The Plastic Castle

I'm not sure I've ever been as stressed in my role as parent as I have been the last few days.  Although, I'm not the best person to ask because I tend to forget about stress easily.  Some would think that's a good thing, but much like the goldfish in a fishtank, (and as Ani DiFranco) would say....

They say goldfish have no memory
I guess their lives are much like mine
And the little plastic castle is a surprise every time

But I suppose the way my journey to parenthood came about...it's probably just as well I don't internalize stress.  14 years of hormones, emotional roller coasters, failed IVF attempts,  disappointments, pregnancy loss,.....  perhaps it really is a gift.  Endless optimism.  I supposes it's a blessing and a curse.

It's certainly a curse when it involves your child.  And then knowing your child is stressed is 10X more difficult.  Now, what skill I DO have as super-human powers is empathy.  It serves me well in my career-especially when I was doing bedside nursing.   We'll just sum it all up into "I'm a good people reader."

So the combination of discovering the little plastic castle again (bringing no skills to the party) and watching/reading stress and fear on my child's face ( shit....she's terrified!),   has wrung me out.

Nea and I worked weeks prior to her surgery working on eye drops.  We had several successes as we worked through this process.  I bought 3 bottles of saline, suggested by my Child Life Specialist friends.  Nea put eye drops in my eyes and the eyes of some of  her stuffed animals.  (Gratefully, they make many stuffed animals these days with big 'ol eyes.-easy targets)  And of course I put drops in her eyes.  It was a process and we worked through it together.  She was given all kinds of support and encouragement and we high-fived a lot!

We were ready!

The surgery went well.  The surgery team at our local Children's Hospital is amazing.  From the pre-op stress free morning to the frequent communication from the staff....we were in good hands.  They gave her Versed (a med that causes drowsiness and forgetfulness).   The surgeon felt it went very well and we were able to be with her in the recovery room when she woke up.  She never thought we were separated and that we were always with her.  That's exactly how I wanted it to all go down.

She didn't open her eyes in recovery, or riding in a wheelchair out the door, or on the ride home, or when laying in her own bed, or after her nap, or after eating some food and drinking.....

She didn't open her eyes at all.

And she was terrified, confused, exhausted, frantic....and all sorts of other emotions.   She clung to her Papa and I all evening "Please, don't leave me alone! Please!"

When it was time for eye drops, I was hopeful.  Hopeful because at LEAST we had done this part.  At LEAST we had this under our belt.  But I never dreamed she wouldn't open her eyes, so while she was asleep I haphazardly tried to get in drops, slathered on the ointment and hoped for a better day.  The truth of the matter is, the drops are an antibiotic and they MUST be given to keep her eyes from getting some sort of nasty infection while they are healing.

The next day she didn't open her eyes until well after 10:00.  And what I didn't take into consideration was the pain in her eyes, the pain in her head, the irritation of her eyes....and how different the world would look.

She had (hopefully I can speak of it in past tense) alternating esotropia.  So she only saw 3d images (stereopsis) 50-80% of the time.  Realigning her eyes allows her to see 3D....all the time.  A little overwhelming.  Okay, probably a lot overwhelming.  "Mama, I can't take it anymore.  My eyes are not making my brain work right!"  Your eyes are separated on your face.  One eye sees one image, the other eye says the same image, but it's from a different perspective.  Your brain then fuses those images together and creates a 3D image.  For Nea, that only happened once in awhile.  And now, it happened every time she opened her eyes.

So let's look over what I did not take into consideration....

Pain, increased depth perception and dimension, head pain, swelling of the eyes, sandpaper feeling every time she blinks,,,,and now eye drops?  I'm an idiot. The doc made it sound so easy peasy.  But I have a girl with sensory issues and these were big deals.  2 days of all of this really took it's toll on all of us. I am grateful for family and friends who stood so strong for us as we muddled through.

Nea's post-op check went well.  She was given the thumbs up for "so good so far" by the doctor.  He did an exam and watched her eyes as she focused on things far and close.  Thus far, the eyes stay aligned.  All her redness, swelling, pain, etc. are all normal.  And the eye drops have to continue for at least 10 more days.

Here's how I knew my girl was on her way back from the nightmare she had been immersed in the previous 48 hours.

During the office visit, the tech does an exam before the doctor comes.    She had Nea cover her eye with a paddle and read the letters on the screen across the room.  Nea wanted her new Kitty to get the exam done as well.  The tech was more than willing to do so, but insisted that Nea went first.

So Nea read all the letters, first the left eye covered, and then the right.  The tech would begin the exercise by saying, "Ok, how about now?  Can you read the letters?"  Nea would smile and read them off easily "M....D....L.....Z....."  The tech told her she did a good job and moved on to the next slide, "Ok....can read these letters?"  Without hesitation Nea chimed right back, "O...B....S....T..."

Finally it was Kitty's turn.  Nea took the paddle to cover Kitty's left eye.  The tech and I both smiled at how cute the scenario was, but Nea was very serious.  She looked at the tech, "You have to say it..."  The tech jumped right in, "Oh!  Sorry....okay Kitty how about now?  Can you read the letters?"

"Mreow....Mreow....Meorw.....Meorw"





Endless optimism works around here.  We'll keep it.

Language is HELL

  Nea is a 6 year old with 6 year old issues.  But what she doesn't have is 6 year old words.  Oh, don't get me wrong-she has words and lots of them.  But her current language does not afford her the language she needs to navigate through her 6 year old problems.

Nea has spent her whole life creating words, sounding out words, learning new words, learning correct annunciation of words, re-learning new words, .....you see where I'm going here.   Vocabulary is an ongoing, continuous process.  Of course that's a normal part to language development but when using words in the correct order to convey a message or a need is not something that comes easy for you....language can be a frustrating thing.  And language is one of those things we use every single day in every single instance.  Because of that alone, many autistic people would rather just skip all that language and communication thing.  We hear from autistic adults that it's emotionally exhausting and mentally taxing.

Phrases heard around this house often....

"Nea, look at me.  (pointing my finger to my mouth). It's  Name, not Mame.  Try again with the N sound"

"Stop pointing, use your words."

"Slow down when you're talking"

" Let's try again with the 'th' sound.  So you say feath-er, not feav-er"

And on and on.  I'm sure it's exhausting to constantly have to rethink and redo your vocabulary when you think you know it one way, but it's really another.  And lately she's been more frustrated with the whole process.  So other common phrases around this house include... 

"NO!  That's not what I mean!"

"I said it already!  Like I said!  You're not listening!"

"What is the word for this?"

"Just pay attention to what I said Mama!"

Both of us are trying to meet the same goal, but we both are traveling different paths to get there.  We just keep trying to figure it out together, but it's not easy.  

Let me share a couple scenarios.

Nea is pretty savvy with her iPad and doesn't really require much help with it.  However, she stumbles with stuff from time to time and has to bring it to one of us for some help.  The other day was watching a show on Netflix and ran into some trouble.

"Papa, I don't want to watch this show anymore"

"Okay, well you know how to switch it to watch a different show"

"But I WANT TO WATCH THIS SHOW!"

"You just said you didn't want to watch it."

"Yes I do!  I do want to watch it!  I don't want to watch this show!  Listen to me Papa!  I am saying it!"

By this time it's gone from 0-60 in about 30 seconds.  Lots of feet stomping and slamming down toys.  She's damn hoppin M  A  D !!

"Nea, I understand you're frustrated.  But we have to figure it out together."

*deep breath*

"Okay, Papa, I want to watch this show.  But not this show.  I'm tired of watching about the secret boxes." 

"Ohhh!! You want a new episode?"

"Okay...sure, episode.  I want a new show.  Do you get it?"

"Yes, I get it.  When you want to watch a different show of the same show....it's an episode"

"Got it."

Let's hope.  Because the two of them were very frustrated with that encounter.  

The next day, her and I had a crazy sort of communication error as well.  We were getting ready to leave the house for the day and I needed to brush her hair.  (uh, this hair, it's a creature of it's own!).  So as I'm brushing through it she says....

"Mama, do my hair with the curls"

"The curls?  I don't remember doing your hair in curls.  Well I mean I did one time, but just with 1 curl"

"Yes you did!  You put curls in my hair and you did it!  You DID!"

"Nea....calm down.  I know you're trying to find words to tell me what you want, but we haven't figured them out yet.  So let's stay calm and work on it."

"Okay, well then you'll do the curls?"

So I took her upstairs to the bathroom and heated up the curling iron.  I put a couple curls in her hair and handed her a mirror.

"NO!! Mama!! I said with the curls!!  You are not listening!!  You did it last time before!  With curls!"

I'm at such a loss.  I have NO single idea what she's talking about. And she can see the look of confusion on my face.  At this point she starts pantomiming.  I'm standing there in utter disbelief as she starts acting out some sort of zig zaggy thing in the air.  She starts high and zig zags her finger all the way down to the floor.

"Like this!  Curls like this.  Do you see!??" (More zigzagging)

"Honey, I am not understanding.  I'm sorry. I don't know what you mean when you say curls.  I don't think that's the word for what you are wanting and I can't figure out the word."  

At this point her face is red and she's screaming.  She is at DefCon 8

"MAMA!!!  THE CURLS FOR MY HAIR THAT GO LIKE THIS!  (more zigzagging in the air high to low).  YOU DID IT BEFORE!  CURLS LIKE WHEN THE KIDS DO RAPUNZEL'S HAIR!" 

Oh sweet Jesus!

"You mean a BRAID?.......  You want a braid?!"

"That's what I said!!"

I was praying for wine at that point- but grateful that I've watched that movie 429 times!

And yes indeed, I braided that hair.  Braided that sucker like my life depended on it!!!