It means wanting the benefit from two possibilities when you can only choose one.
Parents, teachers, therapists, experts, researchers. Pretty much everyone in the special needs world talks about the benefits of inclusion. According to specaileducationguide.com, inclusion means “securing opportunities for students with disabilities to learn alongside their non-disabled peers in general education classrooms.”
I am a fan of inclusion. I understand it and believe in it. I want my daughter in a classroom with her peers. I want her to learn math and science and get lost reading novels. If she wants, I want her to go to college.
I want her to have friends. I imagine she would enjoy talking on the phone way past bedtime and meeting her friends at the movies or the pool. I want her to be invited to sleepovers and to prom. She should learn how to drive (with Ben teaching her, not me) and break curfew. Homecoming, t-ball, boyfriends, disappointment, gossip, dance class, babysitting, term papers and field trips, I really do want her to do it all.
I know the benefits of inclusion. Physically, educationally, emotionally, mentally and in so many other ways she will become better equipped to fall in line with society if she is truly part of society.
But that is really what I am afraid of.
What does falling in line with society mean for her? Are all of those things above possible for her or do I need to adjust my expectations? Will other’s bias get in the way and will she be held to a lower standard because – subconsciously or consciously – she is seen as less than?
Will she develop meaningful, real friendships or will she be invited to sit with people at lunch because they feel sorry for her—or worse, are forced to ask her? Will she be strong enough to hold up to the challenge of proving herself everyday for her whole life or will she tire and give up, just taking what is given to her?
And, am I strong enough to cheer her through it from the sidelines?
When she was born, I didn’t really get to see her face before she left me in the ambulance headed to specialists waiting for her at the children’s hospital. “Does she have Down syndrome?” I asked Ben after we were alone and settled in my recovery room. I was still holding out hope that the prenatal tests were wrong.
“Yes, Heather. She has Down syndrome. Didn’t you see it on her face?”
She just started a new school year. Her teacher sent home a laminated sheet of paper with each child’s face and name typed underneath so that Ellie could practice identifying them at home. She was very excited to show it to me. She points to the correct pictures when I say the names and tries to say them out loud herself.
When I noticed that Ellie looked to be the only one in her class with Down syndrome, my heart dropped. Will the other kids just tolerate her loud outbursts and weird ways or will they accept her and love her for her differences? Will they notice at this age that she is not like them?
Will they wait with her in her processing pauses when she is thinking of how to respond? Will they start to skip over her because she sometimes needs a few more seconds to take it all in and assess before she can make a move? Can she keep up with the children who can walk?
It breaks my heart to think that inclusion may leave her excluded.
Saying that I have grown to love her slack jaw, flattened nose and almond eyes implies that I didn’t love them from the beginning. I absolutely did, but those are the physical features that cause people to double take and judge her, in turn making me afraid.
She is my role model. The enthusiasm and excitement that she wakes up with for each day is infectious has radically changed our family. I hope that those physical markers and the scars that make her unique are seen by others as decorations from a proudly won battle. She has fought very hard to sit at the table and everyone who can wait through the pause will be better off with her next to them.
In the car on the way to school, she verbally asks to dance until I turn to her favorites playlist on the radio. There is so much excited energy in the backseat, you can feel it without even looking at her. When we pull in the parking lot, she cheers and never tells me “bye” because she is in such a hurry to get inside to play – a word she does have time to sign to me as she pushes the car door closed.
Lying in bed right before sleep, where I do most of my obsessing, one night I wondered aloud to Ben, “Will Ellie always have friends? Will the typical kids like her?”
“Yes,” he groggily answered, his voice muffled and tired. “They won’t have a choice.”
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