As presented at the National Summit for Parents of Children with Special Needs organized by SNIC Rehab Foundation. COVID AND CHILDREN WITH DISABILITY The ongoing global pandemic has undeniably ushered in profound changes in the lives of individuals worldwide. Navigating such change is inherently challenging, particularly when it's a change we didn't anticipate or welcome. However, one thing is certain - change is an inescapable aspect of our existence, and it necessitates a collective community effort, focusing on those who depend on us the most. This includes the elderly, children, and most significantly, our children with disabilities. In this context, it's imperative to remember that when we look at our children, we should see them beyond their abilities or disabilities. We should regard them simply as our children, and we are their primary caregivers. With every challenge comes a set of opportunities. It's an opportunity to learn and grow. Let's explore the term "PANDEMIC" as an acronym to elucidate what we can do amid the constraints of what we cannot. P: Let go of Perfect Expectations: Understand that there are no perfect parents or perfect children. We are all a work in progress. This is the time to focus on the uniqueness of your child, irrespective of their abilities or disabilities. Each child is distinct, as is each family. Be flexible in your approach and seek partnerships with professionals who can guide you on the journey. Patience is a virtue, and as you channel your energies into caring for your child, remember that you, too, are a priority. Self-care is not selfish. A: Adapt to the New Norm: We must adapt to our current environment as we have no other choice. There are multiple alternatives to achieve the same goals, and it's important to ask for help tailored to the specific needs of your child and your family. N: Focus on Needs Over Wants: Prioritize your child's needs over wants and negotiate a plan for the next day. Be mindful of your routines and daily activities, considering the skills required for both you and your child. Effective communication is crucial, and nighttime routines, especially quality sleep, significantly impact the mental health of the entire family. D: Dining Together: Consciously decide to have meal times together whenever feasible. Create spaces at home where the family can gather, including the dining table, where at least one meal is enjoyed without screens. The dialogue table is where misunderstandings and communication gaps are addressed daily. The delight table allows for lighthearted moments, ensuring not every activity is overly serious. Finally, the divine table provides a space for calm and reflection, acknowledging that there are powers beyond our comprehension. E: Efficiency and Effectiveness: Recognize the distinction between being effective in achieving a goal and being efficient in doing so. Your efficiency in achieving a goal is influenced by your physical and emotional well-being. Proper eating habits and regular exercise are vital, as excess energy can translate into emotional turmoil. Be aware of your own emotions and the energy you bring into your home. Do your best with the resources at hand, starting from where you are. M: Make Activities Meaningful: Find meaning in daily activities for your child. Many therapeutic goals can be achieved through their involvement in household chores and daily living skills. Motivating yourself is not always easy but is essential, much like maintaining personal hygiene. Meditation and simple breathing exercises can make a significant difference. Remember that maintaining relationships, including your marriage, is crucial. The use of masks is essential and should be practiced indoors to help children become accustomed to them. I: Individualized Education Programs (IEP): Your child is unique, and individualized education programs should reflect this individuality. You know your child best, and they imitate your actions. Be prepared for several iterations to integrate any activity into your daily routine. Emphasize independence in activities rather than relying on constant supervision. Encourage your child to ask for help when necessary. Isolation is inevitable, but ensure that your child remains connected with friends, family members, cousins, or teachers online. This connection is not just for learning tasks but for social interaction. Limit the amount of information you consume, both about COVID and the myriad activities and courses available. Avoid overworking and overloading your day. C: Communication Is Key: Communication is the cornerstone of child development. This includes your communication with your child, your family, professionals, and others in your circle. Keep these interactions as positive as possible. When your child is upset, do not attempt to use reason or logic. Instead, give them time and validate their emotions. Once they are calm, they will naturally connect with you, and only then can you expect cooperation. Maintain a list of essential contacts that all key family members are aware of, ensuring you know who to call for various needs. Be mindful of your discipline approach, creating predictable patterns and routines for your child to experience some sense of control. Avoid overreliance on online education alone, as it primarily involves visual and auditory learning. Remember that the foundation of learning is stimulation to the vestibular, tactile, and proprioceptive systems.
