(WOMENSENEWS)—”Hey sweetie, how was your day?” she asked.
“It was really good,” I said. “I had a little setback when my friend offered me a cookie.”
“A cookie?” she replied, one eyebrow quizzically raised, her small, thin lips pursed, knowing I was on a diet.
At that moment there was nothing I wanted more than to kick her straight in the nose. Unfortunately, the only reason this was actually an option was that she was kneeling in front of me, washing my genitals.
Even though I’m a teen with a disability my life is like any other teenage girl — I have crushes, want to be liked by my peers and have aspirations in life, like going to college. And like my friends, I have a love-hate relationship with my mother. She is an amazing woman who does so much for me, but hormones and teenage rebellion can also make me resent her sometimes. When I have these feelings towards her though I can’t stomp out of the room yelling, “I HATE YOU,” like other girls do. I always have to swallow my feelings, since I’m never in a situation where I don’t need something from her.
It’s normal for teen girls to act out at home during puberty, said Annie Harris-Meachem, a disability rights advocate and psychologist.
“Puberty is, without doubt, the most emotionally volatile time in the life of a teenage girl,” she said. “A disability, visible or invisible, exacerbates and makes it much more difficult to answer the many questions about becoming a woman and sexuality.”
Harris-Meachem, author of “It’s Easier to Dance: Living Beyond Boundaries,” supported my observations that the daughter’s urge to rebel and the stresses of high school social dynamics make for a pressure cooker of emotions that swing from sweet to devil in a matter of moments. Add in an incessant splash of teen girl insecurities and you’ve got chaos at home.
Mother-daughter bonds are never simple, but when the daughter is disabled it is especially complicated. My mother assists me when getting dressed, showering, using the restroom and preparing meals. She is also my driver and main support system. Needing her help for all these things doesn’t leave much room for rebellion or teenage angst. How am I supposed to sneak out and party with my friends when I need her to physically get me in my bed?
My need for my mom to constantly be around means I haven’t gotten to party with my friends, get drunk on the weekends or even try to understand my sexuality. Though my mom tries to give me the space I need, some things are out of her control. It takes a toll on our relationship. This shows up in passive aggressive comments or moments when I explode, after holding my anger in too long.
I’m not the only one who struggles with these issues. Izzie Penston, 15, said “parents (of able-bodied teens) don’t hover around them nearly as much.” Penston, from Alameda, California, has Friedreich’s Ataxia, a disability that affects her nervous system.
Penston tries to avoid her parents when she doesn’t feel like she can control her emotions. Her mom, Zoe Penston, acknowledges the situation isn’t easy. “We don’t really have the ability to give each other the silent treatment or a lot of space,” she said.
My relationship with my mom is hard on her too. She doesn’t get to see friends or go on dates. I asked her about this recently. She was unwilling to admit it but I know it’s true: Her life would be a lot easier if I wasn’t disabled. I live with this guilt every day.
In two years I will hopefully be heading to a four year college and move away from home. This would be my first real opportunity to get a glimpse of “typical” teenage life. But it also terrifies me. While I want to be ready to spread my wings, without my mom I fear it will feel as though I have lost a limb.