When parents of non-disabled children say they are tired, they are met with sympathy and compassion.
Grandparents and friends rally around with support.
When parents of disabled children say they are tired, the conversation changes to respite centers and specialized homes. Hardly anyone rallies.
We’re allowed to be tired and we are allowed to keep our children home.
We’re allowed to be tired and we don’t believe our children to be a burden.
We’re allowed to be tired and we can admit it without fear of judgment.
We’re allowed to be tired.
Just like all parents/guardians/caregivers, we want our children to be seen as non-disposable.
Many parents/guardians/caregivers burn out in silence. We don’t feel safe speaking openly about our experiences. We’re not trying to be martyrs. We’re busy providing personal care while also pushing up against systems that harmed individuals like our children for centuries.
We are learning and falling and making mistakes, just like all parents. Only, we’re not so easily forgiven.
We’re trying to move the needle forward. The mention of institutionalization tells us we have a long way to go in changing mindsets about the rights of disabled individuals.
This is a long narrative.
Whether you are a parent, friend, educator, clinician, or administrator, we can all benefit from the perspective of the adults raising children who are unlike themselves (a reference to Andrew Solomon’s book Far From the Tree: Parent, Children and the Search for Identity).
Quality care is a human right, and we must demand it.
Note: This is not a debate about the value of respite or long-term care centers. These are necessary for some families as other options are not currently available. We are fighting for other options.