As seen on www.Eparent.com: Public libraries have been around since the late 1800s in the US but in the last two decades or so, they have been evolving from traditional formats to meet the needs of all learning abilities. In earlier years, libraries as we knew them were fairly predictable, housing a variety of books, CDs and DVDs.   But nowadays, libraries are proactive, making positive changes to meet the accessibilities of their special needs patrons.

 I visited two libraries within 20 miles of my home to see first-hand how each is making a difference and   leading the way and establishing a precedence for other libraries nation-wide. I was elated to witness the changes first hand. This two part series will first celebrate Bordentown Branch Library in NJ and be back with a close look at the New Jersey State Library’s Talking Book and Braille Center next month.

 Nothing worth doing is ever easy- especially when there is no formula to follow.   When you have to take the initiative, take the lead and make the path for others to follow, trial and error is inevitable.  

 But trial and error has not deterred the children’s librarian at the Bordentown Library in Bordentown, NJ, which is a branch of the Burlington County Library System. Ms. Beverly Jacob, head of the Youth Services   Department at the branch, has been working as a librarian for nearly twenty years and although overwhelmed about her library’s growing pains, she is undoubtedly pleased by the changes she has seen.

 When I walked into Ms. Jacob’s inviting children’s section, a large, colorful display caught my eye. I immediately noticed something different.

 Most of this section is not unusual; it’s the Special Needs Section.   There are, of course, books to help children with special needs, there are books to assist parents of children with special needs, there are video tapes and DVDs too.   But here, in addition to these helpful resources, are also more than twenty “manipulatives” on display.

 The term manipulatives is used to describe toys, games and instruments that act as teaching tools while creating fun for children. Examples of these include the “Wave Drum” which is beneficial for children with limited motor control since the “slightest action creates auditory and visual effects.” “Sequencing Sounds”, the sound and picture matching activity game works on recognition of short sound sequences by putting the pictures in order based on the sounds they hear. This addition means that the same manipulatives or resources utilized by special education teachers are available for parents to use with their children at home. All of which can be checked- out along with favorite books.   And each is nicely packaged with instructions enclosed to boot.

 I watched as Ms. Jacob helped a parent of an autistic child recently choose the ­­“Echo Microphone” which is used to encourage children to vocalize. It was scintillating to see such interest in these manipulatives and gratifying to imagine the effect each will have at home.

 In addition to providing new resources at the Bordentown Branch Library, Ms. Jacob is coordinating programs for children and young adults with special needs such as music, yoga, ­­­chess, and gymnastics.

 So, how can your library to the same?

  “There is so much to be done and so many directions that we can go in with this project. Fortunately, in 2007 the Bordentown Branch Library Association was named in a trust to use monetary proceeds for educational purposes. We applied and received a generous donation through the Nelchen T. Seivers Trust. The Bordentown Library Association wanted to help children with autism and as I began searching for materials I learned that there were so many other challenges that faced our children that I decided to expand the collection.   I have been extremely busy with this exciting endeavor for nearly three years!   There is so much available and I continue to learn more each day.”

 Toys can be borrowed up to one week, and books up to one month. Patrons must have a library card to do so. Even though these new items have been purchased with special needs children in mind, they are beneficial to all children, encouraging creativity, language development and problem solving.

 Ms. Jacob explained how she went about ordering the manipulatives.   “How did I decide what to purchase with the funds?   The initial process involved reaching out to our local schools. I contacted the Special Education teachers in the Bordentown Regional School District and asked them to show me what they used in their classrooms and what catalogs they ordered from. I also contacted the Social Worker in the school district to explain to me the variety of disabilities that children and young adults have in the area. I also attended the area’s “Back-to- School” nights advertising the upcoming planned “Special Needs Collection” and the following year at the same function, announced to the parents and caregivers the progress of the project which was quite rewarding. Since then teachers, parents, and caregivers have been utilizing the collection and their comments have been very positive.”

 As a result of her dedication, Ms. Jacob’s skills are in popular demand.   She was asked to attend the first annual Disabilities Fair at a local school in April, and will be speaking at the New Jersey Association of Library Assistants (NJALA) Conference in June. She has also partnered with the Family Support Organization of Burlington County and has begun to have their presenters come to the branch to present such parenting and special needs topics such as bullying, explosive behavior, IEP process classes, the Total Transformation Program, and others.

For more information on how to encourage your library to follow suit, you may contact Beverly Jacob at (609) 298-0622 ext. 209 or email her at bjacob@bcls.lib.nj.us .

As Seen on Exeptional Parent Website, www.eparent.com:

Parents who receive a diagnosis of autism in their child face a daunting set of questions. To provide them with guidance and support, the American Academy of Pediatrics (AAP) has created a series of audio interviews with developmental and behavioral pediatricians, a pediatric neurologist, autism researchers and other parents of children with autism. Listen to Sound Advice on Autism at www.aap.org/audio/autism/

 ”We want parents to use these audio interviews as a resource as they learn about their child’s diagnosis and plot a course of therapies and services,” said Judith Palfrey, MD, FAAP, president of the AAP. “We know parents have many questions, and pediatricians want them to have access to the scientifically based information they need to make decisions about their child’s care.”

 April is Autism Awareness Month, which is an opportunity to increase understanding about autism and issues within the autism community. At the Sound Advice on Autism site, parents can listen first-hand as experts answer questions about autism spectrum disorders:

• What causes autism? How common is it?
• What are the early signs of autism?
• How can families learn about early intervention services in their area?
• What are the most effective therapies for autism?
• What guidance would you offer parents who want to explore complementary and alternative therapies?
• Can particular diets or vitamins help children with autism?
• Is autism related to gastrointestinal disorders?
• Why do some children “lose” their autism diagnosis?

 ”It’s very important for families to educate themselves about autism spectrum disorders and the recommended therapies so they can help develop the treatment plan for their child,” said Susan Hyman, MD, FAAP, a developmental and behavioral pediatrician and chair of the AAP Autism Subcommittee. In Sound Advice on Autism, Dr. Hyman answers questions about complementary and alternative treatments for autism, including advice on the best way for parents to approach such treatments. Interviews also include conversations with developmental and behavioral pediatrician Susan Levy, MD, FAAP, pediatric neurologist Max Wiznitzer, MD, FAAP, and developmental and behavioral pediatrician Patricia Manning-Courtney, MD, FAAP.

 AAP has also posted a 2007 audio roundtable featuring Dr. Hyman and Simon Baron-Cohen, PhD, a professor of developmental psychopathology at the University of Cambridge, and Catherine Rice, PhD, a behavioral scientist and epidemiologist at the Centers for Disease Control and Prevention. In another interview, Ken Reibel, a parent of a child with autism, discusses his son’s diagnosis and therapies. Additional interviews will be posted later in April and throughout the year. Transcripts of all the interviews are available on the site. The AAP offers additional resources for families at www.aap.org/healthtopics/autism.cfm

As seen on www.eparent.com:

Stars like David Robinson and Eva Longoria Parker who have dedicated themselves to helping others, will shine during the Saturday, April 10, grand opening of Morgan’s Wonderland, the world’s first ultra-accessible family fun park designed with special- needs individuals in mind.

 In preparation for the festivities that will include a galaxy of entertainers, the colorful 25- acre park will be closed until 5 p.m. when San Antonio Spurs basketball legend and NBA Hall of Famer Robinson takes the stage to emcee an hour-long ceremony that will feature Longoria Parker, star of ABC-TV’s “Desperate Housewives,” and Gordon Hartman, founder of the Gordon Hartman Family Foundation as well as the driving force behind Morgan’s Wonderland.

 “We’re truly delighted to have two tremendous role models like David Robinson and Eva Longoria Parker join us for our historic grand opening,” Hartman said.   “They’ve unselfishly helped so many individuals through the Carver Academy and Eva’s Heroes, respectively.”

 The ceremony also will include the invocation by noted pastor Dr. Buckner Fanning; singing of the national anthem by Richard Flint, a vocalist with autism who has performed at special events throughout San Antonio; remarks by U. S. Rep. Charles Gonzalez and San Antonio Mayor Julian Castro; and a brief video presentation on the creation of Morgan’s Wonderland.

 In addition, Kinetic Kids, comprised of children with physical challenges, will dance to“You Raise Me Up” performed by Donald Braswell, a star of the “America’s Got Talent” TV show.   Other special guests will include Kemi Yemi-Ese of Houston, Ms. Wheelchair Texas 2010.

 NewTek Inc., of San Antonio will use its Tricaster portable production system for live streaming of the grand opening ceremony on the World Wide Web.  

 Because of the magnitude of grand-opening activities, no on-site parking will be available at Morgan’s Wonderland, however free shuttle-bus service from North East Independent School District’s Heroes Stadium (4799 Thousand Oaks Drive at Wurzbach Parkway) and Blossom Athletic Center (12002 Jones-Maltsberger Road at Bitters Road) will begin at 4 p.m. and continue until 10:30 p.m.   While reservations are normally required for admission to Morgan’s Wonderland, that will not be necessary for grand opening, said Dave Force, the park’s general manager.

 At 6 o’clock following the grand-opening ceremony, guests will be invited to tour the park and enjoy non-stop entertainment on three stages until 10 o’clock closing.   At 9 p.m., a dazzling laser show produced by George Cisneros will be presented outside the Event Center as well as across the park’s lake.   The three entertainment venues will showcase the following performers and activities: Main Stage (outside the entrance to Morgan’s Wonderland and emceed by KSAT-TV’s Ursula Pari and Steve Spriester following the opening ceremony) – Drumming With Nina (Rodriguez), a percussion group that relies on drumming to lift the spirit; globally popular singer Donald Braswell and his 10-piece orchestra; Luca “Lazy Legz” Patuelli of Montreal, Canada, an international break-dancing phenom on crutches who has not let his physical limitations hold him back; The Chris Taylor Band and Million Dollar Trio; Chris Fonseca, who despite being born with cerebral palsy has appeared on national TV and at special events coast to coast; and Adler, a popular San Antonio rock band. Amphitheater – The Heart of Texas Concert Band, which specializes in instrumental numbers; magician Jed Spangler, a graduate of the renowned Magic and Mystery School that has produced other world-famous magicians; Kinetic Kids and River City Christian School cheerleading teams; Lazy Legz; and DJ Ronny Tee.

 Event Center – L.S.G.M. Foundation, made up of high school and college-aged musicians with and without disabilities that play pianos together; the Angels Accordion Orchestra comprised of children and adults with special needs from the Dreams Fulfilled Through Music organization; Lazy Legz; and (performing next door at The Picnic Place) the Scrubs brass ensemble, part of the U. S. Army Medical Command Band, as well as the interactive Urban 15 “Learning to Listen” Percussion Workshop.

 Roving Entertainment – SSCOT, also known as the “Star Wars” light-saber training group; magicians; face painters including Sue Fleming and the Balloon People; multiple clown groups including the Jolly Joeys Clown Alley and the Lady Shriner Clowns; and balloon sculptors.      

 The park’s Lakeside Pavilion will become an information center for the evening as well as a sign-up location for those who would like to volunteer their time to assist guests at Morgan’s Wonderland.   Guests also can register for future visits to Morgan’s Wonderland.

 “Morgan’s Wonderland is a special place where anyone can have fun,” Hartman explained, “but it was created with special-needs individuals in mind.   We’ve taken an abandoned rock quarry in Northeast San Antonio and transformed it into an outdoor recreation oasis for those of all ages with cognitive and physical challenges.  

 Unfortunately, countless children and adults with special needs do not have access to facilities that can help them fully enjoy outdoor recreation.   We truly hope Morgan’s Wonderland will begin to change that.   The initial response has been incredibly positive.”  

 The inspiration for the park came from Hartman’s 16-year-old daughter Morgan.   Her soaring spirit despite personal challenges sparked within Hartman a deep desire to create a haven not only for those with special needs but also for their families, caregivers and invited friends.   “Inclusion is the overarching objective for Morgan’s Wonderland,” he said.  

 “Our vision is to play a pivotal role in helping establish more ultra-accessible family fun parks throughout the nation.”

 Morgan’s Wonderland, which is completely wheelchair-accessible, features more than 25 elements and attractions including rides, playgrounds, gardens, an eight-acre fishing lake, 18,000-square-foot special-events center, 575-seat amphitheater, picnic area and rest areas throughout the park.

 Signature elements include rides that can accommodate wheelchair-bound guests; the Sensory Village™, a cluster of themed spaces such as an auto fix-it shop, grocery store and TV station that offer sensory stimulation through colors, lights, sounds and textures; and the Sand Circle™ play area, where even kids in wheelchairs can scoop up sand and be part of the fun.

 In contrast, the nearby Garden Sanctuary offers a quiet retreat in the heart of the park, and its semicircular Memorial Wall will be engraved with names of loved ones with special needs who have passed away.

 Other park features include Braille signage, a 3-D park model, 18 ADA-compliant

restrooms, a first-aid station, vending machines and seven acres of free parking.   The special-events center as well as pavilions and picnic areas can be reserved for birthday parties, family gatherings, fundraisers and other special events.

The park is on the following operating schedule until May 28: 10 a.m. to 2 p.m. Wednesday through Friday; 10 a.m. to 6 p.m. Saturday and Sunday.   Summer hours of operation will be extended.

 Admission for special-needs guests is free; admission for accompanying family members and friends is $5 per person.   For parties that do not have those with special needs in their group, admission is $15 per person.

Following is an interesting segment from the NBC Today Show, which clearly demonstrates just how amazing the human brain is!

From the NBC Today Show: For three years, little Cameron Mott’s life was a nightmarish succession of violent seizures that consumed her days and threatened her life. Finally, doctors told her parents there was a way to stop them: All they had to do was remove half of Cameron’s brain.

It was not a diagnosis a pareny wants to hear. And going through with the operation was not an easy decision. But the alternative was a steady deterioration of the right half of Cameron’s brain — and her whole life.

“It was very scary, because you just can’t imagine what your child will be like after such a dramatic brain surgery,” Shelly Mott told TODAY’s Ann Curry Thursday in New York. “It just doesn’t seem like they can be the same child.” Shelly could smile as she said it, because next to her on the couch was Cameron, all curly hair and smiles and bouncy energy.

They got their daughter back
Her father, Casey Mott, called Cameron “bubbly,” and the adjective fit perfectly. She was bubbly as a baby, and now, after the radical surgery, she’s bubbly again.

“We more or less lost our daughter and got her back,” Casey told Curry.

Cameron’s story really began six years ago, when she was 3. She suddenly started having seizures. A video supplied by the Motts shows the girl playing happily, then suddenly going completely rigid and collapsing headfirst onto the floor.

For the next three years, the Motts took Cameron to dozens of doctors who conducted hundreds of examinations in an effort to discover what was causing 10 or more such seizures a day. All the while, Cameron’s cognitive functions were deteriorating and she was losing the ability to speak.

Finally, doctors put a name on the condition: Rasmussen’s syndrome, a condition that causes the destruction of one side of the brain. The solution was radical. It’s called a hemispherectomy, which means the removal of half of the brain.

Radical surgery
The Motts live in North Carolina, and they agreed to travel to Johns Hopkins University Medical Center in Baltimore, where neurosurgeon Dr. George Jallo led the team that carefully removed the right side of Cameron’s brain. The surgery took more than seven hours.

That was in 2007, when Cameron was 6. An image of her brain shows an empty space on the right side and a normal brain on the left.

Since the left side of the body is controlled by the right side of the brain, doctors knew that Cameron would be paralyzed on her left side when she awoke. But they also knew that the brains of children have amazing abilities to rewire themselves.

“We like to do children because of their ability or their plasticity — that’s the ability of the other side of the brain that we haven’t removed to take over and control the function of the diseased half we’re removing,” Jallo told NBC News.

Cameron was immobilized for the first two days after the surgery to allow her brain to stabilize. Then she went into an intensive physical therapy program. Four weeks after the surgery, she walked out of the hospital.

The right choice
The agonizing decision the Motts had had to make turned out to be right.

“It was absolutely the right choice,” Shelly said. “And, really, for us, when we knew what she had, and we knew that this was our only option to help her, the risk was something that we were willing to deal with because her quality of life was so poor.”

Cameron was able to return to school, where she is now in the second grade and a good student. Her physical therapy sessions have just recently ended, and she can run and play, although she has a slight limp and still wears a brace on her left leg. She also has lost some peripheral vision.

When Curry asked Cameron if she had any lingering effects from the surgery, she said, “no, none at all”.

“We were just asking for some sort of normalcy,” Casey told NBC News. “We didn’t know that we were going to get the full deal. I tell Cameron’s story as a miracle. I truly believe that miracles happen and my daughter Cameron is a walking example of that.”

NBC’s chief medical editor, Dr. Nancy Snyderman, showed on a medical model how half of Cameron’s brain had been removed.

“Because the pediatric brain is so elastic, the left side of her brain took over for the right side, and look at her now. It’s extraordinary,” Snyderman said, looking at a girl who looked like any other 9-year-old.

Although shy on camera, Cameron did share with Curry her goal in life.  “I want to be a ballerina when I grow up,” Cameron said.

Three years ago, that was an impossible dream. Today, it’s one that may yet come true.

Read more: http://today.msnbc.msn.com/id/36032653/ns/today-today_health/#ixzz0jIgYhuXT

FROM http://disabilitynewsarticles.com:

SAN DIEGO, CA, March 18, 2010 /24-7PressRelease/ — National Foundation for Autism Research (NFAR), a San Diego based non-profit founded by parents of a son with autism (Juan and Sharon Leon) celebrates the 6th annual Race for Autism on Saturday, March 27, 2010 in Balboa Park, San Diego.

The race serves as a “march to awareness” for April’s Autism Awareness Month and raises money for the development of innovative treatment programs, educational support & materials, research & services to provide a positive, immediate impact on San Diego children and families living with autism.

Every 20 minutes a child is diagnosed with autism. It’s more prevalent than childhood cancer, juvenile diabetes & down syndrome COMBINED.

- Funding for NFAR’s two annual grant programs –Pilot Project / Community Program Grants and San Diego Autism Teachers Grants– is provided entirely from the proceeds of the Race.
- Since 2005, NFAR has awarded more than 30 Pilot Project / Community Program grants, as well as 156 Autism Teachers grants for educational programs that improve the learning environment for children with autism.
- NFAR has already raised almost a half million dollars in grant funding. Last year, NFAR received a record number of grant applications and awarded nearly $100,000 in support to eight local organizations and 35 classrooms.

Registration: Online registration closes March 25 for the 5K Run/Walk and 1-Mile Family Fun Walk. Participants can also register on-site the day of the event. To make a difference without leaving the house, sign up to Race From Home and we’ll mail you an official Race t-shirt and bib!

The Event: At the Race, NFAR also hosts an informative resource fair, children’s activities, music, refreshments and raffles. Prizes (including Alaska Air and Southwest Airlines travel packages) will be awarded for the Race’s top fundraisers & largest teams

• Have you explored opportunities to work for the Federal government, but were overwhelmed by the application process?
• Do you want to work in an environment that embraces diversity and inclusion and the talent you offer?
• Are you interested in a career opportunity with benefits and the potential for career progression?
• Are you a Veteran with a 30% or more disability rating who wants to extend your service to your Nation?

If so, now is the time for you to begin your career of service. The Office of Personnel Management (OPM) and the U. S. Department of Labor’s Office of Disability Employment Policy (ODEP) are sponsoring a historic day-long Federal Hiring Event for People with Disabilities. Representatives from many agencies will be reviewing resumes prior to the event, and inviting prospective candidates for interviews.

HOW TO PARTICIPATE?

Review the Hiring Event information, as well as the Individuals with Disabilities page, or Veterans page on USAJOBS.gov. You must submit your resume to the following email address: Hiringevent@opm.gov no later than March 24, 2010. Documentation supporting your disability (e.g., proof of disability and job readiness certification letters) and/or veteran’s status (e.g., VA letter and DD-214) can be provided with your resume, or at the time you are interviewed. [Note: To ensure the hiring process moves quickly and to expedite the agency's ability to make tentative offers, you are strongly encouraged to submit your supporting documentation along with your resume.]

Disabled veterans with less than a 30% rating or with non-service connected disabilities are encouraged to submit their resumes, along with proof of disability and job readiness.

If you need assistance submitting your resume or have any questions regarding this Event, including the type of documentation required please forward your inquiry to the following email address: Hiringevent@opm.gov.

WHAT TO EXPECT NEXT?

You will receive notification that your resume has been received. Agencies will review your resume and any supporting documentation provided. You may be invited to attend the Hiring Event via email for an interview with one or more agencies and for one or more available positions. Applicants who are scheduled for interviews must bring the required documentation to the Hiring Event, if not previously provided.

Continue to check this site for updates

From www.worlddownsydromeday.org – Down Syndrome International (DSI) has officially earmarked 21 March as World Down Syndrome Day (WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. Commemoration of World Down Syndrome Day started on 21 March 2006, it has ” grown ” manifold globally.

The annual observance of WDSD aims to promote awareness and understanding of Down syndrome and related issues : and to mobilise support and recognition of the dignity, rights and well being of persons with Down syndrome.

DSi has decided not to designate specific themes , thus giving greater flexibility for individuals and organisations Worldwide to select a theme that would be relevant to their community. Most WDSD activities have had a tremendous impact , as it showcases the abilities, talents and accomplishments of persons with Down syndrome. Celebrating WDSD proactively has empowered persons with Down syndrome and their communities globally. Many have partnered and engaged with civil society & youth with positive outcomes.

The media has always been a powerful conduit in creating positive awareness, It is an excellent opportunity to use the internet , especially the ” Social Media “, such as Facebook, Blogs, and Twitter, creatively to enhance our efforts, especially to reach out to the “i Generation”.

Let’s remember to use resources with care, respect Mother Earth, “Reduce, Re-use and Recycle” where possible.

Wishing all of you a great Commemoration of World Down Syndrome Day! A heart warming Thank you to all you lovely persons with Down syndrome for your unconditional love, which we all cherish & respect!

Dr Balbir Singh PBM
Chairman, World Down Syndrome Day Committee

By JOHN BERMAN

 As Seen On ABC World News:  A boy’s first ride on a carousel. A 57-year-old woman’s first time on a swing. A no-holds-barred adventure in the water. These are simple joys that for so many people with special needs were out of reach, until a place called Morgan’s Wonderland came around.

 Morgan’s Wonderland in San Antonio, the first large theme park created for people with special needs, was created by Gordon Hartman, 46, a former San Antonio real estate developer who said his daughter Morgan was his inspiration.

“Morgan has really taught me that there’s more to life in many ways than what I saw before, being so busy as a business man,” Hartman said. Hartman’s 16-year-old daughter Morgan suffers from severe cognitive delay. A few years ago, Hartman sold his business and began spending more time with Morgan and her friends, he said.

One day, while he and Morgan were in a swimming pool, Hartman said he had a realization that helped put his life into perspective. “There were some other children at the other end of the pool, a couple of kids playing with a ball back and forth and you could tell Morgan wanted to play with them,” Hartman said. But because of her inability to communicate properly, Morgan and the kids were left on opposite sides of the pool. So Hartman decided to make sure there was a place where couldn’t, shouldn’t or can’t were not a part of the vocabulary.

He raised $30 million, including $1 million of his own, to build Morgan’s Wonderland, which is scheduled to officially open on April 10 but has already been open to some visitors.

Taking Special Care to Design a Park for Special Needs

“Morgan’s Wonderland is a park that has been designed with special needs individuals in mind, at the beginning of the process and throughout the entire process,” Hartman said.

The concept of inclusion goes far beyond the design of the park. Admission is free for those with disabilities, and only costs $5 for friends and family.

Some of the features of the park’s layout are easy to understand: big, wide ramps for wheelchairs and a sensory village to enjoy light, touch and sounds. But other features are not so obvious. The park has special computer bracelets that allow you to keep track of each other while in the park.
The size of the crowd is also controlled, because big numbers can be overwhelming for many of these kids.

Debbie West, the mother of 11-year-old Ashton West who has cerebral palsy and ditaxia, said the park is an opportunity she never thought her son would have.

“You see them struggle with so many different things, little things that no one could even imagine,” she said. “You know seeing here without that limitation, it is just, it’s overwhelming, it is amazing, it is fun. “I just admire anybody with disabilities who can just, they find their way, they make their way and do what they want to do, but they have to do it differently,” she said. “You are only disabled in an environment that makes you that way. And you are not here.”

It is a sentiment shared by Courtney Wyrtzen, who brought her daughter Blythe to the park. When Wyrtzen looks at her daughter’s face while in the park, she said she sees “pure joy.”

Hearing and seeing how happy the park makes people is the best reward for his hard work, Hartman said. “The best thanks is when these kids come up to me and hug me and say thank you and they don’t even have to say thank you, you can see it in their eyes,” he said.

And of course, there is the incredible added reward of finally having a place where his own child, Morgan, can play and feel like she belongs. “Morgan taught me that there’s more to life in many ways than what I saw before,” said Hartman. “The blessing that Morgan has brought is beyond anything that I ever could have imagined and could explain.”

AS READ ON EXCEPTIONAL PARENT WEBSITE – John Gray, a saddle maker, of Horseshoe Bend, Arkansas, has gone the extra mile to make sure that everyone that wants to ride a horse has a saddle to fit their needs. He stepped up to the plate when Nina, an avid horseback rider, was hurt in an accident and was left paraplegic, and no longer able to participate in her favorite sport of trail riding and showing horses. She needed something she could use to compete in shows without the use of someone to lead her horse or walk along beside her horse. There could be no entry unless the rider could ride independently. Since there was no category for this type of event she was instrumental in starting a class so other riders could compete and get a trophy on their own merit. Now Nina says, “Help me on my horse and I can take it from there.”

 John Gray told me, “Give Nina the reins and off she goes. She has always been a good rider and a handicap won’t slow her down. I’m happy I could help. She doesn’t look at her injury as life threatening but it is life changing.”

 John Gray is a unique saddle maker. He designs and crafts saddles for the physically challenged rider. He understands the needs of each rider.  He feels that because a person is physically challenged there is no need to give up a pleasurable sport.

 Elizabeth was a competition gymnast until she was hurt in an automobile accident. She was so depressed she was contemplating suicide until she found out about John Gray and was able to order a saddle for her impairment. In order to get the money to purchase the saddle she managed to get several country music personalities to sign a guitar, which then was auctioned off to raise the money.

 Devon was not able to ride even with help until he received a special needs saddle. His father told Mr. Gray, “You are amazing that you have the heart to help these kids and give them hope.”

 The “Make a Wish foundation” helped Noah, a young boy in Florida, achieve his hearts desire in being able to ride alone. “The smile on his face was worth it all” a spokesperson said. This was done with the aid of one of John Gray’s saddles. In the beginning John adapted standard saddles for challenged or impaired riders, using old fashioned ingenuity to customize for any disability.

 For more than 20 years John has made saddles for people with difficulties resulting from accidents, illness, and diseases. He uses his engineering skills to design what is needed on an individual basis.

 Mr. Gray says, “I consider it a privilege to watch people achieve their goals. I consider it an honor that I can help.”

 John followed in his father’s footsteps in the saddle making business but learned about therapeutic saddles by traditional trial and error.  In the beginning John adapted standard saddles for challenged or impaired riders, than found a tree maker willing to customize for any disability. Each saddletree is marked for the rider so that it can be tailored for the particular handicap. He is in contact with various agencies that help the disabled.

A pony is a childhood dream; a horse is an adult treasure. John and his wife Fran feel thrilled to help in any way they can make dreams come true and adults keep their treasure.

 John Gray constructs specifically for the impairment. He devised a saddle for a young man who had been an active rider but lost both legs in the Middle East. He still wanted to trail ride with his wife. And so the bucket seat was created. It is like an old fashioned side saddle in that it has a horn to balance with. Yarmony Creek Lodge in the beautiful Colorado Rocky Mountains outside of Vail, Colorado helps disabled veterans to ride again. Sgt. Tim Johannsen said, “I came to watch my wife ride and found I could accompany her. Thank you Mr. Gray.”

 Mr. Gray fashioned a saddle with a seat belt along with head and chest restraints for a rider that wanted to ride in the Mardi Gras Parade.

 Toby, a young man in New Mexico has ordered a special saddle so he can go on a trail ride up El Capitan Mountain with a group. El Capitan is a challenge for anyone and this young man is willing to accept that challenge.

 Bobby was born with a disability and felt left out because he couldn’t ride with his sisters. Now with John’s help he can trail ride with the family.

 The Hamilton Ohio Riding Club has a special disabled riders program so more people can enjoy trail riding. Fieldstone Farm Therapeutic in Chagrin Falls, Ohio riding center also provides health-giving equine programs.

 Each story is different and they all pull at your heart strings. These people have been through life altering experiences but not life ending and with determination they can still do the things they love.

 With the help of John’s skills as a saddle maker more people can reap the healthful benefits of pleasure riding whether it is trail riding or in the show ring. There is no age limit on the love of horseback riding.

 There is an old Indian saying: “ The outside of a horse is good for the inside of man.” That must mean that the Indians also realized the benefits of horseback riding.

This saying is very true because there is a great psychological benefit for a person to be able to ride without a lead rope held by a side walker. Riding is also good physical exercise. It gets a person out in the sunshine and takes him to a place where he might never go otherwise. 

 John Gray has taken the old Indian saying a step further and makes saddles for the physically challenged so that anyone that wants to can reap the benefits from horseback riding. He understands that because you have a handicap is no reason to stop doing something you love. For a disabled person to be able to handle an animal as big as a horse gives a person a real feeling of accomplishment. Therefore the benefits are two fold, the physical well being as well as the mental health well being.

 john Gray is always available for discussion to try to help solve your riding problem. His wife Fran is an added asset to the business as she is very personable and extremely knowledgeable and helpful. As parents they both take a lively interest in young people.

John Gray not only makes new saddles but he will repair a familiar old one. He understands that a saddle is a tool that must be kept in good condition. He still uses the age-old tools of his trade. He will help with advice when he can. He is able to fit the saddle to the rider along with the horse.

 He also makes saddles that are awarded for youth contests along with other saddles, bridles, chaps, saddle bags, canteens and many additional leather items for the trail rider, pleasure rider, competition rider or cowboy.

 It is an unfortunate fact of life that there are people that do remarkable deeds and are never recognized for the things they do. John Gray is one of those people.    

 Angels don’t always have shiny silver wings, sometime they come with faded jeans and cowboy boots.

With the advent of the World Wide Web John Gray is as close as your computer. For more information go to: www.grayscustomsaddlery.com. Gray’s Saddlery has sent saddles to several states including Alaska and also Canada.

FROM EXCEPTIONAL PARENT WEBSITE – Nicole Boice saw first-hand the anguish her friend Kelly went through after giving birth to a son with a rare genetic disorder. Born with involuntary eye movements, extra digits on his hands and feet, a hooked arm and clubfoot, clenched fists, low muscle tone and contractures in his fingers, the child couldn’t breastfeed, digest food or cough up phlegm, and he suffered several bouts of bronchitis and pneumonia. After two and a half years, doctors finally diagnosed the baby with Joubert syndrome, a condition also characterized by an underdeveloped or missing portion of the brain that controls balance and coordination. Boice was so moved by Kelly’s feelings of helplessness, isolation and frustration that in September 2008, she launched the Children’s Rare Disease Network (CRDN) to boost public awareness and connect the millions of impacted families and caregivers.

 Boice knew that, by working together, the families of children affected by Angelman syndrome, Fragile X and other disorders could do more than they could alone. By definition, a rare disease impacts fewer than 200,000 people, which not only makes it difficult to diagnose and treat, but can also create a financial hardship for families seeking solutions. Collectively, however, more than 25 million people in the U.S. are born with 6,000 identified rare diseases. And they all need the same thing: a doctor who understands their child’s illness, the ability to afford medical care, information about scientific developments, and resources to help them cope with physical and social issues.

 “Rare disease needs a voice, a champion that will tell the world that we can no longer look past these families and their children, our friends, relatives and neighbors and ignore their needs,” Boice wrote on the California-based organization’s website. “There has been little attention paid towards rare diseases as a whole because the families affected by them are focused on their individual issues. As a result the efforts today are segmented. We intend to change that.”

 To accomplish this, CRDN serves as an online home to link families, organizations, physicians and researchers. Blogs, podcasts and social networking venues help parents find each other, access the information they need and share common problems. They can also post videos, success stories and photos; learn how to advocate for their children; and better understand specific diseases through comprehensive databases. An online SOLVE Toolkit shows parents what steps to take to reach a diagnosis.

 The feedback from participants has been very promising. ”There are millions of children with rare diseases who have absolutely nowhere to turn for information,” wrote the mother of a child with Williams syndrome. “The Children’s Rare Disease Network is a magnet and a long-awaited home for these kids and their families. We don’t have to feel so alone. CRDN is on our side.”

 “We know this is a winning model,” Boice says. “We have seen this work effectively around such diseases as AIDS and breast cancer. Greater awareness leads to greater understanding. With greater understanding comes greater funding for research. And that eventually leads to new therapies, improved lives and hopefully cures. It is really that simple.”

 Already, CRDN has won a grant from the Life Technologies Foundation for a three-part PBS series focused on rare diseases. Plans are underway to raise research funds through the sale of special art pieces auctioned at an annual gala event. On February 28—Global Rare Disease Day—the organization will team up with the Global Genes Project to help raise awareness of this issue. Thanks to an advisory board made up of children, CRDN will also partner with DonateGames.org to generate funds for rare disease charities.

 The six-member “Kids Helping Kids” board has, in fact, become a vital part of CRDN. The mother of two healthy children, Boice felt it was important that they learn to serve, give back and help make a difference. The board president is a sixth-grader with diabetes.

 In the future, Boice hopes to see “a robust community, sharing information, supporting one another regardless of disease.” She hopes to educate the general public “that rare disease is not so rare,” she says. “Everyone knows someone affected. With the total numbers affected being so large, this community deserves more attention that will drive more support and funding.”

 For more information about the Children’s Rare Disease Network, see www.crdnetwork.org.