Coidados
Xestionar a viaxe co seu fillo complexo
Nesta conversación, coñecerá a Blyth Lord, a nai de Cameron que tiña unha enfermidade xenética e faleceu aos 2 anos. É a fundadora de...
Le máisPrevención do burnout do coidador: un obradoiro sobre a construción da resiliencia
Este obradoiro sobre o fomento da resiliencia e a prevención do burnout do coidador levouse a cabo cun incrible dúo nai-filla: a nai STXBP1 e a traballadora social, Amelia Seraphia Derr e a súa nai,...
Le máisSen diagnosticar
Esta discusión DEE-P gravouse o 13 de setembro de 2023. Durante esta discusión DEE-P, exploramos a experiencia de ter un fillo cun trastorno de epilepsia rara non diagnosticado. Comentamos diferentes...
Le máisOpcións de alta tecnoloxía para a comunicación alternativa e o acceso no fogar
“High-tech Options for Alternative Communication and Access within the Home” is the fifth in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends…
Le máisSistemas de comunicación de baixa tecnoloxía/sen tecnoloxía para nenos con necesidades de comunicación complexas
“Low-Tech/No-Tech Communication Systems for Children with Complex Communication Needs” is the fourth in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends at…
Le máisDesvelando os misterios da ataxia, a hipertonicidade, a atetose e o ton mixto
“Unraveling the Mysteries of Ataxia, Hypertonicity, Athetosis and Mixed Tone” is the second in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends…
Le máisAdaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays
“Adaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays” is the third in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our…
Le máisAn Overview of Hypotonia and How it Impacts Overall Functioning and Development
“An Overview of Hypotonia and How it Impacts overall Functioning and Development” is the first in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with…
Le máisPediatric Hospice Support & Care
This is a recording of the webinar “Complex Continual Care for those with living DEEs and their families,” which was held on November 30th, 2021. Pediatric hospice support is not…
Le máisSaving Our Telehealth for DEE Families
This is a recording of the webinar “Saving Our Telehealth,” which was held on July 20th, 2020. For families who have trouble leaving the house with their medically fragile children,…
Le máis