Tag Archives: Special Needs Families

Morgan’s Wonderland

Summer brings to mind day dreams of sitting by the beach, coconut drink in hand, and the sun setting in front of you. But like any parent with children can imagine, this sadly remains a day dream most of the time. The kids are finally out of school, and when it comes time to take a vacation you know you’ll need to find the right spot. When it comes to accommodating the needs of your children if they have special needs, it’s even more important to make sure the vacation spot is able to make sure a vacation actually feels like a vacation.

If summer has become a boring repeat of hitting the same spots, it might be time to try out a new place.

Feeling bold and brave? If you haven’t visited Morgan’s Wonderland since it’s opening in 2010 in San Antonio, Texas, now is your chance. A park that was conceptualized as a special place for children and adults with cognitive and physical challenges, Morgan’s Wonderland strives to live up to the people it was inspired by. This place is one of the world’s first ultra-accessible theme parks, and has involved since into a 25-acre park that includes a friendly environment for people with special needs, their families, friends and caregivers. Gordon Hartman, inspired by his daughter Morgan, sought to create an environment that was both safe and relaxing. He wanted to create opportunities for his daughter and other children with special needs could connect. While most theme parks make it easy for children to interact and have fun-few are easily accessible if a child has special needs. So what exactly makes it different from the typical trip to Disneyland or Disney World?

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Couple Builds House Designed Around Children’s Special Needs

Couple builds house designed around children’s special needs – Columbia Daily Tribune | Columbia Missouri: Pulse.

The Cibula family has spent ten years worth of planning and building in order to create a new home designed to make the lives of their children easier. Their two sons, Joshua and David, will now be able to grow up in a home that helps give them some sense of independence. Their eldest, Joshua, was born with cerebral palsy, as well as intellectual disabilities and other physical issues that limited his mobility. Following the birth of their second son, David, who was also born disabled, the couple realized they needed a new home. A special kind of home.

What Jennifer and Andy Cibula didn’t want was the kind of home that looked like they were raising their children in an institution. Finally, after going through many architects who couldn’t quite grasp their dream, the couple ofund Bob Wilkoff of Archaeon Architects. Together they created a one of a kind home that will adapt to the children’s needs as they grow older.

 

Book #20 in our 30 Days-30 Books

Why do kids do act the way they do when they have sensory dysfunction?

Recommended by both parents and teachers, The Out-of-Sync Child clearly lays out the senses, their function, and examples that show what normal SI and sensory dysfunction actually look like. Carol Stock Kranowitz explains and gives examples as to why some kids many seem aggressive, or why some might act out in class, and anyone who is around individuals with disabilities will benefit from the knowledge found within this pages.

An indispensable guide, The Out-of-Sync Child partners well with The Out of Sync Child has Fun, with each presenting interesting case studies and activities for any child with sensory integration issues.

Book #11 in our 30 Days-30 Books

Looking for some inspiration or maybe just struggling? Filled with commonsense advice, and a seemingly endless guide, you might just find just what you need in our 11th book, on our list of 30  days-30 books.

Ellen Notbohm, who also wrote Ten Things Every Child With Autism Wishes You Knew, teams up with Veronica Zysk to take the words “No, I can’t” out of your vocabulary. They have 1001 great ideas to help you find a new way to help teach and raise children with Autism or Asperger’s, and to help change that no, to “Yes, I can”. This book is a treasure trove of ideas waiting to be used, so why not try some out? You won’t be running out of ideas any time soon.

DS-Connect™: The Down Syndrome Registry

Image Courtesy of National Institutes of Health
Image Courtesy of National Institutes of Health

A national registry has been launched in September 2013 to create an online community for people with Down syndrome, their families, and doctors and scientists who are dedicated to improving their health and lives. The repository is known as DS-Connect.

The National Institutes of Health had this to say on their website about the back-story of how DS-Connect came to be:

“After several years of working with scientific and family communities to achieve the various goals of the NIH Research Plan on Down Syndrome that was created in 2007, the NIH formed the Down Syndrome Consortium to foster communication and idea-sharing among NIH, individuals with Down syndrome and their families, national organizations interested in Down syndrome, and pediatric and other groups. One of its first activities was to create a Down syndrome registry, now called DS-Connect™: The NIH Down Syndrome Consortium Registry.”

Photo Courtesy of National Institutes of Health
Photo Courtesy of National Institutes of Health

For those who register and give consent, they will have the opportunity to be contacted by researchers to participate in research studies. Families can connect with each other to  share stories and get support. The registry will provide users with general information about Down syndrome and they can opt to participate in surveys where statistical data is then shared.  Profiles are customizable and can also be used to set reminders and appointments. DS-Connect is a confidential database and complies with regulations and laws governing privacy and health data.

If you have questions about the registry, contact NIH at: DSConnect@nih.gov.

Grant Sources for Special Needs Children

Image Source: Google Images
Image Source: Google Images

Becoming a parent is the biggest responsibility a person can take on. It is a natural part of the parenting process to plan for and envision the future for their kids even before they are born. Sometimes life doesn’t go as imagined. Parents are given the news that their child has a special need. With this, come feelings of isolation and being alone and not knowing where to begin searching for support and assistance.

Diagnostic testing, specialty care, prescription drugs, therapies, assistive technology and accommodations, medical equipment, and other health-related services cause families financial hardship. More often than not, at least one parent has to cut back on working hours or quit their job to provide care to their child. There are many grant programs across the country that is available to assist families with alleviating the financial burden.

The National Dissemination Center for Children with Disabilities is an online resource to help you connect with the disability agencies and organizations in your state.

Kaufman Children’s Center compiled a list of grant sources to assist parents in securing funding for various therapies, medications, and equipment. The list includes organizations such as Easter Seals, Astra Zeneca, Children’s Charity Fund, and Believe in Tomorrow.

For a full list of available grants and programs, please click here to open the PDF.

All children deserve the chance to reach their full potential. These resources are designed to help kids with special needs and their families enhance their quality of life.

 

AMC Brings Sensory Friendly Films to Families Affected by Autism

Photo courtesy of AMC Theatres
Photo courtesy of AMC Theatres

AMC Theatres and the Autism Society have teamed up to bring families affected by autism and other disabilities a special opportunity to enjoy films in a safe environment on a monthly basis with the “Sensory Friendly Films” program. Movie titles include Epic 2-D, Monsters University, and Despicable Me 2.

The auditoriums dedicated to the program have its lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing.  Families will be able to bring in their own safe or special dietary snacks, and no previews or advertisements will be shown before the movie.

The idea for the program began with a request from a parent with an autistic child for a special screening at AMC Columbia Mall 14 in Columbia, MD.  More than 300 children and parents attended the first screening.

Photo courtesy of AMC Theatres
Photo courtesy of AMC Theatres

AMC Theatres now offers the program at many locations nationwide. These include metropolitan areas such as Philadelphia, New York, Dallas, Los Angeles, and many more. To see if there are such movie houses in your area, check AMC’s website for a complete list of nationwide theatres at:

http://www.amctheatres.com/programs/sensory-friendly-films

ReelAbilities|Philadelphia Disabilities Film Festival April 21-28, 2013

Image courtesy of ReelAbilities.org
Image courtesy of ReelAbilities.org

Jewish Family and Children’s Services of Greater Philadelphia presents for the second year, ReelAbilities: Disabilities Film Festival in Philadelphia and surrounding areas from April 21-28, 2013. This event is modeled after the New York Festival- the largest festival of its kind- which promotes awareness and an understanding of the lives of people with disabilities. Revenue generated through the festival will benefit The Center for Special Needs of JFCS and a community website, www.SpecialNeedsPhilly.org. The Center for Special Needs supports individuals and families by providing programs and services of needed care and SpecialNeedsPhilly.org provides a free online database giving access to agencies and professionals that serve the Greater Philadelphia special needs community.

The Philadelphia Festival showcases films by and about people with disabilities. Storylines range from a father’s love of his autistic son; a man with cerebral palsy whose dream is to climb El Capitan Mountain; three men with disabilities take a road trip and others. Each film is followed by engaging discussions and programs to explore the topics in depth. Venues are wheelchair accessible and all films are captioned or subtitled.

There are six films being screened from April 21-28, 2013.

Films yet to be screened include the following:

 

Tuesday, April 23

7–9PM

HIWAY THEATRE

212 York Road

Jenkintown, PA, 19046

GETTING UP

A graffiti artist who was stricken with Lou Gehrig’s disease, which left him paralyzed, discovers technology that reads the movement of his eyes and enables him to tap into his creative side again.

 

Wednesday, April 24

1:30-3:30pm, INGLIS HOUSE, FOUNDERS HALL

2600 Belmont Avenue

Philadelphia, PA, 19131

GETTING UP- encore presentation

7-9PM, BRYN MAWR FILM INSTITUTE

824 West Lancaster Avenue

Bryn Mawr, PA, 19010

COME AS YOU ARE

Three men with disabilities take a road trip to free themselves from their isolation in hopes to explore the affection of women. They convince their families to allow them to go on a trip to Spain.

 

Thursday, April 25

7:30-9:30pm

AMBLER THEATER

108 E. Butler Pike

Ambler, PA, 19002

OC87

A documentary of a man afflicted by mental illness that sidetracked his dream of a film-making career.

 

Sunday, April 28

4-6:30pm

OLD YORK ROAD TEMPLE-BETH AM

971 Old York Rd.

Abington, PA, 19001

CLOSING EVENTS

Opening the Gates of Torah: Inclusion Conference

MABUL (THE FLOOD)

A drama about family members with secrets that begin to surface after the eldest son, who has autism, returns after being institutionalized.

 

For festival schedule and tickets, visit www.jfcsphilly.org/reelabilities

Bring Challenge Air Fly Days to a City near You

Challenge AirRick Amber was a fighter pilot and training officer in the US Navy during the Vietnam War. In 1971 at age 26, Rick became a paraplegic when his jet crashed during an attempt to land. He came back to his home state of Texas and earned several degrees, taught math and science, and had many sports interests and accomplishments including winning the USTA (U.S. Open) National Wheelchair Tennis Championship. During his time as a teacher, Rick was asked to design a curriculum for an aviation class. He realized how much he missed flying and began teaching ground school at night to earn flying hours he needed to be certified with the FAA. It didn’t take long before Rick earned his license as both a Commercial Pilot and Certified Flight Instructor.

One day Rick invited a small group of physically challenged kids to go flying, and after witnessing their incredible attitude change about their disability, the concept of Challenge Air was established. In 1993, Rick bought a Cessna 177B Cardinal airplane which he modified in order to control the brake and rudder pedals. He established Challenge Air as a non-profit organization and took to the skies nationwide, flying special needs children at community events. Rick passed away with cancer in May of 1997 but Challenge Air continues his mission; to build self-esteem and confidence of children and youth (ages 21 and under) with special needs through the experience of flight.

Challenge Air is made up of a network of close to 3,500 volunteers nationwide who come together to create “Fly Day”. Fly Day is a full day event when volunteers come together at a sponsoring airport to create memories of a lifetime for children with special needs and their families. What is Fly Day like? It’s filled with activities: face painting, lunch, and ground school where “co-pilots” learn about flight, then participants take flight for approximately 30 minutes. Co-pilots can fly the plane if they are able to hold onto the controls. Best of all, this event is of no charge to participants.

Challenge Air Group

Fly Day is coming to the following cities:

  • McKinney Fly Day, Cutter Aviation, Saturday, April 20th, 2013
  • Everett, WA Fly Day, Paine Field, Saturday, July 27th, 2013
  • Dallas, TX Fly Day, Business Jet Center, Love Field, Saturday, November 3rd, 2013

 

To find out if a Fly Day event is coming to a city near you, check the listings on Challenge Air’s website.

Even though Challenge Air is based out of Dallas, TX, a Fly Day event can be held anywhere across the country. They have a set of requirements that needs to be met in order to host an event and an application process. For more information on Challenge Air and its Fly Day program, visit their site at www.challengeair.com.

Image Source: Challenge Air

What is a Weighted Blanket?

Weighted blankets are often used to provide an additional sensory input for a special needs child and tends to be used as a soothing tool for sleep.  They are also useful for teens and adults prone to stress.  The theory behind the product is that the blanket provokes the release of neurotransmitters such as serotonin or dopamine much the way a hug would.  They have shown benefits to people experiencing sensory integration disorder, anxiety, Asperger’s Syndrome and other similar conditions.  The concept is broad enough that even those people who have no special needs can benefit from improved sleep quality or a decrease in stress.

Weights tend to scale with a person’s weight and height; there are products for infants at 20lbs (a 3lb blanket) to a 40 lb Queen weighted blanket for an individual of 200lbs or more.  Manufacturers recommend that a blanket be measured by 10% of the person’s body weight plus 1lb – 5lbs.

Naturally, weighted blankets tend to run higher in price than standard quilts or bed covers because of the fill.  Look for blankets made with polypropylene filler (small plastic beads or pellets) that are non-hypo-allergenic with evenly distributed weight.  Many Occupational Therapists are familiar with such products and it would do well to consult with one before purchasing.

There are a surprising number of manufacturers that sell weighted blankets and other similar sensory products including the following:

small weighted blanket
Photo provided by SensaCalm

SensaCalm:
www.sensacalm.com

CozyCalm:
www.cozycalm.com

DreamCatcher Originals:
www.weightedblanket.net

Sensory Goods:
www.sensorygoods.com

Mosaic Weighted Blankets:
www.mosaicweightedblankets.com