Monday, July 3, 2017

Parenting Kids with Disabilities: Presuming Competence


Dear Parents,

When I was seven years old and got my turn at helping the teacher in the morning by leading the pledge of allegiance, telling my classmates what was on the lunch menu and other such important things for second graders to know, I was nervous.  I didn't like talking in front of people, but I did like the idea of getting to do important jobs and helping the teacher.

Throughout the year, each child got a turn.  When mine came, though, every couple of words I spoke were interrupted.  A fellow second grader could not stop giggling, pointing at me, and telling her friend, "She's so cute!"

She meant it in the way a baby is cute.  This girl treated me just like that the entire school year.  Even though we were in the same grade, in the same class, even though I sometimes got better grades than her, she always treated me like I was beneath her.

[Image is: Me in 2nd grade, dressed in a hideous red sweater with a white collared shirt beneath and a black bow at the neck.]

Eight years later, when I was fifteen, a teacher in the Special Education department who was in charge of my IEPs brought me in for some testing in areas of math, reading and writing.  While I failed spectacularly at the math section, this teacher was shocked to learn that I tested at college level in reading and writing.  I still remember her over-the-top reaction when she asked if I knew how to spell omniscient and I did so without hesitation.  Without mistakes.

She often spoke to me in the same manner as the girl in my second grade class.  Like I was younger than fifteen.  Like she was shocked that I (somebody with a disability) could read and write so well.

While I've experienced a couple examples of this in my life, kids who are autistic, kids who have Down Syndrome, and kids with brain injuries experience a lack of presuming competence at an even higher rate.

Below, is a clip from the TV series, The Fosters.  In it, Jesús (16 years old, and recently home after being hospitalized with a Traumatic Brain Injury) and his family are celebrating his homecoming:


When Jesús's moms bring in the pizza, we can see that he tries to say something to his girlfriend, Emma, who's standing beside him.  He says "I don't--" but she cuts him off before he can finish his thought and tells him, "It's okay."

 Jesús asks Mama what the round thing is on his pizza.  She clarifies that it  is pepperoni.  His favorite.  Jesús says no.  Emma then says "You love pepperoni.  It's your favorite."  Though he says "no" and "I don't want it" multiple times, his family still insists that he try it.  At one point, Moms even take the pepperoni off Jesús's pizza with their hands and then call it a "cheese pizza."  As if he would not know the difference.

Tara said it best in our recap of the episode:  "Now that he is injured, his words fail to have weight. Jesús knows that, based on how he is treated.  He has told them no multiple times, but they are not listening."

The scene ends with Jesús throwing the plate and the pizza in frustration.  That, as Tara says "is the only communication the family takes seriously."

WAYS TO PRESUME COMPETENCE:

Even if your child cannot prove they understand you, assume they can. Here are some places to start:

1) Talk to your child in an age appropriate way.  If they are nine, speak to them as if they are nine. While some kids (living with brain injuries, for example) may need you to speak in shorter sentences, know that it's because they need less to filter, not because they know less now.  You can still show them respect by treating them their actual age and not using a "baby voice" on them.

2)  Respect your child's "no." Understand that brain injury, intellectual disability, autism and any other disability does not negate your child's right to say, spell, or indicate no, and for it to be respected.

3)  Know that behavior is communication.  Something like 90% of communication is nonverbal.  Accept your child's nonverbal communication as valid.

Presuming competence with your child who has a disability communicates respect.  Assume your child is capable of understanding you.  If you haven't thus far, it's not too late.

Start today.

2 comments:

  1. Good advice! I always presume competence in my brain injured friends. I say to myself "Its their body. They must know what they are doing". Ask, don't assume. I even wrote a bit about this in my new film where the characters respect each others "nos". Its a bit harder with kids because sometimes you do have to do a bit more convincing to get them to conquer fears like an irrational fear of the dark etc and parents may not be sure what to do. In the case of the clip I think the family is dealing with a moment where they are realizing Jesus's brain has changed and are thrown off by this. I'm guessing Jesus adored pizza before the injury and now he doesn't so they are frightened and unsure of what is going on. Its driven by fear more so then disrespect. I don't follow that series so I could be wrong. The kid in your school however was showing disrespect. I noticed people with speech impairment experience the most disrespect.

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