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Non-Invasive Prenatal Testing for Down Syndrome
The National Down Syndrome Society has established criteria to evaluate companies that develop non-invasive prenatal diagnostic tests for Down syndrome. Advocates are encouraged to contact the company currently promoting one of the first of these to be available, Sequenom.
Nursery Rhymes and Political Correctness
Parents of chidren who reflect the diversity of our communities are working to raise awareness of cultural and personal sensitivities that their families experience. Sometimes this advocacy effort is condemned as unnecessary or ridiculous 'political correctness' by those who feel threatened by it
Nurturing Parents of Babies with Disabilities
There are simple steps advocates, friends and family can take to support and nurture parents the first full year after their baby is diagnosed with a developmental delay or disability, is injured, or develops a physical illness or other condition.
Organ Transplants and Developmental Disability
In 1995, Sandra Jensen was initially denied a heart/lung transplant because she was born with Down syndrome and medical professionals felt she would be unable to manage post-operative care. In 2012, a young patient with intellectual disability was denied a kidney transplant even with a family donor
Orthotics and Shoe Inserts for Children
Families of children with cerebral palsy, Down syndrome or other conditions may be unfamiliar with the use of orthotic shoe inserts that help beginning walkers learn how to take their first steps and retrain older children and teens how to walk without causing lifelong discomfort and pain.
Outdoor Games for Children
Children with special needs often learn new games at summer picnics, parties and on vacation visiting relatives just like their mainstream brothers and sisters. It is delightful when we see any child teaching their cousins, neighbors and classmates games that are cooperative as well as competitive.
Pain Management for Children with Disabilities
Pain management for children with chronic medical conditions and others who need blood draws, bone marrow aspiration, central or PICC lines, IV sticks, or port access may experience less pain, fear and trauma using numbing agents and techniques to avoid or relieve anxiety and distress
Pain Tolerance and Down Syndrome
Medical professionals who have been taught that individuals with Down syndrome have a high tolerance for pain are much less likely to consider basic pain management strategies for patients in their care. Some children and teens are stoic, and others lack communication skills to express it.
Pain, Childhood Blood Draws, Injections, IV Lines
Children deserve to be offered pain relief for childhood blood draws, injections, bone marrow aspiration, laser treatment and other medical procedures that may create more fear and anxiety than the injury or illness being treated. Some are: EMLA disks, Ametop gel, Numby Stuff, and vapocoolant sprays
Papoose Board Restraints - Dental or Medical Uses
Use of restraint boards or passive restraints for medical or dental procedures can be frightening and traumatizing for patients with developmental disabilities and those who are unable to communicate due to injury or illness; often insulting to Native Americans to refer to misuse as Papoose Boards.
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