When Staying Home with My Special Needs Child is Almost Worse Than the Virus Itself
Dear Governor and Lawmakers,
As a parent of a child with special needs, I am writing to you on behalf of the many moms and dads that wake up every morning dreading what the new day will bring. It’s been a long two months for everyone. We understand, really, we do. But for us, overworked moms, it’s been tough, too. It’s been two months of crisis, after crisis, after crisis, confined within our own four walls. It’s been two months of our children getting attacked by their sibling: our lovable, but difficult child with special needs. Of getting bitten and beaten up, dealing with tantrums, yelling, and screams. Of begging for our child with special needs to get back into a healthy routine.
It has been, to put it briefly, two months of pure hell.
For most of the world, staying home means slowing the spread of the virus and protecting themselves and their family. But what if staying home is more dangerous for our families than the virus itself? If essential businesses are open, then clearly there are ways to open things up safely. And if non-essential businesses (ex: low-risk construction) are beginning to open, how can you remain silent about the special needs’ population?
With every passing day that my child’s structure is ripped away from him, the situation goes from bad to worse to horrific to absolute nightmarish. If our schools are not in the equation, perhaps we need to redefine the word “essential”. Having a safe home environment is essential.
Having a significantly disabled child with no danger awareness in a therapeutic environment is essential. Ensuring a child receives proper supervision and required therapies is essential. Restoring a calm and safe home is essential! If we cannot provide our children with a basic sense of security, how can we expect them to learn? (See Maslow’s Hierarchy of Needs.)
Safety aside, meeting the needs of our special children while meeting the needs of a family is a total oxymoron. We can’t physically keep the windows open for air, but closed for safety as the same time. We can’t keep the house quiet so the kids can do schoolwork, while blasting music to calm our special child. We can’t cook for our families while keeping the flame closed and secure. We can’t work from home and be a special educator, therapist, behavior analyst, and social worker at the same time. And we can’t tell our children that things will go back to normal soon when that is not the plan, since the government does not understand the urgency.
We are not seeking to minimize the virus and deaths. We are begging for those in power to remember us, and take action in a safe way. We are willing to comply with any regulations to ensure safe operation of schools, but we have yet to see or hear anything pertaining to us, aside from the government offering tablets to our children. Are you kidding? To a child with autism, a tablet might merely be another projectile to throw at someone’s head. Using devices for “remote learning” is as remotely impossible as it can get. Besides, all year we veer away from screen time because of how dysregulated kids become, and now we are handing it to them on a silver platter.
Something is wrong with this system. We know that no one chose this situation. But we do choose our reactions and responses. And continuing remote learning for the rest of the year is the most delusional, unrealistic, and unsafe expectation for all of us. For the children that are wreaking havoc at home, attending school and getting back to their safe havens is an absolute emergency! We need the special ed schools to open. And we need it to happen now.
The instability and insanity our family and many more families are going through is indescribable, unfathomable, and unbearable. For the parents, for the families, and for the special children, who are the greatest victims here.
Yes, coronavirus is ripping families apart. But autism and developmental disabilities are ripping families apart, too. Guidelines can be adhered to and accommodations can be made, yet broken hearts and shattered families are irreparable. Sometimes we need to weigh our options and determine which runs a greater risk.
A Drained New York Parent of a Child with Special Needs