp/B000WPQJY4



Reporter from Brazil with Down syndrome


Unfortunately this is not in English, but I love watching her.  She is a beautiful example of what our kiddos can do.  So inspiring.

Eric Ford-Tae Kwan Do Black Belt

Eric Ford is receiving his black belt in Tae Kwan Do and he’s managed to accomplish the goal despite being born with Down syndrome.

http://dfw.cbslocal.com/2011/05/25/down-syndrome-doesnt-keep-plano-boy-from-getting-black-belt/




Evan Sneider

Sneider, a 31-year-old actor with Down syndrome, is the star of “Girlfriend,” the sweet, beguiling and at times wrenching feature debut from writer-director Justin Lerner about a small-town young man with Down who romantically pursues a single mom.

Carrie Bergeron-Advocate and Motivational Speaker

You can learn more about Michael by visiting Michael's first webpage and Michael's second webpage. Michael's mailing address is: P.O. Box 6157, Evanston, IL 60204.

Carrie may be contacted at 15 South Second Street, Dolgeville, NY 13329. Click to e-mail Carrie directly.


Michael Jurogue Johnson- The Artist

Michael Jurogue Johnson is a gifted contemporary naïve artist who was born with Down Syndrome. Michael paints watercolors, acrylics and oil paintings. He shares an art studio and he paints almost every day. After dinner Michael can often be found working at his mail order business: filling orders, writing letters, and packing his notecards, paintings, and catalogs to be shipped to his customers the next day.




http://loveandlearning.com/michaelpage.shtml


Karen Gaffney-Swimmer

From the moment she was born, Karen Gaffney began an incredible journey that continues today. She is the President of a non-profit organization dedicated to championing the journey to full inclusion in families, schools, the workplace and the community for people with developmental disabilities. She is doing this by creating awareness and calling attention to the tremendous capabilities of people with disabilities.

Karen graduated from St. Mary’s Academy in Portland, Oregon and earned a two-year Associates of Science degree from Portland Community College. She successfully swam the English Channel as part of a six-person relay team. And two years ago, she accomplished her biggest swimming Challenge yet…she swam 9-miles across Lake Tahoe in 59-degree water to raise money for the National Down Syndrome Congress and to show the world that people with Down Syndrome are more alike, rather than different, from everyone else. Karen travels the country speaking to a wide range of audiences about overcoming limitations and about what can be accomplished with positive expectations. Karen tackles any challenge she faces with determination and commitment, knowing she has limits, but not allowing them to limit her drive to succeed. Oh, and by the way…. Karen Gaffney has Down syndrome. 

                            

 

http://www.karengaffneyfoundation.com/

Chris Burke-Actor and Singer

Burke got his first professional acting job in 1987 in the ABC TV movie Desperate. Network executives at ABC were impressed by his performance in Desperate and created Life Goes On with Burke's character, Charles "Corky" Thacher, as the main role. Corky was the first character in a network television series with Down syndrome.  Burke's revolutionary role conveyed a realistic portrayal of people with Down syndrome and changed the way audiences viewed people with disabilities. Life Goes On propelled Burke into fame and wide recognition. The series ran from 1989–1993. Corky said over and over on the series, "Life goes on. I have feelings."




http://www.chrisburke.org/index.php



Pablo Pineda


Pablo Pineda is the first person with Down Syndrome to obtain a major degree from a regular university on Spain. Not quite satisfied with such an achievement, he is currently studying educational psychology, while working at the municipality of Málaga, Spain.

His success has been accompanied by constant struggle against prejudice, particularly that surrounding Down syndrome, not a rose garden. Pablo Pineda told us that this type of disability is not a disease, but: "another personal characteristic."

During a recent "Documentos TV", a program of Spanish Television (Televisión Española), Pablo Pineda demonstrated how his disability did not limit him from conducting a regular life. Following are highlights from the interview.

(not in English but certainly inspiring)

http://www.disabilityworld.org/06-08_03/il/down.shtml



Sheri Byrnard

Sheri was chosen by Down Syndrome South Africa (DSSA) to become their ambassador. She also serves as ambassador on the international Down syndrome board. She was also awarded the highest prestige award from the South African Down Syndrome Association for the highest academic achievement received by a person with Down syndrome in South Africa. Today, Sheri is changing the perceptions of people with Down syndrome and other disabilities.

http://www.peoplemagazine.co.za/article.aspx?id=15957&h=Sheri-rises-above-Down-Syndrome


Jamie Brewer

Jamie Brewer is best known for her breakthrough dimensional role as Adelaide 'Addie' Langdon in "American Horror Story" (2011). She has a theatre background which started in 1999 and she continues her training through the theatre and in improvisation at 'The Groundlings Theatre and School'. Jamie appeared/spoke in PSA's for the "Souper Bowl of Caring Houston Food Drive" in Houston, TX for 2 consecutive years which aired on NBC, ABC, and CBS.

Jamie was the youngest to ever be elected President of the ARC of Fort Bend Chapter. From there, she was appointed to the State of Texas ARC Board, then elected to the Executive Board as Treasurer. Jamie was then asked to serve on the ARC Governmental Affairs Committee for the State of Texas. She spoke with Senators at the Texas State Capitol to persuade them to pass the law for Texas to abolish using the "R" word from state legislation, and regarding the needs of people with disabilities in Texas. Texas now uses "Intellectual Developmental Disability" in their legislation.

Brewer is involved with a several non-profit organizations, including DSALA, DSiAM, BTAP, National Down Syndrome Congress, American Association of People with Disabilities of the United States, and Civitan International.





http://www.imdb.com/name/nm4661932/bio?ref_=nm_ov_bio_sm


Teddy Kremer


Hear the story of Reds honorary bat boy Teddy Kremer. Teddy has Down syndrome and loves the Reds.

Sanna Sepponen

Sanna Sepponen is a Finnish actress with Down syndrome. She played the character Roosa Kemppainen in the soap opera Salatut elämät (Secret Lives) from 2001 to 2004. She is currently on the reality show Toisenlaiset Frendit (Different Friends). Sepponen has also competed in Special Olympics alpine skiing.





Evan The Actor

Believed to be the first actor with Down syndrome to play the lead in a feature film, 31-year-old Massachusetts native Evan Sneider stars opposite Amanda Plummer, Twilight’s Jackson Rathbone and The Riches’ Shannon Woodward in Girlfriend.

Jason Kingsley

Jason Kingsley (b. 1974) is the son of writer Emily Perl Kingsley (writer of Welcome To Holland and Sesame Street writer). He made his first appearance in 1975,^[1] and according to the book Street Gang, Kingsley appeared in over 50 episodes of Sesame Street.
Kingsley appeared in several Muppet & Kid Moments. He also co-wrote the lyrics to "Count Me In" with his mother.
With Marshall Levitz, he is the co-author of Count Us In: Growing Up With Down Syndrome.

Andrea F. Friedman-Actress/Speaker

http://www.imdb.com/name/nm0295141/resume?ref_=nm_ov_res



Luke Zimmerman-Actor

Luke Zimmerman was born with Down Syndrome but wouldn't let that hold him down from doing what he loved to do: perform. Luke played Romeo in the play Romeo and Juliet and performed in the 1990 television movie drama Daughter of the Streets playing Andrew, alongside Roxana Zal, Harris Yulin, and John Stamos. In 2007, Zimmerman tried out for the role of Tom Bowman, Grace Bowman's adopted older brother on The Secret Life of the American Teenager which began airing in July 2008.

Jon Stoklosa-Weightlifter

Jon Stoklosa from Newark, Delaware, won a gold medal in the Special Olympics World Games in 1999 and now competes against athletes who aren't disabled.

 

 



Brad Hennefer

"I play golf because it's fun, and I can spend time with my father, and my brother, and my friends.  It's good exercise, and, really, because it's fun!"-Brad Hennefer, age 21


                                      

 

Garrett "G-Money" Holeve

UFC mixed martial arts fighter.




http://m.mixedmartialarts.com/mma-news/414745/Downs-Syndrome-cant-stop-Garrett-Holeves-UFC-dream/



Maria Reyes
 

María Reyes’ dream was to produce and sell her biggest passion, marmalade. With the support of her mother and family members she achieved her dream and markets the product in many cities of her country. Her face is on the logo of the product, which always look fresh and delicious.






Ashley Deramus-Fashion Designer

Ashley recently launched her new clothing line for women with Down syndrome. Inspired by her own needs, she decided to create a product that fits the unique shape of women like her. The official launching was presented at the Down syndrome Congress conference in July of 2013.

http://www.ashleyderamusfoundation.org/#!

 

 

 

Muscle Tone vs Muscle Strength

So What Is The Big Difference?

The Difference Between Muscle Tone and Muscle Strength Explained By Diane E Gagnon, M.Ed., PT (Physiotherapist) Biddeford, Maine

Many people don't understand the difference between muscle tone and muscle strength. True muscle tone is the inherent ability of the muscle to respond to a stretch. For example, if you quickly straighten the flexed elbow of an unsuspecting child with normal tone, the biceps will quickly contract in response (automatic protection against possible injury). When the perceived danger has passed, which the brain figures out really quickly once the stimulus is removed, the muscle then relaxes, and returns to its normal resting state.

The child with high tone or "spasticity" has over-reactive response to the same stimulus. When his arm is stretched, the biceps tightens at an even more rapid rate, and the rate of recovery is much slower, even after the stimulus is removed. Full relaxation is difficult to achieve, so the muscle stays taut for an extended period of time. If another stimulus is added before the muscle has a chance to recover (which happens often during normal movement in the everyday world), the muscle contracts again, becoming tighter. Because this child's muscles never truly rest unless he is asleep, the long term result is tighter, shorter muscles with reduced joint range. This is typically seen in the child with spastic CP.

The child with low tone has muscles that are slow to initiate a muscle contraction, contract very slowly in response to a stimulus, and cannot maintain a contraction for as long as his "normal "peers. Because these low-toned muscles do not fully contract before they again relax (muscle accommodates to the stimulus and so shuts down again), they remain loose and very stretchy, never realizing their full potential of maintaining a muscle contraction over time. These are the "floppy" children who have difficulty maintaining any posture without external support. A child's unique neurological wiring determines whether he will be low, high, or normal toned.

Most people have "Normal Tone". In those who do not, a number of factors are involved. Somewhere deep in the muscle are receptors responsible for detecting changes in muscle length. These receptors then tell the brain there is a stimulus, and the brain tells the muscle to contract in response. There are numerous feedback loops to tell the brain whether the muscle has responded appropriately, needs to contract again, relax or whatever... In addition, there are receptors that tell where each joint is located in relation to all the other body parts that help to determine position in space, etc. A delay in perception, decoding, or transmission anywhere along the neural pathways will result in a change from an optimal response, or "normal" tone.

People often refer to having a "toned" body when they are in "good physical condition" and exercise regularly. Their muscles are taut, and they look lean. An out of shape person is referred to as having "poor tone", with fleshy muscles and an abundance of "fat".  Neurologically these people actually have the same "tone", and the fat person is inherently capable of looking as "toned" as the other (with some allowances made for genetic make-up of course), and just needs to exercise regularly. Fitness experts and health clubs will tell you they are "improving muscle tone", when they are actually reducing the amount of fat to lean body mass ratio.

You can improve your fat to lean body mass ratio, and you can become stronger too. These are under your voluntary control. Muscle tone occurs at an involuntary level. We can effect changes in muscle responses with sensory integration treatment techniques that increase the "alert state of the muscle" by bombarding it with sensory stimuli and improve the brains ability to perceive changes in muscle length, preventing it from accommodating to stimuli.

With ongoing treatment and practice throughout the day, the more "normal" response elicited, the stronger and more efficient even low toned muscles become. "That" is the basis of our classroom program for children with low tone. Sensory bombardment can effect changes in perception that then lead to changes in efficiency along the neural pathways. But it goes way beyond a couple of hours a week in the gym.

© 1999 Diane E. Gagnon, M.Ed., PT Biddeford, Maine 04005, USA

 

My little Emmalin and a fine example of low tone.  So hard to believe this was comfortable.

 

 

Tone by Loren Shlaes-Pediatric Occupational Therapist

As a therapist, I sometimes forget that civilians don't understand all of the professional jargon that my colleagues and I use to communicate with each other. I try, when I write an evaluation of a child, to explain what each thing I assess means, and most important, how it affects the way the child functions. But when I hand over a 12 page report to a parent, I have to remember that not everything is sinking in all at once, and that the information I'm conveying has to be absorbed, bit by bit, as the parent can integrate it.

"Low tone" is something we occupational therapists talk about quite often. But parents complain to me that they have no idea what that means. Sometimes it's quite obvious -- the mother of one of the children that I treat just had a baby, and she called me to tell me that the baby is so weak and floppy that it can't tighten its fist around an index finger placed in its palm. Other times it's not nearly as apparent, and a child can appear to be quite athletic and still be plagued by all kinds of problems associated with low tone.

Tone is the amount of electricity that courses through the muscles and allows them to do the jobs of extending the body against gravity, contract themselves around joints for balance and stability, and work for long periods of time without undue fatigue. An example of someone with plenty of tone is a professional athlete or dancer. I'll never forget the time I met my favorite baseball player, Dennis Eckersley. He practically crackled, he had so much juice and electricity flowing through his body! As far as I know, there is no one definitive reason for low tone.

Some people believe that it is a nutritional issue, and that for some reason the body is not delivering, {perhaps because of dietary issues or metabolic difficulties} or the muscles are not utilizing, the raw materials needed for maintenance and sustained use. The child's muscles don't develop well, and so they tire easily.

An under responsive vestibular system can be a possible reason for low tone. The vestibular nerve is responsible for many things. It tells us, along with our eyes and muscles, where we are in space. It also responds to how much and what kind of movement we get, and communicates directly with the muscles that extend us against gravity and allow us to be upright. It also talks to the part of the brain that is responsible for alertness, attention, and arousal. If the vestibular nerve is not picking up and processing this information correctly, the result will be insufficient muscle tone and chronic low arousal.

Another issue that interferes with the child's ability to function is delays in the maturation of spinal reflexes. When a child is born, its nervous system is immature, unlike a horse's -- a pony can get up and walk shortly after birth. Humans start out instead with nervous systems that respond by increasing or decreasing muscle tone in response to certain stimulation, and then go on to refine themselves through movement and play until voluntary control is established. Then the reflexes disappear. If they don't disappear and are dominating the nervous system, the child will have difficulty working his body against gravity.

If your child tires easily, complains that he doesn't have any energy, can't sit up while he's writing, is a chronic slumper, or has a hard time sitting still or sitting on the floor, chances are his tone is low, even if he appears to be athletic. I've seen plenty of boys who could pitch a ball like Roger Clemens -- but their core strength was so weak that they couldn't do a single sit up or lift their chests and thighs up off the floor when lying on their bellies. Children with low muscle tone have an especially difficult time of it in school, because their bodies don't have the effortless uprightness against gravity that allows them to sit still. If they are struggling to stay upright, they're using the mental and physical energy to sit that they should be applying towards attending to the lesson.

I once went to school to observe a little boy who acted out a lot, especially during circle time, when all the children had to sit cross legged on the floor. The day I saw him, during circle time, he sat with his legs straight in front of him and his hands behind his back on the floor, using his arms to brace himself. He simply was not able to sit in the traditional "criss cross applesauce" position, and needed the additional support from his arms, and wide base from his extended legs, just to stay upright. I saw immediately that he was so uncomfortable sitting this way, and that it was so much effort, that he couldn't sit on the floor and attend to what was going on at the same time. He didn't have enough sophistication in his language to tell anyone what the problem was. His only recourse was to refuse to stay there for very long, and this was viewed as disruptive behavior. I suggested to his teacher that he either be allowed to sit in a chair or that he be assigned a place against the wall so that he could sit with his back supported. He was much happier after that, and he was much more able to attend. Low tone affects many aspects of function, which I will address in future posts.  Meanwhile, if your child has low tone, no amount of yelling at him to sit up straight will help. Try incorporating activities to strengthen the trunk, like sitting on a therapy ball while doing homework or watching TV, doing sit ups and pushups, wheelbarrow walking, wrestling matches, and playing with whistles, bubbles, and blow toys to your child's daily routine. Spinning is good for vestibular activation, if your child likes to spin. Or take your child outside and play tag or ball, or organize a game of statues or red rover with other children in the neighborhood.

 

 

So Now What?

Evaluation

Your child’s doctor will run a series of tests to determine the extent of the condition. He may use x-rays and other tests to check muscle and nerve function. He will also assess your child’s balance, coordination, and motor skills. Whenever possible, your child’s underlying medical condition will be treated.

Treatment

Hypotonia may sometimes gradually improve with treatment. A physical therapist might use a sensory stimulation program, which involves facilitating muscle contractions by stretching and tapping the muscles. Physical therapy may help improve fine motor control. Your child will also likely be treated by an occupational therapist. The occupational therapist will also work to improve fine motor control.

Speech Therapy

Low tone does not stop with physical and occupational therapy.  Low tone in fact plays are large role with our kids speech.  Children with hypotonia often have trouble breathing and vocalizing. Hypotonia can affect the ability to move oral structures like the jaw, lips, and tongue. It can also affect the quality and rate of speech, often resulting in slurred or slowed speech. A speech-language pathologist (SLP) can help your child improve his swallowing and feeding abilities, as well as address his speech delays. She may help him improve his oral motor skills, which means that he will have better control over his mouth muscles. 

See more at: http://www.speechbuddy.com/blog/language-development-2/coping-with-hypotonia/#sthash.vxUhGShz.dpuf

 

Emmalin started hippotherapy to help with the low tone.  The horse will be a great addition to our therapy program.

Methylation and MTHFR

What is Methylation

Simply put, methylation is a chemical reaction that occurs in every cell and tissue in our body.  Chemically speaking, methylation is the process of adding methyl groups to a molecule.  (A methyl group is a chemical structure made of one carbon and three hydrogen atoms.)  Since methyl groups are chemically inert, adding them to a protein (the process of methylation) changes how that protein reacts to other substances in the body, thus affecting how that protein behaves.  Enzymes, hormones and even genes are proteins and the process of methylation affects them all.

In some way, methylation of proteins helps the body detoxify.  For example, the methylation process helps convert the toxic amino acid (homocysteine) into a beneficial amino acid (methionine).  If your body cannot methylate properly, toxins build up in your bloodstream and will eventually cause disease. 

Another role of methylation is to help the enzymes in our bodies work efficiently.  Enzymes are proteins that act like switches for chemical reactions-they initiate very important processes in every cell and tissue.  In a similar way, methylation affects our genes, which are also made up of proteins.  In fact, methylation can turn genes on and off, which can be good or bad for our health, depending on the gene.

Some nutrients affect the process of methylation quite dramatically-methyl donors (nutrients like folate and choline) actually donate methyl groups to proteins and methylating factors (nutrients like vitamin B12 and zinc) helps this process along by monitoring specific methylation reactions.  how well your body "can methylate" is important to your overall health.

What is MTHFR and How is it Related to Methylation

MTHFR (methylenetetrahydrofolate reductase) is an enzyme that converts folic acid into usable form that our bodies need.  It is a key enzyme in an important detoxification reaction in the body-one that converts homocysteine (toxic) to methionine (benign).  If this enzyme is impaired, this detoxification reaction is impaired, leading to high homocysteine blood levels.  homocysteine is abrasive to blood vessels, essentially scratching them, leaving damage that causes heart attacks, stroke, dementia and a host of other problems.

Additionally, when the enzyme MTHFR is impaired, other methylation reactions are compromised.  Some of these methylation reactions affect neurotransmitters, which is why impaired MTHFR activity is linked with depression.  Inefficiency of the MTHFR enzyme is also linked to migraines, autism, fertility, cancer and birth defects, all of which depend on proper methylation.

High levels of homocysteine can be attributed to many conditions such as: 

*  The condition can lead to high rates of dementia /Alzheimer`s due to a decrease in vitamin B-12. 

*  High homocysteinemia can lead to coronary artery disease, common carotid atherosclerosis other Vascular Diseases.

*  Complications in Pregnancy Due To Neural Tube Defects. 

*  Atherosclerosis

*  Rheumatoid Arthritis

*  Downs Syndrome

*  Alcoholism

*  Osteoporosis

*  Neuropsychiatric Disorders

*  Non Insulin Dependant Diabetes

*  Early Pregnancy Loss

*  Spontaneous Abortion (Viable Fetus)

*  Placental Abruption, Low Birth Weight

What is the MTHFR?

There is a gene called the MTHFR gene that basically controls how well this enzyme works.  A simple blood test can tell you if you have variant copies of this gene.

There are over 50 known MTHFR variants, but the two prime variants are called 677 and 1298, the numbers refer to their location on the gene.  The routine lab test for MTHFR variant only reports on 677 and 1298 as these are the most studied.

The 677 variant is associated  with early heart disease and stroke and the 1298 variant with a variety chronic illnesses.  The MTHFR is reported out as heterozygous or homozygous.  If you are heterozygous you have one affected gene and one normal gene (could have come from either parent).    The MTHFR enzyme will run at about 55% to 70% efficiency compared to a normal MTHFR enzyme.  If you are homozygous then enzyme efficiency drops down to 7% to 10% of normal, which of course makes a huge difference."  Emmalin is homozygous as am I.  She got one copy from her father and one copy from me, just as I received one from each of my parents.

"The worst combination is 677/1298 in which you are heterozygous to both anomalies.  Many chronic illnesses are linked to this anomaly.  98% of autistic children have an MTHFR anomaly.  Fibromyalgia, irritable bowel syndrome, migraines, are all conditions associated with MTHFR anomaly." 

"MTHFR can make you susceptible to illness because the pathway is the primary source of glutathione production in the body.  Glutathione is the body's primary antioxidant and detoxifier.  People with MTHFR anomalies usually have low glutathione, which makes them more susceptible to stress and less tolerant to toxins."  

"As we age MTHFR problems get much worse due to the accumulation of toxins and the cumulative effect of oxidative stress, which ages our bodies."

What kind of symptoms are associated with the MTHFR gene defects?

There are many different symptoms someone with one or both gene mutations might encounter.  Not everyone has the same set of symptoms because there are many other genetic and environmental differences that complicate health.  But if you boil it down, there is a key systemic problem that comes from low methylation and it causes three different symptom areas. 

Systemic problem:  Homocysteine levels are too high due to the fact that not enough Methylfolate is available to convert the Homocysteine into Methionine, SAMe and Glutathione.  Think of Methylfolate (L-MTHF or 5-MTHF) as the wizard changing the bad guy (Homocysteine) into good guys (SAMe and Glutathione).

Three symptom areas:

    1.  Central Nervous System disorders - some of these come from Homocysteine not getting converted into SAMe.  SAMe is responsible for creating Serotonin, Dopamine, and Norepinephrine (neurotransmitters responsible for mood, motivation, and to some degree energy levels - if these are low, then Depression is often the result, but even aggression and alcoholism are symptoms sometimes found in men).  Pregnant women may encounter extreme Post-partum depression.  Also, things like Fibromyalgia, Chronic Fatigue Syndrome, Migraines, IBS (Irritable Bowel Syndrome), Memory loss with Alzheimer's and Dementia and other psychiatric problems can be tied to this issue (OCD, Bipolar, Schizophrenia, and more).  These challenges are typically more related to the 1298 gene mutation.  A very recent clinical trial (not even published yet) was done by Dr. Fava (July, 2011) showed that giving L-Methylfolate (Metafolin) found in the prescription 'medical food', Deplin, was as effective as the top anti-depressant drugs available today (and without all the side effects).

   2.  Cardiovascular problems often occur when Homocysteine levels in the body are too high.  Heart attack, Stroke, Blood clots, Peripheral neuropathy, Anemia even Miscarriages and Congenital birth defects can be related to this issue among others.  These problems are typically more related to the 677 gene mutation, but the worst is for a person who has one 677 variant and one 1298 variant.

    3.  Environmental poisoning can increase when not enough Homocysteine gets converted into Glutathione.  Glutathione is responsible for detoxifying the body of the heavy metals we encounter in the environment - it is our body's most powerful antioxidant.  When a body gets too burdened by heavy metals and toxins, a lot of unexpected health problems emerge.  Some symptoms of this can be: nausea, diarrhea, abdominal pain, liver and kidney dysfunction, hypertension, tachycardia, pulmonary fibrosis, asthma, immune problems, hair loss, rashes and more.

Sometimes diseases/disorders fall under a 'two-pronged' cause, meaning the causes of it stem from both genetic and environmental problems).  Autism is a big one that falls into this 'two-pronged' cause category [American Journal of Biochemistry and Biotechnology, 2008] along with Fibromyalgia, Chronic Fatigue Syndrome and more.  MTHFR is at the top of a list of 16 genetic defects for autism.  Another study showed 98% of children with autism had one or both of the MTHFR gene defects (677 and/or 1298).  A recent clinical study indicated that mothers with MTHFR who didn't take folate during pregnancy were 7 times more likely to have an autistic child than mothers without the MTHFR gene defect [Epidemiology, July 2011, Vol. 22, Issue 4, pgs 476-485].  Colon and gastric cancers also have key links to the MTHFR gene defects, just do an internet search on 'MTHFR and colon cancer' or 'MTHFR and gastric cancer' and you will find many clinical studies and articles on the subject.


 If I Have Variant Copies of the MTHFR Gene, What Can I Do?

If the MTHFR enzyme is inefficient, you can compensate for your body's inability to methylate efficiently since this biological process is dependent on several B vitamins.  You may simply need more B vitamins than someone without a variant copy of this gene, such as vitamin B6, B12 (methylcobalamin) and the active form of folate (5-methyl tetrahydrofolate).  Other methyl donors such as SAMe and trimethylglycine may also provide benefits.  If you have a defective copy of the MTHFT gene, it is important for you to monitor your homocysteine level as well.  Fortunately, lowering homocysteine can often be done with the nutrient supplements listed above.


Determining what copies of the MTHFR you have gives you the ability to compensate accordingly.  The old paradigm that we are simply a the mercy of our genes is now challenged.  Genetic testing empowers you to take control, launching you into a new age of truly individualized healthcare.

Update 6-21-16
MTHFR Gene Mutation: A Beginners Guide

I knew the more I researched the more I would discover.  The deeper I looked I realized how hard Emmalin's little body really has to work.  As scared as some of this makes me, I thank God I know what to do to help my child be her best.  Now most of the stuff I was already doing with Emmalin so I only have to change up a few things.  I now know what multi-vitamins she can handle and which ones are toxic to her and me.  I have always been heavy on the B Vitamins but I did need to change her B12 vitamin based on this new information.

http://www.methyl-life.com/symptoms-of-mthfr.html

Why MTHFR Is Only A Part of Methylation

http://www.mthfrsupport.com/why-mthfr-is-only-a-part-of-methylation/

Here is the B Vitamin that we use currently.

http://www.amazon.com/Pure-Advantage-B-12-Methylcobalamin-Spray/dp/B0014JOBXS

And here is the vitamin we are switching too:

http://www.nutrichem.com/index.php?page=shop.product_details&product_id=3485&flypage=flypage.tpl&pop=0&keyword=msb&option=com_virtuemart&Itemid=41

Please watch for my next post when I go into details about the lifestyle and dietary changes I have made for Emmalin and our family, now that we know each of us is affected by the MTHFR gene.