Updated: May 30, 2020
Ellen Goldbaum from the University of Buffalo reported that children with disabilities belong to the most vulnerable population impacted by COVID 19. Dr. Dennis Z. Kuo, of chair of the Council on Children with Disabilities of the American Academy of Pediatrics, explained “What I’m hearing from them is that as we shut down the country and close schools, kids may lose access to therapies and counseling, which they would normally get through school.”
These are incredibly stressful times for the population with special needs. This article goes to all the parents who are having a difficult time coping with children with disabilities. My heart and love go to all of you. Parents of students who receive services of Special Education, you will see a regression in their academic, behaviors and functional skills due to the separation from sources of treatment like the school, therapist, after school community centers. It might be very overwhelming for you who if you are not familiar with the strategies to help your child to transition and adjust to this crisis.
Below is a list of tips to help you to manage your children:
Understand that you need to decrease the demands at home, or your child will experience frustration, meltdowns, and will refuse to comply to your demands. In some extreme cases we can anticipate aggressive behaviors with sudden changes in their routine.
Create a schedule to establish a routine for your child, but not too demanding.
Make sure your child understands the importance of hygiene and the crisis we are going through.
For children with autism, and even more if they are not verbal, please make a story with pictures which are called “Social Stories” in applied behavior analysis. In the story please illustrate the steps and measures for hygiene, social distancing (your child might know this but as “personal space” by her/his therapist or schoolteacher), and the lock down routines.
If your child gets too energetic in the home, take him for a short walk in your neighborhood of at least 10 minutes, wearing both of you, your masks, gloves and observing social distancing.
If your providers (teacher or therapist) are available have them talk on the phone or via Zoom with your child in case a behavioral intervention is needed.
Foster calm and show love to your child.
Prioritize your own care by being kind to yourself. Stay in virtual communication with those who support you and your child.
Now I am transitioning very briefly to another topic, because we need to stay alert with the current structures, and resources in place that are expected to serve vulnerable populations. It happened to my sister and her son who lived in Connecticut. He received the wrong medication twice because they didn’t consult with family.
Medical Discrimination and Bias
Abigail Abrams shared in her Times’ article of April 24, 2020, that most medical schools do not tech future doctors about disability, and the first interaction they have with this population is when they need care. It is frightening that the majority of doctors see the lives of individuals with disabilities with less quality, and that implicit bias is manifesting in the disparities we have been seeing with different populations including the population with disabilities and the communities of people of color.
We must remain vigilant of the services and care our relatives receive with follow up calls to providers, asking for documentation and if needed with an advocacy group. Our most vulnerable need us!
Maria Santiago-Valentín is a Learning Disabilities Consultant, Mindfulness Educator, Behavior Analysis Technician, and Ho’oponopono Certified. 23 years ago Maria worked on her masters’ thesis in literary translation about one of the co-Founders of la Créolité, Dr. Raphaël Confiant. She translated the first circle of Le Nègre et l'Amiral. She visited Martinique 3 times between 1996 and 1997 and found commonalities between Martinique and Puerto Rico about the process of racial integration, colorism, the economy in the 1940s, superstitions and magic, the illiterate and poor working class, the slums in PR and Martinique, and Christian traditions. The difference was the use of Créole as a language of resistance, phenomenon that did not happen in Puerto Rico. Her thesis was chosen for a 2019 Doctoral Project on Traductology at the Université de la Sorbonne -Paris 3 about Dr. Confiant, as reference of the vocabulary, language, and sentence structures Maria used in her translation. https://www.worldcat.org/title/negro-y-el-almirante/oclc/41994179 From 2003 – 2007 Maria was one of the plaintiffs of the “Connecticut Coalition for Justice in Education Funding”. Maria presented her paper An Overview of the Neurological Base of Bipolar Disorder at the 2018 Global Mental Health Congress in Paris, France. She is doctorate candidate at Walden University. María’s eBook: Bipolar Disorder: Mindfulness, Medication, Digital Psychiatry and Classroom Accommodations won 1st Place Special Needs/Disability Awareness at the 2019 Royal Dragonfly Book Awards. Maria collaborates with the Organization of Battered and Abused Individuals founded in Trinidad Tobago by Sherna Alexander Benjamin. Maria is Honorary Member of All Ladies League and the Woman Economic Forum. Maria is Editorial Board Member of the International Journal of Psychiatry Research and Contributing Author at Thrive Global.