Tag Archives: abilities

Rett Syndrome Awareness

What is Rett Syndrome?
Rett syndrome is a postnatal neurological disorder seen almost always in girls, but can be rarely seen in boys. It is not a degenerative disorder.

Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene. Most of these mutations are found in eight different “hot spots.”

Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000 to 23,000 female births.

Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

Rett syndrome symptoms appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve.

Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of her mutation and X-inactivation. Therefore, two girls of the same age with the same mutation can appear quite different.

Testing and Diagnosis
Rett syndrome is most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. In the past, making the correct diagnosis called not only for a long list of diagnostic tests and procedures to rule out other disorders, but it also took from months to years waiting to confirm the diagnosis as new symptoms appeared over time. Today, we have a simple blood test to confirm the diagnosis. However, since we know that the MECP2 mutation is also seen in other disorders, the presence of the MECP2 mutation in itself is not enough for the diagnosis of Rett syndrome. Diagnosis requires either the presence of the mutation (a molecular diagnosis) or fulfillment of the diagnostic criteria (a clinical diagnosis, based on signs and symptoms that you can observe) or both. Below is a list of labs to share with your ordering physician that can do the MECP2 sequencing + deletion analysis, and the list of diagnostic criteria.

Recreation Opportunities For People With Disabilities

All Out Adventures
All Out Adventures provides outdoor accessible recreational opportunities throughout Massachusetts for people of all abilities, their families and friends. Summer programs include accessible kayaking, canoeing, hiking and cycling. Winter programs include snowshoeing, x-country skiing & sit-skiing, ice skating, sled skating and snowmobile rides.

Accessible Swimming Pools
Accessible Swimming Pools outdoor swimming pool lifts are available at all of the State Parks and Recreation Department’s 20 swimming pools. The pools are free. Contact pool directly for information about other site factors affecting accessibility.

AccesSport America
AccesSport America is a national, non-profit organization dedicated to the discovery of higher function, fitness, and fun for children and adults with disabilities through high-challenge sports, which include kayaking, windsurfing and water skiing.

Local Arcs provide a variety of social and recreational activities for children and teens with developmental disabilities.

Bostnet / Guide to Boston’s Before & After School Programs
Build the Out-of-School Time Network (BOSTnet) has built a network of out-of-school time (OST) resources and opportunities for all children and youth, including those from low-income families and youth with disabilities.

Broadmoor Wildlife Sanctuary
Broadmoor Wildlife Sanctuary offers nine miles of walking trails guiding through a variety of field, woodland, and wetland habitats. A quarter-mile, handicap accessible trail and boardwalk along the bank of Indian Brook. Universally accessible facilities: Nature Center, Restrooms, All Persons Trail.

BSC (Boston Sports Club) Adaptive Swim Program
On Monday and Wednesday evening, between 6:30pm and 7:30pm, BSC Waltham (840 Winter Street) offers an adaptive swim program for children, youth, adolescents and adults with disabilities in our 93 degree therapy pool. Volunteers between the ages of 16-20 from neighboring schools and organizations offer their time to pair with an individual seeking to increase range of motion, flexibility, and strength but most importantly to socialize with other individuals and families. Our adaptive swim program is offered during the school year (September thru May) in 8-week sessions at a cost of $200 per session. Our 120,000 square foot, state of the art facility can accommodate families in our men’s, women’s or family changing rooms, fully equipped with showers, lockers, restrooms, towels, and other amenities.

  • 781-522-2054
  • 781-522-2512

CAPEable Adventures
offers adaptive sports & therapeutic recreation activities to local residents and vacationers to the Cape.

Cape Cod Challenger Club

Cape Cod Challenger Club offers noncompetitive sports and recreation opportunities for children with disabilities.

Challenger Sport League
Some towns have challenger teams. The goal of the challenger team is to play with no pressure and to educate typical peers and their parents about sportsmanship. The program is available for boys and girls, ages 3 – 19 with all types of physical and developmental disabilities. Call your local town recreation department to find out if they offer challenger sports.

Children’s Physical Developmental Clinic at Bridgewater State University
BSC students from all majors have opportunities to volunteer as clinicians and work with children and youth with disabilities, ages 18 months to 18 years. Clinic dates are to the right on website’s homepage.

Choral / Community Voices
Open to individuals 16 years of age and older. Must be willing to be committed for 12 weeks. Provides a choral opportunity for adults and young adults with developmental delays. Singing in an ensemble, individuals will have the opportunity to develop and refine vocal technique, listening skills, and team-work. Repertoire will include songs from the masters, traditional and folk favorites, as well as pop and Broadway tunes. Performances are scheduled in December and June. Fee $156/fall, $243/spring.

Compelling Fitness
Compelling Fitness in Hanover provides group and / or individual physical fitness training for children and adults with special needs.

Fitness Program / Special Needs Training
Call your local YMCA.

Horseback Riding – PATH International Centers in Massachusetts
Professional Association of Therapeutic Horsemanship, PATH International was formally known as North American Riding for the Handicapped Association (NARHA). Though PATH Intl. began with a focus on horseback riding as a form of physical and mental therapy, the organization and its dedicated members have since developed a multitude of different equine-related activities for therapeutic purposes, collectively known as equine-assisted activities and therapies (or EAAT).

JF&CS Sunday Respite Program
JF&CS Sunday Respite Program for Children with Developmental Disabilities including those on the Autism Spectrum. Program includes swimming, music and art therapy. The program meets at the Striar JCC in Stoughton from 1:00 -4:00. This program is run by JF&CS with additional funding from Eastern Bank.

Kids In Disability Sports (K.I.D.S)

  • Kids In Disability Sports (K.I.D.S) Thirteen specialized athletic programs are available. K.I.D.S. hosts dances, sports banquets, social activities and recreational events throughout the year. Serves individuals and families throughout Eastern Massachusetts and Southern New Hampshire. Participants range in age 5-40 and have varying disabilities. http://www.kidsinc.us/
  • info@kidsinc.us
  • 1-866-712-7799

LIAM Nation Athletics (formerly known as FOSEK, Friends of Special Education Kidz)
sports leagues for special needs children in Tewksbury and surrounding communities in Merrimack Valley. Accomodates athletes of all abilities. Bombers Baseball, Striker Soccer, Little Reds Basketball.

Mass Dept of Conservation & Recreational Universal Access Program
Mass Dept of Conservation & Recreational Universal Access Program provides outdoor recreation opportunities in Massachusetts State Parks for visitors of all abilities. Accessibility to Massachusetts State Parks is achieved through site improvements, specialized adaptive recreation equipment, and accessible recreation programs.

Massachusetts Hospital School Wheelchair Recreation & Sports Program
Wheelchair sports and recreation program for children ages 9 to 21. Horseback riding, swimming and , Wheelchair Athletes Program.

Miracle League of Massachusetts
Miracle League of Massachusetts provides baseball for special needs children. Free to participate (includes uniform). Located at Blanchard Memorial Elementary School Ball Field in Boxborough.

New England Wheelchair Athletic Association (NEWAA)
Volunteer organization that helps individuals with physcial disabilities participate in recreational
and sports activities. The NEWAA provides opportunities for athletic competition by sponsoring
regional and local meets.

Partners for Youth With Disabilities Provides mentoring programs that assist young people reach their full potential. Partners provides several types of mentoring programs including one-to-one, group mentoring and e-mentoring.

Piers Park Sailing
Piers Park Sailing provides programs for disabled youth and adults aboard 23-foot sonar sailboats on a no charge basis. Serves those with amputations, paralysis, cerebral palsy, muscular dystrophy, autism, hearing impaired, sight impaired and other disabilities. Successfully integrates youth with disabilities into summer youth sailing programs. Scholarships are available for all Adaptive sailing programs. “Yes You Can Sail” program Friday eves for $35.

  • (617) 561-6677

Senseability Gym
Senseability Gym serves special needs children in greater Hopedale area. Our mission is to provide a parent-led sensory gym, giving children with special needs a safe, fun, indoor area where they can play and accommodate their sensory needs.

Spaulding Adaptive Sports
Spaulding Adaptive Sports offers adaptive sports and recreation activities in Boston, Cape Cod and the North Shore. Includes wheelchair tennis, hand cycling, adaptive rowing, waterskiing or windsurfing.

Special Olympics Massachusetts (SOMA)
Special Olympics Massachusetts (SOMA) provides year round sports training and athletic competition for all persons with intellectual disabilities. Minimum age requirement is eight years of age. There is no maximum age requirement. SOMA summer games offers aquatics, athletics, gymnastics, sailing, tennis and volleyball. Go to above link to search SOMA region that covers your town.

Sudbury Adaptive Sports & Recreation
Programs for all ages and abilities.

Super Soccer Stars Shine
Our unique program uses soccer as a vehicle to teach life skills to individuals with developmental disabilities. Our innovative curriculum, designed by licensed educators and therapists, promotes the complete growth and development of each player. Our low player-to-coach ratios encourage and empower players to increase social potential with teammates, build self-awareness and confidence and advance gross and fine motor skills — all while each individual improves at his or her own pace! Located at 1 Thompson Square, Suite 301 in Charlestown. Call for information. Low pricing options and scholarship applications available.

Therapy and the Performing Arts – Cape Cod
Provides children and young adults with physical and intellectual disabilities the opportunity to enjoy various arts and recreational programs in addition to receiving therapeutic benefits from their participation. Children gain new and rewarding experiences from which they develop self-confidence, increase motor function, and have fun. Offers age appropriate programming on Cape Cod for children and young adults diagnosed with down syndrome, chromosomal abnormalies, cerebral palsy, genetic disorders and othe cognitive and physical disabilities. Classes are taught by certified instructors/ therapists with expertise in various disciplines. Programs are offered on a sliding scale fee based on the family’s ability to pay.

TILL Autism Support Center

TILL Autism Support Center has social programs for those with autism spectrum disorders. Programs include exciting Family Fun Days that include apple picking, rock climing, sledding, in-door gym time, zoo trips, holiday parties and much more.

Town Recreation Departments
Most programs are open to participants from neighboring towns. Call area town recreation department to find out if it has special programming for children with disabilities.

Wheelchair Sports & Recreation Assn.
Wheelchair Sports & Recreation Assn. offers information about beach wheelchairs, biking, boating and more!

TopSoccer Program / Outreach Program for Soccer
is a community-based training and team placement program for young athletes with a mental or physical disability. For additional information or would like to start a TOPSoccer Program in your community contact:

YMCAs are accessible and offer a range of classes. Call your local YMCA to find out what programs are available.

The Lowell YMCA “Adaptive Aquatics Program” accommodates children with mild to moderate neurological, physical, or social challenges.

  • (978) 454-7825.

Oak Square YMCA of Greater Boston at 615 Washington St, Brighton has a new adaptive fitness room & offers Adapted Adult Speciality Fitness Partnership Program on Wednesday and Saturday 11AM – 12:30PM on the Fitness Floor.

Hopkinton YMCA offers seasonal specialized programs. “Aim High” archery program and “Rock On!” is an outdoor ropes course and rock climbing for individuals with autism spectrum disorders or related social communication disorders.

  • 45 East Street in Hopkinton.

WaterFire Access Program
A water-taxi program at Dyer Street Dock in Providence Rhode Island which provides an unforgettable experience of the art work for children and adults with disabilities to assure that they can join in the most popular arts event in the state and share the experience with their families and friends. Reservations are required. Each Water Fire Access passenger can bring along one companion.

Waypoint Adventures
Adventures for people of all ages and abilities

Whole Children offers movement, art, recreation and music programs for infants, children and teens of all abilities. Located in Hadley.

Basic Hand Control Systems

The four Basic Hand Control System designs are:

  • Push/pull: Push the control forward to brake; and pull back and hold to accelerate. Not the most popular control as it must be pulled toward you and held to maintain speed, requiring more arm strength.
  • Push/twist: Like on a motorcycle, it requires twisting the handle for the gas and pushing the hand control lever for the brakes. Unlike the push/pull in that the driver doesn’t have to pull the lever back and hold to accelerate.
  • Push/right angle: (Most popular) Drivers push forward for the brakes. Push down toward your thigh with a slight pull to your torso for acceleration. Acceleration with the push/right is less fatiguing than push/pull as the weight of your hand holds the desired speed.
  • Push/rock: Not necessary to keep a grip on the control. The driver rocks his or her hand on the top of the handle, rocking back to accelerate and forward to apply the brakes, like a slot machine.

All four can be mounted on the right or left side depending on your preference or abilities.

VA Adaptive Sports Program

Mission Redefined
Your courage, your determination and your drive all led you to serve America proudly. Those same characteristics will also lead to satisfaction and success in adaptive sports. Disabled Veterans of all ages and abilities report better health, new friendships and a better quality of life when participating in adaptive sports. Disabled Veterans who are physically active simply have more fun! To get started, take some time to review the many sports opportunities available to you by reaching out to your VA clinical team.

Get started by learning how disabled Veterans can benefit from adaptive sports. If you have questions, contact them at vacoadaptiveSP@va.gov.

2015 Schedule of National Events
2014 Annual Report to Congress

The Grant Program
The Grants for Adaptive Sports Programs for disabled Veterans and Members of the Armed Forces (ASG Program) provides grant funding to organizations to increase and expand the quantity and quality of adaptive sport activities disabled Veterans and members of the Armed Forces have to participate in physical activity within their home communities, as well as more advanced Paralympic and adaptive sport programs at the regional and national levels. Learn more»

Training Allowance
Interested in becoming a Paralympic athlete?
The VA National Veterans Sports Programs & Special Events Office provides a monthly assistance allowance for disabled Veterans as authorized by 38 U.S.C. 322(d) and Section 703 of the Veterans’ Benefits Improvement Act of 2008 for qualifying athletes training in Paralympic sports.

Through the program, VA will pay a monthly allowance to a Veteran with either a service-connected or non-service-connected disability if the Veteran meets the minimum military standards or higher (e.g., Emerging, Talent Pool, National Team) in his or her respective sport at a recognized competition. Besides making the military standard, an athlete must also be nationally or internationally classified by his or her respective sport federation as eligible for Paralympic competition within six or 12 months of a qualifying performance.

Athletes must also have established training and competition plans and are responsible for turning in monthly and quarterly reports in order to continue receiving the monthly assistance allowance. The allowance rate for an athlete approved for monetary assistance is the same as the 38 U.S.C. Chapter 31 Vocational Rehabilitation & Employment (VR&E) rate, which in FY 2013 ranged from $585.11 up to $1,104.64 per month, depending on the number of dependents.

Download the VA Training Allowance Standards

Download the VA Training Allowance Briefing

To learn more about the specific sport standards or the monthly assistance allowance, email them at vacoadaptiveSP@va.gov.

Communication Awareness

The first step to respectfully communicate with a person with a disAbility is simply by making an effort. There’s no absolute formula for compassion, but putting forth the effort — any effort, really — goes miles.

Recognize there are trigger words that often carry a deep connotation of disrespect and disregard for a magnitude of communities. Titles like “cripple,” “retard,” “slow” and “vegetable” carry vulgar consequence, but conversations surrounding people who have disAbilities deserve a deeper level of understanding than simply avoiding a handful of hurtful words.

These people are humans, not disAbilities.

Build, Don’t Box
Common tongue often highlights a person’s disAbilities like the elephant in the room. A more active approach is to acknowledge and applaud one’s abilities. Focus on the person, not the disAbility. And, just like any of us, we each have our challenges but we don’t go around telling people we “suffer from” one thing or the other. This language would steal any sort of confidence that we might overcome our daily hurdles.

Furthermore, it’s crucial to recognize individuals. For example: Jane is Jane/John is John. S/He is not one of “the handicapped,” “the paraplegics” or any other all-inclusive term. S/He is one, able individual who has paraplegia. The condition does not define her/him, and though s/he may be proud and affiliated with communities who engage paraplegia, it’s best to allow s/he the opportunity to define those relations.

Never Stop Learning
Simply put: Don’t be afraid to ask. If you’re concerned you don’t know how to interact with people with disAbilities, voicing your innocent naivety may be the wisest approach. Instead of shying away from the conversation and further alienating that person, seek out a respectful opportunity to ask about his or her story.