Am I losing my mind, or as a caregiver, is the whole world gaslighting me? These are my honest thoughts on a near daily basis. Maybe not always gaslighting but trying to sweep me and my child under the rug. Maybe even just shut me up enough to keep things easy. Not rock the boat. Was I like this once upon a time? Did I blatantly turn my back on a whole category of people? PEOPLE? Not just that, but did I make it HARDER for them to exist in this world? Maybe I did. If so, I was wrong, and I am sorry.

It’s IEP (Individualized Education Plan) season and so much has come up from the IEP, as well as in life, that I feel like I’ve been pushing a boulder up a hill only to wake the next day with it back down to the bottom, literally rolling back on top of me. The crushing pressures of educating everyone around me and advocating for my disabled child is consuming my being. It’s not caregiving. Let me say that again:

I am feeling crushed, not by caregiving my child, but by the ignorance and resistance of society.

When it comes to my child’s IEP, I had to hire an advocate just to be heard. My own money has to be spent to access my child’s basic right to an appropriate education. I am not pushing for anything more than what is rightfully owed to him. Occupational therapy for a child that cannot yet use utensils or scissors. Physical therapy for a child that has a weak core and cannot yet move quickly enough up and down stairs to keep up with his peers or jump at gym. Vision therapy so my child can learn how to visually scan and access his AAC device and his environment. And proper speech therapy to support alternative and augmentative communication in a neuroaffirming way.

When it comes to getting respite, I often take my child to a facility that offers child care. An institution that has been supportive and worked with us as much as possible to accommodate my child. Great, right? I thought so too, until I find out a cozy corner created for my child to go when dysregulated, turned into an actual area of SEGREGATION where my child was forced to stay, and no other child was let near him. He was often kept from exploring the room, sitting with his peers, and from engaging in circle time. My son loves all of those things. He also loves his cozy corner, but not for the entire time.

These incidents don’t happen to typical families, but they are a regular occurrence for me and my child. Yet, when I bring them up, I am often the lone voice in the room while everyone else gaslights, stonewalls, remains silent, outright denies my experience…take your pick. It isn’t until I make a huge deal, like get an advocate, or get the supervisor, or get loud or cry my eyes out in exasperation, that anything changes. If anything changes. Why can’t people just listen to me without having to turn into a raging monster or a ball of tears?

I know all of these people on an individual level. At the schools, at the childcare facility. They are all good, well-meaning people. They have families and perform acts of kindness and have an abundance of empathy. Yet as an entity, they become a huge obstacle when my family, my son, is simply trying to live his life and be included.

When I asked my son’s neuroaffirming therapist why things have to be so hard for us, she reminded me. Just a few decades ago kids with high support needs were instiutionalized, locked away from the general population. And now, society is woefully behind in understanding and creating true inclusivity. This needs to change, and now is the time. I need to be heard the first time, believed, and I need to be supported by society, not crushed. My son belongs here. Stop making it so damn difficult.