I have a child who has “quirks” as I tend to call them. I don’t often say disabilities because labels suck, but more so, we’ve been through about 8 diagnoses, only a few of which have stuck. Who knows where we’ll be a year from now. I was fortunate because in my job, I work with individuals with disabilities, and I have spent the past 9 years dealing with the red tape that comes with having one; access to healthcare, to accommodations, to housing, to schooling, to really anything that someone would need to live an independent, productive, fulfilling life. So, when my child, at the age of 3.5, began to have “issues” at daycare and I had to start picking him up at least 2x/week, red flags, folks.
By age 4, he was kicked out of 3 daycare/preschools and also by 4, we had seen 2 psychologists, a psychiatrist, a sleep specialist and an “extra special counselor” who told me that I seemed like a good mom, but that “Freud had a theory that children who misbehave often didn’t receive the nurturing they needed as small children.” We did not return to that counselor, and at that moment, I was not enough for my own child. I was not able to be his advocate, I was not able to be my own advocate. I was emotionally exhausted. I could not put in a full day at work without having an anxiety attack at the fear that I would be called to pick up my child from yet another new preschool because he could not adjust, he didn’t fit in, he was different, and no matter what diagnoses we had, he was still just “the bad kid.”
I wanted to turn to my disability advocates, and there too I found we were not enough. We didn’t have a physical disability, we didn’t have a “big” disability, an obvious, “look at me and what I’m dealing with” disability; we didn’t have to spend our days going to OT, PT, Speech, we weren’t in and out of the hospital, so we weren’t “disabled” enough. Not disabled enough to find help and advocacy, a sense of community and understanding in a world where we weren’t “disabled enough” but certainly not “normal enough” to fit into everyday life either.
I wanted to seek out medical research and mental health providers who could provide support and additional knowledge, and there too I found we were lacking. In regards to providing, not even researching, just being able to access mental health care, one study in 2017 put my state at #44 overall. And #51 for youth (D.C. was considered a “state” here, and this measured both the prevalence for mental illness as well as access to care). We’re dead last. Clearly not good enough.
We’ve been through test after test to confirm diagnoses, and even on those, we aren’t enough. Too smart to be X, too hyper to be Y, too young to be Z. 3 points shy of this diagnosis, 5 points too high to be that. He acts one way at home and another way at school (doesn’t every kid?) so it isn’t ABC. When your child doesn’t fit in a box, it feels like the system isn’t enough. Tests on paper to determine the future of your child instead of just looking at him, seeing him for him, and recognizing that maybe tomorrow he’ll score those 3 points you need, or today was a hyper day and tomorrow he’ll ask to nap twice, so maybe your diagnosis will fit tomorrow? It is all just guesses at this point, and that is not enough.
We continue to fight; if we have a diagnosis, a disorder, a disease; whatever the next doctor tells us, we research, we find more knowledgeable doctors, we travel half-way across the country to get answers. Because counselors who blame my mothering for my child’s “quirks” aren’t good enough at their jobs to be allowed in our lives. Because doctors who tell me that they don’t treat “that type of child” aren’t good enough to treat my child in the first place. Because teachers who say my child is a bad kid and should probably be kept home until he can be “normal” in a school setting aren’t good enough to be with my child. My son is good enough, and I will try every day of my life to be good enough for him.