Without getting into privacy-violating details, I have been noticing how stressful it is that undergoing evaluation for a formal diagnosis means submitting yourself to the scrutiny of Neurotypicalandia.
Disability advocates write about this all the time. The gatekeeping involved is truly a barrier to accessing all manner of support services. And of course the process itself, and interacting with the professional team or individual, incur trauma for the person.
I can’t help noting how much judgment emanates from said professionals about how, because we as parents have stepped in so often over the years to render support that is lacking from trained people, we somehow blur the field of study. Mental health professionals are wont to say that if they can’t see the full expression of symptoms, they cannot render an accurate diagnosis, or come up with the most effective treatment plan.
Fair enough. But they do not have to take the flak that we do either. In my two decades of parenting, I can remember clearly how, every time I stepped back from going over whether homework was done fully etc, I was told by one teacher or another that I should not be leaving my child alone to flounder. Sooooo…. I was basically hearing, in one form or another, admissions of how school was not able to meet the full range of needs, and we as parents must plug the gaps.
And then there is the cultural assumptions piece. If someone was bullying my kid, it must be because we were tiger parents and our strictness had beaten the spirit to fight back out of him. Yes, someone actually said that to my face. Evaluating psychologist might opine that I had been too involved, but such was not the case when I compare to how much helicoptering other Asian parents do. I know this because a) I see how my fellow Desi parents give up their whole lives to be their kids’ academic co-pilots; and b) I could perceive easily that it did not help my kids, so I learned to rein it in. Soooooo…. basically, by both rubrics (i.e. school’s perspective, AND fellow Asian parents’), I was not hitting the right note.
Now if you are a Desi parent yourself, I am very used to what reaction you would have here. You would wish to email me and tell me that I should have confidence and not care what others say.
Do you really believe this level of disengagement re: educational staff to be possible? Especially when your kids have IEPs/504s? And do you believe there is not some level of difficulty working with kids like mine, such that a teacher’s fatigue and dislike of them might start to affect the kids’ ability to show up without flinching from the mistreatment and disregard? And do you not see a path for the school to start stonewalling the parents’ attempts to mitigate? Because this has happened to us. And finally, if you don’t know what can happen if school thinks you’re not parenting effectively, I am glad for you, but some of us see a very different facet of school districts, and it isn’t benevolent or culturally attuned.
I detest eval sessions because they ask of me too much raking up of a difficult journey. I think this is where most people abandon us: at our own front door. And I’m not just talking about people not wanting to be around families like mine.
I’m talking about how even trained professionals don’t know how the lack of external supports can turn a family inward. When you are all your kid has, and have to be everything to them because other people’s interest in them is fleeting, or specific to certain activities or events, and you have to edit yourself in social settings so that you can add some good cheer to a party, people truly do not know the extent of how abandoned we become. How much like wraiths we feel while people chatter around us. How most Desi social convos end up sounding like a brag and a flex–a display of privilege and access, bought with money, connections, and parental strategizing.
This is why I always write that it is not disability that is the issue, but the outside world’s disinterest and judgment and gatekeeping. In one way or another, I am constantly reminded that people are uncomfortable with our reality. They show it in different ways, but I’ve long ago lost interest in educating anyone on how to be better. If you wanted to be, it would have happened by now. And if you are already doing it, I am glad to be safe in your presence. And if you are evaluating my kid and can’t see that disability injustice leaves a mark, fuck you.
Reflecting on experiences with the district, I could think of only one teacher who had something nice to say to our family. R was in his senior year, and we were having a last parent-teacher conference. Mr G, the social studies teacher, told us he was a great kid and we had done a fine job with him. I almost cried because, you know, we both know what a fabulous kid R is, but no one but Mr G in the whole effing district ever said it to us.
Which brings me to how excited I am to write here on my blog that we have launched a senior award in A’s name. It is for students of color with IEPs, and students with higher needs in self contained classrooms are to be considered as well. Grades are not to be a criterion. I think that the process of selecting a student each year has the potential to be transformative for teachers. Our kids work ten times as hard, and often show up to daily mistreatment. We also stipulated that if the selected student in any given year does not wish to have their IEP status known publicly, they should receive the award privately. Again, it is not the fact of being disabled that is the problem, but the way others react. I would not wish to preach to a disabled student about whether to be public or not. This is not for making us feel good, but to acknowledge the awardees.
BUT IT MAKES ME FEEL GOOD. It is a way to heal some of the wounds which school has inflicted on us. The four of us deserve that, even though we are imperfect.