Saturday, March 5, 2016

life lessons from a "difficult child"

In preschool, I ran circles around my classmates.

Here's the stack of novels she's read today.” The teachers would indicate a large stack of books in kindergarten in first grade to my mother. “Here's the amount of classwork she's done.” A stack of uncompleted worksheets.

I thought the psychiatrist's questions were rather pointless. His condescending manner struck me even as a young child. I couldn't express it in words, so I bit and threw anything I could at him. By the first grade he had given me diagnoses of Oppositional Defiant Disorder, ADHD, and anxiety.

Age 14: I am diagnosed as autistic alongside those.

Age 16: depression.

Throughout: Social skills work. Therapy. Psychiatrists. Medications.

My life has been a cocktail of medications prescribed as diagnoses tacked on each other. My body and brain rejected many of them. Some altered my mood dramatically; others made me fall asleep in class even when I didn't want to. A combination of them gave me seizures in college. I tried to bail from them cold turkey and wound up with withdrawal symptoms for six months. I have no idea what the current ones – a much nicer combination than the last combination – have done to my brain chemistry; I can't function without one of them at this point.

I was gone up the tree when someone stops looking. I was screaming at people who touched me. I was shredding paper and trashing my room and causing a ruckus. I had broken another electronic item; this time, it's by accident, but last time, I threw it.

I never had access to enough language to express my feelings, my past trauma that I didn't know had happened yet, my pent up rage at the turmoil my life constantly seemed to be in. I tried to put words to feelings that I didn't know about, to use words to explain, but it failed. The same words that were my refuge on paper, working on novels and typing out poetry and stories, failed me with trying to express my deepest feelings.

Everything is a pathology, something that needs prescribing for, because we are “too difficult” otherwise. We are to be behaviorally-modified and we are to be silenced one way or another. My life has been through this framework. People wondered how to “fix” me. I was “that kid,” the weird one who moved funny and talked funny and could only talk about cats and gerbils and books, who seemed either lost in their head or too loud and frenetic for this world, who ran off to investigate things without a moment's care of whether I lost track of who I was with.

And yet I was never “from hell.” No one with a disability is from hell, Alison M. Thompson, author of the Boy From Hell: Life With a Child with ADHD. You've gotten that book republished. Congrats, I guess, on implying that we are from an otherworldly dimension of fire and punishment. This is how people see us: punishments, burdens, deadweights.

What about us?

We read your stories and hear your words, no matter how lost in our heads we seem. We are not your experiments in how quiet and orderly you can make us. We live and experience trauma from the way people treat us – we should have your support of all people's to back us up against a world that thinks us a waste of space, not contributing to the pain and trauma. We live your words and your punishments, reared to feel defective and that we'll be only considered almost people if we pass by your standards.

I never learned to shut up and be still. I never learned how to limit the amount of space I take up. I never learned to modulate and self regulate for others' discomfort with my disabilities. I never will. It breaks my heart that people live with the exhaustion of self-regulating into silence or compliance. It breaks my heart that people are learning the ways they supposedly don't matter from the world and all the ways they move and communicate are supposedly wrong.

I work for a world where it is at least mostly safe to be disabled, visibly or not, anywhere, anytime, and no matter who you're with. It is exhausting and painful and sometimes triggering, and sometimes rewarding. I would do it without any of the rewards. It is important enough to me that I lose sleep on how to best benefit the disability community.

Because we are not disposable, or punishments, or wrong for existing. 


Note: I used she pronouns as a child

1 comment:

  1. This is Alison Thompson, author of the book The Boy From Hell: Life with a Child with ADHD. I'm sorry you find the title of my book disturbing; I thought long and hard about it and believe me, I have never ACTUALLY thought of my child as being "from hell" - as an atheist I don't believe in such a place. However, there were days when I did feel like I'd been to hell and back, there were times when I referred to my son in my private diary as "the boy from hell" and my son himself has told me several times that having severe ADHD is like "living in hell" - hence the title. I love my kids dearly and would never do anything to hurt them. I'm also passionate about raising awareness of the reality of ADHD - which my book does - and about supporting both parents and teachers to better support kids with ADHD to reach their potential and live happy, successful lives. And I have certainly never wanted my son to be quiet and orderly....!

    I've actually blogged more about why I chose the title ... it might not appease you but I hope you will see my reasons were genuine.