When we first realized that something was wrong with our child, I immediately became hyper-focused on getting her the best treatment.
We had a lot to catch up on. And that is what I thought was going to happen — that catching up would fix the problem.
Two years into Speech, Occupational Therapy, behavior therapy, and public preschool she made remarkable progress.
But since Kindergarten started, I realized that maybe I approached this wrong. It isn’t going so well and it feels like we are starting all over again as I watch two years of progress fade away into darkness.
My happy, imaginative, five-year-old is struggling to keep up with the emotional demands of Kindergarten despite how far ahead she is academically.
While she knows all of her letters and can sloppily write them and identify sight words, she can’t sit still, is constantly moving, she wants to play, wants to color, she wants to engage with everything and every one the point that she is disruptive because that isn’t what is expected of her.
She is supposed to sit, listen, be quiet, be still, and wait her turn to talk in a room filled with twenty other kids where play and natural socialization are limited. And while most of the kids have conformed to this environment, kids with big personalities are supposed to turn themselves off like a light switch.
And then there are kids like mine, on the autism spectrum, and I feel like I am trying to make my daughter sit in a broken chair.
She is having meltdowns and crying, she is falling asleep and taking frequent breaks from her classroom. I’m getting constant phone calls and communication from the school and it is puzzling because my child has a disability and an Individualized Education Plan. She is supposed to have what she needs to be successful and she isn’t.
At first, I felt like I failed as a parent. And as an advocate.
Despite trying to get her the best treatments, preschool education, and nourished her talents — it all doesn’t matter because she can’t fit into their box.
Yesterday during our follow up meeting with her developmental specialist when they mentioned trying psychiatric medication, something in me snapped. I had to change my entire life and style of parenting over the last two years. I ignored behaviors, prompted her, re-directed, rewarded her for doing regular things, and had empathy when she was at her worst.
Basically, I had gone against the grain of everything I thought I once knew about parenting. Because, it’s this simple: my child needs a different approach and I accepted it, followed through on it, and it worked.
My child is happy and healthy, she is brilliant and a delight. It was one thing to put her on a mild blood pressure medication with minimal side effects because it has improved her attention and impulses just enough for us to be able to intervene with therapies. But putting a child this young on psychiatric medication not approved by the FDA for her age group, with serious risks and side effects so she can fit into a box at school is where I draw the line.
If her entire life was impacted to the point where we couldn’t manage her or her quality of life was truly at stake, I’d probably consider it. But we are just talking about school.
I found myself questioning, Is it my right to risk her heart health, metabolic function, and interfere with her brain development so she can sit on a broken chair because they refuse to fix it?
And despite all of that, my daughter comes home every day and wants to play school with her dolls. She wants to write her letters and recites songs and events that occurred at Kindergarten despite how hard it is for her to cope with when she is there. I find myself grateful that she doesn’t hate school just yet but fear what the future holds for her.
And I’m her advocate, everywhere we go from the store to school, and deciding on treatments. I never realized how hard this would be to constantly say no. No psych meds. No this isn’t working. No, she does not belong segregated. No. No. No.
There comes a point when enough is enough. I will always work with my child to learn and grow, to cope and improve, but I will not suck the soul out of her unique personality.
My child is not broken, our education system is.
I’m tired of talking about autism and people are tired of hearing about it. But the world is going to change to accept my child, my child is not going to be drugged and converted to convenience the world.