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.....

Pushing.....

It's been a very interesting week for me.  It seems that for me to learn a lesson, I have to hear it over and over again from many different sources.  Eventually, I get the message....and the "click" in my head from the light turning on can be heard around the world.

As I've discussed before, Nea has been active in figure skating as well as hockey.  Being on the ice, is just some place she feels comfortable.  I can watch her visibly change once she gets out there.  It's been a true blessing to have found this niche for her and that she has opportunities in our community.  In my wildest dreams, I would have never picked this sport for her to be a part.  I always knew I needed to keep her active-but nothing really presented itself as a viable option.  What about dance? Or gymnastics? Or soccer?  I will admit that I was a bit paralyzed in trying to figure it out.  And I convinced myself I had lots of time to figure it all out.  Skating literally fell in our laps.  It's certainly been a game changer.

This week marked the end of her most recent 6 week session in both skating and hockey.  So evals were occurring this week.  The evals determine her skill level and if it's time to move to the next level.  She has gradually progressed in each sport over the last 9 months.  I've been proud of her accomplishments and excited for opportunities.

Much like the pageant at church, Nea just wasn't cooperative at her skating eval.  In fact she was so distracted, so chaotic, that the instructor couldn't really give her an honest eval.  However he did come to tell me, "she's a good skater...she just needs to focus."  I appreciated his insight, but it didn't give me lots of direction as to what to do with her the next session.

Now as luck would have (and perhaps moreso Divine Intervention) the person who runs the ice rink is a friend of mine from high school.  In my frustration of what to do with her next, I contacted him for some advice and some direction on what her next step would be.  His opening words...

"...are you going to push her?"

Well now there's a question that's actually  never been posed to me before.

I have always believed that I move Nea daily out of her comfort zone.  I make sure she looks at people when talking, I have her order her own food in a restaurant, I remind her to respond when someone greets her, I help her organize thoughts when trying to express feelings...on and on.  All day every day is spent trying to maneuver her through this world and making sure that she understand how it works.

So of course my response is, "yes, of course."

"Then stop telling me about her Autism.  If you are pushing her, it doesn't matter if she has Autism or not.  You are limiting her..."

Whoa, whoa, whoa whoa buddy!  Who the hell do you think you are!?

"She's going to have to understand how to move through the world without you helping her all the time.  Without you reminding her all the time.  Don't label her.  Push her."

Well now that all just hurt my big Mommy heart.  Wasn't I pushing her?  Didn't I try to make sure that she participated in her surroundings?

"I can't hide her Autism."

"I'm not saying that.  I'm saying that she's a kid who learns differently and has a brain that works different than other kids.   There's a way to teach her...it just has to be figured out."

And then it hit me.  All the advocacy I believed I was doing on her behalf...was perhaps hindering her in the process.  It was ME who kept the Autism label on her.  Why was I doing that?

"Give her a chance to build her confidence.  Her confidence will be what takes her places."

After an evening of LOTS of thought I think I might have come to some conclusions......

Nea's diagnosis at 2 1/2 years was such an overwhelming thing to me that I threw myself headlong into "being a parent of an autistic child".  There was much to learn, there were things that needed to be accomplished, there were appointments and schedules and school and .....well everything.

Nea age 4 @ Pre-School

But see, now I'm coming to a place in Nea's life where Nea is becoming her own person.  Even at 5 years old she wants to make as many decisions as she can.  And that means that every single day is one day closer of her navigating on her own.  But that  also means that she could easily stay in a comfort zone at this point.   It would be a lot simpler to close in and just coast.  And the skills she has now....she probably could do that without much effort.

But am I willing to push her?

Ironically, right across my news feed on Facebook came the announcement of Temple Grandin's new book, "The Loving Push"   It's a book about how parents and professionals should be pushing kids on the spectrum......  (see, I told you that the Universe hits me all at the same time with lessons...)

So, am I willing to get her outside that zone?  Can I let her go even farther than what I thought she could do in my own head?

There's the crux.....I was limiting her.  He was right.  I have no idea what she's capable of, and her Autism has nothing to do with any of that.

In the meantime, her hockey evaluation happened the next evening.  She was fantastic!  She was so fantastic, when she came off the ice she was flying high!

"Did you see me!?  Did you see!?  I did great! I listened and I did great!"

Well...look at that....confidence....

Her eval record said the same..."She did great!"  And the coach handed me the certificate saying...."she's ready for mighty mites.  It starts in January."

What!?

Okay, so if you're paying attention here's what's happening.....

We are moving Nea out of group skating classes to private lessons.  Group lessons are just not working anymore for her.  She's too distracted and not focused.  She is not self motivated when the instructor is working with another kiddo.  And she's becoming a bit of a disruption-that's not fair to the instructor or to the other students.

She also will be playing hockey.  One night of practice a week with a scrimmage game at the end of the week.  I still think the hockey thing is important for her.  And yes, it will be a true challenge.  She's going to have to learn to play a game, to be a member of a team, to listen to coaches and follow direction......

I talked to the person who will be her figure skating coach.  We talked about Nea's drive but lack of focus.  She already has ideas to keep her engaged, keep her motivated and how to reward her.

Oh my gosh, I love this woman!

One of Nea's biggest motivators is that she loves competition.  Even to work on her sight words for school I have to make it a game.  She ALWAYS wants to be the winner.  She ALWAYS wants to be first.  She ALWAYS wants to be in front.  That's her drive.  The kid has drive.  I don't think I recognized it as that until coach pointed it out.

Nea also has no fear.  She will try anything once.  And often times twice if she thinks it can be done better.  The night of her skating eval she followed around a coach who had a skater that was in the harness practicing jumps.  When she came off the ice, she said, " I want to fly!  When is it my turn!?" She's brave.  The kid is brave.  ....I didn't get that before-but she did.

Nea becomes a different person when she's on the ice-I've said it 1000 times.  She simply loves being there.  She has passion.  The kid has passion.... that's not seen often at her age.

So what we have is a kid who is brave, who has drive and who has passion and loves competition.

That's a pretty amazing combination.

I can't wait to see her fly!

The Christmas Tree and The Snowman

So we tried something new this year.  Nea became involved in 2 different "shows" that ironically had the performance on the same day.  I thought long and hard about if I should let her do it or not.  I had no way of knowing how she would handle each situation, but felt like it would be a good thing for her to have the experiences.  I wasn't thrilled they were on the same day, but after many conversations with friends and family I decided to just press forward.

One performance was at our church, where her and her Pre-K/K friends would be singing  a couple songs.  They practiced at church every Sunday and had a special rehearsal on Saturday.   The special rehearsal was helpful to me to try and find all the pieces that might be an issue for her.  The microphone was the first one.  She realllly wants to hold it and "be in charge".  This is a trait that I seem to have handed down to her.  We can't help it.  Hearing our voices across a speaker gives us chills.  However, she wasn't singing a solo-she was part of a choir.  So ALL the children needed to be heard singing.  She moved and stepped to be in front of the mic often.  Note to self:  have to talk about the mic rules.

The other performance was with our local skating club.  Her and her "new to skate" friends were doing a little performance on the ice where they were dressed up as snowmen.  They practiced the performance at least 3-4 weeks ahead of time.  There are 2 rinks at our skating center.  We usually practice in one, but the performance would be in the other.  Note to self:  remind her that the skate show is in a different rink.  Other note to self:  get on-line and show her a picture of the costume.

Both "big rehearsals" were the day before.  She had no problem at either one and I was so dang proud of her for taking on this challenge and meeting it head on.  I patted myself on the back for tracking down the potential obstacles to success and we all got a good night's rest.

Performance day arrived and we were ready!  Grandma was coming to spend the day with us and I was very grateful!  It's always nice to have Mom around when you are about to take on crazy for the day.

The church performance was first on the schedule for the day.  We arrived ahead of time (again, I patted myself on the back) and we headed to the back to where the children were getting ready.

Wrong.

That's not what "happens" when we go to church.  That's waaaaay off routine.  Damn, didn't think about that.  Okay, we'll deal.    So I sit and have a long conversation with how the day is a special day and that she is going to do the singing with her friends.  It was crazy in the set-up area.  Lots of buzz, lots of activity, lots of people.  So I stayed with her and we sat in a corner.  I needed to help her adjust to the change of activity....even though she had been in the room 100 times.  Different people were in it...."Mama, who are all these people?"  Damn.  Didn't think of that one.

It was time to put on her "Christmas Tree" costume.  Crap.  Didn't know that.  "But I'm supposed to be a snowman"  Ohh damn it!  Now there is performance mix-up.  Why oh why did I do this!??!

We talked for a long while about the Christmas Tree costume and I was finally able to get her to put it on.  She went to the table with her friends and started coloring.  Things were starting to feel "normal" to her and I could visibly see the difference. And just as soon as she started to settle in....it was "time to line up!"

Crap, I didn't transition her.  I should have given her a 2 minute warning......damn, damn.

As the children were lining up, she decided that she "can't do it."  "It's too many"  I'm sure she was talking about the amount of people around, so I took her to the back corner and made her sit down.  She needed to pull herself together, and I was getting frustrated.  "Mama, why are you mad at me?"

Shit.

Okay, I had to get my head on straight.  This was supposed to be fun, and I was turning it into a nightmare for her.  Haven't I always said that there are somethings she can do and some things she can't do and some things she can do with help?  I certainly wasn't helping here.  Change of plans....

"Okay, sweetie let's just go in the church and you can sit with me and Grandma and watch.  If you want to sing you can.  If not, that's okay too."  She agreed that was okay.

The performance started and of course the kids were cute as all heck.  It was getting close to the time for her to go on stage. "Do you want to go sing with your friends?"

"No.  I'm scared."

"Why?"

"Because, I don't remember the singing.  I will forget."

"Oh, honey, that's okay.  Miss K will help you."

"No Mama"

....and so she didn't.

Next opportunity for her to sing with her friends came up and I asked her again if she wanted to go up.

"No.  I mean, I want to.  But I can't.  I just can't Mama"

And she turned her head into me to cover one ear, pulling my hand to cover the other one.  We rocked and I cried.

I cried alot.

I cried the whole rest of the performance.

I rested my head on my Mom's shoulder and cried.  There we were, the three of us.  Each girl resting on her Mom's shoulder trying to find some peace.  And Grandma holding us all together.

I felt like I failed her by not moving more obstacles for her.  By not prepping her better.

And then I cried realizing that I am never going to be able to move them all.  Ever.

Plus I felt so bad for her.  She wanted to....she just couldn't do it.  She just couldn't muster the courage to do it.

Thankfully the morning was not a total disaster.  Santa came for a visit and gave all the children presents.  Her heart was soaring again.  (Thanks Santa!...you will never know how you healed a broken heart!)

Deep breath.  On to performance #2 for the day.

I walked into the rink quite exasperated.  I had already cried a bucket of tears and I had no idea what was about to happen over the next 90 minutes.  I have a friend who works at the rink who saw me walk in.  I'm sure I looked like hell...."What's wrong??"

It's been a day.

Nea is very used to the chaos of the rink.  She sees it every time she is there for skating practice or for hockey practice.  There are usually scads of people everywhere running around.  Nothing new there.

We headed to the locker room to change.....  I was dreading that snowman outfit because she'd never seen it, and she had never skated with it on.  She had already warned me the day before, "There better be a nose with the costume."  Oh sweet heavens, the nose was there too!!

In the costume in a snap, helped a friend into her costume too and then off to sit with her friends and get ready to go on the ice.

And she did.

Without 1 tear.  Without 1 stressor.  She remembered the routine, she never faltered and she even did an amazing spin.  Did I get it on video?  Nope.  I think I was suffering from PTSD by then and just didn't have any brain cells to think of things like videos.....

She sat with us after her performance to watch the rest of the show and seemed to enjoy every part of it.  She couldn't wait to get back on the ice for open skate.

150 other people were on the ice for the open community skate.  But she didn't care.

She swerved around them, through them and beside them.  She's comfortable there and she doesn't care who's around.


So what have a learned?  I'm not sure.   I think I would do it all again.  I think.

I have always believed in giving her opportunities.  And what I guess I need to remember is that she will decide what is and is not possible.  On her terms.  With her own courage and strength.

Oh, and Mom.  Always have your Mom with you.   :-)

Being Social - ish

A year.  Why has it been practically a year since I've posted?

I'm not entirely sure.  I think perhaps there was a "busy" factor. I think there was a "not one more thing to do" factor.  I think there was a "I over-share" factor.

I put myself on some sort of "blogging blackout."  I imposed some sort of hiatus on myself for reasons I'm not entirely sure.  Or, as a writer, it seemly may boil down to "lack of inspiration" factor.

It's not that things haven't been happening in our world.  It's not that we haven't had PLENTY of new challenges to face.  It's not that there hasn't been new things learned along the way.  Again, I have no answers about the silence, it was just there.  I've learned to respect the silence, acknowledge it for what it is and keep pressing forward.

So that's what I'm doing.

We are knee deep into the world of social learning these days.  Nea is now a kindergartner and that means that we traveled a whole new world.  Staying in school all day, being in a classroom of new friends, having a new teacher, going to a new school......required a couple weeks of transition, as you can imagine.  Overall, she seems to have adjusted well (although she hates school at 7:15am and loves it at 3:30p.m) considering all these new things thrown at her.

The other thing we have discovered this year is skating.  We joined friends one weekend last February for an afternoon of skating fun.  Much to my surprise she loved every bit of it and so I enrolled her in skating lessons.  Within 2 months of figure skating lessons, she had an interest in hockey.  And so- she spends 2-3 days a week on the ice honing on skills that surprise me every time!
Her skating skills are good enough, that she keeps moving up in the program.   She now is skating with the big girls, and not the little kids.  It's been a good challenge for her and I can see even more growth as she progresses!  Skating is an interesting sport for her.  The figure skating piece is solo--learning your own skill, challenging yourself, trying new things and getting better.  Hockey incorporates the team component and working together with others.

And there's lots of social learning in both.

A couple weeks ago when this session first started, new girls to the class were a little unsteady on their feet.  Of course there were a few falls along the way.  I noticed that Nea would stand off to the side and point at the girl flat out on the ice.  When I got closer, I heard her laughing and saying loudly HA ! HA ! HA!

Ooops....um, I'm not sure there's a figure skating social story....!!

I took her aside and explained that when someone falls on the ice-it's bad play to laugh at them.  She was genuinely confused as I tried to explain this little social rule of compassion.

"Nea, when someone falls, you say....'oh no! are you okay?' "  I think she took it in, but it's so dang hard to tell!

Fast forward to this weeks skating lesson.  One of the girls fell on the ice and Nea began circling around her.

"Are you okay?"

"Hey, are you okay?"

"oh no, are you okay?"

"Girl, are you okay?"

I think she circled that poor girl 10 times repeating over and over and over..."are you okay?"

We have a little more to learn I think.

And speaking of social stories....I have to give a shout out to Inside Out (yes the kids movie) for helping me explain a social situation to her.

Nea was having a rough day at school and the teacher gave her an instruction to do something.  Nea is really big into justice...."it's not fair" "I like it more"  "that's not how you do it..." , etc.  So she was trying to -yet again-explain something to that effect to the teacher.  The teacher responded, "Nea...it's okay, let it go."

Nea turned to her and replied, "No Ms. H, YOU let it go."

*faint*

Okay, that girl doesn't talk like that to me and she certainly is NOT going to talk that way to another adult.  The teacher informed me what had happened so that I was aware.  And I assured her we would be having a discussion at home.

This is how that discussion went down......

"So I hear that you said some words to Ms. H today that were not nice"
"But Mama, "E" was not listening, and I wanted the owl!   It's my favorite" (I have no idea what any of that referred to..."
"Okay, well, that part is not what I want to talk about.  I want to talk about the choice of words that you used with Ms. H.  We do not talk to people that way.  Not your teacher, not your Mama or your Papa or your friends, or anyone."
"But "E" made me mad!  I had Anger in my head!"  (okay, so we use Inside Out references alot when trying to talk about emotions. I am grateful for that show every day!)
"Oh!  I see, so you really had Anger in your head and you gave Anger to Ms. H"
(I can see wheels turning in her head.....)
"Well, yah...but....I had Anger in my head at E, not at Ms. H."
"But you chose the wrong words.  And the wrong attitude."
"yah" (head hanging)
"So, what can you do next time you have that much Anger in  your head before you talk to anyone?"
"I don't know."
"Well sometimes, people take deep breaths to blow the Anger away...."
".....and then I can let Joy in!"   (Oh for the love of Pete it worked!)
"Yes!  so you can Let Joy in!  Anger needs to move out of the way in your head so that you can talk with Joy."
"I'm sorry Mama"
"I'm not the one you have to say that to, right?"
"I will tell Ms. H tomorrow."

And she did.  Very first thing.

"I"m sorry I was talking with Anger."

These social things are tough to navigate for any kiddo.  I continue to learn how to break it down for her piece by piece to help her learn.  I don't know if she'll understand the social component....but I think she'll learn what the "rules" are along the way.

That's the best we can have right now.