Oh, my heart!

I had an opportunity to spend time in Nea's classroom last week and oooowee! what a time that was!

First, you have to know about a note the teacher sent me regarding Nea at school.  It seems she was "caught" kissing on a boy in the corner during OT time.  So instead of swinging, riding on scooters and jumping, my girl was smoochin it up in the corner!  The teacher gently reminded her that we don't give kisses in school and that kisses were saved for Mama and Poppa at home.  Now you have to know, this made me laugh so hard when I heard it!  I mean, I know germ spreading in the 3-5 year old crowd is pretty rampant and we should do everything we can to keep that down to a dull roar.  But that whole kissing and loving on you thing is a nice social skill.  Okay, okay, it's not appropriate...but you see what I mean here right?

When I arrived at school, Nea's class was in the gym.  The nice thing about this area is that it's total "run around and be crazy as you want in a safe way" sort of environment.  There are 2 classes in the gym (I think the other class is a neurotypical class, which I love that they are together) and I would call it "controlled chaos."

When I walked in, I stood to the side to find Nea.  She was on the alligator teeter-totter with 2 other kiddos.  Oh how my heart just wanted to sing!  Group play with peers is such a beautiful thing to watch.  She spied me after about 3 minutes and waved.  "Mamma!  Over here!"  She was super excited and came running over.    Mom in school is a very magical thing indeed!  She ran over to give me a hug and then ran off to play more.

I watched all the kids in the gym. Some in their own worlds playing alone, some playing cooperatively with others, some trying to negotiate a toy.  If any kid was alone for longer than a couple minutes one of the teachers or one of the aides were right beside them to engage them in play.  Play is a child's work, and this is no time to be sittin!  Redirecting kiddos back to play and back to peer interaction seemed important.  What I loved the most is that the teachers weren't standing off to the side talking to each other.  They were playing.  They played ball, they laid down on the floor and made "angels" on the carpet, they helped build with blocks, they shot a few hoops.  The teachers were engaged as much as the kids and it was a beautiful thing to watch unfold.

Nea came to me holding a kiddo by the collar and dragging him my way.  This poor boy looked confused as hell as Nea man-handled him and pulling him my direction.  She kept saying "Come on! Come on!"

Me:  Whoa, sis!  Whoa.  We don't pull on people's clothes.
Nea:  Look Eli! , it's Mama!  (Eli is not his real name, just for the record. Using a pseudonym)

Eli is clearly confused.
Nea:  Mama, it's Eli!
Me:  Nea, it's not fair to just drag Eli around, you have to ask him.  He has choices.
Nea: Okay, Mama
Me:  Eli, it's nice to meet you.
Eli:  yah

....and off they ran!  A formal introduction!?  Wow!  Granted, Eli was not a willing participant, but still!

The bell rang.  In an act I would call nothing short of a miracle, 20+ preschoolers lined up against the wall.  I need one of these bells at home!  Every student stopped where they were, picked up the stuff they were playing with at the time and ran to the wall.  I watched Nea run to the wall and shove her way in between Eli and another kid.  Okay, clearly she liked this boy but we were going to have to work on manners!

All the kids stood with their backs against the wall with their hands flat against it.  It reminded me of the cutest damn pre-school perp line-up I've ever seen.  I'm sure that it's meant to keep little preschoolers from putting their hands all over each other and teaching about personal space.  And there were Eli and Nea, secretly holding pinkie fingers with flat hands against the wall.

Oh, my heart!

Gym time over, we headed to the classroom.  First a stop at the bathroom for a potty break and handwashing!  Again, nothing short of watching The Red Sea open up.  Seriously, the amount of weaving and organization required for teachers and aides to get this accomplished is just something to behold.  I waited with the girls in the bathroom.  But of course, waiting is not just waiting at school.  There's always something to learn!  So as we waited, the aide went through everyone's name.  "Nea! Nea starts with what sound? That's right! nnnnnnn.  NNNNN for Nea!"  And every kid got their name in the spotlight!

When we were back in the classroom, it was storytime.  Mrs. K went to the board and pointed at the pictures to remind them where they were in the day.  A nice visual schedule for little learners who need that cue.  Everyone begin to take seats in the horse-shoe shape of chairs.

Eli:  Nea! Nea! over here! Sit here!

And sure enough, she took the chair by Eli, and cozied up right next to him. She slipped her arm around him, touched his face gently and they turned their attention to the story.

Oh, my heart!

Have you ever heard a preschool teacher read a story?  Seriously.  Disney actors have nothing on these guys.  No wonder it's difficult for me to get Nea to sit and listen to a book with me.  (although she is better!).  I must really pull out my Thespian skills!  These kiddos (all special needs, mind you) were fixed.   Most sat with only a couple reminders needed and participated in her counting story about turkeys.  Apparently I'll need a board too when I read a story!  Props go a long way with this crowd!

Next on our visual schedule was a special activity with Mrs. M. (Notice I said "our" as by this time I was totally hooked in with this class!).  Mrs M. is the speech therapist and comes to do group work in the classroom.  Remember, part of therapy is speech in social situations and this is the perfect opportunity.  The kiddos stayed in their chairs as Mrs. M took center stage.

And she had bags!  She had some contraption in her hand!  What was it!?

With the skill of a bard from the Queens kingdom, she told them all about the popcorn popper she brought to show them.  I'm sure I haven't seen one of these since 1979, but those kids believed it to be some amazing device with magical powers.  And they had no idea what it was!   There was a rustle of excitement among the kids.

A what?
Popcorn?
Does it get hot?
Did she say popcorn?

The first thing she showed them was the stick of butter.

"Friends, we need this to make the popcorn.  What is it? Do you know?"

Every kid said with conviction, "Cheese!"

hahaaha!  I suppose stick butter is not something most see every day, and in fact it does resemble a cheese stick.  They seemed shocked that indeed it was butter.

The fan of the popcorn machine could be an issue for sensory kids in the room.  She took that well into consideration and warned them before it happened as well as turn it on for a second and then turned it immediately off.  A couple were a little startled, but really were okay after a minute or so.  She let each kid have a job in helping to make the popcorn.  A couple kids were able to help by putting in the butter and putting in the kernels.

Then it was time to wait.  She signed the word "wait" , which I'm sure is every preschooler's frustration when they see it.   I heard a lot of deflated sighs as they all sat back into their chairs.  Mrs. M. talked about all things popcorn while they waited.  I'm sure some of them were like, "Really, lady?"   And then it happened.

Pop!

Pop! Pop! Pop!

The gasps and the squeals in the room were hysterical.  Some were so excited they could barely contain themselves.  Everyone knew to stay in their chair, but some had to hang on to their seats (literally) to stay there!  Oh my goodness everyone was a wreck trying to contain their excitement!

Pop! Pop! Pop!

Eli was visibly shaking he was so excited.  Nea touched his face gently and told him "it's okay."

Oh, my heart!

I said to Mrs. K, the teacher.  "Let me guess, this is the boy she was kissing in the corner?"  She smiled and nodded.  Clearly these two were tight.

Finally the popcorn was done!  Each kid got an opportunity to stir the popcorn in the bowl.  Now we all know popcorn doesn't need stirred, but participation is crucial and these kids now felt like they had a true hand in making that magical corn!  Nea kept shouting...."Mrs M! Mrs M!  Mrs M!"  "Yes, Nea, what is it?"

"You made octcorn!  Good job, buddy!"  ...and a round of applause given by Nea.

Friendsgiving was starting....and over to the snack table we went.  Every kid brought a snack and put that snack in the big bowl with the popcorn.  It was a ChexMix extraordinaire....preschool style!  The kids also had their snack lunches at this time.  Lunch on this day was a turkey/cheese sandwich on whole wheat, fruit cup, cauliflower and milk.  Nea ate that sandwich like she did it every day.  Can I get her to eat a sandwich at home?  Nope.  However, things are very different at school when your peers are all eating the sandwich.  Okay, I'm never going to fret if you don't eat well before school again child!

Much to my surprise, Nea stood up with her carton of milk walked around the table and went to the sink.  She scooted over the footstool, poured the remainder of her milk into the sink, moved the step stool back to it's original location, walk over to the trashcan and throw it away.

What did I just witness?  My kid picking up after herself?  Alien abduction!! I've seen it now!

I had a magical day at school and look forward to my next visit!  I like to watch my own kid of course, but it's also great to see kids just being kids.  As a pediatric nurse, I see kids freaked out, stressed out, scared, in pain, angry, etc.  It's so good to see them just being themselves in their own environment.

Oh, my heart!  It's just so full!

Flowers in November

It's not even 11:00 am, I've only had 1 cup of chai tea, and my day has been one of the shittiest that I can remember in a long while.  (Trigger warning:  I have no idea what I'm about to spew from my mouth as I'm writing while everything is still fresh....but very raw in my head).

When we arrived to the rehab department for Nea's OT appointment, the waiting room was pretty full.  Not too surprising since all the 9:00 a.m. appointments were gathered.  Nea ran to the fish tank and began her usual ritual of "Look Mama! Fish!  Look, a fish!" as I signed her in and gave her my usual reply "Yes, I see!".  Another child was viewing the fish tank and seemed to pick up on Nea's excited energy.  The girl was jumping up and down about 4 breaths from Nea's face and yelling "fish! fish!"  I motioned to Nea to come to me so I could take off her hat and jacket.  The girl, in a way to try to be helpful, snatched it off her head and brought it over to me gleefully.  My girl was crumbling by the second and I couldn't make it stop.  Nea ended up cornering herself against the fish tank and the wall yelling back like a dinosaur.

Bad sign.

What that little girl didn't know is that is Nea falling back to the only defense she has when she feels threatened.   Yelling loudly with a growl undertone is the message, "I am very uncomfortable and I don't know how to stop you!"   She seems to be in "flight or fight" and was ready to bolt.  Thankfully her OT came to get her.  As I unzipped Nea's jacket and helped her out of it, I whispered to the therapist, "The last 3 minutes have been really bad ones."  She scooped Nea up and off they went to the rehab gym.

I spent a lovely hour in the waiting room reading on my Kindle (my newest, fun toy) and sipping my green tea chai.  24oz, no less.  Apparently I had an unconscious tug to get in a relaxed state of mind because I was about to face an epic meltdown.  But for that blissful, unaware hour I was transported to the story taking place in Nova Scotia.

When the OT brought Nea back to the waiting room, she seemed to be in a relatively good mood.  She greeted me with a hug and went over to play with the books as the therapists and I chatted.  Nea had done well in her session.  She listened to direction, she focused on her activity and she was verbal for the majority of the session.  When the therapist left, I told Nea it was time to go and she simply responded, "No Mama, I can't."  That phrase is usually an indicator that she doesn't want to do something, and it's precognition thought of  "I can't handle it right now."

So I waited. I let her explore a couple other books and read for 10 more minutes.  Finally she said, "Mama, you have paci's in purse?"  Doesn't every Mom?   I told her yes, and that she needed to come get them AND it was time to go.  I patted myself on the back for giving her enough time, some space to gather her strength and move her on out the door.

When the door opened she flew out and around the corner.  Again, a ritual of hers.  After the run down the gallery hall she stops at the bead-table to play for 5 minutes before we actually go out the door.

Ooops, the bead table wasn't there.

The hospital is hosting a Radiothon to raise money for children's services and the event takes place in the lobby/gallery.  (Now you must know, it didn't hit me until the drive home what this really, actually meant.)

Nea was bouncing and bounding all over the lobby.  She looked like the ball in a pinball machine.  I kept trying to coax her to me with oh so helpful phrases like, "Come on, time to go" and "Poppa is waiting" and "You have school today."  I could tell by the look on her face that she wasn't really processing and essentially I had lost any hope of connecting with her.  When she would come near me I would grab on to her and she wriggled, screamed and starting hitting, "Let me go! Let me go! Let me go!"  So I waited.  Again.  I let her ping around the lobby for awhile until it seemed like she was together enough that I could try again.

No way did she want her jacket and hat, but she agreed to hold my hand.  We were almost to the door when it hit her full on.  I could almost feel it as she collapsed to the ground.  Screaming.  Yelling.  Head banging.  More yelling.  The dinosaur yell.  The screaming.  She kept yelling "No! I can't!  No! No!"   It went on and on and on and on.   Most people ignored me, some rolled their eyes at her.  I decided that personal space be damned, I was going to have to save her.

I scooped her up and threw her over my shoulder in a fireman carry.  And with that, I opened the Wrath of Hell.

She had been violated.  She no longer had choice.  She had been picked up, man-handled and she was spitting venom.  Kicking, screaming, yelling and crying.  It was the longest 2 minute walk to the benches of my life.

I hoped the fresh air might help.  Lord knows she was using her lungs well enough, and my hope was that they would fill with new, clean air to help get her grounded.  I carried her to a bench that's tucked away in the corner.  She wanted nothing to do with me.  I held her tightly, squeezed and sang her favorite calming lullaby.   But she pushed me away and laid down on the bench.  For a solid 5 minutes she laid there as her brain tried to find calm and her body shuddered constantly.

And I sat there and cried for her.  She had no tears left.  She had no more anger or frustration and certainly not words that could be given.   We sat in silence and just tried to .....be.

She finally sat up, allowed me to put on her jacket and hat and we walked towards the parking ramp.  There are about 15 metal poles between our spot on the bench and the road that goes to the ramp.  She had to "clink" every single one of them as we walked by.  If she were home, I imagined she would have been lining up cars or trains to try and get order back in her life.

It took us a long while to get to the road.  She stopped along the way and threw herself to the ground on her knees.  Once we reached the sidewalk, just on the other side of the road she sat on the railing overlooking the drive below.  Okay, girl-child, we really need to start moving....we were 40 minutes trying to get out the door and to the car!  I gave her one last, "It's time to go, sweetie" and walked towards her.  She did the one thing I've been dreading her entire life.....

She darted in the middle of the road right in front of a car.

My heart skipped a beat.  No, forget that.  I died right there.

Thankfully the car stopped and I grabbed her to the sidewalk.

My patience was whisper thin at this point.  I had remained Zen like for a pretty long time which I would like to give myself 300 bonus points for maintaining.  But that last event, was the end.

I had her by the wrist and we headed for the car.  Again with the screaming, and the kicking and the crying and the all out meltdown.  I literally dragged her on her butt the entire way to the car.  I kept saying, "I know this is hard.  I know you're having a bad day.  I'm trying to help you. I really am."  It wasn't for her benefit, but rather for the crowd that was starting to assemble.   And, I was trying to talk myself into as well.

We got to the car, I buckled her in and felt so much relief.  FINALLY she was strapped in a car seat, safe and under control.  I moved to the driver's seat, got in, laid my head on the steering wheel and sobbed.

I called Poppa as soon as we were on the road to tell him, "You are about to get 2 girls who are a tangled, fragile mess." He asked what happened and I told him the story.  "Come home, and we'll get it all together.  Don't worry."

Did you ever see the movie Ice Castles?  Remember that scene at the end?  For those that don't know it's a movie about a figure skater who goes blind.  Robbie Benson is her boyfriend and he gets her back to figure skating and they are able to "hide" the fact that she couldn't see.  They practice and practice and she measures out each pace so she doesn't hit the walls as she does some pretty extensive tricks.  She completes her competition skate flawlessly and the crowd cheers.  In appreciation of her beautiful skating, they throw red roses onto the ice.  Of course she doesn't see them and trips over each and every one...falling and flailing all over the place.    Robbie comes out to the ice and says to her, "We forgot about the flowers."

And that's what I realized on the drive home talking to Poppa.  That lobby looked one way when we walked in....and it looked entirely different when we walked out.  The ritual of playing at the bead table was not there and the place was packed with tables, chairs, computers, phones, people.   It didn't look remotely the same and I would imagine was the start of her unraveling.  I would have done better to go out an entirely different way then a path that she expected to look a specific way.

These are the days when Autism sucks.  These are the days that I can hardly breathe with the overwhelming knowledge that my child suffers so much on the inside and there is absolutely nothing I can do.  It's unnerving and it makes me so damn mad.

I got through today.  I got us home safely.  As we speak, Nea is in a dark, quiet room watching her favorite movie wrapped in her favorite owl blanket.  She's bounced back fairly well.  Me, I need a hot shower and more tea.

I vow to try and never forget the flowers.

Hippotherapy and Horsemanship

Nea's evaluation with the equestrian center was this afternoon.  Because of her age, they wanted to meet with her first to decide if she could even be a part of the program.  Grandma was in town today, so she rode out there with us to talk to the trainer and see what opportunities were available.

The place is about a 25 minute drive from our home. Considering that I had no idea they were there at all, I was very much thrilled to know they were so close!  It's a nice ranch with a big building and then the huge barn with the fenced in area for the horses.  We said hello to the owner/instructor and she invited us into the area where the horses have free reign.  I introduced Nea to her as "teacher" and signed it for her as well.  Nea responds well to understanding words like teacher because there's a certain authority given as well as trust.  Nea immediately said to her, "Hi Teacher!"

It's been a very long time since I've been around horses.  And I've certainly never been around 7 at a time!  I was a little overwhelmed at first.  I was trying to keep one eye on Nea (who was very excited) and an eye out for Grandma as well as tap into my memory of horse etiquette when meeting a new one.  The one thing I do remember clearly is not to stand behind one.  That's about all I could tap out of the relics of my brain.  To my credit though....that was a 6th grade memory I secured!

The horses were all standing around a big feeding bin nibbling away.  2 pre-teen girls were standing among them, talking to them and grooming them.

Nea had seen the horses right away.  She was very much intrigued by them and shouting "Horses! Horses!  Let's see the horses!"  The instructor was happy to hear her words, happy to hear Nea's hello and happy to see her excitement.  I, on the other hand was a bit concerned about her over exuberance and fearful she would spook them.  I had visions of 7 horses clambering around to escape a manic, hyperactive 3 year old.

I can tell you without a doubt, these are no ordinary horses.  2 of them looked over at her as she approached.  A pony, and a full-sized-holy-crap-you-are-huge brown one.  The instructor picked Nea up and walked her towards the big guy.  She introduced him by name to Nea as they approached.  "This is Argo."  Nea reached out, smiled and squealed...."Hi Argo!"  She gently touched his nose and Argo serenely closed his eyes as she patted him.

Argo and Nea's first meeting

Argo says hello!

 Nea wanted the next one and hopped down.  "This isTaffy.  She's in a cranky mood, so we aren't going to pay her much attention today."  Taffy turned her head towards Nea for half a second which thrilled her. "Oh Hi Taffy!"   One of the ponies made his way over to see us.  He just sort of sauntered up and you could tell he wanted an introduction.  Nea walked right up beside him and touched his shoulder.  "This is Mickel" Nea patted him gently, "Mickel, hi"  The instructor gave her a handful of hay (or straw....can't remember which is feed and which is not) to Nea.  She was thrilled to have Mickel gently nibble from her hands.

Feeding the ranch's most recent rescue

Mickel and Nea start a conversation

  And then she was off and running.  Her energy level was off the charts.  I think that the excitement of meeting the horses was just too much and she had to burn it off.

I get a little tense when Nea takes off like that and runs amuck.  I know she can't help it many times, but I also don't want her doing something that could be a safety issue or mess with something that is not hers to be be messing with.  It must have shown on my face because one of the instructors said, "Don't worry, she's fine"

Eventually we moved out of the horse area (that's good, because she was running everywhere! and I think those girls were amazed at her stamina of energy).  We stood and talked to the instructors for awhile while Nea played and climbed on a dirt pile.

Finally the instructor said, "I think I can help you."

I don't think I can begin to tell you the warmth and friendliness that came from this woman.  She talked about instilling calmness and focus during riding.  They had no concerns that Nea wouldn't get on a horse.  They were both convinced that she was inquisitive enough that she would do it without trouble.  She explained that after about 10 weeks, we would be seeing that calmness and centering spill over into every day life.  She also talked about that the therapy isn't just for the kiddos, it's for the grown-ups too.  Her goal is to make sure Nea is in a place to accept all the love she can from us, learn from everyone who is teaching her and build the self confidence to make her way in the world.

Oh, sign me up for that!  Please!

At one point during our conversation, Mickel and Domino came over to investigate.  Nea was still playing on the dirt pile by the fence.  She went over to greet them and say hello....like she had been doing it every day of her life.

Domino and Mickel come to say hi 

So maybe this is the thing that is the "click" for her.  Maybe this is the therapy that pulls everything together and gives her a better understanding of the world as well as some inner calm and peace.  That instructor seemed to think so.  She seemed very excited to have Nea with them and talked about many things for the future including instilling self-confidence, self-esteem, empathy and 100 other things I forgot.

I forgot because I was just so happy to watch my girl dance with glee on a horse ranch.

Domino (I really love kinda love him!)

Mercury be gone!

30 days since my last blog post?  Jeepers, Mercury was certainly in retrograde!  Very poor communication on my part.

We have had a busy month that included an illness, Halloween festivities,  a very first train ride and the first quarter school report.

Illness and Autism are always full of fun.  Fighting to get fever-reducers in her when she felt so awful was much like trying to herd cats, only the cats were 40 lbs each and fought back.  Her croupy cough made me cringe every time I heard it.  I took her to the doctor twice, which is always full of adventure.  She actually did well with the exams  and no "owies" were given so it didn't seem all bad.  My homeopathic remedy kit saved the day as those pellets are so tiny she never fought me on it.  They worked VERY well and I was thrilled to have them.

Examination at the doctor

Chairs lined up neatly in the waiting room

Witch girl

Halloween included 3 different costumes.  The one I planned only worked for 1 event, she didn't want it on at all after that.  I have no clue why.  The next event I made a make-shift pirate costume from playset items and putting her in jeans and an oversized shirt.  The night of Halloween brought rain and cold.   So, off to find a costume that had a little more water-proofness to it.  Great deals on Halloween for costumes, just FYI!

SpiderGirl

Pirate Girl

Her first train ride was full of adventure.  Watching her face as the train pulled into the station and her sudden realization that she was getting ON it, was priceless!  We enjoyed a day with Grandma and Grandpa and time at the zoo.   The train ride itself went off without a hitch.  Grandma had plenty of snacks and goodies in her bag to keep a 3 year old happy and busy.

Wearing the Conductor's hat!

My first parent-teacher conference was a very positive one.  It was nice to sit down one on one with the teacher and talk about my girl.  She's making good progress, only had to do time-out a couple times and continues to adjust to the school environment.  I so appreciate all the detail and love that these folks put into my kids education.  It's their passion and you can see it.  Nea is the class clown, which is no surprise considering the home she lives in.  We are all a little nutty here.

She's still getting private OT services with the therapist that's been with her since her diagnosis.  She shared with me concerns about Nea's speech patterns and felt that a return to private speech therapy might be warranted.  Admittedly, that set me back a bit.  Nea still does jargon speech (especially when excited or upset) and uses repetitive phrasing.  She has a handful of phrases that she uses on a frequent basis, and we haven't really seen many new ones. Even though she gets speech in the school it focuses more on social interactions and practical communication. I spoke to Diana and she will be starting up again with her in December. She'll be focusing more on articulation, trying to dissect that jargon and helping with more communication tools.  It's a never-ending saga when it comes to therapies.  Just when you think you have it figured out it changes in a heartbeat.

We head this weekend for evaluation of a possible start in equine therapy.  Equine therapy (working with horses) is a great opportunity for kids with Autism.  It can teach her bonding, communication, balance, core strength, sensory integration, etc.  Nea is very young at this point, but they want to meet her and evaluate her to see how she does.  If they think that she would be a good fit with the program, then she would be the youngest at this facility.  They also have group activities for kids, so socialization skills will get some attention as well.

If I've learned anything on this journey it's simply this.

Sometimes, you have to jump.

superhero

su·per·he·ro /ˈsu:pɚˌhiroʊ/ noun

plural su·per·he·roes

1 : a fictional character who has amazing powers (such as the ability to fly)

2 : a very heroic person 

There are many definitions of what makes a superhero, super.  It's not something I thought about until our superhero cape came today in the mail.

What DOES define a superhero?  I'm sure when you hear the term, something very distinct comes to mind.  A particular outfit?  The cape?  An attribute?  A strong moral code?

Here is a great discussion about this topic by Katie Schwarz:

"No definition will ever work perfectly, because "superhero" isn't a concrete distinct category but an archetype.  One can use a definition to determine if a character is nearer of further from the archetype, but never to find a definitive line, with supers on one side and everyone else on the other.  That line doesn't exist."

Now I think I understand.

What's a superhero?  I think it's whatever you define it to be, under whatever circumstances you feel require super powers of some kind.  And with that, I think Nea fits the bill.

When I think about what this little girl has been through over the past year or so, I am amazed.  She has shown  strength, courage, and an innate ability to smile through it all.  Yes, she has an entire team (therapists, teachers, family, friends) of folks that help her endeavors.  They encourage, they cheer, they support, they teach, they dry a tear and they believe in her unconditionally.  Superheros always need sidekicks, and Nea's SideKicks list is very long!

I've seen her get frustrated.  I've seen her freeze in fear meeting a new situation.  I've watched her get funny looks from other kids and simply go find another kid to approach.  I've heard her say, "I'm okay" even as I've held her tight with her little body shaking from sensory overload.  Her brain, her spirit, her senses and her being get shook every single day.

Can eat an ice-cream cone in a flash!

Could you do it?  I don't think I could.  I really don't.

Today Nea received a superhero cape in the mail.  We were on our way to the park when Poppa checked the mail and brought it to me as we were loading up the car.  I opened it, and started crying.  Such a sweet, wonderful gift for my girl who loves all things Batman, Spiderman and Ironman.

The handwritten note said,

"Super Antonea!  Roxanne thinks you are a Tiny SuperHero!  We agree!  Welcome to the Squad!"

Able to run at lightening speed!

Oh, my goodness!  How amazingly fun and very empowering.

Since she was buckled in her carseat I decided to wait until we were home to show her the cape.  (Just a sidenote....that was just dumb.  Seriously, I could have had some very fun photos in the park with cape!).  When we got home, I let her open the package and see it.

"Mama!  I'm a hero!"

She knew exactly what to do with it.  She wanted it on, she ran to look in the mirror and she exclaimed, "Just like Batman!  I'm a hero!"

Did I get it on video?  No, because I'm an idiot.

SuperNea's new cape!

Suffice it to say....Nea is one of the happiest superheros in town tonight.  THANK YOU to Roxanne for making this girl smile with pride and feel empowered!

We can't wait to see what adventures await Super Nea!

SuperNea hard at work

If there is a tiny superhero that YOU would like to nominate and sponsor, check out their website here!

Pulled the drain on swim class

I took Nea out of swim class.  Yup, I took her out.  It was not meeting her needs and she needs something different.

Now before anyone panics, I am fully aware that she NEEDS to learn to swim for her own safety.  Nea's attraction to water is very strong, and her impulse control is very weak.  She will jump in any body of water, anytime, anywhere.

As I've said before, Nea's been in a swim class since she was 6 months old.  She was never the baby that cried when in the water.  She was the baby that splashed and kicked gleefully.  I learned very quickly that I had to be careful with her around the pool because her impulse control was so poor.

Nea was usually out of swim during the summer months because we were doing swim on our own.  When fall came after she had been diagnosed, I wondered about a special needs swim class.  I spoke to two aquatic directors about a regular class or a special needs one and we decided that the special needs one would suit her best.  

That was a year ago, and it's been bumpy.  

Swim instructors at the place I take her change frequently.  So there hasn't been a great opportunity for her to bond with any single person.  That really is too bad, because the more she is "hooked in" with you, the more she will do for you.  The other issue that kept coming up was that these instructors.....as sweet and as nice as they are, would not listen to me when it came to helping to teach her.  I knew they did not have specific training in Autism and I tried to help them understand what HER motivators were.  I explained time and time again that putting her in the baby pool does not work for her because she simply just walks around.   Really, I grew sick of having that conversation.

So the combination of inconsistency, lack of knowledge about her Autism and not listening to my suggestions had me looking for something else.   In reality, her current state of swimming skills has come from me and our time in the pool together.  I've taught her how to hold her breath and the beginning of how to move underwater.  When I let the teachers know what she's done (especially when trying to quickly fill in a new one) the information is met with nodding and a courteous smile.  There's never a "okay, great! Nea, lets see what you do underwater!"  They each like the process they know and want Nea to follow that same process.  In the beginning, I was open to that, believing that learning the process presented was what she needed to do to learn to swim.  But what I found is that her frustration levels only increased.  There has not been a "lets go with where she's at today."  Every day is different with Autism.   And what worked last week, probably doesn't work today.  But that notion always fell on deaf ears.

Advocating for your child sounds so cavalier, until it starts to get in that messy world of hurting feelings or making someone angry.   The place we are at now has great programming, but it just doesn't work for Nea any longer.   What I really want is a robust program like this that is focused on kids with Autism.  Right now, everything is a retro-fit and it's just not working.  

I have contacted the Certified Therapeutic Recreation Director at the new place to talk about private swim lessons and options available for Nea.  The other thing I'm so impressed with is that they will make accommodations in ANY of their programs for special needs kids with a couple weeks notice.  Putting Nea in a tumbling class or a dance class has always been of high interest to me.  Also, this new place is connected with Special Olympics and I find that very promising.

I don't know all the answers or details yet.  In the meantime, Nea will spend weekly swim time with Mama and we will work on swim kicks, arm circles as well as movement under water.

Stimming

You've done it.  Yes, you.  If you've ever twirled your hair, shook your leg, bit your nails, drummed your fingers, tapped your hands....you are stimming.  Self-stimmulating behaviors.  They can provide sensory input or quiet an over-active nervous system.

Let's remind ourselves about Autism.  It's defined as  "a disorder of brain development, probably beginning before birth."  Notice it says "probably"....because in fact, we just don't really know.   It was once believed that it was caused from bad parenting.  We stressed out and devastated many Moms about "frigid mother" back in the 50's assigning the fault to them. Now the thought is that it's a very complex and multi-organ....affecting the GI system, the immune system, the metabolic system and the central nervous system.  It's very common for kids with Autism to have sleep disorders (Nea certainly does) and hormonal imbalances are being reported (Nea also has this).

The stimming behaviors are part of that central nervous system issue.  The difference between "typical behavior" and kids who have Autism is that the typical kids can turn it off or stop the behavior.  Children with Autism cannot. It should also be noted that some stims are seen as "disruptive" and therefore, therapy is used to help with the behavior.   There is much discussion in the Autism community and with behavioral therapists if these kiddos should be allowed to stim or if it should be stopped.

So, can you identify your own stim now?  I will confess, I have 2 very strong stims.  First, I twirl my hair....usually when I'm bored, or when I'm trying to concentrate.  I also rock back and forth.  I'm doing it right now as I type.  Self-stimmulating behavior for typical kids (and adults) is a matter of choice and a matter of intensity.  I can stop rocking and twirling very easily.

And, as predicted, Nea stims too.  We had to make a decision on this journey if we were going to allow her to stim or if we were going to try to stop the behavior.  At home, we allow her to stim and do not put limits on it at all.  In fact, we view it as a communication tool.  And we know at school the rules of society are very different.  They teach "quiet hands" if it starts to get to be too much.  I noticed that during speech therapy (when Nea has to concentrate very hard) that she starts moving her arms up and down as if she's drumming.  The therapist ignored it for a period of time and let her center herself with that activity....and then redirected her gently.  It worked well.

 So how do we know when Nea is stimming?  And what's it mean?

She has an oral fixation for sure (the paci, licking all new objects, flicking her nose to create a vibration around her mouth).   In and of themselves, they are not a big deal.  Babies and infants mouth objects all the time, it's how they get information.  6 month olds have a joyous time when they find their hands and toes and stare at them constantly.   However, for Nea at the age of 3, these activities are not developmentally appropriate and may even be in the way of progressing other development.  She also likes 3 pacifiers at a time.  One for her mouth, one to flick her nose repeatedly and one in her hand....squeezing.

A 3 paci moment (click on pic to enlarge)

Her other ones are spinning or falling down hard.  I can tell you when I see them the most....when she's been over stimulated (after school, time spent in a big crowd, or in an area with lots of noise) or when she's trying to deal with a big emotion (excitement, anticipation, fear, anger, frustration).  Her vocabulary is limited, so her ability to let us know the issue is limited.  She's 3....3 year olds can be quite verbal in expressing their ideas and emotions.  But because communication and speech are so difficult for her, it seems to manifest itself in different ways.  It's our job to meet the need with either a weighted blanket, dark room and quiet activities or hit the other end of the pendulum and get her on her jumper.

 I will tell you that some of it is science, some of it education from great therapists,but most of it's gut instinct.

Some therapists and scientists believe that stimming often produces a chemical reaction in the brain and that for people with Autism, that reaction is 10-fold.  If you've ever experienced a "runner's high", you understand what this means.  Seriously, if you had that feeling when you flicked your nose repeatedly wouldn't you do it often?  And if you were in a very stressful situation, wouldn't you do it as much as possible?

For some reason, I get this stimming thing with her and it never bothers me.  Maybe it's because her stims are more subtle.  But  I know for some parents it makes them very uncomfortable.  Although, I have to say,  the looks we get when she has a paci out are downright damning.   As she gets older, my plan is to help her identify when she's stimming so that she can understand when it's coming and come up with strategies to deal with it.

In the meantime....we spin, we rock, we jump, we flick and also we squeeze, we hide, we cover.

Welcome to Autism.