Medical Trauma and CP

2,847 words

22 minute read

Read with caution

"So, you have a little bit of White Coat Syndrome..."

"Well, I don't like going to the doctor either, but..."

These sentiments and more are the types of things I hear when I mention I have medical trauma.  But medical trauma is more than just not liking going to the doctor.

Medical trauma is what it sounds like: trauma that stems from enduring medical procedures, illness or prolonged hospital stays.  Pediatric medical traumatic stress is a child's response to an invasive or frightening treatment and / or medical procedures.

There aren't a lot of resources out there that discuss medical trauma and CP.  So, as I do, when I can't find information...I'm creating it.

Let me say upfront that I am not a medical expert.  What I am is a survivor of years of medical trauma.  Medical trauma that was -- yes, I'll say it -- largely unnecessary.

In my case?  Even the necessary was torture.

***

These are the pieces of my history put together myself:  

When I was a five-day-old newborn, I endured heart surgery without anesthesia.

At four months old, I had two throat surgeries, a week apart -- and again -- without anesthesia.

This is because, prior to 1987, premature babies only given paralytics for major surgery.  We were not anesthetized because it was believed we could not feel pain.  So, I was operated on three times, while fully conscious, but unable to move.

My family was two and a half hours away and received updates by phone.  I had no one waiting for me.  After that first surgery, it was eight more days before anyone could come and hold my hand.

[Image: Tonia, 13 days old -- 8 days after major heart surgery.  Part of the large bandage is visible on her back.]

These are only the procedures I had that I'm aware of.

There are likely more "less invasive" interventions that were also given without anesthetic, like bronchoscopies, which I had more than once as a baby.

Yes, I needed these procedures to stay alive, but the medical trauma I endured?  

That's unparalleled.

***

I lived in the NICU for the first 11 months of my life.  

I was surrounded by monitors, sounds of distress, and I endured unimaginable pain and suffering.  My family lived two hours away and could only visit once a week.  I only saw my twin sister a few times over eight months after she was released.

The affects of these early traumas were evident as early as two years old, when I apparently fought an eye doctor so hard he could not complete the tests he intended to run.  In his words, I was "uncooperative."

But in mine?

I was traumatized.

***

And that was just the beginning.  

I endured five different non-lifesaving surgeries between the ages of three and eleven years old.  

These surgeries were rarely singular orthopedic events, and more often, I had multiple operations at once: four incisions at once when I was three years old.  Thirteen incisions at once when I was ten years old.  Two more at once when I was eleven years old.  

In total, my surgical scars number more than twenty.  And at a few of those locations, I've been operated on more than once.  (One did not leave a visible scar at all, but did leave lasting trauma.)

***

Here's the thing I need you to hear: most of the time?  I didn't act traditionally traumatized.  I went along with surgeries because I had no choice.  I stopped crying when I had bloodwork done by the time I was three.  Instead of recognizing this lack of reaction as trauma, I was called "brave" or "good."

But I was neither.

I was dissociating.  Coping in the only way I could, because I was enduring these things against my will.

Just because you don't see symptoms does not mean we are not suffering immensely.

And when I could not dissociate?  My pain and trauma did not matter...because the doctor's orders mattered more.

Related: The Bed Thing

***

People with CP -- even adults -- are forced into nonconsensual, non-lifesaving medical interventions all the time.  

In December of 2016, Just after speaking out about experiencing a super unsafe inaccessible home, a family member in the medical community suggested that I get PT and a Baclofen pump.  

I nearly blacked out at the words. 

After my entire childhood was marked by unnecessary surgeries, here was another being suggested.  All so nondisabled members of my family could avoid providing basic access and safety features in their house.

The trauma it brought on was real.  

And the pain of those words...I can't explain how it feels to be brave enough to tell someone "I need accommodations," and to hear, in essence, "I need you to suffer through unimaginable pain instead."

***

It's been said here before, but I think it bears repeating: nondisabled people get medical intervention for the most part when they choose it.  Because it's something they want for themselves for some reason, or it will help their pain.  (They even choose Botox for themselves, but they don't get it in super tense muscles because that would be even more painful and ludicrous -- and they wouldn't insist on it for their nondisabled child!)

But as disabled people, we are often not given this basic right.  

I have friends who were forced into getting Botox injections as kids (sometimes without anesthesia), some acquaintances who still feel pressured to go along with their parents' wishes for them to get Botox as an adult.

It is traumatizing.

And we don't just get over it.

Related: Why 'Just Forget and Move On' Is Dangerous Advice When Discussing Trauma and Disability

No nondisabled adult would choose to put themselves or their nondisabled 3 year old, or 10 year old through multiple-incision surgeries.  Especially if they didn't need such drastic medical intervention to survive.

Before all my non-lifesaving surgeries, I felt fine.  I wasn't in any pain at all.  I felt normal.

But instead of being able to carry on being a kid and playing with my siblings, I went through the trauma of anesthesia, the torture of recovery and the abuse of rehab / therapy.  All for what?  So I could reach some nondisabled ideal of what's normal?

It wasn't necessary.

***

This is why you'll see me react so strongly to nondisabled parents who share about their kid with CP going through unnecessary medical interventions.  Because whether it's the latest and greatest promise from a doctor that your kid will get "new legs" after the surgery, or will somehow not need previously necessary mobility aids.

Even treatments given to reduce spasticity and related pain (Botox injections) seem barbaric to me when chosen by a nondisabled parent for their disabled child.  Not the least of which because there are non-invasive pain relief options available.  There are things to try that may actually soothe tense muscles instead of causing unimaginable pain.  (Like gentle massage.  Like a warm bath.  Like topical pain relief creams.)

The younger the child is, the greater my fear is for them.

Because, contrary to popular opinion?  The younger a child is, the greater impact trauma has on them.  (See What Happened to You? by Dr. Bruce Perry and Oprah Winfrey for more.)

***

It's June, 2021.  

I've decided to check out the musical Next to Normal.

I've been hesitant about it for a while, but finally decided to give it a try, knowing that it shares the same writer as my current focused interest 13 Reasons Why (on Netflix).

Maybe fifteen minutes in, I start noticing discomfort in my arm.  It's the kind of pain I traditionally have on the CP side of my body, but this exists in my only unaffected limb.  From shoulder blade to wrist, it's locked up with tension.  No matter how I position it, there's pain.

I leave the room a couple of times to try different pain relief options -- and they barely make a dent.

Tara asks, "Should we pause it?" several times during our viewing but I want to see it, and I know if I stop early, I won't finish it.  At this early stage, I don't think about trauma.  Yes, I don't like the medical content, but I'm a Grey's Anatomy fan, so clearly I can handle this...right?

There's significant invasive, intensive medical trauma depicted in this musical and alluded to throughout.  I cope by being out of the room for the duration of the most intense scenes and by heeding Tara's warnings about what's coming up next.

I insist we keep watching.  Tara's already seen it.  I want to share this with her and another friend, who has sung the musical's praises for months.

I watch the entire thing -- all two hours and three minutes of it.

It's afterward, when discussing it with a friend, when I realize I am triggered.

Did you like it? they ask, and I stall.

I actually wanted to hear why you like it.

(It's not a lie.  I do.  I love hearing about what people in my life enjoy.)  

As they share, I'm aware of tension blocking my throat.  Tension all through my body, channeled down that one arm.

Around the same time, Tara asks, "What did you think?"

And when I try to answer, I'm stunned to find myself close to tears:

"I....um....I can see why you liked it...  The music was really good.  I just...  I mean...  I don't know how to..."

My words are gone.  There's actual tension blocking them, but even behind the tension, there is nothing.  

I have no words.

It's like they vanish entirely.

"Was it kinda heavy?" Tara asks, giving me some.

"Yeah," I agree.  "It was kinda heavy."

Meanwhile, I tell our friend, in response to their question about if I liked it:

Honestly?  It's a little too medical for me to feel safe watching.  I def feel like I'm a little triggered.

The rest of the night, friends ask me how I am, and I can't speak.  Their well-meaning questions, ("Want to share more?") trigger even more tension, even more overwhelm and feeling stuck and powerless.  

Because I can't share more.  

I respond with an abrupt and ineloquent, Like, literally no.

Tara spends the rest of the night telling me, "I miss you," because I can't talk to her.  I want to.  But I can't.  The only chance I have for words to come is if I'm sufficiently distracted.

(Somehow, too, I persist in feeling left out of the conversation that Tara and our friend are having about the musical.  Even though I know it's triggering me, I still hate feeling left out.)

I comfort myself drawing Joanna, the monitor lizard from The Rescuer's Down Under (because I'm in my 'lizard brain.'  A traumatized brain -- like a lizard's -- can't tell if a trauma is happening right now, or decades ago.)

Eighteen hours later, I still go silent -- tense and wordless -- when asked if I'm okay after this trigger.  I insist I'm fine as long as we don't talk about it.

Twenty-four hours later, I can finally share the barest details:

And it sounds silly: 

"My preverbal medical trauma was triggered watching a musical."

It sounds silly, but it isn't.

It doesn't escape me that it was June almost four decades ago when I had that heart surgery as a five-day-old preemie.  That the tension is localized around my left shoulder blade, the same place my scar from that operation starts.  Ten inches long and wrapping around me high on my left side.

I don't have a conscious memory of this surgery -- of this torture -- but my body carries it.

And every once in a while, it emerges, a tense and wordless thing.  A wall of fear.  An enforced stillness that I can't surmount.  I just have to ride it out, like a passenger in my own mind, in my own body.

I can't even wrap my mind around how to comfort the baby I was, because the trauma is still so fresh.

***

If you have read this far, and now you're thinking: "Well, I would never do that," I encourage you to pause.

Because while I'm grateful that you realize how off-the-charts painful surgery without anesthesia would be, I want you to recognize that children with CP still endure this in some parts of the world.  

It's not the ancient history we would like it to be.

Both in the US and abroad, kids and adults with CP are forced to go through unbelievably painful Botox injections without anesthesia.  From what I understand, this usually occurs because of a combination of a misunderstanding on the doctor's part, when a parent requests a general anesthetic for their child.

There's also exhaustion and desperation on the parent's part because maybe they have just called out of work and rearranged their entire schedule (and their significant other's and that of more than one kid) to get this done. And everyone's here and it was so hard to get an appointment in the first place...

They are convinced by the medical community (who is there to fix and heal) that this really is the best option, so an impossible choice is made.

But even if it only happens one time, we suffer.

We suffer because we are still dehumanized in medical spaces.  While the general population doesn't even get a vaccine without being told "relax your arm" we are put through torturous procedures -- focused on places we can't relax.

I need you to know that even if you would never do what you have read about here, parents are still told to ignore when their baby with CP cries in that new gait trainer, or throughout that new series of stretches because the end justifies the means.

I need you to know that children with CP are still threatened with surgery at routine doctor's appointments with their parent right there in the room.  As a consequence for not stretching.  For growing (which can increase spasticity, despite dedicated stretching.)

Maybe you would never restrain your four year old to sleep (as I experienced) but maybe you would take a doctor's word, to have your child wear their braces twenty-two hours a day.  (Not recommended.  What is?  To wear them as the wearer decides and is comfortable.)

***

So, what can you do?

Pay Attention:  Take in the signals your child is giving you.  Take them seriously.   

Make Medical Decisions Based on Different Criteria: The criteria you would use for yourself or any nondisabled child.  Do they need this intervention to stay alive?  Do they need this intervention to ultimately mitigate pain?

Know That Most Medical Professionals Aren't Specifically Taught About CP:  One of my siblings once shared that in his nursing training, they covered CP in a single handout and he already knew everything on it, just from growing up around Tara and me.

Take Your Child's Cues:  If they are crying or distressed in the midst of a non-lifesaving intervention or with a doctor's words, you can intervene.  A lot of people won't take the words or behavior of a person with CP seriously, especially a child.  But if you are a nondisabled parent, you have the power.  Use it to protect your child.

If Your Child Has Medical Trauma, They Won't Just Get Over It:  Even if your intentions are the best you've ever had, reframing a day where your child had their autonomy taken away, where they were violated and / or restrained to something positive is only teaching them a lesson in denial.  Give them words to talk about it.  Give them space to play about it.  Help them name their feelings, and help them navigate their triggers.

***

To finish, I want us to consider this question: Is it really worth it to put your child through medically invasive procedures in the interest of achieving nondisabled milestones?

Is walking really that important?

I'm a full-time wheelchair-user right now, and I'm happy to have a way to safely navigate through the world.  A way that does not exhaust me.

And I can't begin to say how much I hope that the tide begins to shift with regard to just how quickly those in power positions -- in the medical profession, and nondisabled parents -- make decisions that will stick with those of us with CP for years to come.

We will carry this trauma in our bodies.

We will carry it in our souls.

Even if we can't remember it...it remembers us...the ghost of it rising in us when something nudges it awake.

I'm all for lifesaving interventions.  I'm all for adults with CP making our own decisions about wanting (or not wanting) medical procedures when we can consent.

What I'm asking for is awareness.  It's consideration.  It's trauma-informed care.

And it's a realization that people with CP will always have CP, no matter what.  To accept that, and learn to love us, will do you (and us) more good than you can imagine.

***

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Potentially Overlooked Aspects of Your Child's Transitional IEP

2,243 words

17 minute read

A few years ago, I was approached by a nondisabled parent about their child's upcoming transitional IEP into middle school.

"Is there anything we might be overlooking?" I was asked.

There was no way I could accurately sum up everything in a conversation, so I made notes.  And I kept them.

***

SAFETY (LOCKDOWN & OTHER DRILLS):

My first IEP of sixth grade there was a stark, one-sentence reference.  Something like: “Need to establish [a] safety plan.”  It was a month into the new school year at this point and nothing was set.  People with disabilities are often overlooked when it comes to safety / drills / evacuation plans.  It is early now.  You have time to think and plan.  Make sure a plan exists come September.

[Image: Tonia smiling as a sixth grader]

Fire:

-If there is more than one floor in the school, make sure that your child has all their classes on the ground floor, as well as something like a Tuck-and-Carry (a tarp like piece of fabric - this was provided to me by the school) they can keep in their backpack that can be used by pre-selected staff to safely carry your child down the stairs just in case, should they need to evacuate.  Another staff member should follow with your child’s wheelchair.

Tornado:

-Ensure your child is included in all drills.  

-Know that maintaining balance in a tucked position may be difficult (as stress - even in a drill - impacts our spasticity.) Ask your child if they need support.

Lockdown:

Cabinet - If your child is in their desk (on the perimeter of the classroom) have a closet / cabinet / cupboard empty / accessible and as close as possible to your child’s table / desk in each classroom.  In the event of a lockdown, your child can shelter there.

1. Lockdown is called

2. Your child gets in the closet / cabinet / cupboard

3. Staff / another pre-selected student closes them in.

4. Your child waits quietly until lockdown is called off.

Corner - If your child cannot access their cabinet location, the teacher or a pre-selected student helps them to the floor in the corner closest to them.

1. Lockdown is called

2. Teacher / pre-selected student lifts your child out of their chair

3. Teacher / pre-selected student moves them to the nearest corner.

4. Your child waits quietly until lockdown is called off.

Hallway - If your child is in the hallway when a lockdown is called, they will go into the nearest classroom and shelter there (see: Cabinet or Corner) until the lockdown is called off.

Restroom - If your child is in the restroom when a lockdown is called they will:

1. Stay in the stall

2. Return to the stall ASAP.

3. Keep stall door locked (or main bathroom door if a staff bathroom)

4. Wait quietly until lockdown is called off.

Cafeteria / Gym Class:

1. Lockdown is called

2. Teacher / pre-selected student lifts your child out of them chair

3. Teacher / pre-selected student carries your child to kitchen area / closest office / wherever kids are sheltering

4. Your child waits quietly until lockdown is called off.

Outdoors:  

If danger is apparent and your child is outside, they will:

1.  Go as fast as they can in their wheelchair away from danger.

2.  Find the closest safe place away from school grounds (determine this beforehand, discuss where they can go) and wait there.  Remember that landmarks / recognizable symbols work best.  (The McDonald’s sign, for example.)  Ideally, pick something they can see from school.

3.  Call parents.

***

LOCKER:

Opening their locker could be an issue.  I recall being a new sixth grader and struggling with getting my locker open.  (The first time using a combination locker.)  This involves a couple CP-related aspects that your child may also struggle with.  Fine motor (turning the dial), visual tracking (locating the right number) and sequential movement.  I remember getting in trouble for taking too long opening my locker.

If this is something your child wants to do, they should have the chance to do it, but recognize that this could be stressful.

Accommodations:

-If your child wants to work on and open their locker themselves, allow them extra time.  (Find time for them to practice before school is in session.)

- Keep only what’s absolutely necessary (for example, a jacket and cold lunch) in the locker.  This will ultimately save time and streamline your child’s day.

- If your child finds locker-opening stressful, have aide / para or a peer your child trusts open their locker.

- Could they share a locker with a sibling also in their school?  (Best locker experience I had was sharing one with Tara in high school.  It worked because we trusted each other, and could help each other.)

-Retrofit a locker with a lock that opens with a key (preferably house key-sized)?

RESTROOM:

Having access to the restroom is often overlooked.  I went through the majority of middle school and high school rarely drinking anything and never using the restroom at school because it took too long - and if I did chance it and try to go - there were nondisabled students in the accessible stall, using it to talk to friends.  (This is not uncommon for students with CP to face.)

Accommodations:

- Make sure your child can access the restroom.  Whether this means the outer door is propped ajar or whether it means they have an aide / para / peer to hold the door for them.

- Are there staff bathroom(s) that are more accessible (single person) and / or closer to some of your child’s classes that they could use as needed?

- Factor restroom trips into your child’s day.  (After lunch, perhaps?  Other times as needed.)  Recognize that this will take extra time, but as a basic human need, it is entirely necessary for your child to be able to stay hydrated during the day and use the restroom, the same as any other student.  

-If students are only allotted a certain amount of bathroom passes per class per quarter/trimester/semester, ensure that this number is sufficient for your child’s needs. Adjust if needed.

PASSING TIME:

In middle school, we only had two minutes to go from class to class.  For kids with CP, this is not feasible.  your child will likely need more time to get from class to class, even with their wheelchair.

Accommodations:

- Allow your child two sets of textbooks.  (One set to keep at home, and the other in each classroom.)  This will minimize locker stops and allow them to maximize them passing time getting from place to place.

- Give your child extra time.

- When possible, have your child’s classes near each other.  If there is a way to avoid them needing to travel repeatedly from one end of the school to the other, that would be ideal.

- Recognize that it may take more time for your child to orient themselves in a new school and locate all of their classes due to place blindness - a common issue for those of us with CP.  If possible, they could come in before sixth grade starts on a quiet day (outside of an open house type of event with tons of children) and start to familiarize themselves with the new space. Take pictures.  Having a para / aide (if they do) can help in finding their way when school actually starts.

***If your child has class in an outdoor / portable classroom, recognize that they will need to be able to safely access this even in cold weather.  Factor in a stop for their jacket.  Factor in snow that might hinder their entrance.  Make sure they have help to navigate, especially in the event of cold / snow.

GYM:

Gym class presented various issues.  Often, it was spent apart from peers.  (Scorekeeping is okay once in a while, but when you are always the scorekeeper?  It feels exclusionary.)  Or I was expected to participate in ways that felt unsafe to me.

Accommodations:

- If the kids have to wear a gym uniform, allow your child to, perhaps, only change their shirt.  (This is an accommodation I actually had and it worked well.)  It will save them time, and it will not set them apart from peers as much as not expecting them to change at all.

-If there is a swimming unit, let your child wear their suit to school under their clothes, so changing is as efficient as possible.  (Bring undergarments to change into after swimming.)  Allow your child to opt out of post-swimming shower (no safety bars, slippery, a safety hazard) and shower at home that afternoon / evening instead.

- Allow your child to have options for adaptive equipment on gym days (or allow them to use the adaptive equipment that feels the most safe to them.)  For this to be the most effective, have the gym teacher give your child a heads-up about what they will be doing next time, so they can ask questions and/or figure out what they’ll need.  

-Request a lesson plan at the beginning of the quarter/trimester/semester to get a better feel of what will be covered when - and to anticipate and work out possible issues in advance.

- Ask your child what they feel they need in a given situation.  Don’t assume because they can stand and walk, that they’ll feel confident without their chair in a rough and tumble middle school floor hockey game.  Likewise, don’t assume because they use a wheelchair they cannot participate in a sport.  Get used to thinking together and brainstorming solutions on the fly.

CLASSWORK:

Anything physical takes those of us with CP more time to complete.  This includes writing.  Chances are good that your child might need accommodations in the classroom as well.  

Possible Accommodations:

- Shorter assignments

- A copy of the teacher's notes

Math/Science/Art:

Know that many kids with CP struggle particularly in math.  (A lot of science has a heavy math component.)  If your child is one of these kids, they may struggle in a similar way I did.  I could learn material (though it took longer for it to make sense) to do a certain problem or set of problems.  But I could not carry over information I had learned and apply it to a new set of problems.

Subtracting, dividing, fractions, area, and any spatial concepts (so, art may be difficult as well) required a lot of extra time to understand.  

Possible Accommodations:

- It may help to hear the material presented in a different / simplified manner.  Sometimes hearing a peer explain a concept can make sense more quickly than hearing a teacher's explanation.

- Extra time on tests.

- Any opportunity to teach with manipulatives (like yarn, or blocks - anything tactile) has the potential to really help a math concept “click.”  If possible, have hands-on learning opportunities connected to the math being taught.

ORGANIZATION:

Organization is difficult for those of us with CP to maintain because we are often in a hurry.  If we are rushed, we cannot also make sure things are neat and tidy.  Any opportunity for your child to have access to better organization will help them succeed.

Accommodations:

-Assignment notebook

-Desktop organizer for table in each class / some sort of portable organizer to bring from class to class (Google “desktop organizer” for ideas)

-Erasable pens / mechanical pencils (sharpening pencils = cumbersome at best)

-Color-coded folders and notebooks (different for every class, clearly labeled) Yellow = Math, Green = Reading etc.

-Fanny pack / small purse for personal items

LUNCH:

In sixth grade, I sat with the other kids with disabilities because our paras brought our lunch trays to the same table.  None of the other kids sat with us.  I hated not having a choice in where I sat.

Accommodations:

-Para / peer to help go through hot lunch line, bring tray wherever your child wants to sit

-Lunch from home (which would allow your child to have access to their own food and decide where to sit.)

FIELD TRIPS:

-If possible, get a comprehensive list of these from teachers at the beginning of the quarter / trimester / semester.  

-If there are field trips that do not look feasible (for example, in sixth grade, I joined in on the ski trip and stayed in the lodge the entire time) you will know that ahead of time, and can make the decision to keep your child home on those days.

-Also knowing about field trips in advance allows you to contact the venues ahead of time and inquire about accessibility as thoroughly as is needed.  (Visit corresponding websites, so your child can begin to visualize the space ahead of time when possible.)

***

Though these notes are specific to a child with CP, I hope they give an idea of some areas that may be overlooked.  Realize that adults with your child's disability have insight on what your kids might need.

Your kids need allies in that room.  

And while I can't be in the room with your kids, I want to help them in any way I can.  IEP meetings were nothing short of traumatic for me.  

But they don't have to be.

I hope these notes offer some hope, and are the beginning of a new kind of experience for kids who have IEP meetings, knowing that their whole self is being looked after.

***

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When I Failed for the First Time and Didn't Know It

1,009 words

8 minute read

TW: Emotional abuse of a child

I'm in eighth grade.

I'm trying to keep quiet about school.  I can usually get Bs and the occasional A. (With the occasional C.)  But today, in Oral Communications class, we all found out how we did on our speeches that rely on visual aids.

I can't draw at all.  Charts and graphs are confusing.  Asking for help is asking to be mocked, so I don't even bother.

Oral Communications is a class about giving speeches, not about how well we can draw.  So I'd made the informed decision to give my speech without a visual aid.

Everyone else has a letter grade written beside their score.

Everyone but me.

"Girls, how did you do on your speeches today?"

Tara offers her grade reluctantly.

"Tonia?  What did you get?"

"I don't know," I admit.

And then I escape to my room as soon as possible.

***

I may not be sure of my letter grade in this situation, but I am sure that I'm in big trouble.  

My escape hasn't done what I hoped.

I've been followed.

And the conversation is still going on.

"You need to tell me what you got on your speech."

"I already told you, I don't know..." I repeat.

"Of course you know!  Stop playing games and tell me right now!"

"I don't know!  I'm telling the truth."

Patience is wearing thin, but I'm not acting clueless on purpose.  I really have no idea what to say. 

"Show me your grading sheet.  Let me see it!"

I hold off.  I stall as long as I can, but it's no use.  Eventually, I give in and dig around my backpack for the paper.

"Your grade is right here!"

"No, it's not.  I told you.  There's no grade there.  Just a number, so I don't know what I got." I protest.

"32 out of 50!  It says 32 out of 50 right there!  That's an F!  That's your grade!"

Oh.

Crap.

It all goes downhill from here.

My discomfort at the situation makes clear some "bad habits" I've developed -- an adult's words, not mine. My adult has honed in on these things and has told me - in no uncertain terms - that they are unacceptable.  I need to change.  ASAP.

[Tonia, unsmiling, in eighth grade]

Case in point:

While I'm being criticized, I cope by smiling.  Laughing.  Putting my hands up suddenly to cover my face.  I am told this "looks like you're about to barf!  You need to stop doing that!"

Also zeroed in on is my tendency to just...never make eye contact.  Because looking someone in the eye when they're yelling at you is nerve-wracking.  But it's something all adults in my world insist on.  Something I am told I also must change, going forward.

I'm eager to get out of this situation as soon as possible, so I say, a lot of "Okays" and "I knows" in hopes that I will be left alone.

I'm not.

Instead, one of my school notebooks is located -- along with one of my pencils.  I watch in disbelief and embarrassment as the words are written as a heading across the page:

Tonia's Change

1.  NO MORE BARF HANDS!!!!

(Beneath this, there are a few more sentences.  About what is expected instead?  About how unsightly my habit of covering my face is?  My memory won't give up those details.  But the formatting looked a lot like this.)

"Now, [the school guidance counselor] said you didn't look at her when she was talking to you.  That's really disrespectful."

(This visit has merged itself into one single awfully humiliating memory, where the counselor told me sternly: "Tonia, you need to LOOK at people when they're talking to you," with an obvious hand gesture.)

Now, the humiliation is only growing.

The writing continues:

2.  LOOK PEOPLE IN THE EYE WHEN THEY TALK TO YOU

(Again, this was followed by a few more sentences, but I can't tell you their content.  The first point and exactly how it was phrased is permanently stuck in my brain.  The rest is rather fuzzy.)

3.  

(There was definitely a third point on this list.  Or maybe it was just two things?  Like I said...all these years later, I'm not clear on specifics.  What I am clear on, is what happened next...)

Scotch tape is found.  The awful paper gets brought over by my bed.

"Now, I'm going to hang this right here."  The paper is secured the paper to the wall, right by the head of my bed - and in clear view for my little brothers, and any visiting family or friends to see.  "...So that you can see it and remember what you need to do."

"No..." I whine.  

"Yes!  You can't do these things when you grow up."

"I'm taking it down..." I say, rebellious for a moment.  (I won't really be forced to be embarrassed me like this.  I won't really be expected me to leave that up...will I?)

"You'd better not.  I'm going to be back, and I'd better see that still up or you're going to be in even more trouble."

And up it stayed.  For at least a year, until I moved bedrooms.  I had to explain it to friends.  To my younger cousin.  It was beyond humiliating.

Knowing that at least one adult came in our room often, I eventually rebelled as much as I dared, moving the offensive paper from the wall to the side of my desk, which faced my pillow, but not much else.

For a long time, I convinced myself that this was done out of care and concern.  It was the only way I could live with the ongoing humiliation.

These were hallmarks of abuse, trauma, and my then-unknown neurodivergence that someone didn't like seeing, so they humiliated me out of them.  

By ninth grade, I think, I forced myself to make eye contact, no matter how uncomfortable I felt.

And there were no more barf hands.

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Interview Questions About Writing

1,470 words

11 minute read

If you know me, you know it doesn't take much for me to nerd out and talk about writing.  Since I'm between projects currently, I found these writing questions and answered the first set for you here:

What inspired you to start writing?

When I discovered The Babysitter's Little Sister series as a sixth grader, I was super inspired by how real her characters seemed.  It made me want to write my own story with my own characters.

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How long have you been writing?

Since I was eleven.  So, most of my life.

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When did you start writing?

I wrote my first story in a notebook in sixth grade.  I used to get in trouble for writing in it in school.  It's missing several pages (and the cover) now, but I still have the notebook, and I put the existing story into a Google Doc for safekeeping.

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Have you always wanted to be a writer?

Not always, but ever since age eleven?  Writing's been it for me.

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What advice would you give a new writer, someone just starting out?

Write because you love it, and it really helps to have people in your corner who encourage and support you.

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How do you handle writer’s block?

Having a schedule and having a specific combination of scents I like (lotion, candle, oil) really helps writer's block not be a thing for me.

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What, in your opinion, are the most important elements of good writing?

The most important element of good writing is caring about the characters.  Make sure you're writing the story you want to write and that your love for the characters comes through.

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What comes first, the plot or characters?

Characters.

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How do you develop your plot and characters?

Characters have always been tough for me, so I've always been partial to writing with established characters (fanfiction).  From there, I can branch off and make it an AU so that the characters work in the story I want to tell.

The plot, in the beginning is really what's a thing that I really care about and / or want to explore more?  

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How do you come up with the titles to your books?

They're usually just words or phrases that pop into my head that summarize the story somehow.

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When did you first consider yourself a writer?

Oh my God.  I was ten, and I had just finished writing my autobiography for a school project.  In my About the Author section I was like: "I love writing books!"

[Tonia, age 10, smiling, right around the time she finished her autobiography]

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Describe your writing space.

My desk at my laptop in my office.  I've got a bulletin board behind my laptop that has all the cover art for my books (designed by friends).

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What time of the day do you usually write?

In the morning / pretty soon after I get up.

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Describe a typical writing day.

Get up.  Post things to my Tonia Says Facebook and Twitter.  Then (hopefully) open my Reading at the Cafe candle (coffee and chocolate pastry), put on some orange scented Energy lotion and a little You Slay pineapple roll-on oil.  Then, I'll write for an hour and a half on average.  My goal is a chapter at a time.  Sometimes, I'll pause in the middle for breakfast and finish after.

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What is the most difficult part about writing for you?

Oh my God, the self doubt is brutal!  Every few months, it seems, my rejection sensitivity reaches an all time high.  And since my writing is so closely tied to my sense of self (I put so much into my writing) it's really hard when a chapter does not go over as intended, or it's just been a certain amount of time without positive feedback.

(Also getting ideas and researching is really hard for me.  Tara really helps in those areas.)

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What is your work schedule like when you are writing?

The same as it is when I'm not writing?

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What would you say is your most interesting writing quirk?

My most interesting writing quirk is apparently not drafting and instead doing like three rounds of editing as I write?  Also, when I write it often feels like I'm just transcribing what my characters say.  And that's really enjoyable.

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Do you hear from your readers much? What do they say?

My sister and two closest friends read everything and their comments to me are everything.

I struggle with wishing more people would read my writing, instead of reading content featuring disabled characters written by nondisabled people.

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How do you do research for your books?

Usually a good Google search will do the trick, but if I need something more involved, like a timeline, I'll ask Tara for help, because she loves making timelines (and she's so good at it!)

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What are the tools of the trade?

My most important one is a notebook that Tara and I share.  We write back and forth to each other each night (before a writing day).  I'll usually share where I'm planning to go in the next chapter and check to see if Tara has any ideas or if she's noticed any plot holes or things I've missed.

Before actually beginning a project (and during) I'll use it to jot down brainstorms or ideas for scenes or bits of dialogue.  Then, I'll check them off as I get to them.

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What does success mean to you? What is the definition of success?

Success for me is finishing something.  So whenever I finish a novel, it's a big deal.

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Is writing your full-time career? Or would you like it to be?

Pretty much?  I don't get paid, I write for the love of it, but it's what I spend most of my time doing.  Either novel-writing, or blogging.

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On a typical day, how much time do you spend writing?

90 minutes to two hours.

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Are you on social media and can your readers interact with you?

Yes (links are at the bottom of each post.)  And please interact with me.  (Positive feedback is my jam.)

When you’re writing an emotionally draining (or sexy, or sad, etc) scene, how do you get in the mood?

Writing is cathartic for me.  As a trauma survivor I'm usually emotionally drained and at least a little sad.  So, it's not really a challenge for me to go to dark places.  (Sexy?  Not so much, but I don't write that.)

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Writing can be an emotionally draining and stressful pursuit. Any tips for aspiring writers?

Pace yourself.  If you need to take days off, take days off.

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How do you deal with emotional impact of a book (on yourself) as you are writing the story?

It's hard!  I've cried writing scenes.

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How do you handle literary criticism?

Negative feedback is hard to hear.  I'm generally always braced for it, so it doesn't catch me off guard.

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How do you deal with poor reviews? 

It's frustrating.  But I try to remind myself that not everybody has to like everything I write.  (Again, I'm pretty much always braced for criticism.)

How much ‘world building’ takes place before you start writing?

I don't really get into that stuff.  That's where having established characters helps.

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Is there lots to do before you drive in and start writing the story?

In my current series I usually need about 2 weeks of planning before I'm ready to dive in and start writing.  By now, it's down to making sure I do a character survey and various personality tests for any new characters.

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When writing a series how do you keep things fresh, for both your readers and also yourself?

Sometimes, a time jump helps.  Sometimes, introducing new characters.

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What was your favorite part, and your least favorite part, of the publishing journey?

My favorite part is when people read it.  My least favorite part is the pervasive belief that writing needs to be traditionally published (by a big name, besides) to be valid.

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Do you find it more challenging to write the first book in a series or to write the subsequent novels?

The first one, for sure!  Creating something where nothing exists is always the challenge for me.  Sequels are almost relaxing because so much is already established and I've gotten to know my characters.

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Describe your perfect book hero or heroine.

My writing honestly doesn't have those.  It just has people, living their lives.  I don't want to write about somebody perfect.  I can't relate to that.  I'd rather read (and write) about characters that feel real.  

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