Monday, August 28, 2017

Parenting Kids with Disabilities: Inclusion vs. Accommodation

1,365 words
11 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,

"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.

***

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Friday, August 25, 2017

Review: The Fosters 5x07 "Chasing Waterfalls"

3,543 words
27 minute read


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

272 words
2 minute read

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?"

***

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Parenting Kids with Disabilities: Identity

1,506 words
12 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,

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.

***

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Thursday, August 17, 2017

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

3,895 words
30 minute read

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

438 words
3 minute read

[Image: The cover of Mia Lee is Wheeling Through Middle School]

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.)

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

***

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Monday, August 14, 2017

Parenting Kids with Disabilities: What Ableism Looks Like

625 words
5 minute read


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: Tonia, smiling with a flourless chocolate torte...clearly not the worst fate ever.]

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.

***

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