Monday, September 25, 2017

Parenting Kids with Disabilities: Conclusion

154 words
1 minute read

Previously on Summer Blog Series 2017: 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 / Advocacy / Autonomy and Consent / Conclusion


Dear Parents (Grandparents, Aunts, Uncles, Extended Family),

Thank you.

Thank you for reading this series.  Even if you only found a post here or there along the way.  My hope is that whatever post you found resonated with you, and will, in some way, help you help your child with a disability.

I've gotten to hear from a lot of you, and it has been so amazing.  But if you've not commented or gotten in touch yet, please feel free.  Let me know if you read the parenting series. If there was a particular post that resonated with you.  If you learned something you didn't know before.

You can find me on Facebook and Twitter.  You can also email me at toniasayscp@gmail.com with any questions.

[Side by side pictures of me at age 4, and last year.  I have the same expression, haha!)

***

Don't forget to connect on Facebook / Twitter / Instagram


Monday, September 18, 2017

Parenting Kids with Disabilities: Autonomy and Consent

954 words
7 minute read


Dear Parents,

It's hard to believe the final post of the parenting series is here already (aside from the conclusion post next week.)  If there's an area I am passionate about (and that I don't see covered often enough) it's consent and autonomy.

MEDICAL INTERVENTION WITHOUT CONSENT NEGATES AUTONOMY:

I found a letter recently, from an eye doctor in my hometown, who examined me when I was two years old.  It was a few pages long, and detailed symptoms I had, and tests the doctor wanted to try.  The letter ended by stating that the doctor did the best he could to give me these tests "given Tonia's lack of cooperation."

For context?

I lived  nearly the first full year of my life in the hospital out of medical necessity.  I needed heart surgery and  throat surgery.  I had to be trached and needed a feeding tube.  I was surrounded by medical professionals, and while the nurses loved me and took care of me, until family could come on weekends to visit - while those nurses did their best to rotate on a predictable schedule and stick with me whenever possible so I would not have trouble bonding, I learned early to fear doctors.  (When I mentioned this note from the eye doctor to my Grandma, she was quick to defend little toddler me:  "Well, of course you didn't cooperate!  You didn't like doctors!")

ABUSERS TAKE ADVANTAGE OF LIMITATIONS CAUSED BY DISABILITY:

Throughout childhood, I experienced more surgeries.  Physical and occupational therapy.  Countless people putting their hands on my body.  I was taught about strangers, and about being able to say no if people tried to touch certain places on my body, but I found myself unprepared when a child from school came to play and crossed boundaries in every way with my sister and me.

I said I was going to go tell our parents, but the other child blocked the door.  They took advantage of the fact that I could not move fast and made a point to keep us there.  Tara did manage to leave, but the child dragged her back into our room, leaving Tara's back scraped and rug-burned.

When Mom came to check on us, the child from school acted like nothing was wrong at all.  The moment Mom went back upstairs, the torment started again.

We were seven.

[Tara and me on our 7th birthday.  We're pointing to our teeth because Tara had lost one and had a permanent tooth grow in, while I was still waiting to lose any of my baby teeth.]

I could only (finally) tell our parents the next day, after the other child had gone home.

Over the last few years, I have seen more articles about parents teaching their kids about consent and respecting their autonomy, regardless of age.  But I often wonder, where are the kids with disabilities in these discussions?

If they, like us, have experienced the distinct lack of autonomy that comes with needing medical intervention starting at birth, we don't have autonomy.  We are often not asked if we consent to someone else putting their hands on us.

WHAT CAN YOU DO?

This probably sounds beyond scary.  How are you supposed to protect your child when they might need painful medical procedures to stay alive?  When you cannot be there watching every minute of every day?

First, know that autonomy and consent have been woven into every single parenting post thus far.  If you want, go back and read the tips in past posts.  If you don't have time for that, let me give you the bullet points:

1) Don't Assume Your Child with a Disability is Too Young or Cannot Understand:

Start young and teach your child to respect physical boundaries.  Teach your child names for body parts and that their body belongs to them.  Respect your child's boundaries whenever possible.  Talk about it together.  ("I saw you shake your head no, so I'm going to stop tickling you, because I respect you.")

2)  Laughter and / or Hesitation Does Not Negate NO:

Model and teach that even if they laugh or smile while saying / indicating no, even if they hesitate and then shake their heads, that is them putting up a boundary and it should be respected.

3) Teach the Power of YES:

Maybe you've heard "only yes means yes" lately.  As an alternative to "no means no" (which seems to have lost its meaning.)  Teach your child that saying YES means "This is okay."

4) Arm Your Child With a Way to Alert You or Others If They Need Help:

This might be a whistle they can blow, or a safe word they can say that you know means they are in a dangerous situation and need to leave.  Make it clear you will always believe them if they come to you about a boundary that has been crossed.

5)  Take the Time to Talk About Scary Medical Things:

Talk before and after.  Before, be sure to give your child a heads up (age appropriately) about what is going to happen.  After, be ready to listen.  Your child doesn't need to hear that they needed X procedure for X reason (although this might help some kids) they need to figure out what they're feeling.  They need to know their bodies still belong to them, even though something painful or scary happened.

Please don't leave your child with a disability out of discussions about autonomy and consent.

* If you are reading this and have a disability, please know that any harm you have experienced due to a lack of autonomy is not your fault.

***

Don't forget to connect on Facebook / Twitter / Instagram


Monday, September 11, 2017

Parenting Kids with Disabilities: Advocacy

2,203 words
17 minute read


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.]

TOO SOON FOR SELF-ADVOCACY:

TW: Emotional abuse of a child

The first comes when I mention it's my turn for show and tell again:

"Maybe [my teacher] will give me another ride up to the front of the classroom!"

"What do you mean?"

"Well, the last time it was my turn, I was going to share the picture of [my new baby cousin.]  And [my teacher] said: 'You can just have a little ride!'  Then she just pushed my whole desk up to the front of the room, with me in it!  It was so funny!"

I don't add that my teacher didn't give me a choice that first time she gave me a "ride."  She just grabbed my desk and pushed it up to the front of the room.  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.

It was too quick and disorienting, but it made the other kids laugh.  It was better, her making them laugh about me than teaching them I couldn't do anything for myself, or calling me "princess."

"She doesn't need to do that.  You can walk up to the front of the room with your walker."

"I know," I say.

"Come here and sit down.  I need to talk to you."

I don't want to.  I just want this to be over.  But I do it anyway, because I have no choice.  (Just like in school.  I have to go along with what the teacher wants, or I'll be in trouble.)

"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'm crabby now that it's been decided I can't have my awful teacher do one fun thing that makes the kids laugh.  "I'll say it."

(Tomorrow.  Or I won't.  No one will know if I don't.  I'll be at school.)

***

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

(Nooooo....)

"I can do it myself..." I mumble, 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 repeat, feeling like every time my teacher called me princess, called me different, and every time she let the other kids boss me around, it's been 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 is getting thick.

"I can do it myself," I'm prompted, in a louder voice.  Angrier.  "No one's going to listen to you if you don't speak up."

"I can do it myself," I repeat softly, feeling humiliated.

"Louder.  You need to say it louder than that."

"I can do it myself."  It's not any louder.

(I can't say it louder.  This is actually as loud as my voice can go right now.)

"You need to be able to tell people these things.  Or else they're just going to keep doing things for you.  Say it again."

It's getting harder to get sound out.  My voice is getting tight.  CP is taking over where it doesn't usually, because I'm so stressed.

"I can do it myself."

(They'll laugh at me.  They'll help me anyway, because they think I'm a baby.)

"You've got to make your teacher believe it.  'I can do it myself!'  Say it just like that."

"I can do it my--"

I break.

I'm sobbing.  Devastated.

(I'm going to be in so much trouble at school tomorrow.  Will my teacher put me in the corner like the bad kids?)

I know I'm to blame. I should have known if I just told the teacher and the other kids, "I can do it myself," none of this would have happened.

But how was I supposed to know?  It's never ever been okay to talk back.  I have to listen to my teacher and do what she says...right?

But no.

It's wrong.

Because I'm wrong.

I'm still crying and I can't stop.  I have to stop.  But I can't.

***

I'm picked up and carried to a chair in the living room.  I'm in the chair.  I'm being held in the chair.  The chair is rocking.

(What is happening?)

"What's wrong, baby?"

(Baby?  I'm so confused.  I just got yelled at forever about not talking back to my teacher...  It's pretty obvious what was wrong.)

I can't say anything.  All I can do is cry into my hands.  Hide my face.

I don't know what's happening, or what to expect.  One minute, I'm being badgered to tears and the next I'm being rocked?  By the same person?

(When am I going to get yelled at again?  When will this be over so I can get up and get away?)

This is terrifying.  I feel so ashamed.  So bad about what my teacher's doing.  So bad about failing to do the thing I'm supposed to do.

I can't make eye contact.  I just stared at the dark blue fabric of the chair.  At the little brown dots.

(I just want to be done.  Please, let me get down.)

***

It feels like it lasts one thousand years.

Afterward - when being held is over and I finally am allowed to get down - I feel like all my movements are slow motion.  Like I have to be super careful. I don't yet know the word vulnerable.  I just know it feels like there's too much air on my skin.  Even though I'm wearing a sweatshirt and jeans.

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

***

Let me be clear: It was never my job as a nine year old child, to tell a grown woman in a power position over me not to do something.

I was not comfortable talking back to people in authority over me, ever.  And heaping all of that responsibility on a child's shoulders was too much.  I was still a child, and that should have been recognized and respected.

I should have been able to rely on adults in my world to speak up for me.  Not bully me and then comfort me when I broke under their pressure.

***

ADVOCATING FOR ME:

It's dizzying, the never knowing what to expect, especially when both extremes happen in the same year. 

One moment, it seems, I'm being harassed into speaking out against an adult's ableism, and the next?  The adults in my life swoop in to save the day.

My adaptive gym teacher isn't nice, but that also means she's not "too nice" in the way my classroom teacher is.

One day in spring, gym class is almost over, and we've been practicing some of the events for Track and Field Day in advance, because my adaptive gym teacher changes things so I can do them.

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

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

Her words stop me in my tracks.  My legs get tight like they always do when things are unfair.  I'm used to just taking an adult's word for things.  Not talking back.  Not questioning.  I had to just follow along, usually.  But this time, I have to know more.  So I work up all my bravery and ask:

"Why?"

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

I feel like crying.  She says this like a red, yellow or blue sticker is the same as a red, white or blue ribbon.  The ribbons everybody else in the whole school gets to earn.  Everybody but me.

She's talking to me like I'm a baby.

Just like all the other people at this school.

***

I'm quiet on the bus on the way home.  I feel so small.  Like I don't matter.  Like no matter how hard I try, it doesn't matter.

"What's wrong?" Tara asks.

"Nothing," I tell her, but I know she doesn't believe me.

We can't keep secrets from each other, so by the time we're home, I have to tell her everything. 

"[My gym teacher] said I couldn't win ribbons on Track and Field Day..." I manage, fighting tears.

"What?" Tara asks.  "That's not fair."

"I know," I agree.  "Don't tell Mom and Dad...please.  There's nothing they can do, anyway.  Hey, where are you going?"

"I'm just doing something..." she says.

I'm so depressed I don't even care what she's doing.  Until Mom and Dad came in.

"Tara said your teacher told you you couldn't get ribbons on Track and Field Day?" they ask.

"You said you wouldn't tell them!" I accuse.

"She was right to tell us.  Did your teacher say why you couldn't get ribbons?" they ask.

"Because she has to do it differently for me!  She said I could only have stickers!"

"What's her name?"

I tell them.  "Why?"

"Because we're going to have a meeting with her tomorrow morning."

"No!  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.

In this second instance, 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.

***

Don't forget to connect on Facebook / Twitter / Instagram


Friday, September 8, 2017

Review: The Fosters 5x09 Prom

3,931 words
30 minute read


It’s the last twin recap of The Fosters 5A.  Honestly, this could not have come fast enough, and neither could the news that “ There’s been some response from people in the disabled community about how we have talked about Jesus and that has really informed how we’re talking about him in the next season, how we have structured his story in the next season,” according to Peter Paige.  

Tara and I are both cautiously optimistic that the change we have seen in the last 24-48 hours with regard to how the writers are discussing Jesus in interviews will translate to the writer’s room, and indicate a more respectful portrayal is on the horizon for 5B…



Monday, September 4, 2017

Parenting Kids with Disabilities: Community

1,317 words
10 minute read

Previously on Summer Blog Series 2017: 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 / Advocacy / Autonomy and Consent / Conclusion


Dear Parents,

“I know JUST how that lady talked to you because that has happened to me a lot in my life.”

“Mine is the same way.”

“It's so nice to know that you feel similarly, because I felt so conflicted about being frustrated by it.

There was a time when I never heard these words of solidarity, when I never felt the connection that comes with giving and receiving understanding in such a way that only happens when you speak to someone about an experience who has endured the same.  Community is powerful.

[Image is white text on a blue background that reads: I will always be there for you Tonia and Tara.  Underneath are three flowers.  Sweet, supportive words from someone in our community.]


Your child has community in school and they have family at home, and both are vital.  But there is also a need for kids to connect with other people with the same disabilities they have.

EARLY MEMORIES OF COMMUNITY:

Growing up, my connection to the disabled community was limited to the other disabled child in my preschool.  Or the classroom that was a catch-all for a child with any type of disability when I was seven and went to summer school.  I had so much internalized ableism then, that I used to come home and tell my sister how “cute” the older boy in the wheelchair was, not because I had a crush, but because he was more severely impacted by a disability and could not speak verbally.  It’s the same reason I wanted to always be around the Deaf boy, though we could not communicate.

In middle school, I was again grouped with the only other girl who was disabled in my grade.  We sort of became friends, based on proximity, but did not have much in common.  Once, she swore at me, and called me a vile name in art class and the teacher asked her if she was okay, ignoring me altogether.

Suffice it to say, growing up, forging a sense of community was difficult.  My disability was never framed as anything more than something I needed to improve upon.  Adults in my world concurrently treated children like me with too little understanding and too much pity.

If you want the unvarnished truth, I grew up thinking I was supposed to be nondisabled.  This is not to say that I was out of touch with my reality as a child with a disability.  That fact was never lost on me.  But I had a constant sense of, “I’m just like them, I just use a walker.”  “I’m just like them, I just use crutches.”

My goal was always to be “just like them.”  The problem came when I constantly realized that I would fall short.  That I would never be just like them.  That actually, no matter how hard I practiced, how much I stretched, how strong my legs became, I would never walk independently.

SUMMER CAMP:

It was in sixth grade when my mom raised a concern at my first middle school IEP meeting that I was not accepting my disability.  She was right.  I wasn’t.  And I’m glad she was paying attention.

The following summer was my first at Camp Courage.  I was thirteen, and it was the first time I’d ever been around so many other kids with disabilities.  For the first time, I didn’t feel like I stuck out.  I had a wheelchair, yes, but so did almost everyone else.  The nondisabled were happy to help.  I never felt like a burden or like I brought them sadness or pain because of what I could not do.  The name of the game was adapting.

So, we all got to do arts and crafts and make homemade pizza and eat dinner for breakfast, but we also all got to swim and horseback ride and try activities we didn’t get to do at home.  We got to have shaving cream fights and go to dances.

I made a best friend, and we came back to camp for two more summers.  My last summer there, there were four of us.  Four best friends, all happy to be there, loving the fact that for this one week every year, everybody was “the kid in the wheelchair,” so no one stuck out.

I had a long way to go.  I still looked upon my cabin-mates with pity, believing that I, (the least physically impacted by disability in our friend group) was “lucky” and would often respond when a friend needed a hand, because “I could do more than they could.”  I was exposed to many different types of disabilities and I learned not to stare at other kids who looked different.  I didn’t ask them about their disability because there, no one wanted to talk about that stuff, we all just wanted to have a good time.

It was the beginning, though, of self-acceptance for me.  It was extremely important that in those difficult teenage years I had a place where I could just be myself and I didn’t have to be the one disabled kid in the sea of nondisabled kids, constantly reminded of what I was missing.

I finally started to realize it was okay to be just who I was.

Related:  Crip Camp Reminded Me How Camp Changed My Life as a Disabled Teenager

MENTORS:

After camp, throughout high school, college and even beyond that, I surrounded myself with nondisabled friends.  Even when I moved into accessible housing ten years ago, I didn’t forge friendships with many of the others who live here.  It was not an automatic community by any sense of the word.

Because of this, again, my eye was often drawn to all the ways I was unlike my peers.  They could be spontaneous.  They could go in the haunted house at the State Fair.  They could walk and run.

They just could, while I could not.

Over the past couple of years, though, since I started blogging, I have slowly started forming my own little community.  As of now I have four people I know I can reach out to anytime, about anything.  Three of them have CP, and the fourth uses a wheelchair full-time.

The thing is, all of these people are younger than me.  I have never had a mentor with my same disability.  Definitely not when I was a child, and not now.  However, I believe we create what we need in life, and over time I have been able to create community.  While I know not all of them look to me in the sense that I am a mentor (and that’s fine) I try to instill in the 20-somethings not to let the sense of community stop with them.  I encourage them to be there too, for younger kids with CP.  When they say, “I wish they had you to talk to like I do,” I say, “They don’t have me.  They have you.  They’re lucky to have you.”

Passing on this sense of belonging, of being a part of something will help the community and the bond among us grow even stronger.  For those with CP, I point out the physical characteristics that make us like each other, that mean we are a part of this very particular community, with specific facial features and movements and that it’s not a bad thing, because it means that we belong somewhere.

Perhaps, the most rewarding is being there for a child who also has CP.  She calls my sister and me her “role models” and wants to be like us when she grows up.  It’s flattering.  And it’s beyond amazing to see someone so much like me, growing up before my eyes.

To think that once upon a time, I thought that I was the only one.

***

Don't forget to connect on Facebook / Twitter / Instagram


Friday, September 1, 2017

Review: The Fosters 5x08 "Engaged"

6,637 words
51 minute read

FAMILY DINNER - KITCHEN:



Mariana: We moved prom up this year, so we don’t have to compete for venues, but now we’re way behind.  So I was hoping my lovely family could pitch in?
Jesus: Can I even GO to prom?
Callie: I’m probably not gonna go…  Aaron’s in college.  
Brandon:  Yeah. Same here.
Tonia:  So…is no one gonna answer Jesus’s question?
Tara: It is referenced later that Moms have been actively avoiding conversations that may lead to “outbursts.”  However, in doing so, Stef is literally pretending Jesus does not exist here.  Please don’t be like Stef.  All people appreciate being acknowledged and feeling heard - disabled people included.