Nonprofiteers

PROWD – Support for families of disabled children

 

Long Island NY mom, Dina Diana, started PROWD, when she realized how little information and support was out there for parents of children with disabilities. PROWD stands for “Parents Raising Offspring  With Disabilities”.

 

”My organization came out of my own life experience in dealing with children with disabilities. My son, Daniel (born normal), started having low muscle tone and associated problems at a few months of age. He then started with seizures at age one. That led to an episode of status epilepticus (lengthy, ongoing seizure) for just about an hour at 16 months. That episode resulted in an acquired brain injury.  This damage resulted in his diagnosis of mental retardation. He is diagnosed on the Autism Spectrum and has associated ADHD  (Attention Deficit Hyperactivity Disorder) and other issues that go along with all of these diseases and issues. It has been a very long road. 

 A registered nurse, Diana was grateful that she had a greater understanding of the medical aspects of her son’s condition. However, little did she know that she would need to be armed with that and more.

 

A family of five, the Diana’s also have two younger daughters.

 

“My third child was diagnosed with NF1, View shared post(a genetic, neurological disease associated with The Elephant Man's disease, as lay people know it) at the age of three. She has a learning disability and may have more obstacles to overcome in her life than I want to imagine. I'm hoping and praying for the best.

 Children who have disabled siblings can gain a greater appreciation of the value of different kinds of people and become more understanding of human differences, states Dr. Lawrence Kutner,  psychologist and author of “When A Sibling Is Disabled”. 

 

“My second child (16 years old) was great up until the past year, as she now suffers with anxiety and depression due to the impact of her siblings problems affecting the whole family dynamic over the years.

 

Kutner also states:

 “To handle the stress successfully, children need increasing amounts of information about their disabled siblings and other family issues. This information has to be presented in ways that match their own developmental needs and abilities. A kindergartener, for example, may require reassurance that he didn’t cause the sibling’s problem, especially if the disabled child is younger. He may also need to know that he can’t catch a disability the way he can catch a cold from a brother or sister.

“Older school-age children often have to explain their sibling’s disability to friends and classmates. They need to practice and master the social skills that will allow them to answer children’s and adults’ questions, even when they’re unspoken. Adolescents, who are struggling with their own wishes for independence, need to know what the family’s long-term plans are.

 

Dina realized that there are thousands of parents in the world who are equally confused as she was, misinformed, isolated, and suffer grief over “what might have been.”  She wanted to connect with them, and to help them on their journey as parents and caregivers of disabled children. She hopes to lessen the debilitating stress that can affect families.

 

“The stress and pressure of a disabled child is challenge enough. These families need people out there advocating for them, helping them along the way. If I can be a small part of their journey in lightening the load, I would be honored. 

 

To reach Dina, visit PROWD’s Facebook Page here.

 

To reach me, Ann Bailey, email me at libbylottie@yahoo.com