School

"How's school going?"

It's the number one question I get asked these days.  It doesn't bother me, I love it that people are so supportive of my girl and that they want her to succeed.  But I cringe when they ask me because my response is gonna hurt...

"It sucks."

Now, before I go any further. I have to make a few things very clear.

I am very supportive of our school district, the IEP process, our amazing school, it's awesome teachers and pretty much everything that goes along with education.  I have many school teacher friends.  That means I've been privy to years and years of conversation about students, parents, schools, teaching, frustrations, victories, challenges and everything in between.  Maybe I was such a late bloomer in my parenting journey just so I could spend good quality time listening to my teacher friends and learning from therm.  Suffice it to say that I have nothing but love and respect for what teachers do every single day.

But right now, my kiddo hates school.

I can't express to you the rough ride we have been on since August 24th.  The first couple of days were pretty okay.  But after that it went downhill.

Mornings are spent crying about having to go to school.  Evenings are spent lamenting about having to go to school the next day.  She lives for the weekends.  One week into the school year and she was dying to get to a weekend.

We knew that putting her in gen ed was going to bring her several challenges.  The pace would be much faster, the environment would be more chaotic, and the sound would be louder.  Not to mention learning and integrating into a group of neuro-typical kids, which was probably going to be one of the hardest things to do for her.

I have been in touch with the teacher who is very sympathetic.  However, there's lots going on in that classroom now because there are 28-29 kiddos.

In one classroom.

I'm not sure I could handle that either.  Add the number of kids, with first 2 weeks of jitters and trying to transition along with everyone trying to learn a new routine....and it's a hurricane of giant proportion.    Her teacher is doing the best she possibly can and I give her props for keeping it all together.  I'm sure it's not an easy job.

But Nea's tears every night has my heart aching to help her in some way.  And quite honestly, I don't know what could or should be done.  She has all kinds of things in her IEP to help her in this environment- but everyone is so stressed trying to get through the day, I hesitate to add "Frustrated Parent" to the mix.   I'm a firm believer that standing up and yelling and acting all crazed NEVER gets you anything.  Don't get me wrong, I can do that.  That's the easy route for me.  However, my life lesson is "Learn How to Filter".  It's taken me over 40 years to even get to the beginning chapter of that lesson book.

That said, a decision was finally made to split the classes and bring in a new teacher to ease this pressure cooker.  Moving students (as hard as that will be for students) is really the best thing to do to create a successful learning environment.

Every time Nea wears a head band to school she takes it off and then starts playing with it.  Last week, she begged us to let her take her earmuffs to school.  "It's too loud.  Everyone is yelling."  I don't think everyone is yelling, but her perception is her reality and she needs some relief from the sound.  Her daily report from the teacher of how the day was  usually sits in the yellow/orange zone.  She can't keep her hands to herself, she's not paying attention, she's not listening, .....on and on.

Headphones for the classroom and a chewy/fidget necklace are currently on order.

It's been disheartening for her and for me both. But I told her that I didn't care what color she ended the day on....as long as she tried her very best.  And it was okay if she came home with a yellow day, as long as she tried her very best.  We are just going to have to ride out the storm until the classroom split.

Thankfully, she has a buddy in the classroom with her.  They met last year in the special needs class and Lexi (not really her name) moved on to the mainstream Kindergarten a couple months into the school year.  Nea was really disappointed-but they saw each other at recess and went to each other's birthday parties.  They stayed connected.  That's a big deal in our world.  To have a connection with someone that you don't see everyday....that's some big stuff.

So Nea and Lexi are back together and it's been one of the best highlights of the year.  When we went to the open house at the beginning of the year, it was Lexi's desk that Nea showed me first.  Not her own.

Being around neuro-typical kids for 6 hours a day is different for her.  Her social skills are still emerging and she still struggles to find a way to connect to another kid.  Nea tends to jumble words and mix them around or string thoughts together that are odd.  Most of her peers find that off-putting and will simply walk away.  I watched it unfold at a school event when she would walk up to kiddos in her classroom.

"Hi!  I have a Grandma.  Did you see?  There's dancing.  Can you?"

....and the girl just turned around and left, leaving Nea a bit confused.

But not Lexi.  Lexi will hang in there.  You can watch it on her face....she watches Nea intently, tries to find the connections (where none probably exists) and waits it all out until Nea gets the right words together.  Lexi's in it to win it.  I'm so grateful for that little girl and the friendship bond these two are creating.

So the short answer is that school does suck.  However, the long answer is this....

School sucks now, but I think it will get better

I have great hopes for the class split.  Her resource teacher and speech therapist have both been in touch with me as those services have started.  And, Nea is having blue and green days since the start of those.  I think it's because she gets pulled out of class to work with these specialists and it's a break she very much needs.

A note from the Resource teacher to me (I LOVE IT!)

Here's something that also is of importance.

I could not imagine one bit and actually have no expectations that she's learning much of anything.  The environment is just too hard right now.  But, as usual, I'm wrong about most things when it comes to this girl.

I've noticed her speech changing.  The cadence, the rhythm, the vocabulary. She pauses differently, she uses more relaxed sentence structures.  It's very interesting to watch language development in a kiddo that already knows a language.  But it's almost like she's learning stuff for the first time, trying it on and seeing how it fits.  Spending 6 hours a day with her peers is having an influence on her.

We have miles to go before we can sleep....but we are getting there.

Go With It

My girl has been in our school system since she was 3.

Let me be clear.

THREE.

She received services from the Early Intervention program and then when she turned 3 years old, she was handed off to our local school district.  I took her to school that 1st day.  It was in the middle of the school year because of where her birthday fell.   The teacher was a dynamic woman who had the attention of every 3 and 4 year old in her care.  She walked them through the halls singing a song, and they followed her along like little ducklings.  When the group got to the classroom door, Nea walked in right with her duckling friends and did not shed one tear.  I was shocked.  The teacher just smiled and said, "Let's just go with it.  She'll be fine."

And it was that experience that set the tone for my expectations on how school life should be for her.

It was that summer that we did our first IEP.  An intimidating experience, but I learned much.  I brought my "Nea experts" with me (her OT, DT, Speech therapists) and the team made a plan.  That entire team that consisted of roughly 15 people made a plan that would give Nea the best success in school.

1st year at the early learning school

We've had several IEP's since that first one.  And I know that for many people, they are a harrowing experience and full of frustration.  Both for parents and teachers alike.  In my honest opinion the system works against everyone who is trying to do the right thing for a child.  It's not a political post, so I'm going to leave that right here.   :-)

We spent 2 wonderful years in our early learning center with an amazing staff of teachers.  Nea really blossomed there.  Every week she would say new words, her jargon speech eventually vanished, she could retell stories, she talked about friends....and on and on.  I am always grateful  for her time spent there as I think it built her a very strong foundation.

Moving to the Big K was a tough IEP meeting.  Nea was doing well academically, but needed assistance with focus, with redirection and with social cues.  We labored a long time trying to find the right place to put her.  We finally landed on a Cross- Cat (cross category) classroom.  This was a special needs classroom of K-2nd graders with a special education teacher.  The unknowns were too many for the IEP team to put her in a mainstream Kindergarten class.  Could she handle the stress of it?  What about the noise?  How would she manage the hustle and bustle?  We just couldn't wrap our heads around something we thought might be setting her up for failure.  So we decided to put all the safety nets in place and put her in this cross-cat classroom.  She still had her Speech Therapy and her OT alongside.  We also decided she could benefit from being in that mainstream K class- so we put her in there 1 hr a day.

Nea had a good school year.   We were very pleased with her progress.  We ran into a couple social snafu's the last  4 months of the school year, which made it unpleasant for everyone.  We worked closely with the teacher of course, but those last few months were a bit rough.  And we heard a lot of "I don't want to go to school today."

Penguins on a zoo field trip!

Her IEP came up in the Spring to decide what was going to happen in the Fall.  Again the team all came together to decide what the plan should be.  Without a doubt, everyone felt that she should be in a mainstream classroom and a chance at different academia.  And in the same breath we all worried if she could handle it or not.  Could she handle the stress of it?  What about the noise?  How would she manage the hustle and bustle?

She was doing well in Math, but still was behind in writing and reading.  Clearly those were the areas we needed to give her extra help.  Could we put her in a mainstream classroom with some extra help?  So we gave her resource minutes for those pieces to her school day.  Her time in OT was done at the end of the year last year, but she still requires speech therapy.  Even with all these safety nets in place, we all hesitated.

It all looked very familiar to me.  Even though this was an entirely different team of people (teachers, therapists, social worker, psychologist, etc.)  they were all saying the same thing I heard around a different table.   I jumped in...

"Guys...this is the exact place the team at the early learning center was at last year.  We went a little bit of a safer route.  It paid off of course, but here we are again."

Someone else chimed in...

" We won't know if she can do it, unless we give her the chance to show us."

Someone else said,

On the School Playground

"She's eager to learn, we just need to give her a few extra pieces"

And then, a teacher said....

"Ok! Let's just go with it."

That took me right back to that day I left my 3 year old with her very 1st teacher whom I didn't know, but had to believe I was doing the right thing.   It reminded me that letting Nea take the lead on so many aspects in her life usually turns out better than ever imagined.

The energy in the room changed.  There was lots of joy and excitement....

"I think she can do it!"

" I think she's got it in her!"

"This is a great plan!  It's the right thing!"

"She'll do well!"

So Nea starts in a mainstream classroom, with lots of reasource minutes for the areas she has difficulty.  It's a large group of kids this year, which I'm not going to lie...has me worried.  However, if we decide it's too much for her- the plan is to put an aide with her.  The aide can help her focus, keep her on task, assist if she gets overwhelmed, etc.

Nea is excited to start school.  She gets to go back to the same school AND (bonus points!) she already knows the teacher.  That 1 hr a day she spent in mainstream K.....that same teacher is going to teach 1st grade.  That's a wonderful thing and I hope an indicator of a smooth year!

The homework will be very different, the pace will be very different, the social interactions of NT kids will be very different.    I believe she can handle it or I wouldn't have allowed it to happen- but it doesn't mean I'm not a nervous wreck.

1st grade.  There are just no words.

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!!!

How to Have an Adventure- 101

So, I told Nea we were going on an adventure today. Why would I do that?

Summer is here (only 2 days of school left) which means routines will be different- if they exist at all and that can sometimes make my girl a little topsy turvy.

"What are we doing Mama?"

"I haven't decided yet.  We'll pack a bag of extra stuff  and see where the day takes us."

She looked at me, concern on her face, "But we don't know where we are going?  What if we get lost?"

"Naw, we won't get lost.  I know this town very well and I can get us home."  I replied.

"Well, okay, but what's the plan?"

Ahh...the plan.  Always wanting a plan, a routine.  And yes, I am fully aware that this is comforting for many people.  But I am also aware that for Nea, she can get so caught up in "the plan" that when there's a bump along the way...it's a disaster.  Who can forget the pancake incident a few years ago because we sat in a different booth at a restaurant?  Not me, that's for sure.

Now, spontaneity is something I cherish.  In fact, it's deeply embedded in my psyche and an integral part of my skill set.  However, it's not the easiest thing to teach.  Therefore, you just have to model!

"How will we know we are doing the right thing?" she asked me.

"Because we'll feel it, and we'll know."

"Hmm....I don't know Mama."

"Let's go!"

Out the door we went!

We headed to our friends house that live in the neighborhood.  They weren't home (on their way however) but we saw another friend a few houses down.

"Oh!  Hey! Let's go visit T!"

"But you said we were visiting, S and L"

"I know, but they aren't home right now so now we have a new plan."

"This is weird."    (Oh my poor girl)

We stayed at T's house for a few minutes and chatted.  Nea explored the plants on the porch, jumped into the conversation from time to time, checked out the dog through the window and then we left.

S and L were getting ready to do some yard work so we decided to help.  I know it doesn't sound like all kinds of fun, but it was the perfect thing to have happen!  She was the assigned helper and was given little jobs along the way.  Nothing makes her more happy than to be the helper.  Well okay, that's not true.  Nothing makes her more happy than to be in charge.

But she did help scoop mulch, lay mulch and trim some bushes.  She was able to discover bugs and insects along the way.  When your friend is a teacher...there's always a lesson too!  Nea's union rep was able to secure her some breaks.   So her "kid breaks" included bubbles and side-walk chalk, and tossing a tennis ball. It doesn't sound like much, but none of that was in any sort of plan and she adapted very nicely!
When you work hard, you play hard!  So off we were for a boating adventure on the lake.

I don't think she had any idea what to expect.  But we rode in their Jeep, top down and Yeeeeehaww!- so that keeps ya focused on the here and now!

"Thrill seeker, no fear."  This is the phrase I tend to use when describing Nea and someone asks me, "Do you think she'll do XYZ?"

The boat- not scary at all.  "Faster!  Go Faster!".

In the water- yup!  " I like swimming!"

More zipping across the lake, "Yah baby!!  Go! Go! Go!"


We went out for pizza when we came back to land.    Of course the most important part is that she gained new friends.  She was knee-keep in this "no plan, full of socialization" day. It was wonderful to watch her interact with her new friends and  have important conversations.  She talked about school, her friends there and how one of them put an appleseed in her ear (what!?).


Not too shabby of a day considering that none of it was planned.   As we drove away she commented.....



"You're right Mama, that felt good in my heart."

The Eyes have it....

In August, right before the start of school, I took Nea in for her Kindergarten eye exam.  I wasn't sure how this was gonna go really....because, well...new situations are not on her list of "fun things I'd like to do today."  

As luck would have it, my research for optometrists in the area who might possibly deal with special needs kids actually worked!  There was one in town, who actually had an occupational therapist on staff!  Well now!

The staff and the physician were very personable, kid friendly and had lots of fun things to do an eye exam.  Actually they were so fun, Nea had no idea she was even getting an eye exam!  Now that's my kind of experience!

At the end of the exam, the doctor said...."Well it looks like she has alternating exotropia"

Huh?  (yah, me too)

Alternating exotropia is a form of eye misalignment.  Some people (us old medical people) call it strabismus.   This is where 1 or both eyes turn outward.  It's different than cross- eyed (that's esotropia) and it's different than lazy eye (more on that later).

So...welcome to your lesson on eyes.... :-)

Your eye has 6 muscles....4 that move it up and down and 2 that move it side to side.  All of these muscles coordinate in a very intricate dance for eye movment.  And they all have to work together well for our brains to be able to input visual information.  When one or more of them do not work correctly.....then the eye "floats out" or deviates outward.  The brains ability to see 3 dimensional objects relies on these muscles working together to move the eye.

The eye and it's 6 muscles

So....(stay with me)....

When both eyes are lined up correctly-at the same target then the visual part of your brain takes the image...fuses it together and forms a single image.  If one eye turns inward, outward, upward, downward, etc....then 2 different pictures are sent to the brain.

Now, back to that lazy-eye thing.

If the eyes keep floating outward....therefore 1 eye sees one thing, the other eye sees another....the brain finally gives up and says. ENOUGH!  The brain will stop telling the floating eye to turn back in, and will just stop communicating with it...leaving the eye permanently outward. It may float back and forth on it's own, but the brain has long ago cut off communication ties like a bad ex-husband. That "lazy-eye" thing.

Egads!

Now you would think a person would notice this.  Think of all the people that have been in Nea's life over the course of the last 5 years...the doctors she's seen, etc.  She certainly wasn't born with it but she developed it at some point. And as soon as the doctor described it, I knew exactly what she was talking about.

left eye float in

left eye float in

right eye float in

closing eye to make blurriness go away

Nea's had this "eye quirk" as long as I can remember.  She would bend her body when she was  a toddler in a way that tilted her head oddly as she looked at things.  I have pictures (lots of them) of that eye just seeming..." a bit off"  For a long time I believed that I just caught her eyes moving at a weird time.  But I caught that picture.....often.

She also covered her eye often.  Or, I would have pictures of her with one eye shut.  I have lots of these pictures too.  She was trying to compensate by covering the eye that was causing blurring.  And it wouldn't always be the same eye.

So yah, I knew on some level something wasn't right.  And I'll be darned if now that something doesn't have a name.

Only 2-4% of the population have exotropia (can't get these odds in Vegas!), 50% of them are autistic (thanks Autism) and of that 50%, over 35% are female (of course they are....).  In short, we weren't gonna outrun this thing.

Now understand, her visual acuity is 20/20.  She can see just perfectly.  But the muscles that support that acuity are too tight or too weak or both.    She's been working to compensate but eventually her brain is going to give up trying to get this corrected.

The optometrist wanted a re-eval in 6 months. We went back- it was worse.  Or I noticed it more.  I'm not sure which really.  Her eyes (alternating) float out most often for mid-vision.  So watching T.V. (far vision) it didn't happen often.....or coloring (close vision) I never noticed it.  It's her mid-vision....when she tries to look at camera for a picture....or follow a puck on the ice.

This is what happened to hockey.  It stopped being fun for her.  I heard a lot of "they won't let me play" and "I don't know where they put the puck" , etc.  Essentially, hockey became far too frustrating and she grew exhausted with it.  Then she spent most of February sick....and it faded.  (I do hope to get back to hockey if she wants after we fix these eyes.)

The optometrist sent us to the ophthalmologist.   Now this is a guy who realllly likes eyes!  I mean the man likes to talk about them a lot.  Which is great for me because I needed to learn a lot!

He noticed it immediately, then did his exam.   And he did his exam with prisms to double check her visual acuity.  Again her eye-sight is perfect.

We talked a very long time about options.  Patching does not work for this (the muscles are broken, can't fix that with a patch), eye training therapy (difficult at best with her-she would never cooperate), and surgery.

So, back we go to our Children's Hospital for surgery to fix those beautiful black eyes.

Can You Hear Me Now?

“Sudden loud noises hurt my ears - like a dentist’s drill hitting a nerve… High-pitched continuous noise, such as bathroom vent fans or hair dryers, are annoying.     

I have two choices: 1) turn my ears on and get deluged with sound or 2) shut my ears off.”     
            ~~~ Temple Grandin

"It's too loud!  It hurts my ears!"  ~~Nea




I have discussed Nea's sensory issues in the past.  When she was younger, it felt like she had issues with all of them.  She fell into the category of "sensory seeker".  This meant that her sensory perception was so off that she needed more and more sensory input to make sense of it.  She often threw herself to the floor, or banged her head on a table or take hair clips and place them all over her arms.  These were ways she was getting in sensory input for touch.  For sight, she would hold toys at eye level, peer really close and fixate on the mechanics of them.  When it came to taste, she would lick everything.  And I mean everything.  This is an appropriate response of a 6 month old, but certainly not of a 3 year old.  Smell and taste when hand in hand often.  She constantly sought input to make sense of it. .

Without a doubt, I had a sensory seeker and I had to make her world one that allowed for SAFE sensory seeking so that she could get the input she needed.  Her occupational therapist worked very hard during these early years to begin sensory integration.  It was tough.  Often she wanted no part of these activities because they were either too scary, too painful or too stressful.  The first time we sat her on a boarded swing, she screamed the entire time.  Her sensory system was so messed up that she could not understand where her body was in space (also called proprioception), and the activity terrified her.   Such a simple childhood activity and she was paralyzed with fear.

She did some hand flapping, but mostly spinning.  To this day, she spins.  When she starts I know she's tired or she's over stressed.  It's her way of getting input and it's a clue to me that somethings off balance that way.  Trust me, there is no book for this....it's trial and error!

Learning about proprioception

But sound is something she has never sought input.

There has been tons of research done in this area.  Why are kids with autism more sensitive to sound?  There are many different theories:

• temporal lobe differences (the area that helps with auditory processing)
• enhanced auditory nerves
• enhanced central nerves

Some people with autism (not all, some) hear sound in the following ways:

• magnified
• distorted
• magnified AND distorted
• cannot differentiate overlay (background noise)

I think I first noticed Nea's sound sensitivity when she was about 18 months.  The hand dryer in the bathroom at a restaurant sent her screaming and running to a corner.  She cowered there, shaking.  It took me awhile to console her and get her relaxed.  This was months before her diagnosis, so I never thought another thing about it.  However, I knew that those hand dryers were a nemesis for her, and I avoided them.  Within a few months, it was toilet flushing.  Overall, public bathrooms were just not a good thing for us.  And if it couldn't be avoided, then I had to control the situation as much as possible or I would have a terrified,  screaming kid on the floor!  

As we have maneuvered through day to day life, I've learned to just follow her lead.   

Some days, noises don't seem to be an issue at all.  She will skate through 100 people at the public rink with the music blaring.  Sometimes she whimpers to roll up the windows in the car because the "wind is too loud."  Or, she wants the music up so we can do some serious car dancing down the road.  Then she has times when she is in her room, lights off, door shut and the instructions "no noises please."   Often at family events, she  will hide herself away with her ipad and headphones.  The sound issues seems to be manifesting more and more, which means I need to pay more and more attention in situations.  But, ultimately,  I have to trust that she'll let me know when something is just too much. 

Grandma's house at Thanksgiving (3 years)

I've read many things written by Dr. Temple Grandin (an adult with autism), including that quote above.  I've never really understood what she meant by "turn my ears off" until this past year.  Somehow Nea has an ability to shut out everything so much that when I call to her, or try to give instructions, etc. it's an issue.  Her ears are "off".  I have to tell her, "Nea, turn your ears on"  or often we sign "listen" so she understands to turn them on and pay attention to what's happening.  

In music class this week, she had a bad time.  She screamed at the teacher several times that "IT'S TOO LOUD!!!" .  And screamed in such a way that she was becoming disruptive to the classroom.  The teacher moved her to another area (away from the speakers) but that did not work for her.  I wasn't there, but I get the impression it spiraled very quickly.   

We discussed it when she got home from school.  Where her behavior was out of control, the fact of the matter remains she had a real issue she was trying to communicate.  There was no way I was going to make her endure music class when she was having a bad sensory day.   The classroom teacher and the music teacher put their heads together to come up with a plan.  

Now Nea has noise cancellation headphones in music class.  How cool is that?  AND, she uses them when SHE believes that she needs them.  They are available to her on a table and she is allowed to put them on as she determines.  I'm so grateful for these 2 educators coming together to figure this out for her. 

"Children with autism and sensory processing disorders will tolerate loud sounds more easily if they initiate or have control of exposure to the sound.  It is essential that the child has control."   ~ Temple Grandin

These are her ears.  Wait until I tell you about her eyes.....

Here's How It Can Happen

I follow many Autism community blogs, websites, organizations and facebook pages.  Needless to say, my newsfeed started filling up when the story first broke about Jayliel Batista.  Jayliel is a 5 year old that wandered away from a family member's  home on New Year's Eve.  He wasn't wearing a coat, nor did he have on any shoes.

A search party was sent out for him, the police were notified, and search dogs were summoned.  The entire community looked for him.  They were told he may be frightened and would run if he should be called by name.  They searched in nooks and crannies.  Bushes, brush areas, people's yards...and as each minute passed.....the light on Jayliel's story grew dimmer and dimmer.

They searched for 36 hours.  And they did find him, about a 1/4 mile from the relative's home.   But in fact Jayliel's light had gone out...and he was found dead 8 feet at the edge of a canal.

A canal.

Every statistic out there speaks to the fact that what kills the majority of Autistic kids....is drowning. Fountains, ponds, lakes, rivers, ditches....and now, canals.

My frustration immediately was with the people searching for him.  Why didn't they check the canal first?  Did they not think he could have gotten that far?  A scared human, dog, cat, etc. can run pretty far, pretty quickly.  Why do we not have enough awareness that the water is the killer?  How have we missed this, again?

But I had to step back from that.  Was I in the search party?  No, I was not.  So I don't know how they set up the grid.  I have no clue how the search party was deployed.  Maybe they did search that area.  I just simply don't know.  And because I don't know....I have no right to sit in judgement of anyone.

But here's what has bugged me the most.  And quite frankly, always bugs me when one of these stories comes to light.   And for some perspective, it's about every week or 2 that my feed is filled with missing...soon to be found drowned kids.  It's getting to be so disheartening.  But I digress.

What's really got me honked is how much blame is being tossed on the parents...

"He was 5.  This is parents not paying attention. They were probably on their cell phone."

" I don't let my daughter out of my sight.  EVER!  How could these parents just not know?  They are negligent!"

" Did they not have a safety plan?  They were at someone else's house.  They should have had a plan.  I'm sorry, this is a poor parenting issue."

....and on and on the trolls go.

And these are parents of autistic kids.  These are people that live the same world that Jayliel's parents live in on a daily basis.  These people are supposed to be the "support system."

Pfffft

Just like I know nothing about that search party plan.  No one knows what happened at the relative's house that night.  Maybe Mom had JUST checked on him and she was living in that 5 minutes of comfort that all was well.  It's only a short time, because you know....you are going to have to check on him again in 5 minutes.   Maybe he was asleep, and she believed he still was.  My point is...my God, none of us were there.  And none of us has the right to stand in judgement.

I'm going to share my stories about Nea's wandering.  I'm not going to lie, I'm a bit nervous about sharing because it makes me feel like such a shitty parent.  And yes, I am aware that every parent has "that moment" that has happened to them before.  But there is a LOT of persecution in the Autism community regarding this issue.

One of those situations happened just today.  Today.  Today after a 5 year old boy was found dead.

Here's how it can happen.....

Nea was 15 months  and we were playing in the living room.  It was a beautiful spring day and our big door was open, with the screen door letting in the nice warm air.  I yelled to her Papa, "I'm running upstairs a sec to go to the bathroom."  He responded, "Okay!"

And so, as most things happen....I went to the bathroom, but then ended up folding some towels while I was there.  I heard a knock at the door and headed downstairs to see who it could be.  I heard Jon in the kitchen and starting to walk to the front door.

And there was a complete stranger standing on the porch holding our daughter.

What.  The.  HELL!?!?!

She smiled a big sweet smile and reached her arms out to me..."Mama! Hi!"

When I went upstairs...Papa assumed that I was taking Nea with me.  I assumed that he would start keeping an eye on her.  Neither one of us was very clear.

Thankfully that day a kind neighbor had seen us playing outside earlier in the day and knew where she lived.  He found her 1/2 down the block, on the other side of the street.

15 months....1/2 block, crossed the street.  I couldn't breathe for a few minutes.

When Nea was 3 I caught her heading out the side door.  I screamed so loud that she sat on the floor where she was and started to cry.  "I outside."

That prompted me to order The Big Red Safety Box.  A free kit that includes "Stop signs" to put on the doors, a family emergency pack, a form for first responders (so time is not wasted getting a ton of information about the child), etc.  We put more high locks on our doors after that day too.  It took me awhile to breathe after that.

Today we were late for church.  As we pulled into the parking lot, Nea squealed..."Look Mama!  Look at the water!!"
There's a pond right in front of our church.  It rises and falls like any body of water based on our precipitation.  Today, it was looking especially beautiful as it had a fresh, sparkly sheet of ice on it.

"Ohh!  Yes, that's pretty!"

We rushed into church.  Because we were so late, the children were filing out of church and headed to their education classrooms.  She LOVES her "church school" and filed right in line with the kiddos.  She practically ran to the back of the building!  I watched her take a left to head to her classroom.  I grabbed  a cup of coffee and slipped into a seat for the rest of the service.

After church was over, I headed to Nea's classroom.  The kids were still working and the adults were moving around the table helping them.  I didn't want to interrupt, so I peeked in the window.  I didn't see Nea, so I popped my head in....

"Is she in the bathroom?"

The teacher looked at me with shock on her face...."She's not in here...she's not been back here at all."

Oh my God!  Oh my God!!  She's had an entire 40 minutes!!  She's 40 minutes ahead of me.

THE POND!!!!!!!

I dropped my stuff and headed for the door.

Oh NO! NO! NO!

It's so cold.

The ice is not that thick.....

Why didn't I take her in the room?

Do I see her coat?  Was it still on her?  Did she hand it to me?

It's so cold!

The water...the beautiful water...

My God...please let this be a nightmare!!

10 seconds.  It took 10 seconds for those phrases to pass through my head.

The nursery is on the way out the door, and on a a gut, I popped my head in there.

There she was, playing in the corner.

I leaned against the wall to catch my breath and try to contain myself.   They told me she came in there fairly early at the start of the hour.  The girls in there know her, they know she gets overwhelmed with sounds/sights sometimes and they assumed that's what happened.  They were happy to let her hang out with them.  They assumed (and rightly so) that I sent her that direction.
Everyone was supportive and apologetic, but there was no need to be.  I should have handed her off myself....adult to adult.

Thankfully, I only had to learn a tough lesson today.  I didn't have to start searching for my 5 year old in a semi-frozen pond.

It can happen.  Over half of children with Autism are prone to wandering.  A lack of awareness, not a sense of danger...etc...the risk is just so high.

So what do we do as a community?  There's a blog I follow that is called Autism Daddy.  He's a great writer who has done a perfect job of outlining what needs to happen-there's no need for me reinvent the wheel.  I think he has excellent suggestions.  Please take a moment to read them.

If you are in the Autism community...please, let's not tear each other down and judge during these horrific instances.

If you are not in the Autism community...please, help us.  Helps us raise awareness in your community, educate yourself, understand the issue.

It can happen.....