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.....