You might refer to yourself as a “special needs parent.” What does that mean? What does that look like?
I generally don’t like to use the term “special needs parent” (as it is not generally well-accepted in the disability world – if you’re curious as to why, check out this post). However, I find it helpful here because we all have this idea in our heads of what life for a “special needs parent” looks like. People associate the term with being overwhelmed with doctor’s appointments, medications, behavior management, and just tired and strung out in general.
While most people think of a "special needs parent" as a singular role (or maybe you think of it as a hundred different roles) I think a “special needs parent” is actually three jobs combined into one:
The Parent: This is a role all parents have, to love their children, spend time with them, help them learn about the world, and guide them through life.
The Caregiver: This is a role all parents have when children are young, changing their diapers, getting them dressed, feeding them, etc. but for parents of nondisabled children, they continue to have these duties throughout their child’s life.
The Advocate: This is a role that all parents have, but nondisabled parents rarely have to use. For the “special needs parent” on the other hand, this role is relentless. You have to fight against all the systems that don’t want to include your child, fight for the best school option, fight for or against that surgery or medication, and fight insurance to reimburse very necessary equipment and treatments.
Now, looking at those three jobs, I want to propose a new concept. What if the first job (of parent) was the only one you HAD to do, and the other two options were just choices? What if you could choose whether or not you were a full-time advocate and caregiver? What if you could decide which parts of being a “special needs parent” were fulfilling to you and which were not?
Well, there are resources to make this happen. There are ways to delegate caregiving activities, or even to get paid to do them yourself! There are many resources out there to help you advocate for your child at school or against discrimination. You can choose what kind of parent you want to be. And you don’t have to have a fat wallet to make them happen.
The most important thing is to make sure you’re able to do the first role of being a parent, of showing your child love and helping them grow. If caregiving and advocating for your child are taking over your life so you’re no longer able to be the parent you want to be, it may be time to delegate some of your roles. You don’t have to do everything yourself. It takes a village.