Sunday, September 22, 2019

People with Disabilities Got Talent

A couple of people with disabilities performed very well during this past season of America's Got Talent. Kodi Lee, a 23-year-old singer and pianist from Lake Elsinore, California, was declared the AGT winner with his mother Tina by his side last Wednesday. Lee, who has autism and is blind due to optic nerve hypoplasia, underwent surgery when he was just five days old. For his final performance on AGT, he sang and played "You Are the Reason" on the piano during a duet with singer Leona Lewis. The cash prize Lee will receive is either $1,000,000 in 40 annual payments or one lump sum of about $300,000. He will also have his own show at the Paris Las Vegas Hotel & Casino for three days in November. For more information on Lee, go to https://www.kodileerocks.com/.

Also of note is Ryan Niemiller, a 36-year-old comedian with short arms and missing fingers in his hands because of ectrodactyly (please refer to my blog post dated August 28, 2018, for a spotlight on Niemiller). His third-place finish on AGT will advance his career, too.

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Ryan Niemiller (left) and Kodi Lee
(image via themighty.com)

Monday, September 16, 2019

Spotlight: Amy Jandrisevits

Amy Jandrisevits of New Berlin, Wisconsin, makes dolls that resemble their recipients, children with physical disabilities. Four years ago, Jandrisevits (a doll collector herself) made a doll with a missing leg for a girl whose leg was amputated. Since then, she has made 400 dolls with a sewing machine in her dining room; these dolls were sent to kids all over the world. Jandrisevits, a former pediatric oncology social worker and now a stay-at-home mother, founded a nonprofit called A Doll Like Me earlier this year. She collects donations to cover materials and shipping costs. For more details on this story, go to https://www.kcci.com/article/wisconsin-woman-creates-custom-dolls-to-match-children-s-disabilties/29027779#.

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Amy Jandrisevits with a doll she made
(image via gofundme.com)

Monday, September 9, 2019

Fetal Alcohol Spectrum Disorder Awareness Day

Today is Fetal Alcohol Spectrum Disorder (FASD) Awareness Day with September being FASD Awareness Month. An FASD is a medical condition contracted by a child due to his or her mother's consumption of alcohol during pregnancy. The disorder usually consists of physical, mental, behavioral, and/or learning disabilities. There are four FASDs: Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (PFAS), Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE), and Alcohol-Related Neurodevelopmental Disorder (ARND). They're not curable, but if provided early in the child's life, there are treatments that can help reduce some symptoms. Out of every 100 children in the United States, 16 have an FASD, according to the Centers for Disease Control and Prevention. For more information, go to https://www.nofas.org.

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FASD awareness
(image via nofas.org)

Tuesday, September 3, 2019

Target's Adaptive Halloween Costumes

Now that Labor Day is behind us, you're going to see Halloween decorations and costumes at stores (if you haven't already). As part of its Hyde and Eek! Boutique range, Target recently began selling two adaptive costumes for children in wheelchairs: a pirate with a ship and a princess with a carriage. The wheelchair covers, which fit on various chair sizes, include hook-and-loop closures. The pirate and princess clothes have openings in the back and wide pant legs to make putting them on easier for wheelchair users. Target also sells plush shark and unicorn costumes for kids with sensory processing difficulties. These costumes contain flat seams, detachable sections, and hidden openings without tags for a comfortable feel. For more information, go to
https://www.newson6.com/story/40818496/target-introduces-adaptive-halloween-costumes-for-kids-with-disabilities.

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Target's adaptive Halloween costumes
(image via people.com)

Monday, August 26, 2019

Special Needs Shelters

With the possibility of Tropical Storm Dorian turning into a hurricane that will hit Florida, this is the time to think about where you'll go if you have to evacuate. There are special needs shelters for people with disabilities and medical conditions that don't require hospitalization. You need to submit information about yourself online in order to be placed on the Florida Special Needs Registry. This will enable you to receive information from emergency management officials about evacuation and sheltering options, which will be revealed when a hurricane approaches Florida. However, being on the Registry doesn't mean you'll automatically be taken to a special needs shelter. If you need assistance in getting to a shelter, contact Brevard County Emergency Management at (321) 637-6670, option #2. For more information, go to https://www.floridadisaster.org/planprepare/disability/.

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Brevard County Emergency Management logo
(image via spacecoastdaily.com)

Tuesday, August 20, 2019

Grandparents' Impact on Special Needs Children

Today's post is dedicated to my maternal grandmother (Nana) Shirley Jensen, who passed away from cancer at age 83 last Friday. Grandparents play an important role in a family with a special needs kid. Borrowed from a Her View from Home article by Sara Borgstede, below is a list of tips on how you can be a wonderful grandparent to a child with a disability:

  1. Accept your special needs grandchild's diagnosis.
  2. Have faith in your child's ability to parent.
  3. Be open to different ways of parenting and grandparenting.
  4. Help your child with your grandchild whenever you can.
  5. Love your grandchild unconditionally.
  6. Celebrate your grandchild's successes.

My Nana (who lived 15 miles from my parents and me for more than 30 years) did all of the above, making my childhood with disability more pleasant. She was always one of my biggest supporters. Life without Nana won't be the same, but she wouldn't want me to mourn her for long. Therefore, I intend to continue living with a zest for life, which she taught me to do. For more information about grandparents' impact on special needs children, go to https://herviewfromhome.com/an-open-letter-to-grandparents-of-kids-with-special-needs/. Grandparents Day falls on September 8 this year.

My Nana and I
(Photo by Tracy Jensen-McGrath)

Sunday, August 11, 2019

More Opportunities for UCF Students with Disabilities

As a proud University of Central Florida (UCF) alumna, I was pleased to read two stories about students with disabilities in the Summer 2019 issue of the alumni magazine Pegasus. The first story describes the first graduating class of UCF's Inclusive Education Services (IES) program. The class consisted of 13 students with intellectual and development disabilities (IDDs), who participated in commencement on May 3. Established in August 2015, IES provides program participants with a curriculum and college experience while earning a professional services credential in hospitality, education, or social services. The intent of the program is to help students with IDDs get a job. For more information about IES, go to https://www.ucf.edu/news/first-class-ucfs-inclusive-education-services-program-graduates/.

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UCF's IES graduates
(image via orlandosentinel.com)

The second story features blind triathlete Kyle Coon, who graduated from UCF with a communications degree in 2013. His eyes had to be surgically removed by age seven because he had bilateral sporadic retinoblastoma, a form of eye cancer. Coon, who has sisters, was inspired by a blind extreme athlete and his parents to be physically active. He was unable to get a job after graduation, so he decided to try running and was matched with a guide through the C Different organization. His goal is to compete in the 2020 Paralympics in Tokyo. The #18 visually impaired triathlete in the world, Coon currently lives at the Olympic Training Center in Colorado Springs, Colorado, where he exercises by swimming and running or biking every day. He has started competing in qualifying races. For more details on Coon, go to https://www.ucf.edu/pegasus/life-without-limits/.

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Kyle Coon
(image via twitter.com)

Note: Yvonne Roberts, a 1990 UCF alumna mentioned in Pegasus, is the new chief donor relations officer for Whistlestop (https://whistlestop.org/), an organization that provides services for the independence of people with disabilities as well as older adults in San Rafael, California.