“I refuse to comply.” The quote is from the movie Ghandhi and the concept of refusing to comply with those who seek to control you has become a powerful refrain in my life. ESPECIALLY in my life now that I have both a husband and a child with SPD and Asperger’s Syndrome.
Not long ago, at various early IEP meetings, there was a lot of pressure put on me (and I can tell from the language used that this is a practiced litany) to “do something” about my child. Invariably, there was at the table a counselor or other expert with just enough sense of their own power that they felt arrogantly confident diagnosing and prescribing drugs (with ZERO qualifications to do either) based solely on their belief that my child would “get so much more out of school” if I’d just put him on meds. Those moments really activate that alarm bell in my head that perhaps these professionals might be more concerned with order on the factory floor of education and not with long term outcomes for individual children once they exit their wing of the factory.
I refuse to comply.
There are many families faced with the above scenario every year—a decision not to medicate, and a host of educators lined up to inform you that you are wrong, that you are harming your child, and then….the REAL issue rises from the deep….that your child would be SO MUCH EASIER to control if you would just comply. Hmmmmm….. Control.
So, a clutch of well-meaning teachers who must educate 26 kids at a time in a tiny room for six and a half hours a day would prefer it if my child were drugged with powerful psychotropic drugs simply so that they can get through the day without having to “deal” with him too much. I understand, really I do, and if it were my task to teach 26 kids, I’d be bent out of shape at the one who needs so much supervision, too. But it’s not my job. It’s YOURS. My job is to deal with him the other 135.5 hours of each week. It is my job to prepare him and help him and do his OT and see that he is well fed and calm and functions at his best. It is my job to stand as he dumps the poison of his daily frustrations and fears all over me and love him anyway. Your job is to teach him math and English and science and social studies and how not to make the other 25 children loathe his presence every day.
Meanwhile, in the midst of the teachers’ personal frustration and the general sense of judgment of me for being hopelessly misguided and uninformed, I have doctors (three of them, in fact) and OT professionals commending me on my decision not to medicate and supporting me in all that I do to help my son learn real coping skills and real strategies for dealing with real situations as they arise. Self-regulation. It’s hard for him right now, I get that, but it’s what will win out in the long run. I understand that it takes an excruciatingly long time of exposure to stressors for him to work out how NOT to behave like a funny, furry blur of a wild animal and instead regulate his emotions and reactions in a manner that is less difficult to deal with. It’s a learning curve nobody wants to put up with, but I ask this….
What happens when my child can choose not to take his meds? If we make him easy to deal with now, but he fails to learn to deal with life as it presents itself without the veil of chemicals, what then? Trust me on this, I have real perspective here, and when a 20 something (30 something, 40 something) aspie suddenly decides he can do whatever he wants and skip taking all those meds that “dull” his senses, he will be ill-equipped to function in the storm that he will inflict on everyone he knows. Life will come to an utter stop.
Every time I bring this up around other mothers with spectrum kids, there is fierce debate and defensiveness, then justifications and floods of guilt-fueled arguments. This bothers me. Some who see results from the meds in the right-now become so pleased with what they have accomplished for their child, they seem to give themselves permission to feel superior to us unwashed ones who chose not to medicate. We will see where we all are in fifteen years. The mothers of the late-teen aspies who have multiple hospitalizations under their belts might regret not muddling through the muck of teaching self-regulation while you can still physically pick your child up and put them in time out, or move them away from a stimuli and hold on to them while they get back under control themselves. On the other hand, there are families who never faced the non-compliance problem and would argue that it is because they medicated early and often. I don’t have answers yet, only my gut instincts and love, just like everybody else.
I do know this though, and know it absolutely: when someone who is not a qualified medical professional demands of me that I should medicate my child, and their core motivation is to preserve order in THEIR sphere of influence, which my darling child will occasionally wreck until he learns not to, I will continue to patiently, persistently, and sometimes even ferociously “refuse to comply.”