Monday, December 25, 2017

Review: The Fosters 5x01 "Resist"

Originally written: July 13, 2017


Brandon:  Jesus!

Jesus:  Just leave me alone!

Brandon:  Come on!  Stop!  Jesus!  Hey!  [Brandon loses Jesus at this point]

Tonia:  So…Jesus can outrun Brandon in the dark…in the rain…with balance/stamina issues?  Okay then.  I guess I’ll suspend disbelief.

Tara:  I’ll take Disability As A Plot Device for $200, Alex.

Monday, December 18, 2017

Review: The Fosters 4x20 "Until Tomorrow"

Originally written: April 12, 2017


Emma:  Jesus?  Jesus, are you listening to me?  I can't afford to go to private school.

Jesus:  You're pregnant, aren't you?

Emma: [sits up, scared]

Jesus:  Hey, hey, hey, hey.  It's okay.  I know this might sound crazy but...we can do this.  I'm ready.  We can have this baby together.  

Emma: [tears up]  I had an abortion.  

Jesus: [quietly] Why didn't you tell me?  Why didn't you talk to me?  I'm adopted, Emma, you know that.  

Emma:  I didn't talk to you because the baby wasn't yours.  It was Brandon's.

[Jesus's phone vibrates; Jesus glances at it.  Then we see it's Jesus's phone on his nightstand vibrating while Jesus is asleep.  He has been dreaming.  It's the next morning.]

Tara:  I mean, I really can’t blame Jesus for attempting to fill in the blanks regarding all the secrecy regarding Emma.  Linking Brandon and Emma together almost seems perseverative at this point, but not unreasonable given the circumstances.

Monday, December 11, 2017

Review: The Fosters 4x19 "Who Knows"

Originally written: April 5, 2017


Stef: What was this letter doing in your pocket?

Tonia:  Nothing!  You know, Jesus just was telling Brandon what a good brother he was, so Brandon reciprocated and Jesus thought better of frisking him…

Monday, December 4, 2017

Review: The Fosters 4x18 "Dirty Laundry"

Originally written: March 29, 2017


Mariana: Gabe!  Hey!  What's going on?  What are you doing?  I...tried calling you but your phone's disconnected...

Gabe: Uh, yeah.  I am, uh, moving.  Got a job in Lake Tahoe, so...

Mariana:  Wait.  You what?  Were you gonna tell us?

Gabe:  Of course.  Yeah. happened really fast and...  So, why were you looking for me?

Mariana:  Jesus and I wanna build this massive treehouse and - I don't know - I thought that you could help.  

Tonia:  Uh-oh.  Mariana found you, Gabe.  And you don’t seem like you’re doing well.  Hope you’re okay.  (I’m also with Mariana, please don’t leave without saying anything.  That’s so hard.)

Monday, November 27, 2017

Review: Speechless 2x05 "N-I--NIGHTMARE ON D-I--DIMEO STREET"

On the Halloween episode of Speechless, JJ, Ray and Dylan are all looking for the Halloween candy, while their parents are out.  In a moment of positive representation, we see JJ finding the candy with the help of a Gopher type tool.

[Image is: a pumpkin-shaped bowl full of candy corn beside jack-o-lantern stencils for eyes and a smile]

Monday, November 20, 2017

Disability on The Fosters

5x17-5x19 Stef / Grace / Jesus

5x16 Giving Up The Ghost

5x14-5x15 Scars - Mother's Day

5x13 Line In The Sand

5x12 #IWasMadeInAmerica

5x11 - Invisible

5x10 - Sanctuary

5B - Promo

5x09 - Prom

5x08 - Engaged

5x05 - Telling

5x03 - Contact

5x01 - Resist

4x19 - Who Knows

4x15 - Sex Ed

Review: The Fosters 4x17 "Diamond in the Rough"

Originally written: March 22, 2017


Lena: [holds up a picture of a car]

Jesus:  [sighs, softly] Car.

Lena:  Good.  [holds up a picture of a lamp]

Jesus:  L-l-lamp.

Lena:  Nice.  [holds up a card that reads 'pony']

Jesus:  Where's the--the picture?

Lena:  Nope.  No picture this time.  What's it say?

Tara: I have soooooo many feelings about this scene.  It is obvious to me that Lena has been tipped off about Jesus’s reading difficulties.  For the record, this is a really crappy way to confirm said difficulties.  I would even go so far as to say that it’s cruel.  Forcing Jesus to do something he is not physically able to do?  Actively humiliating him, when a one-on-one conversation would accomplish the same thing?  I expect far more of Lena, who has a background in child psychology and education.  
Also, just the way she is speaking to him - terse and not at all warm.  The whole situation is super disheartening.

Tonia:  Agreed.  Lena's going out of her way here to humiliate Jesus here, which is in no way okay.  

Saturday, November 18, 2017

Review: The Fosters 5B Promo

Lena (to Jesus):  Honey, you're not broken.  And I promise you that we're gonna stop making you feel that way.

It's four seconds.  But it's a powerful four seconds that I need more than 280 characters to talk about.

Monday, November 13, 2017

Review: The Little Mermaid

Ever since I first watched Disney's The Little Mermaid in theaters when I was eight, I have strongly connected to Ariel's story.  A girl who longs for a connection to people who walk, and for legs that work like everyone else's, not a tail / walker / wheelchair / crutches?  I totally related.  I felt bonded to Ariel from the first moment I saw her:

[This is me, at eight years old, the year The Little Mermaid was released in theaters.  I was in awe.]
Though I am sure my review of this movie would have been profoundly different had I done it as a third grader, I'm doing it now, and I will do my best to share my initial thoughts on what spoke to me and why, as I remember it.

Monday, November 6, 2017

Review: Speechless 2x04 "T-R--TRAINING D-A-DAY"

After seeing a few things about this episode of Speechless on Twitter, I thought I'd check it out.  For reference, I haven't watched since around 1x08 last season, when I just lost interest.  I tried again to tune in for the premiere last month, but I didn't last past the first five minutes.

Monday, October 30, 2017

Review: Grey's Anatomy 14x04 "Ain't That a Kick in the Head"


Amelia via Voiceover:  There are 100 billion neurons in the human brain making and remaking connections.  

Amelia: [turns to reveal an L-shaped patch of hair she's shaved, beneath a top layer, which she has pulled aside with a clip]

Maggie:  That's it?  That makes you look fierce.

Amelia: [touches the shaved area briefly, studying herself in the mirror]

Meredith:  Are you sure you don't want me to call your mom?

Amelia:  No.  She didn't come for my wedding.  She doesn't get to come for my tumor.  

Amelia via Voiceover: It's helping us with math, remembering our keys, our dad's voice, working hard all the time.  So when the brain is faulty, it's a big rewiring job.  And there's no margin for error.  

Tara:  My head was shaved more severely than Amelia's, but a layer was left to cover what would have otherwise been hemispheric baldness.  

Also, the @GreysMedical Twitter noted that, according to their neuro consult, it is bad luck to completely shave a head.

Saturday, October 28, 2017

Review: The Fosters 4x16 "The Long Haul"

Originally written: March 15, 2017

Mariana:  Mama's not busy.
Lena:  Yes, I am, honey.  I have to take Jesus to physical therapy every day and --
Jesus:  Well, I'm not going anymore.
Lena:  What?  Yes, you are.
Jesus:  No, I'm not.
Stef: Jesus.
Tara: This sounds an awful lot like Jesus is a chore and not a human.  Also, I am 99% positive that he waited until family dinner with Grandma to drop that little info nugget about therapy.  Everybody trying to make nice for the relatives means less of a chance of an argument.  (And more of a chance that the family hears Jesus out.)  No follow-up conversation in this episode, though, so we’ll have to see what comes of it.
Tonia:  Yes, and while I am sure Jesus hates PT with a passion, I wonder if also isn’t saying this to lessen the ‘burden’ of caring for him on Lena.  I hate that Moms just keep warning him silent whenever he says something they don't like.  (Also, at this point, 5A has aired and we have yet to see a followup to Jesus saying he's not going to therapy anymore.  In fact, we've yet to see him in therapy again at all.)
But I love how Jesus’s cane is right next to his chair.  One of the things I always remember eating dinner with my family at home, was feeling like I had to prop my crutches in a nearby corner so no one tripped.  But that also meant they were out of my reach when I needed them and I always had to ask someone to get them, which was annoying.  And he’s finally in a chair with a back on it!  Hallelujah!  No need to use up all that energy keeping his balance when he can use it on eating.

Monday, October 23, 2017

Review: The Fosters 4x15 "Sex Ed"

Originally written: March 1, 2017


Emma: What if this were yours?  How would you feel?

Brandon:  I think I would support your right to make your own decision.

Emma:  And how would you feel?

Brandon:  I would feel bad.  For you.  For doing this.  And I would feel sad, too.  I know I'm not...ready to be a father.  

Emma:  Do you think that's how Jesus would feel if he knew?

Brandon:  I do.  

Emma:  Am I horrible for not telling Jesus before I do it?

Brandon:  It's gonna be a while...until he's well.  And it's not like you can...wait.  

Planned Parenthood Employee:  Emma?  Why don't you come on back?  We're going to go in the office and talk for a bit before you see the doctor.

Tonia:  I am still of the belief that Jesus should be told.  If I were him, I would feel beyond betrayed knowing that my brother took my girlfriend to abort our baby before she even told me about it.  I don’t know if Jesus would ever get over that…

Tara: I get that Emma is worried about telling Jesus.  And the bottom line is, it is up to her who she tells and when.  However, I do feel as though ableism is influencing her decision not to tell him.

Monday, October 16, 2017

Review: Grey's Anatomy 14x03 "Go Big or Go Home"

So, this is a first.  Tara and I tackling an episode of Grey's Anatomy together.  This one just aired (October 5th) and it was so fabulous that we agreed we have to write about it.  For those looking to catch up on this storyline in particular, the last 30 seconds of last week's episode is what you missed.  That's here:


Andrew:  Dr. Shepherd.

Amelia:  Shhh...

Andrew:  It's been a week.  Shouldn't you tell someone?  Your family?  A friend?

Amelia:  I don't need your advice or your concern.  What I need is for you to follow HIPAA and keep your mouth shut.  And my latest labs.  And a triple latte.  

Tonia:  I love this scene because it shows Amelia clearly advocating for herself and protecting her own privacy.  Additionally, she reminds Andrew of her position, and who she is (his superior.)  I love that she does not allow Andrew to begin speaking to her differently, or looking at her differently, because of her tumor.

Monday, October 2, 2017

Review: The Fosters 4x13 "Cruel and Unusual"

Originally written: February 15, 2017

Now that The Fosters is on a bit of a break, I thought it might be good to go back to the past episodes that focused on Jesus and his TBI. There will also be a bit of new commentary, as I did not originally comment on any scene where Jesus was on screen and Tara usually didn't comment on anything else. But now, with our reviews focused exclusively on Jesus, we feel we can give these moments ample attention.

Monday, September 25, 2017

Parenting Kids with Disabilities: Conclusion

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

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 with any questions.

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

Monday, September 18, 2017

Parenting Kids with Disabilities: Autonomy and Consent

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

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.


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!")


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 also tried to leave, but the child dragged her further 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.


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.

Monday, September 11, 2017

Parenting Kids with Disabilities: Advocacy

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

Dear Parents,

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

"I can do it myself," Mom prompted.

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

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

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

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

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

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


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

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

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

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

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


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

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

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

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

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

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

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

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


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

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.

Friday, September 8, 2017

Review: The Fosters 5x09 Prom

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

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

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.


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.


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.


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.

Friday, September 1, 2017

Review: The Fosters 5x08 "Engaged"


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.

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.


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.


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.


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."

( 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"


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