Monday, September 11, 2017

Parenting Kids with Disabilities: Advocacy

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting / What You Can't See (Invisible Aspects of CP) / What Ableism Looks Like / Identity / Inclusion vs. Accommodation / Community

Dear Parents,

I would hazard to guess that advocating for your kids with disabilities is a huge part of what you do as parents.  First of all, thank you.  Your voices are so powerful and will sooner be listened to and respected than the voices of your disabled kiddos, unfortunately.  Fighting for your kid's rights, for the services they need, for the ones they don't need?  All of these things are so important.

I have two distinct memories related to advocacy from my childhood.  They both happened the same year.

[Image is: Me in a pink sweatshirt with iron on kittens on the front.  My walker is barely visible and I am just starting 4th grade at a brand new school.]
A LESSON IN SELF-ADVOCACY:

The first came when I told my mom that since it was my turn for show and tell again "Maybe [my teacher] will give me another ride up to the front of the classroom!"  Understandably confused, Mom asked what I meant.  So I happily told her how my teacher had moved my entire desk (with me in it) to the front of the classroom for show and tell, so I didn't have to move at all.  She said: "You can just have a little ride!"  I laughed and thought it was fun.  Definitely better than some of the other things she said about me.

Instead of laughing, though, Mom was upset.  "She doesn't need to do that.  You can walk up to the front of the room with your walker."

"I know," I said.  (Seriously, couldn't my mom take a joke?)

"Tomorrow, when you go to school and before show and tell, I want you to ask for your walker and tell your teacher, I can do it myself."

Whoa.  This just got terrifying.  Talk back to a teacher?

"Okay," I said, crabby now that Mom decided I couldn't have my awful teacher do one fun thing that made the kids laugh.

"No, I want you to say it.  Say, I can do it myself."

(Nooooo....)

"I can do it myself..." I mumbled, looking down at my blue sweatshirt.

"You have to say it louder than that so they know you mean it.  You can do things yourself and you need to tell your teacher that.  She doesn't need to be giving you rides to the front of the classroom."

"I can do it myself," I repeated, feeling like every time my teacher called me princess, called me different, and every time she let the other kids boss me around was my fault.

"Say it again.  You need to be able to tell her this.  She can't keep treating you like a baby."

"I can do it myself."  My voice was getting thick.

"I can do it myself," Mom prompted.

"I can do it myself," I repeated, and my voice broke.

I ended up in floods of tears.  Devastated.  Feeling to blame for the most awful of awful school years.  And for the first time in my memory, Mom picked me up and held me in the rocking chair.  She asked me what was wrong.  But I couldn't tell her.  I remember she held me for a long time.  And even afterward, I felt really vulnerable.

I don't remember a thing about that second show and tell.

Today, I can look back at that interaction and I can see what my mom saw.  I can see that my teacher was likely trying to save time by not having to wait for me to walk up to the front of the room, or figure out how to hold something up when I had my walker.  I'm sure my mom saw that my teacher pitied me.

Today, I see more - and I remember more.  I remember how my teacher didn't give me a choice that first time she gave me a "ride."  I remember how she just grabbed my desk and pushed it up to the front of the room.  I remember that she turned it so fast that I was dizzy, and vaguely afraid that the combination of fast movement, my CP balance and the slippery chair would cause me to fall.

Mom was right to teach me.  I think of her lesson often - every time someone offers me help - and I turn it down with a polite, "I got it."

ADVOCATING FOR ME:

There were also times when I could not advocate for myself.  It so happened that my fourth grade year not only gave me one of the most ableist classroom teachers ever, I also got an ableist adaptive gym teacher to go along with her.

My gym teacher was the lesser of the two evils until one day in spring.  Class was almost over, and we had been practicing some of the events for Track and Field Day to see that the adaptations would be suitable for me.

Just before it was time to go, she said: "You know you won't be able to get a red, white or blue ribbon like the other kids."

She said this like, "You know you won't be able to go to the moon like Neil Armstrong."  Like it was just a fact.

Her words stopped me in my tracks.  My spasticity kicked in at the unfairness of it all.  I was used to just taking an adult's word for things.  Not talking back.  Not questioning.  But this was just too bizarre.  I had to know more.  So I worked up my bravery and asked:

"Why?"

"Because there's going to be modifications on some of the events....but you can still get a red, yellow or blue sticker!"

Well, that just made me feel worse.  She said it like I could not possibly know the difference between a ribbon that signifies achievement and a sticker that might placate a toddler.

I went home that afternoon depressed and quiet.  Tara noticed right away and asked what was wrong.  I told her "nothing."  But we  never could keep secrets from each other, and soon, the whole thing came spilling out of me, after I made her promise not to tell Mom and Dad.

My sister has always been smart and even at nine, knew when adults had to know things.  The first thing she did was tell our parents.

Mom and Dad came to our room to talk to me.  Asked the teacher's name.  They said they were going to go into school for a meeting with her the very next morning.  I remember angrily, tearfully telling them not to, because "She's the teacher and she already made up her mind!  She makes the rules!"

My parents had that meeting and the next time I was in gym class my teacher told me I was allowed to earn ribbons after all.  Even on Track and Field Day, I couldn't forget that the ribbons were not legitimate.  My teacher already said.  The events had to be modified for me.  I shouldn't have been allowed to get ribbons but the meeting with my parents had forced the teacher into giving them to me.  It didn't even feel like I had earned them at all.

Even though it was a difficult experience, I think back on this a lot.  I know my parents advocated for me time and time again behind the scenes, at IEP meetings and in countless other ways.  For some reason, though, it's this instance that stands out to me.

My mom and dad took my word (and my upset) seriously and they did something about it.  They followed through.  They didn't just take my teacher's word for it.  And even though my ribbons felt fake, they felt a heck of a lot better to have than a page full of stickers.

WHAT YOU CAN DO:

1) Teach Your Child To Advocate For Themselves In Whatever Way They Can:

Pick a low stress time (or as low stress as possible) and talk to your kids about speaking up for themselves.  Role playing with toys really helps for these conversations.  Have your kid be the other character first, and you be your child.  Give their character some words to say to refute unwanted help, for example.  Then switch roles, so your kid can practice saying the words themselves.  My mom giving me a "script" to say did help me in later years.

For nonverbal kids, at the very least, teach them to say or indicate "no."  Practice at home.  When they say or indicate "no" make a point that you are paying attention.  You heard / saw that they said / indicated "no" so you are stopping whatever you are doing that they are not comfortable with.

2) Believe Them and Back Them Up:

If you find out something has happened after the fact and your kid is not being respected, first of all, believe them.  Your child's words have weight.  What they say, sign or spell matters.  If you find out something is not right make sure they know you take them seriously and then follow through and back them up.  (This is beautifully illustrated in a blog post by Ellen at EllenStumbo.com.)

3) Do Your Best to Make Sure Your Advocacy for Your Child is Centered on What Makes Them Feel Respected:

Keep communication open between you and your kids with disabilities.  Talk to them about school and what's happening.  What's going well and what they wish could be different and why.  Try to make this a natural part of your day.  Checking in with them because you care.

With school in session again, it's more important than ever that advocacy is discussed and implemented, so kids with disabilities can know they are valued.

2 comments:

  1. The gym teacher's reasoning is so odd to me. So sorry that happened to you! My parents advocated for me from day one and taught me to self advocate from pre school on.

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  2. It was so weird! (And your parents are pretty awesome!)

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