Monday, August 28, 2017

Parenting Kids with Disabilities: Inclusion vs. Accommodation

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

Dear Parents,

"Inclusion" sometimes feels like a dirty word.

It's not supposed to be.  It's supposed to be this great thing.  This policy that means everybody benefits.  But when you are the kid being "included" and you know that nobody wants you there, because you "go so slow"?  It doesn't feel great.

I think it's because inclusion is usually something people have to do, not something they choose to do.  It often means more work for a teacher, and maybe it means kids have to spend time around a kid they usually wouldn't spend time around.

The thing is, as a former "included" kid, we can tell.

We can tell that we are a letdown.  The reason the rest of the kids can't do X.  The reason plans might change due to lack of accessibility.

When we grow up, we are keenly aware of the continual expectation to justify our worth.

Because being included means that we, and people like us, must have sufficient use and value to nondisabled people. We must constantly prove that our benefit to you outweighs the inconvenience of having us in your classrooms.  Not because we are human and deserve an education.  We are included because of what we can do for the nondisabled public.

Honestly, it feels gross.

ATTEMPTS AT INCLUSION:

In school, there were two places where "inclusion" felt especially forced, and especially isolating.  Gym class and recess.  And while not a lot could be done about the perpetual state of inaccessible playgrounds in the '80s, gym class was another matter.

It started with me doing adapted warm ups.  If the class was in a unit on team sports like floor hockey, I was either expected to join in with my crutches (a nightmare) or relegated automatically to the sidelines to "keep score."

I cannot tell you how many times I have been scorekeeper in gym class.  It's truly the most boring thing.  I watched all the other kids play and got to note when each side got a point.  When we played kickball, I was automatically assigned a "runner."  Running was the whole point of kickball.  Sometimes, I was in a completely different location than my classmates working on separate exercises altogether.  The complete opposite of being included.

So why am I talking about this in a series meant for parents?

Because I hope to shift your focus from inclusion to something that truly helps disabled kids feel a part of things and that is accommodation.

WHAT'S ALL THIS ABOUT ACCOMMODATION?

Everybody needs accommodations.

They do.

As nondisabled people, though, you don't need to think about all the ways you are automatically accommodated in society.  You can get into buildings.  Into bathrooms. Doorways are usually wide enough for you to fit through without trouble.  You can play sports if you want to.  You can travel without worrying if you'll be able to bathe or get into bed in the hotel.  Without worrying that your way of moving through the world might not arrive with you at your destination.  That it might arrive broken.

When your kid with a disability is out in the world, they are in a place that is not built for them.  And just because inclusion is the policy does not mean your child will be included.  It does not mean they will feel included.

As a kid, I didn't always know what kind of accommodations I needed in a given situation.  I just wanted to be able to participate in as similar a way to everybody else as possible.

WHAT CAN YOU DO?

If Possible, Send Adaptive Equipment Options on Gym Days:

If your child uses various adaptive equipment, and it's possible for you, consider sending options with them to school on gym days.  That way, if they're watching a movie in gym class, your kid having their crutches wont be a big deal.  But if they're playing kickball, they'll have their walker.  And if the kids are playing floor hockey, your kid can have the stability of being in their wheelchair.

Communicate with Your Kid's Teacher(s):

Let your child's teachers know about your whole child.  How they best learn.  What they need to be successful in the classroom.  If your child has an IEP, check that it is being followed.

Communicate with Your Kid:

Ask them what works best for them in a given situation and take them seriously when they tell you.  Work on skills like asking for help when necessary and regular kid stuff, like how to ask another kid to play with them.  (Sometimes this social stuff gets missed when your kid has a disability.)  You can do this by playing.  Have your child's doll or action figure ask yours if they want to play.

When Possible, Give Your Kid a Heads Up About What is Coming Next:

If science class means your kid is going to be going outside during class, that's something your kid will want to know so they can start thinking about how they can adapt.  They may need time to get used to the idea of doing something new.

If there will be a field trip or any new environment that your child will need to navigate, ask their teacher about the possibility of sending a video or pictures.  (Is your kid going on a field trip to somewhere that has a website?  Ask for that, and look at pictures and videos with your child.)  For nondisabled people, who have no trouble navigating in a new environment, you likely don't need a heads up about these things because you already know things will work for you.

Being able to see physical places and details beforehand can help you and your child figure out ways they can move from place to place in as stress-free a way as possible.

Find Ways for People at School to Meet Your Child Where They Are:

Know that just being in a classroom with typical kids is not enough.  Your kid is going to want to feel wanted there.  Welcomed there.  But often your kid might be left out.  One of the best things other kids can do is to ask yours if they want to play or be in their group for a project.

If your kid is comfortable, you could go in and speak to the class about your whole child.  Addressing disability is necessary, but so is discussing all the ways your child is just like the other kids in class.  Normalize disability and emphasize it is not sad.  That your child is used to living the way they do, and it feels normal for them.

[I love this picture, because it shows just how seamless accommodating can be.  My sis and I are 16 months old.  I'm in a baby walker, and my sis is standing next to it, having brought a doll for us to play with together.]

No More, No Less:

Keep in mind that, likely, all your kid with a disability wants is to experience school in as similar a way to their peers as possible.  No more, and no less.  So keep that in mind when considering accommodations.

Ask yourself questions:

What is the goal?

What accommodations does my child need to successfully attempt or accomplish this goal?

Involve your child in these conversations.

If your child is nonverbal, know it is still possible to include them in conversations that concern them.  You may have to rephrase questions (maybe to a yes/no format, for example). Remember that behavior is communication.  And remember that your child may need time to process your questions and / or think about what their answers are.

But as your child is the one who needs the accommodations, don't forget to involve them.  Listen.  And respect whatever they are able to communicate.

Accommodating your child's needs communicates respect for them, whereas inclusion often feels like it is rooted in a reluctant sense of duty.  I think all of us would always rather be treated with dignity, than as an obligation.  I hope these tips help you make the world a bit more accessible for your child.

Friday, August 25, 2017

Review: The Fosters 5x07 "Chasing Waterfalls"




Time for another twin recap of The Fosters. Jesus was absent this episode, but that doesn’t mean we don’t have plenty to say about him (and also some thoughts on Grandpa Adams as well.)


Monday, August 21, 2017

Like Looking in a Mirror, Part 3

Maybe someday the novelty of spending time around someone who is just like us will wear off...but it hasn't happened yet.  Maybe you were reading in the winter of 2015 when we first met, or the summer of 2016 when we read some poetry together.

This time, for the first (real) time, we got to travel to her.

[Image is: Us looking at my phone together]
We celebrated.  Laughed.  She took tons of silly selfies.  Showed me all about camera filters.  We took pictures together, and have 6 glorious seconds of video which shows all three of us screaming, "No!" when my sis realized she had accidentally hit 'video' instead of taking a picture.  

We talked about middle school.  About slime.  About Slinkys.  About whether our brothers also have CP.  (They don't.)  

Her reaction to finding this out was the best thing I have ever heard:  

"Oh.  That's sad."

She spent time trying to figure out which of us she is most like.  I think she's a lot like Tara in personality, and gait, but as for a physical resemblance, this kid could be my mini me.  It's so wonderful.

Just being together is so powerful.  There is nothing better than that feeling of belonging that comes with being where "your people" are.  If you get to do this all the time, notice it.  Breathe it in.  Don't take it for granted.  It is beyond amazing.

As amazing as the moment when, she said, very matter-of-factly:  "I don't know how to describe you guys.  Are you friends?  Or are you family?" 

Parenting Kids with Disabilities: Identity

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


Dear Parents,

When you think of your child's identity, what comes to mind?  Their color?  Their gender?  Maybe it's not something you think of much, because your child's identity - in many ways - is still forming.  But, if your child has a disability?  That's also an important part of their identity.

When I was growing up, I hated talking about CP.  I still have a hard time saying the whole diagnosis out loud (or writing it) because the first person I ever heard pronounce it correctly was a teacher that was super ableist.  I honestly just preferred that no one talked to me about it at all.  Ever.  Because I didn't identify as disabled.  I identified as nondisabled.  I was "just like everyone else" to me.  I was surrounded by nondisabled kids and adults.  It was the only example I had for what I thought people should be.  So I hated that I stuck out.  I hated that I had something that made me different.

It felt exclusively negative to me.  Like a giant eye staring at me because I was "that girl" with CP.  I never saw myself represented in the media, and if I did, the character was tragic.  One dimensional.  A plot device to pull at the heartstrings of nondisabled audience members.  Well, meanwhile, I felt like nothing and had to look away.

[Image is: Me at age 8.  I'm standing with new crutches but not looking directly at the camera.  My smile is uncomfortable.]
Chances are, your kid just wants to feel like they are not different.  And that's valid.  I think a lot of the reason why nondisabled kids have more self esteem and less mental health issues than kids with disabilities is that they are almost exclusively surrounded by people like them.  Where for us it's rare to find "our people."  And the people we do find, we might not have a lot in common with, so we resent being grouped based on disability alone.

If your child is uncomfortable talking about their disability, first and foremost?  Respect that.  Don't force them to talk about it with you (especially if you are nondisabled.)  Take their cues and let them lead the way.  Let them bring it up.

That doesn't mean never talk about it again.  Because that does imply shame, and if your child can't stand to hear the name of their disability spoken out loud, they are already feeling a lot of it.

So what can you do?

Try Speaking About Other Kids or Adults with Your Child's Disability...Positively:

Are you friends with someone who shares your kid's diagnosis?  Try talking about them in a flattering way:  "Yeah, he got the coolest orange wheelchair!" or "She told the best joke!  It was so funny!"  Hearing you build up others like them will take the pressure off your kid, and it will also allow them to see that "Mom or Dad or Grandma really likes hanging out with people like me."

Find Genuine Ways to Compliment Your Child That Don't Ignore Disability:

"Maya, You tell such great stories!  I love how you use your whole body to act them out!"

"Noah, You're so smart!  You're always figuring out ways to bring your toys with you!"

"Stephanie, You care so much about how other people feel.  You're a  great friend because you never want anybody to feel left out."

Find Examples in Media of Kids Like Yours Doing Something Your Kid Enjoys, Watch Them Together:

Kennedy YouTubing

Fox Sewing

Sami Doing Her Cousin's Makeup

Atticus Skating

Brooke Dancing

Sparsh Singing

Rhema on Bars and Beam (Gymnastics)

Give Your Kids Opportunities to Connect to Other Kids Like Them:

Growing to embrace their disability as a part of their identity is a process.  It will not happen overnight. But something that will help them get there is the opportunity to really connect to other kids like them.  Do you have a family camp you attend every year, geared toward families of kids with disabilities?  Great!  Did your kid make friends with the kid next door who has Down Syndrome like them?  Amazing!  Nurture that friendship!

Pay Attention to How Your Child Is Treated Both at Home and Away From You:

Is your child getting the message that you respect them?  Do your actions communicate respect?  We know how important it is to tell kids they are loved, but kids with disabilities also need the message that they are respected.  Unlike with nondisabled kids, respect is not necessarily a given.  So tell them:

"I respect you.  Your feelings matter.  You deserve to be treated in a way that makes you feel safe and happy to be you."

Make sure your child knows they can come to you if someone at school or other places is singling them out for their disability.  Ask questions, often, like:

"Do you feel safe at home/school?"

"Do kids (or brothers and sisters) treat you the same or different?"

"Does the teacher (or Mom, Dad, other family members) treat you the same or different?"

"What's fun at home/school?"

"What's not fun at home/school?"

But also know, they might feel sad and ashamed.  So pay attention to how they act when they get home from school or another location.

If your child is nonverbal, keep working to find whatever communication method will work for your kid.  Know that behavior is communication and receive it as such.  Stop in unannounced if you get a feeling that things aren't right.

Your Child Needs You to Be Okay With Their Disability:

So be mindful of how you talk about it.  (Does it mostly come up in conversation for being negative?  Does it come up in conversation solely as an obligation?  Do you feel bad your child can't do X?  Your child probably knows it.)

So practice discussing disability positively.  ("Your disability means you have connections to lots and lots of people who are like you.  They move like you/look like you/speak like you and that's great!  I love you so much that I'm going to keep looking until I find them.  Because I don't want you to feel alone."

Know that in many cases, if asked if we could get rid of our disabilities many of us would say no.  We don't want to get rid of the thing that plays such a big part in making us who we are.  We just want to get rid of the ableism surrounding us that makes us feel inferior for being who we are.

If you can accept your kids and their disabilities, parents, it's a powerful first step toward your child being able to accept themselves.

When I (Finally) Embraced Disability as a Part of My Identity:

As a teenager, I met a few friends with disabilities, but we only saw each other once, for a week out of the year, for three summers.  Otherwise, I kept with my trend of having exclusively nondisabled friends.  They would say things like, "I thought about calling you and Tara to come over this weekend, but we were all jumping on the trampoline and I didn't want you to feel left out."

(Um...so telling me that you were going to include us, but thought better of it, is supposed to make us not feel left out?)

At 18, I started attending a church, that initially welcomed me with open arms and made me feel accepted.  As soon as the third time I came, though, a well meaning woman told me she had a vision about me and God.  In her vision we were dancing, and she did not hesitate to tell me that I was "standing up."  That was the first time somebody there told me that my disability was not acceptable.  I chased that initial acceptance like a high for eight more years.  My self-worth was nearly destroyed in the process.

Around the time I stopped attending church, Tara and I moved into accessible housing.  A place where all of our neighbors are like us.  And while we were not friends with all of them, we did get close to one, who is now our neighbor across the hall.

It all really changed, though, when I started this.  Blogging.  Writing about CP and how it impacted my life.  Because of this, I got to connect with parents like you (some of whom have kids like I used to be.)  Because of this, I got to connect with other adults like me, who had the same experiences I did.  I got to make friends with people who accept me and truly love me for all of who I am, disability included.  Because they get it.

Because they're like me.

I sincerely hope that your child does not need to wait until their 30s to find this level of acceptance.  I hope this post helps you in your journey to both support and respect your kiddo as a whole, amazing human.

So that they can start loving themselves, ASAP.

Thursday, August 17, 2017

Review: The Fosters 5x06 "Welcome to the Jungler"



JESUS, STEF AND LENA - KITCHEN:


Stef: Did you know that dropping out of school is illegal?  
Lena: California is a compulsory education state.  You have to go to school until you’re 18.
Jesus: What?  So you’re gonna arrest me?
Stef: If I have to.
Tonia:  Oh, perfect.  I’m so glad we’re starting off this episode with yet another threat of institutionalization. <– Sarcasm
Tara: Completely jarring.  Completely unrealistic.  Completely unnecessary.


Review: Mia Lee is Wheeling Through Middle School by Melissa and Eva Shang

So, it's a rare occasion when I get the opportunity to post a positive review on media here.  But believe me when  I say that Mia Lee is Wheeling Through Middle School is a book you definitely want to check out, especially if you have a kid who uses a wheelchair.  (Or, if you use a wheelchair yourself.  Or if you love a good story.  Basically, everybody could benefit from reading this.)

[Image is: several old books lined up on a shelf]
Mia Lee is brand new 6th grade student at the start of this book.  She has a best friend from elementary school, and she is pretty excited and intimidated by all of what sixth grade will bring.

This book is a rare find, in that, its protagonist is disabled and its written by an author with a disability - a middle school girl with Charcot Marie-Tooth disease, a form of Muscular Dystrophy (Melissa Shang) and her older sister Eva.  That authenticity carries through the entire story.  Because while we don't forget that Mia is in a wheelchair, the story does not center around it.  She's not a hero or an inspiration.  Accessibility issues are not nonissues here, as we are with Mia when she goes to a friend's house and navigates stairs.  She does not face ableism that is dropped or unacknowledged by the author.

Mia is a normal kid.  She stands up to bullies, and she also makes bad choices, too, like taking her aide's keys and seriously considering breaking into a locker.  She has a hobby that she likes a lot - making stop-motion videos.  She has friend problems.  She has crushes.  She has a mom that is sometimes overprotective, and with whom she clashes at times culturally.  (Mom speaks Chinese and Mia understands it well but does not speak it well.  Mom loves Chinese food, Mia doesn't.)  We always know how the ableism Mia faces makes her feel, and because of that, the reader never ever gets the sense that it's okay to treat someone the way Mia is treated at times.

This is a very real portrayal of being a middle schooler with a disability.  But it's also funny and light  She has a great relationship with her older sister, too, which was nice to see.

Seriously if you have a 9-12 year old in your life (but especially one with a disability) check out this book with them!  It's not expensive, and I'll even link you, so you know exactly where to find it:

Mia Lee is Wheeling Through Middle School

Monday, August 14, 2017

Parenting Kids with Disabilities: What Ableism Looks Like

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) 

Dear Parents,

Ableism.

It's an -ism lesser known
Less understood
Because it's less discussed.
So let's do it.
Let's talk about it.
This ableism -
What is it -
Exactly?

Ableism is
Discrimination
Against
Disabled
People.

Your kids
With disabilities
Face it every day.

It looks like
Someone mocking
Your child for how
Their disability
Makes them look
Or move
Or speak.

It looks like
Someone dismissing
Your child's word
Because their disability
Means society
Does not take them seriously.

It looks like a pastor
Taking away your child's mobility aids
And insisting
They walk without them.
It's when that pastor
Prays for healing -
For your child to be delivered
Of something that actually shapes
Your child
Into being who they are.

It looks like
A high school kid taking something
Away from your kid
Without consent
And leaving
Because they know
Your kid can't go after them
To get it back.

It's the aide in middle school who
Makes your child feel alienated.
Who reports back to you if
They do something the aide
Does not approve of.
It's making your kid feel
Like there is a double-standard
In place.
One for the other kids,
And one for them,
Because they're disabled.

It's the teacher in elementary school
Who denies your child ribbons on
Track and Field Day,
Because events need to be
Modified.
Because your child
Has a disability.
They offer stickers instead.
Your child feels slapped.
Degraded.

It's when a therapist mocks
Your child's walk.

It's when your child's "no"
Is disregarded.

It's when your child is called
Lazy.  Uncaring.  Inattentive.
When the reality is
Their disability is
Invisible.

It's when your child's adaptive equipment is
"Too heavy."

It's when your child's negative
(But completely valid)
Feelings
Are written off as a symptom
And not treated as legitimate.

It's when your child is regarded
As a list of symptoms.
As broken.  As damaged.
As flawed.
As less valuable.
As less than whole.

It's when your child is blamed
For an inability to control their bodies.
When their actions are viewed as
Misbehavior.  As intentionally
Aggravating.
When, in fact, they are trying
So hard, always,
To stay in control.

It's when a stranger asks "What's wrong with him?"
Or, "Did you know before you had him?"
Or says, "She's too pretty to be in a wheelchair,"
Right in front of your child.
Or pushes that wheelchair
(With your child in it.
Without asking.)
Without regard for the fear they are striking
In your child at that moment.

It's when media constantly paints your child
As a burden.
And being disabled
As the worst fate ever.

[Image is: Me, holding a copy of the book Me Before You, not smiling]


It is loud
Like your child being called
The R-word.
Like your child being hurt
For what they can't help.

It's quiet
Like your child being ignored
When they try to engage
Other kids
And even, sometimes,
Grown ups.

It's when your child
Can't prove they know something
So, it's assumed they don't.
It's when this assumption
That
"They don't understand,"
Is used as permission
To overshare and disrespect.

It's when your child
Is not believed
When they need to be
Believed.

So...

Celebrate your child
For the way adaptive equipment helps them
For their unique way of moving
For finding a way to communicate that works for them.

Take your child
With a disability
Seriously.

Know that supporting your child
And respecting your child
Are not the same thing.

Make sure your child
Experiences both
From you.

Because your child's words are
Valid.
They are
Valued.
They should be protected
And know
Always
That they are enough
And whole.

Believe in them
And believe
Them.

Friday, August 11, 2017

Review: Wonder by RJ Palacio

This book centers around 10-year-old main character, August Pullman, who was born with "something similar to Treacher Collins Syndrome" according to the author.  Auggie has been homeschooled since Kindergarten, and has done well.  He's smart and sweet, if a bit sheltered.

AUGGIE:

The first 20% of this book (I read on Kindle, so all I had to go by were percentages) was fantastic.  This was all from Auggie's perspective and it felt authentic. His perspective felt so true to life for me (as that kid who was different growing up.)  The stares and reactions he endured felt real.  I loved his closeness with his parents.  I loved his parents as characters, especially his mom, who felt especially real to me.  And did I mention?  Auggie has the sweetest old dog. 

Auggie does okay in school but is super isolated and sad.  Kids tease him and no one will touch him.  Toward the end of 20%, August goes to school around Halloween, dressed differently than he planned to be - as something called The Bleeding Scream - covered from head to toe.  His friend (one of two that he has made thus far) does not recognize Auggie because he's not in the Star Wars costume he planned to wear.
Because of this, Auggie is just feet away when Jack says: "If I looked like Auggie, I'd kill myself," and laughs, with a bunch of kids who bully Auggie.

And at this point?  The POV switches and we get 5 other perspectives for the next 60% of the book. 

VIA:

We hear from Auggie's sister who talks about how hard it is on her to have Auggie for a brother.  (The author also somehow misspells trach "trache" and says this was in Auggie's mouth...um...trachs don't go there...)  Auggie's sister and her friends used to dress him up when they were young.  Auggie loved it.  The girls all thought Auggie looked like E.T...  (I know kids can be cruel but come on.  He's a child, not an alien.)

Auggie's sis has started at a new high school and no one knows about him there.  When she auditions for the school play and gets the part of understudy for the lead, she deliberately does not tell her parents about the show because they will bring Auggie.  When they do find out, Dad offers to come and Mom says she will stay home with Auggie.

Via throws a fit that both her parents will not come to her play.  Auggie asks: "Can I come?" and Via insists: "No!  You won't like it!" 

Auggie, by now, has caught on that his family is not telling him something and demands to know what they're lying to him about.  He screams:  "Tell me!  I'm not r*t*r*d*d!"  (The author has justified her choice to include this word because "That's how kids talk.")  I had heard her quote before I read the book and I assumed one of the other characters said it, not the main character with Not Treacher Collins Syndrome.)  A kid with his background would likely know - more so than the average kid - how much that word hurts.  I found it hard to believe he would use it, and offensive that the author felt the need to include it.  Especially in a children's book.

Auggie runs to his room, crying, and waits for his mom to come and follow up with him, which she does, usually.  He waits a half hour.  And then Via comes to his room and tells him he has to come quick, because their dog, Daisy is really sick and has to go to the vet.  Their parents don't think Daisy will live.  Auggie and Via have to say goodbye.

The whole fight becomes a nonissue as the kids hug and cry and say it was silly to fight.

OTHER PERSPECTIVES:

We heard from Justin, Via's boyfriend, who really did not do much except function as a plot device.  I have a sneaking suspicion he was only included because he had Tourette's Syndrome.

We heard from Summer - one of Auggie's few friends at school - how she sat with him at lunch the first day "because she felt bad for him."

We heard from Jack, who was singled out by the principal as a "nice kid" to show Auggie around, before school started.  We learn Jack balked at this initially, because when his mom told him about Auggie, Jack knew who he was.  Because Jack, his little brother and their nanny had seen Auggie out eating ice cream the previous year.  He panicked.  His little brother made a rude comment.  And the nanny gathered them up to walk away as fast as she could and then reprimanded them all - herself included - for how horribly they reacted.  Jack and his little brother rudely describe Auggie's face and Jack agrees to help him only because he feels guilty.

And we hear from Miranda, Via's former best friend, who has the lead in the high school play, but fakes sick when she realizes Auggie's in the audience, so that Via can have the lead.  She has known Auggie since he was little, and even gave him an astronaut helmet which he wore every time he went out in public for two years.  But Miranda sacrificing her part for Via (when they are not even friends anymore) just felt pitying to me.

AUGGIE AGAIN:

Auggie gets hearing aids and is self conscious about wearing them.  (I did like this aspect!)  But his sister thinks that with a face like his, hearing aids should be the least of his problems... :(

Eventually, Jack punches a kid for calling Auggie a freak, and Jack and Auggie are somehow friends again???  (Even though if a friend said they'd rather die than be like me, that'd pretty much be the end of the friendship, even if we  were only ten.)

Punched Kid's mom makes a big stink.  She emails the principal and tells him that she thinks the "pressure" and the "burden" of being friends with the "special needs boy" is too much  and the "regular kids" should not have to deal with it.  She also demands to know how Auggie even got into "their school" since it is not "inclusive."

The principal writes back, but so misses the point of everything when he insists to Punched Kid's mom that "Auggie does not have special needs.  He is not handicapped or disabled in any way."  (Except that if you're born with a condition that means you were trached and have had multiple surgeries, that affects your hearing and your ability to eat?  That counts as a disability and the principal is not helping by erasing Auggie's.  He does very little to address Punched Kid's mom's ableism.  (Even the kids at school know that she photo shopped Auggie out of he class picture for herself and some of the other moms...)

Meanwhile, things haven't changed a whole lot on the school front for Auggie.  He is still pretty isolated and kids put mean notes in his locker calling him an orc.

AUGGIE IS ATTACKED :(

Then it's time for the class trip to the nature reserve.  Auggie has a lot of fun for the first two days.  On the third night, Jack has to go pee, and there is somehow a line (in the boys' bathroom???) so Jack and Auggie go to the woods (off limits) to pee.

Some 7th graders from another school find them and start being horrible to Auggie about his face.  They won't let Jack or Auggie leave.  Shove him down where he gets hurt and starts bleeding.  His sweatshirt is nearly torn in half.  Some other 5th graders (former bullies) hear the commotion and somehow decide to step in and protect Auggie and Jack.  They all manage to get away.  They are hiding out in a cornfield when Auggie realizes he doesn't have his hearing aids.

The kids try to search in the dark but it is no use.  Auggie starts crying (sobbing) he is so hurt, so scared.  And because of his mom's warning that he shouldn't swim with his hearing aids on because they cost a lot of money.  He is sure he will be in trouble.

They never find his hearing aids.

Not until days later when they are discovered.  One of the 7th graders from another school that beat up Auggie broke his hearing aids and kept them in his locker.)  The principal asks if Auggie wants to press charges.  Auggie says no, because the bully "will never learn," and he is "getting new hearing aids anyway."  The principal urges him to talk to his parents, but this is never followed up on.

All the kids in school have heard the rumor of the big 5th graders coming to Auggie's aid. Suddenly, Auggie is like the 5th grade mascot. The child everybody says hi to now that he has been so hurt, and is so vulnerable without hearing aids when they previously made it their mission to avoid touching him for fear of catching The Plague.  When they called him a freak and ignored him.  It makes little if any sense to me why elementary aged kids - and former bullies at that - would step to fight even bigger kids when a kid they didn't care about was in danger.

Honestly, this aspect was the most upsetting: how brutally Auggie was assaulted and how that somehow made him desirable to other kids.  

And it felt like a huge miss (and likely an oversight due to being a nondisabled author) that this issue Auggie's adaptive equipment being stolen and broken was never properly addressed.  It's alluded to that Auggie feels out of sorts without his hearing aids, but he is mostly okay because he is "getting new ones."  

But getting new adaptive equipment is not as easy as going to the store and getting a thing you need.  The process takes months, likely especially for Auggie, because his hearing aids needed to be custom-fitted for his ears.  There is no mention of any actual punishment for the kid who did this to Auggie.  So he walks around for the last few days of 5th grade hearing the ocean in his ears.

THE ASTRONAUT HELMET:

On his way to 5th grade graduation, Auggie's dad casually tells him that he threw Auggie's astronaut helmet out.  Auggie is stunned and angry.  He wore this out in public for two years straight.  It made him feel safe.  Protected from people's stares.

His dad is clearly not expecting Auggie to be so upset and reasons that "I just missed seeing your face."

Again, it's obvious Dad was not trying to be malicious here, but this is where a conversation, or a series of conversations would have been appropriate.  

Think about it.  If somebody took something that you used every day, that you loved and relied on to keep you safe in the world?  And they threw it away?  That would be a huge violation.  Auggie gets over this pretty quickly, though,  (More quickly than I know I would) and simply asks his dad to "please not throw anything else of mine away without asking me first."

But Dad already has done that.

So who's to say he'll do anything differently in the future?

Again, this feels like a miss due to the author being nondisabled.  Because a parent doing something like this did not strike me as "no big deal."  It struck me as a pretty big one.  Not something that a kid would just get over in a minute.

THE AWARD:

Once at graduation, there is an award ceremony.  And while some kids earn gold, silver and bronze medals for academics or sports, Auggie inexplicably earns the last award of the day.

What's it for?

Well, no one really knows.

It might be for "being courageous".  It might be for "being a good friend."  It might be for "being of good character."  But it was clear (to Auggie and to me) that this was one of those awards that's given out to the poor, tragic disabled kid, who must have a really hard life.

I hated these types of awards.  Most disabled kids and adults I know hate them, too.  But Auggie says, "If they want to give me an award for being me, that's fine!"  And, "It's like the people you see sometimes and you can't imagine what it's like to be them.  Whether it's somebody in a wheelchair or somebody who can't talk.  Only I know I'm that person to other people.  Maybe to every single person in this whole auditorium."

It's clear that Auggie's perspective is being written by someone who is not like him.  Because he is being framed as the "other" here.  The "outsider".  And very rarely if ever do children readily accept getting overt attention for something like a disability.  Because the attention they're used to getting for it?  Is not positive.  Plus, being disabled is not an achievement.  

Auggie did not work toward a goal over time and he did not see his hard work pay off in any way that would have merited this particular award.  (I could see him earning an academic award, but instead the author made the choice that he earn the Inspirational Award.)

To finish?  The boy who has always been uncomfortable in crowds and having his picture taken, goes up proudly and smiles, taking the award he knows he did nothing to earn.  He poses for tons of pictures for his new "friends" who love him as a mascot.  As someone to pity.  But don't really know him at all.

CHOOSE KINDNESS:

The moral of the story is simple: When you can choose to be anything, choose to be kind.

There is nothing inherently wrong with kindness.  Except that when you have a disability, the line between kindness and pity blurs severely.  People see someone with a craniofacial condition, or another visible disability and their inclination is that we need them to be overly nice to us because our life is just so hard.

So, instead I challenge you:  Choose dignity.  Choose respect.  Choose to get to know the person in front of you before making a snap judgment about how much they suffer.

Because uninformed disability attitudes harm us more than our disabilities ever will.




Review: The Fosters 5x05 "Telling"




I have been reviewing The Fosters since its premiere in June, 2013.  In February of this year, Tara joined me, sharing her thoughts on scenes involving Jesus, because like him, she also survived a brain injury at age 16. Last month, Tara and I started reviewing the show again, as it came back to start its fifth season.  Since Jesus's brain injury, we have noticed a disturbing amount of ableism being perpetuated each week.
"Telling", which aired on Tuesday of this week, surpassed any previous level of ableism by leaps and bounds.  But unlike conversations about such media as "Me Before You" and "Everything, Everything" we struggle to find anyone else who is discussing the harmful depiction of brain injury survivors on The Fosters.  Which is why Tara and I agreed after finishing this review last night, that we would share it here.
Because media is important.  Media teaches people how to treat those they might have limited contact with.  Please take some time to read, and let's talk about this:


Monday, August 7, 2017

Parenting Kids with Disabilities: What You Can't See (Invisible Aspects of CP)

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 

Dear Parents,

Growing up with Cerebral Palsy, there were aspects of my disability that I knew existed, but I didn't know how to articulate them as a child.  Now that I'm an adult, I can share with you about some of these lesser known aspects of this disability.  I hope that, especially if your child has CP, too, you'll find this post helpful.

SPASTICITY:

If your child has spastic CP, you're probably well aware of their high muscle tone in affected areas.  Maybe your child has had surgery to help lessen their spasticity.  Maybe you have to stretch your child's tense muscles for mobility reasons.

But perhaps you didn't know that there are outside factors that can impact your child's spasticity:

Cold:

If you live where it gets cold in the winter, you know well how the frigid temperatures can feel like they freeze your muscles and make it difficult to move.  For those of us with spasticity, this is even more pronounced.

This might make tasks your child can regularly perform with little to moderate difficulty much harder to complete.  They might be physically unable to move at all if they become too cold.  They will probably move more slowly than usual.  Their impacted muscles, or muscles in a certain place, might feel overly tense.  They might become sore.  They might become exhausted more quickly after being outside in the cold and require more time to rest after expending all the energy required to manage in the cold.

Just understanding this could go a long way for your child.  Helping your child get warm ASAP can help, too.  (A blanket, hot chocolate, or a warm bath or shower are all solid options.)

Strong Emotions:

I bet you've noticed your child with CP's walk (or other movement) isn't always consistent.  Maybe you've seen them perform a physical task "well" so you know they can.  But perhaps the next time you ask them to do it, they cannot recreate the previous result.

This could be due to the emotions your child feels being put on the spot.  Strong feelings (fear, anger, embarrassment, and even strong joy) can make our spasticity stronger.  Maybe you've noticed your child's walk or other movement gets inconsistent all of a sudden.  You say, "Put your foot down."  Or, "Put your arm down," and suddenly that heel is off the ground even more, or that arm is definitely in the air.

I know it looks intentional.

Trust me, it isn't.  Just like you can't help a blush or a sneeze, we can't help when spasticity kicks in.

The best way you can support your child while doing something physical is to be calm.  And if possible, be quiet.  Physical movement takes a lot of concentration for us.  Motor planning to do things like climb stairs, hold a pencil or tie our shoes all take concentration.  Drawing attention to your child when they are actively trying to complete a task will likely trigger their spasticity.

So praise them when they are done with the task at hand, when more intense spasticity won't impact what they're doing.

Overflow:

If you've ever seen your kid concentrating really hard on one thing, or using one part of their body for one thing, maybe you've noticed their toes curl or the spasticity in their arm(s) or leg(s) engage.

I'm not a scientist, but I've heard this is called overflow.  It's like when you're writing something and your tongue sticks out while you're concentrating.  It's not intentional.  You probably don't even think about it, it just happens.

Sometimes, it's hard for me to even hold a conversation while I am walking, biking or stretching.  For some things, I have to be completely silent, and focus all my energy on staying relaxed.  I think it's because we have trouble isolating movement to just one part of our bodies. So our legs (or whatever's affected by spasticity) always want to get involved, too.

If you've seen your kid's spasticity kick in while they are playing a video game or reading a book, it's okay.  It's normal.  For us, it's normal.

Speed:

Maybe you've noticed whenever you ask your kid with CP to hurry...they don't.

My friends with CP and I joke that it's because we only have two speeds: CP Regular (our comfortable walking speed) and CP Fast (which is actually slower than CP Regular.)

That's because spasticity kicks in with speed.  So when we try to go fast, it actually slows us down.

Your best bet as a parent is to give your kiddo with CP plenty of time to get ready in the morning or to use the bathroom before leaving the house.

Asking them to hurry just...won't work. ;)

Shoes:

I'm not sure if it's just me, but my spasticity feels more intense when I am barefoot.  The soles of my feet are really sensitive, so that feeling input like carpet or grass directly on them makes my spasticity engage.

I have always felt like I move better in shoes.  And it's important that those shoes have good tread.  When tread starts wearing off (about every three months seems typical for those of us with CP) our spasticity gets mad.

If your child's spasticity seems to be more present, check the soles of their shoes.  You'll notice if the sole seems worn smooth in a certain place.  That's the place they need to be able to count on traction to support their walk.

Gait Testing:

If your child has periodic evaluations for AFOs or other medical interventions, maybe you've noticed they don't do as well as you know they can.  If they can walk (independently or with adaptive equipment) it might be frustrating to you that they don't seem to recreate this result for the people who need to see it the most.

But parents, gait evaluations combine absolutely everything that makes our spasticity engage.  Chances are, we are in less clothing, so we're cold.  We're also keenly aware that we are being watched and evaluated, so we are nervous.  And we're barefoot, without our shoes and the traction they provide.

In this situation (and all situations) know that your child is always trying the best they can.  They are contending with things that aren't a factor for most people, but really change the game when you have CP.

ENERGY:  

Maybe you've been out and about to run errands.  You're walking at a leisurely pace.  Your kid with CP is walking with you at the same speed you are, but they are huffing and puffing like they are running a marathon.

I have read that it takes people with CP three to five times more energy to do things than someone without CP.  Transcending CP's K describes this super well in a recent post A Walk in the Park (St. Louis Edition).  Needless to say, these statistics don't lie.  I'd even guess the energy we expend could be a bit higher than five times what a nondisabled person expends.

Keep in mind that even 'casual,' 'at your own pace' things still require energy.  (And remember that nothing saps us of our energy faster than cold.)  So provide your kid with lots of opportunities to take breaks and sit down.  (Standing still requires more energy than walking does for us.  So pausing for a 'standing break' will not feel like a break at all.)

I know a lot of things already take extra time, but you don't want your kid exhausted if they don't have to be, right?

STARTLE REFLEX:

Do you ever notice your kid with CP is extra jumpy in response to movement or noise?  It's a CP thing.

One of the toughest aspects of school as a child was having the other kids intentionally startle me because they thought it was funny.  This was at its worst when I was around nine years old.  One day, during lunch, someone got up from the table and the bench we were sitting on tipped back momentarily before righting itself.

I jumped.

All the kids laughed.

And for the rest of the year, I was on guard during lunch.  Scared to eat or drink anything, because I was waiting for the moment when one girl would inevitably tip the bench back and the whole table would burst into laughter.  The only thing worse than those girls triggering my Startle Reflex on purpose was spilling on myself in the process.

They had a way of scaring me that felt particularly mean-spirited.  Because they would go out of their way to convince me that they wouldn't do it today.  They'd attempt to get my guard down because they knew that was when my "jump" was the most intense, and, to them, the most funny.

[Image is: Me, at 7 years old.  I'm laughing, but I have both ears covered, in anticipation of being startled by noise.]


Often, when they scared me, I'd laugh, too.  (It was that or cry.)  But I'd also beg them to stop.

They didn't.  Because even at nine, other nine year olds didn't take me seriously.

As I share in the link above, it might look funny to other kids to see yours jump.  But it isn't the same as your run of the mill response to sudden noise.

Your child's heart will race.

They'll feel short of breath.

It will take them a long time to regulate themselves.  (Depending on the severity of the trigger, it can take up to an hour to calm down fully again.)  During this time, they'll feel tense and watchful.  Because what has actually been triggered is their fear response (what you feel when your life is at risk.)

Know that if your child with CP is coming to you, telling you that someone is "making them jump", this is what they mean.  It's hard on them.  And it's hard to concentrate on anything else when they are constantly worried about being startled by someone.

Take your child's words seriously about this and help impress upon people around them that scaring your kid with CP on purpose is not okay.

DEPTH-PERCEPTION:

Maybe you've noticed your kid is especially cautious on uneven ground.  Or maybe they appear not to notice the danger of a certain precipitous slant outdoors.

I've struggled when out and about for a variety of reasons.  But one of the big ones is an inability to assess depth.  I've been in situations where I'm sure there's a curb cut somewhere, but I just can't see it, because it appears as flat as the surrounding ground.

Once, on family vacation at sixteen, I thought I'd help them out by getting a head start out of a building in Washington DC.  All I saw before me was a vast expanse of flat sidewalk.  I had no way of knowing that it, in fact, slanted dangerously.  I ended up careening down it in my wheelchair, unable to stop myself (because I was going so fast, the friction of trying to stop actually burned my hands.)  My little brother spotted me, ran to catch me, and gently tipped my chair on its side to stop me from crashing.

I don't know for certain, but I'm pretty sure this is also a CP thing.  So keep an eye on your kids with CP on slanted ground, especially if they are in a chair.  Teach them to look for any other visual indicators that might help them find a curb cut, for example.  (Some have distinctive looks, or a feature, like bumps on the ground, or paint that's a different color, to distinguish it.)  Be explicit with your child if they are near a major slant, especially if they seem unaware of it.

PLACE-BLINDNESS:

Does your child have a hard time orienting themselves, especially at places they don't go every day?  Are they constantly asking you "Where?" when you tell them where to go?

Place-Blindness is defined as the inability to orient oneself in one's surroundings, as a result of focal brain damage.  Lots of us with CP struggle with constantly getting lost and being disoriented in public (a Target store or a restaurant, for example.)  Without significant landmarks, I find it almost impossible to navigate from place to place.  (You can read more about Place Blindness and CP at the link.)

Know that your child is not trying to be difficult and remember that CP is the result of brain damage.  Our disorientation when out in public or when driving isn't meant to frustrate you.  And we are not faking it.  We are just as frustrated as you are.

The best thing you can do is be patient and answer our questions as clearly as you can, even if they seem obvious to you.

MATHEMATICS DIFFICULTY:

Does your child with CP struggle particularly in math classes?  Are there concepts they simply cannot grasp, or maybe, ones that they can grasp they need significantly more time to make sense of?

This is really common among people with CP.  Most people I know with it do struggle with math, on a more major level than the average person.

For example, I always have been able to read and write well.  I tested a couple years ahead of my age in both of those subjects, but tested at a sixth grade level in math, as a high school sophomore.  This isn't because I wasn't trying.  I was.  Math just didn't compute for me most of the time.  While I did okay with basic addition and multiplication, even basic subtraction and division can still give me trouble.

If your child struggles in this area, reassure them they are not alone.  Understand they may need extra time to grasp mathematics concepts.  It may help, also, to encourage them to ask a friend in class to try explaining a concept to them.  When a teacher's explanation failed to click in my brain, once in a while, hearing a friend explain it simpler, or differently, would make sense.

Know there may be some things they simply can't do.  (For me, this was using a protractor in high school geometry.)  I understood how, but the spasticity in my right hand made it impossible use.  I talked to my teacher at the time, and showed him my difficulty, while assuring him that I understood how the protractor was used.  He understood and didn't dock my grade for this.  Math difficulties can spill over into other areas like science classes, too.

My junior year of high school, I only passed math because I took the lowest level course there was, and there was a retake option on all the tests.  I failed every test in that class the first time I took it, no matter how I studied.  But something clicked when I was tested on the material a second time, and I was able to pass the class with about a C.  Most people don't know that my difficulties with math were a big reason I didn't complete college.  I simply could not make sense of the math even in the lowest-level college course.  (And the one I tested into.)  My major required math.  The test to get into my major required math.

Be patient, and make sure your child knows they are smart, and that struggling in math doesn't take that away.

I hope this post gives you a closer look at some of the invisible aspects of CP your child might deal with.  And even if your child does not have CP, be aware that there could be aspects of their disabilities that they can't yet explain to you.  Talk to adults that share your child's diagnosis to get an idea of common areas where your child could struggle.

It will help your child so much to know they are not alone.

All About CP and Me is a free eBook that talks about what it's like to have CP in a way that is not scary or alienating.  Feel free to read with your kids or grandkids.

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NOTE:  If you would like to share this post with your child's PT, teacher, other caregiver, etc, you are welcome to link them directly to this post via email or other social media.  All I ask is if you print a hard copy, that the website (http://toniasays.blogspot.com) is visible somewhere on the printout, so it's obvious where the content originated, and that you print from this page only. Please do not copy/paste.  Thanks so much to those who have asked.