Watching my girl Learn

The end of the school year is coming to a close.  Nea has had a great year at her new school and overall we have been very pleased with her progress.  She has met several of her goals and on track for others.  Her new IEP reflects progress and even more growth.  In short, a successful school year!

Nea's school teaches 3, 4 and 5 year olds and is accredited by The National Association for the Education of Young Children (NAEYC).  You can imagine the standards they have to meet to achieve this accreditation and as I've said over and over again....we are so blessed to have them in our community.

The school celebrated The Week of The Young Child this week by having daily special events.  And when I say special, I mean special!  A petting zoo came to the school with chickens, goats, a pony, lambs, etc.  and there was also a trackless train giving rides that day.  For Nea, it doesn't get more special then this!  She loves animals and the train was certainly icing on the cake!  The school sing along included the principal with guitar in hand and teachers leading kids in this fun event!  Think pep rally, Pre-K style!  Parents are encouraged to attend and be a part of all the activities.  I think this is one of the many beautiful things about this school.

My schedule allowed me to attend the pinnacle of the week.....Big Truck Day!!  First I just have to say that our city leaders and businesses that participated get much MUCH love from me.  Volunteers are sent with their big trucks and spend all day at the school.

  For a young child, this open exploration is about the coolest thing since....well ever in their short little lives.  Not only are the trucks there but the kids are encouraged to get in, talk to the driver, learn what it does, etc.    Can you imagine the sort of learning that takes place in this type of environment?

I cannot rave enough about this week of events and the teachers/helpers/volunteers that make this happen for the youngsters in our community.   I watched in pure awe as teachers moved kids from one truck to another in a happy, energetic way.  I was tired after 2 trucks!  Nea's class is small (there were 9) and we had several adult hands.

Let's hope she doesn't  get comfy here

 Much like Nea, the kids in Nea's class tend to bolt and run so everyone needs a hand.  But the other classes with 20 students had 2 adults.  It's a good ratio, but it requires adult brain power like I've never seen.  These teachers are dynamic and exciting and the students will follow them like ducklings anywhere!

Back of the limousine!

Our first year at the school has been full of changes and full of exciting growth.  I've been so impressed that I volunteered to be the PTO President for the next school year, starting in August.  I think I will learn so much and I'm looking forward to being a part of something so exciting.  These teachers have a passion, and I can see it when I'm there.  It's nothing short of phenomenal.

The Blank Places

I try to do updates on the facebook page regarding Nea's progress as much as possible.  So if I'm behind blogging, I try to be sure to put updates there!  I have been out of commission for the last 6 weeks due to finishing school,  surgery, and not having the ability to sit at my computer for a long blog post.  Thanks for your patience!!


We just completed Nea's new IEP.  I went to that meeting by myself.  Her Poppa was very sick and the other therapists couldn't make it.  It really was a wonderful meeting as we shared information and there were no surprises.  What they see at school is what we see at home, every day.  Nea's new IEP has some good goals starting the 4th quarter of this school year.  It's been exciting to see the changes in her progress and we are ready to continue on!  The major issues continue to be social, fine motor and language.  In fact, we decided to increase her speech therapy sessions to 90 min a week from 60 min.  I think that's a very positive thing for her.  OT in the school will now be 30 min a week.  She has group OT in the sensory room (swings, ball pits, yoga, fine motor play, etc.) .    She still gets private OT and we started a weekly OT project at home as well to help meet her fine motor skills.  Overall, I felt that was a balanced OT and Speech program for her.  So her weekly schedule looks like this:

Speech therapy- 2 1/2 hrs
OT-90 minutes
School (social/academic)-10.5 hours

That's a whole lot for one little 4 year old!  Which brings me to my next topic.....

Nea has an ongoing issue with dry skin.  Not just dry skin, but severe "I swear I just put lotion on you 10 minutes ago" dry skin.  I finally got her in to see a pediatric dermatologist.  He's an amazing guy, very good in his field, highly recommended and a total perfect pedi doctor.  I've worked with him professionally as well, and found him to be just as wonderful from a nursing perspective.

When he came into the room, Nea did her usual hide under the chair, whimper a bit and avoid eye contact.  He said hello, and then turned his attention to me as we reviewed her history.  Nea finally came out of her hiding spot and crawled up into my lap, but buried her face into my neck.  He was able to touch her and examine her skin and determined that she has ichythosis vulgaris.  It's a genetic mutation that means her skin doesn't lock in moisture.  He gave us great ways to deal with the issue (bath every 1-2 days, special creams, etc.) and said all would be well.  Nea was still buried in my neck and I said to him, "I'm not sure if your staff explained, but she has Autism."  He looked at her quizzically and replied, "Oh, she may be a bit on the spectrum, but I don't know about having Autism....."

My heart sank.  Please don't misunderstand.  I LOVE this doctor.  But it is a startling reminder how far my medical peers have to go in understanding what being on the spectrum actually means.  I smiled sweetly and said, "No, actually she's been to a developmental pediatrician and a team of therapists.  She in fact does have Autism.  What you are seeing here is a year's worth of intense therapy and continued weekly sessions. She's made tons of progress."

The CDC just came out with new stats today.  Since the last scientific study, Autism has increased from 1 in 88 children to 1 in 68.  That's quite an increase in such a short time.  My major hope is that people understand that it's on a spectrum and there's no way you can "fit" someone into a definition of what Autism looks like.  If I do nothing else important in my lifetime, it's my hope to help facilitate a change in this understanding.

The article I read today said:

"Notably, the new report found that most children tend to be diagnosed after age 4, despite advances that have made it possible for diagnosis to happen as early as age 2.   That figure suggests that too many children are "missing out on the transformative benefits on outcomes that early intervention offers, " Ring said.  "Earlier diagnosis has got to be a priority."

Wow.  After age 4.  I can't imagine where we would be if Nea would JUST be getting diagnosed.  The science is showing that early intervention gives the brain an opportunity to "rewire" itself.  They have determined there are layers in the brain of an Autistic child that were laid down incorrectly in-utero. That means that somehow there was a genetic misfire as the brain was developing and laid down the bricks to the brain incorrectly in a certain spot.   It just so happens that this spot in the brain is responsible for social understanding and language development.

Therapies have been crucial to Nea's success and they started just weeks after her 2nd birthday.  If you are reading this and you have a child on the spectrum who was diagnosed after 4, this is NOT an attack on you in any way.  We all do the best with the information we have been provided.  In 3-5 years there is going to be information out there that I wish I would know right now, TODAY, so that I could help Nea.  The point of this is that information is power.  Information changes outcomes.  The more informed you are, the better decisions you make.  That's true in many things in our lives.  If you are reading this and you have a family member or have a friend who may have a child on the spectrum...REACH OUT.  Get them to an information site.  Autism Speaks provides a link to an online quiz that walks a parent through development.  At the end of the quiz, they give helpful ideas of what to do with the information.  Please, pass this on to anyone who might need it!

We still do not have a cause for Autism, which means we also do not have a cure.  Neither one of those facts bothers me, but I know it is maddening to some.  I try very hard to live my life in the "now" and finding the answers to those questions doesn't really help us "now".  It doesn't provide a guideline for how we should proceed "now".   Personally, I'm not waiting around to find the answers.  We are going to continue forward with how we know right NOW to help Nea.

If Autism is now 1 in 68 then everyone (parents of NT kids, educators, physicians, nurses, allied health staff, social workers, therapists, etc.) should be getting up to snuff on how a child they come in contact may be affected.  You are more likely to come in contact with, work with, be part of the life of an Autistic kid now....more than ever.

*stepping off soap box*






A recent speech therapy session with Diana had her on the phone to me that same day. (I'm still not able to take Nea to therapy sessions, the walk from the lot to the door is too much right now).    Diana has been with Nea since day one and knows her very well.  Apparently, during the session Nea started pointing to the cabinet in the room and the conversation went like this....

Diana: What do you want, Nea?
Nea:  Dora, inside.
Diana:  Yes, Dora is inside the cabinet.
Nea:  Too high
Diana:  I'm not sure how high she is actually.
Nea:  Can't reach
Diana: Ok
Nea:  Diana, you reach
Diana:  What do you want?
Nea:  inside, open

.....and on and on and on went this circular conversation.  Diana knew exactly what Nea was trying to say, "I want the Dora toy, can you get it out for me."  Certainly, most 4 year olds can easily have that conversation but she struggled the entire time.  Interestingly enough, when she was doing some pretend play, she had very distinct back and forth conversations with characters she was playing with as she spoke for both of them.  So why did the speech therapist call me?  Because we have to strongly encourage her to find the words she wants, instead of getting by with the "gist" of the need.  Admittedly, we are not great at this.  Life happens, and in the interest of getting dinner on the table, or corralling her into the car....I can usually fill in the blanks and figure out what she needs.

But the blanks are the important part.  It's the blanks that are the "art" of conversation.  Those blanks keep her engaged with peers and allow her more opportunity to fit in, rather than stand out in an odd way.  In short, the blanks have to be filled in by her...not us.

Always learning

Life is happening.  Every day life is happening, and I am grateful for all the little things along the way.

Playing with new friends and did a self introduction!

I update on the facebook page with the day to day things that happen in Nea's life.  However, today it just felt like a day to do an actual post.

As I stated before, we decided to put Nea back in private speech therapy.  Her Poppa, myself and the private OT felt that she was stalling in the area of speech.    She still gets speech services via her IEP at school but I have a feeling that I may have to advocate for something a bit different for the next school year.  Chopping it up in 15 minute increments just doesn't work for her and we'll need to brainstorm other ideas.  (of course that all could be an interesting conversation when all 17 of us sit down to discuss it!).

Waiting in the lobby for therapy

When Nea has her private OT appointment (every Wednesday morning) I usually sit in the waiting room.  There is not an observation area, and I'm too distracting to be present during a session.  Usually I use it as good "Mommy time" by reading a book and enjoying my favorite chai tea.  After about 30 min into the session, the therapist came to get me.

"You have to come see this."

 Remember when I talked about the OT rumpus room?  There were so many things in that room that terrified Nea.  Swinging was a nightmare, going through tunnels caused panic, odd textures made the tears come.  All her sensory issues manifested in this room as we identified them one by one.  I always felt bad for her because it just seemed so torturous!

And so I went to the OT room to see what A wanted to show me.  Nea was sitting in one of the tunnels.  Let me say it again.  Sitting in one of the tunnels.

"Hi Mama!  Watch!"

She crawled out of the tunnel, onto a platform, up a tube, and shimmeying down into the tube.  The therapist gave her an instruction "hand me the blue hand."  Out she popped with the blue rubber hand and gave it to her!  She then shimmied down the tube onto the big pillow and then had to crawl onto tiny stools on her hands and knees.  The therapist would say, "Okay, move to blue" and she would move her hands, then knees to the little stool.  "Okay, now yellow" and she would do it again.  The therapist had to steady her knees or she would tip over, but she did it!  Her upper body still has low tone and balance remains an issue.  But with a sturdy hand she is very proficient!

The dreaded obstacle course

Nea then had to stand up and hop on the rubber feet placed on the floor.  To my amazement she hopped  with a spin when the foot pattern changed.  I'm pretty sure I can't do that myself!  When she was done, she looked at me and beamed.
"I did it!"

Can YOU hop this pattern??

Proprioception (knowing where your body is in space), multiple terrains, upper body strengthening, listening to direction, leaning forward without falling, balance, fine motor skills, gross motor skills.....all pulled together in a 3.5 minute obstacle course.  I couldn't believe I had seen what I just did.

Nea spotted Diana (speech therapist) in the hall and said, "Oh!  There's Diana.  I have to go Mama.  See you later!"  And off she went.

I'm still gobsmacked in the OT room watching her walk away.

The OT said to me...."remember when she couldn't even come in here without screaming? Remember when everything about these obstacle courses made her shake with fear?  Look at her now!  You guys are doing such a good job!"

Us?  Uhm..... I don't think so lady.   I don't have an obstacle course like this at home!  Her therapists are top notch and give her so much patience with love.  They push her, they hug her, the meet her halfway.  Nea didn't get this far by herself....it's taken a village and that will continue to be true.

 I'll admit it.  I cried as I sat there thinking about what progress she continues to make.  On her timeline.  In her own way.

It's a lesson I constantly have to learn and remember every single day.

Nea did just as well in speech therapy.  Diana is working diligently on auditory processing.  She gives her lots of exercises that require her to listen, process information and make decisions for answers.  You can tell it's taxing and requires a ton of focus.   We've started to notice that when she needs to concentrate she holds the object up very close to her eyes.  Is she doing that because of a vision issue or is she doing that because she has to narrow her field of vision and let nothing else in?  It's a mystery that's not solved today, but it's something we're going to have figure out with the help of OT.

I also learned a great tool today!  When Nea says her own name, she says, "I'm Mia"  I correct her every time, but it doesn't seem to stick with her and she just can't pull that "n" sound out.  Diana noticed her doing it today as they were playing a game.  Nea would say, "It's Mia's turn"  Diana stopped her, had her look at her mouth and gave her a visual and verbal cue.  "Not Mia, Nea"   She used the cues that she uses with kids who have apraxia, which is a motor planning issue.  Basically, she holds her finger to the side of her nose, crinkles it up and says the "n" sound.  Nea got it right with that cue every single time.   I'm so happy to have this tool now!!

It took me a full hour to get her out to the car!  Why?  Because if we don't need to veer from the routines, then really we shouldn't.  She's just happier that way.  She had a pretty busy morning in therapy and certainly functioning outside her comfort zones.  Ritual and routine are comforting....that's true for all of us.

Jamba Juice silliness

So off to Jamba Juice for a snack.  And then the busy beads for some brief play.

Busy beads!

 And then to the lobby to look at books.  To her delight there was another kiddo with his family in the lobby.  She said to me, "Look Mama.  There's a boy."  And so I helped her with the introductions...."Tell him your name" "maybe he wants to play....you should ask him."   And so they did.  They played together for a good 30 minutes.


I'm quite sure her bff, Eli will be insanely jealous if he ever finds out.

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.