In this page of covid and extreme health, economic, and climate changes the world has become a very unpredictable place. Politicians, health professionals and even clergy are hard pressed to provide a consistent and trustworthy answers as to what will happen tomorrow. Schools have closed, college students have been sent home, employers have limited hours and access, and many have to depend on the government to support access to even basic needs. The challenges of this time lead to the question “What would happen to your child if both you and your spouse (partner/support system) became ill for an extended period of time or died?”
Many families of special needs children have unique ways of functioning. Despite attempts to create a regular schedule with high and consistent expectations for your child’s functioning. An objective reflection will lead you to admit that you have a unique way of functioning with unique rules, accommodations and responsibilities for your house which are designed to support your special needs child. Many families with a child who has dyslexia use visual cues, verbal commands on tv’s and the younger sibling that helps the dyslexic to guide through his world. Indeed, even his peers who play in the neighborhood have adapted and provide support when playing video games or sports. Some neighborhoods have special signs to warn cars that “Deaf child playing in this area” So what happens for these children if their parents or their community supports are no longer available.
The reality is that there are hundreds of varied details handled by parents interfacing with teachers, IEP teams, physicians, counselors, coaches, behavioral specialists and family members that are not written down. Indeed, you probably do many of these things without thinking about them, including specialized diets, music that is used to calm them, sensory chairs, specialized computers etc… In many homes a younger child is asked to provide prompts for the older child to stay on task. Explaining how and why the home runs in this way is a complicated but necessary responsibility in case of an emergency.
Each family of a child that is not “Neuro-typical” (average) must create an emergency care plan that covers all of the children but especially that “exceptional child”. If you are not there what adult can come in and manage your home and children with minimal disruption. The adult may or may not be a close relative. However, they must be clearly identified and empowered in order for the best needs of the children to be met. Who knows the medical, educational, and behavioral needs and processes that have to be followed to maintain the family? For example, a missed eye specialist appointment or social worker meeting may lead to the loss of a scholarship to the school for the blind for a child with a degenerative eye condition. (indeed it often takes 6 months to get an appointment with a pediatric eye specialist). What money has been set aside (or is available in life insurance) to take care of the child’s short- and long-term needs.
The task then is to be wise and to make a plan for all of your children to function and to assist in the care for the exceptional child in your home. The use of technology is wonderful that will allow you to record and explain the steps of the plan to calm those who will take over, and share your heartfelt thanks. Then identify the child’s support team in the school, community (e.g., coaches) and medical professionals. Identify what funds are available and how disability services are maintained and funds managed. Finally, outline your plans and goals for the family with the responsibilities each child has for the others. In order for the plan to work these desires must also be put into a legal document like a “will”. This will prevent well-meaning family from swooping in and changing plans and support that have taken years to develop. Emphasize that it takes years to restart services once interrupted.