BeBe Gallini

Yes, I know it's been a long while since a blog post! I really have been busy!! New job, new marriage and new routines.  I also have this crazy notion that I'm repeating myself in posts sometimes, but a friend reminded me that's not true.  I've also had a nagging feeling like Nea's stories are not "big" in the Autism world and no need to share....but then I kick myself all over the place for that one.  I don't believe it deeply, but in this world of "everyone just overshares too much, it's stupid" thing we seem to be saying in social media this days....I'm a bit paranoid.  I made a promise to myself to get back on track.

Okay, so we have an Elf on the Shelf in our home.  Before there is a collective sigh and clicking off this link, I would like you to hear me out.  No, I'm not going to post all the crazy antics our elf has been into, or post pictures of elaborate trouble she finds herself in every night.

In one sentence I could sum up this post with "You don't want the magic?"

This year, more than ever I have seen post after post, blog after blog, article after article about the "negative aspects" of this tradition.  The most common theme is, "Why would we send a message to children that you have to do something good to get presents?   Shouldn't they just be wanting to do that anyway?  Isn't it instilling fear to tell them that someone is watching them and reporting back to Santa?  Why can't we go back to a time when Christmas was simple, and there weren't all these creatures flying in to file a report on you?  Its  ridiculous!"

Jeeez......

Okay, I would like to point a couple things out.

One of this country's most beloved songs at Christmas time is "Santa Claus is Coming to Town".  Let me refresh the lyrics for you......

He sees you when you're sleeping
He knows when you're awake
He know if you've been bad or good
So be good for goodness sake!

Oh, you better watch out!
You better not cry!
You better not pout, I'm telling you why
Santa Claus is Coming to Town

This song was written in 1934.  1934  Is this back far enough for you in remembering the simple things at Christmas?  I got news for you folks.....we've been giving this message to kids for 80 years!!!  80 FREAKING YEARS!!  We allllll drank the Kool-Aid.  We all remember singing that song joyfully, pausing to think just a moment that Santa might be watching.....and then back to singing joyfully that Santa was coming soon!

How did the Elf get demonized about this "watching you, reporting you" thing??  We've sent that message all along!  It's the most double-standard thing I think I've ever heard.

We do have an Elf at our house.  Her name is BeBe Gallini.  We got her when Nea was 2 years old.  The only thing I got out of her that year was a name....

"Nea, look! an elf!"
"Mama, me elf"
"No sorry sweetie, we can't touch her."
"Me elf!!" (pointing up to where Bebe was perched)
"If we touch her she can't fly.  What should we name her?"
" Me elf!"  (this went on like 10 minutes)


"Me, beebee"
"BeBe?  BeBe!  That's a great idea!  Her name is BeBe!"

....and because I have such a fond childhood memory of The Brady Bunch, I added Gallini.  A memory of mine, attached to a memory of hers.  It was perfect!

So BeBe Gallini flew back and forth every night.  Dutifully watching and paying attention to our little familly, making sure Santa had the 411.

And Nea could have cared less.

When Nea was 3, BeBe came back, flying into high perches around the house.  The "no touch" rule was no way going to happen.  So BeBe just flew from one high piece of furniture, window, etc. to another.  Nea DID pay attention this year.  We read the book, we watched the movie.  And Nea got up every day asking for her.

"Where's BeBe?"  It was a game.   And it was a great game for my little Autistic girl.  It was an activity of anticipation, of focus for searching and self satisfaction when she found her.  She always started in the place where she last saw her, then went to the place before that.  Then, the place before that....  Actually, I was quite shocked at her memory and categorizing of all the places BeBe had flown in from.  She was sad, when BeBe was gone and asked about her for a week or so after the holiday season.  I knew we had started a tradition.

This year, BeBe flew in unceremoniously.  Some folks make a net for her for landing, but we are not quite there yet.  One day she appeared and Nea spotted her.

"Hey! There's BeBe!"
"Oh!  Wow! Awesome, that means Christmas is coming soon!  BeBe has to go talk to Santa every night."
"Mama, no touch BeBe.  She will lose powers"

Whoa!  What!?!  She remembered that!?!?

"That's right!  BeBe, can't be touched"

"I know Mama"

BeBe has flown in from place to place with zero crazy.   She sits high on a perch still, safely away from curious hands who just wouldn't have the self discipline to not touch her.  Even though she knows she shouldn't.    I'm sure every year will be different with BeBe.  She'll evolve and change, just like Nea does.

But do you understand the magic?  It's not just our household, it's all the other ones too.  It's kids anticipating Christmas morning and building the excitement.  We've all given it a shot, at least once in our lifetime to stay awake all night and catch a glimpse of Santa at work.  BeBe is just an extension of that magic.

Let's not deny our children that.  Let's let them be kids and have all that magical thinking as long as they possibly can.  No one's hurting anybody.  Animals aren't being harmed.  People aren't being killed.

Children are simply following a tradition of millions of children before them.......

"Oh!  I just can't wait!"

Pre-K...part II

Nea started school this past week.  I cannot tell you how excited this girl was about going to school.  It's been a very long summer for her not having that routine, not seeing her friends and not seeing her teacher.  I tried to keep her busy during the summer, but nothing fills the school gap like school.

She must have been hearing us talk about school, getting prepped and ready, getting a new backpack, etc. that school was heavy on her mind.  A few days before school was to start she came to her Poppa and said, " I made a bad choice."  We talk about choices a lot....good choices for food, good choices for behavior, good choices for play, etc.  So when he asked her what was the bad choice she made her response was, "I said good-bye to K"  (K is her teacher's name).

Oh my goodness, has this child believed that the reason she didn't get to see her teacher all summer was because she had said goodbye?  Poppa tried to explain to her that school was closing and everyone said goodbye, but we weren't convinced she was buying what we were trying to sell.

A few days later it was time for parent orientation.  The kids are allowed to go and play in the library while parents listen to the principal and spend time with the teacher.  After about an hour's time, the the child is brought to the classroom to look around and to see the teachers.  It's a great set-up and experience for everyone!

"Mama! I'm at school!"

We pulled up to the building and Nea was super excited.  "It's my school!  My school!  We are at school!" She practically skipped inside and we went to the sign-in table to get her folder and information packet.   I heard a voice behind me say, "Hi Nea."  Nea peeked out from behind me and saw the teacher's assistant from her classroom.  "MS. R!!! MS R!!!"  and she jumped into her arms!!  I mean this girl jumped from the floor to this woman's arms in a nanosecond.  Thank goodness she was quick thinking and caught the super excited girl!! She nuzzled into her neck and hugged and hugged.   It was a beautiful reunion.

Mrs. K was standing there as well, and said hello.  I wish you could have seen Nea's face.  Surprise, joy, dreams-come-true, excitement and gratefulness were all present.  She jumped from one set of arms to the other and the hug-fest started all over again.  Nea cried tears of joy as she held on tightly to the person whom she thought she would never see again.  The tears in my own eyes were hard to ignore.  Nea danced happily down the hall to the library with Ms. R to go and  play with friends.

Making eggs in the make-believe station

Many parents of special needs kids send in a letter prior to the start of the school year.  It usually contains information that just can't be navigated in an IEP.  I did this last year and decided to do it again this year.  At this point, I am sure that I'll be doing this every year.  This year's letter was a little easier because Nea has the same teacher and all I had to do was bring her up to date with our summer.   Next year (when she starts Kindergarten) will be a much more difficult letter to write.  I share the letter with you here for anyone who may be looking for ideas for their own kids.

Speech
It's been remarkable to watch her speech make leaps and bounds over the summer.  The jargon speech is so minimal, the only time I notice it is when she's really excited.  As we all suspected, she believed she was saying words and it was a matter of having the exact words that made the jargon go away.  Sentences are 5-8 words and she very much wants things labeled.  "Mama, what's this?"  "Mama, what's his name?"  We've been working on conversational speech, and that has been the hardest part.  I send a diary of her weekend events into the Speech therapist and she talks them over with Nea.  "What did you do?"  "Who did you see?"  that sort of thing.  When someone asks her a question, she responds immediately with "I'm Nea".....and it's certainly not what they asked.  She's not listening to the question or the conversation, but rather giving the answer she things is wanted.  It's a work in progress, for sure.

OT

Her core and upper body is much better these days.  She will spend time with her head leaned forward, or crawling around on the floor like a cat.  Holding a crayon still varies....she'll use the tripod position once, and then the next time she will power grab/hold it.   I've noticed more that if she's had a long day, normal talking voice bothers her. "Mama....shhhh, that's too loud."  Messy play is still not a favorite.  

Social

The hardest part, and the part that breaks my heart.  She loves to be around other kids, but she just doesn't know quite what to do once she's there.  She may walk up to a random kid and yell, "Tag! You're it!"....without any other words. No introduction, no request to play, nothing.    I hope school helps more with the social part of how to insert into play.  She just doesn't seem to get it.  She tends to gravitate to younger kids on the playground because they are more forgiving.  Peers and older kids are less so about her "odd" behavior and loud talking.  We've also been working on eye contact by playing the "What color are her eyes" game.  Right now it's just with family (Mama, Poppa, Grandma, her cousin, her aunt, etc.) and she does pretty well.

High energy without a doubt in new environments.  At home, she will sit and focus on a show or reading a book or her ipad.  But out in the big world, she amps up and I worry about anxiety.  When she's mad or frustrated, she does a lot of foot stomping and yelling her favorite phrase "It's not fair!".   The polar opposite of that is when she fully understands what she did/said was not okay and she'll cry out, "It's all my fault!!" bursting into tears and crumbling into pieces.  Needless to say her emotions run all over the place some days.

She is fully potty trained! She does very well with poop and pee and does not announce.  She just goes on her own.  If she is someplace new, she will say, "I have to potty" and I take her.  She had only 1 accident all summer and that was at the park.  She was much too involved in play, and waited too long.  Other than that...it's been a very wonderful thing.  What did we do?  Nothing.  You guys had set a routine, we followed that format and then we just let her lead.  It worked!!

She still uses the paci at home to self soothe. It's the one thing I would really love to get rid of.  She doesn't use them (yes 3 at at time) unless she's tired or she's stimming.  She uses one to suck, one as a squeeze ball and one to flick her nose. The leash on the paci she will drape around her mouth.  It's the crazies self soothe I think I've ever seen.  We don't send them to school, and we need to figure out how she self soothes there to try and mirror that at home.

Eating
She does well.  Even new things she will at least pick up and touch her tongue on it.  Sometimes she will say "No thank you" and not even try it.  We've been lucky in that she hasn't had the gastric troubles that so many kids with Autism have.  She's been on a chewable probiotic for about 5 months now which I think also helps.  Milk is still her favorite beverage....God forbid she ever develop an allergy to it!

Nea was thrilled to ride the bus, to be back at school and to be with her friends.  I have always said that Nea will thrive as long as her network and support system support her in every way.  We have had amazing experiences at our early learning center and look forward to another wonderful year.  I'm not going to lie....I am starting to think already about Kindergarten.  Which school will she go to?  Will the teacher be as invested as Nea's teachers have been thus far?  Does she ride the bus with bigger kids?  Do they mainstream her?  Pull her out for therapies?  Both?  Is it a separate special needs classroom?  There are more questions right now than I have answers.  And I remember feeling this way before she started her Pre-K time as well.  I was scared as hell.  

For now, I 'm going to remember that I'm an integral part of Team Nea.  I plan to  enjoy our year with Mrs. K, the rocking school she attends and watching progress.

1st Day of School

Going Right instead of Left

Where do I even begin?

Had I foreseen the day today, I probably never would have gotten out of bed.  It started out simple enough as Nea and I snuggled in bed this morning, laughing and playing.

"Mama, I'm hungry!   Lets go eat pancakes!"  It sounded like a fabulous idea, and I was starving myself.  We were dressed and out the door within 20 minutes, talking about pancakes the whole time.

We went to our usual chain pancake place here in town.  There were quite a few people there and we had to wait.  Of course that's not something easy for my girl, but we tucked ourselves in a corner bench and pulled out the iPad.  The restaurant seemed loud to me, and soon enough she asked for her paci.  I figured the sound was too much and she needed to cope. I handed her the usual 2 pacis.  One is for her mouth and one is to flick on her nose.... one of her most frequent stims since she was an infant.  20 minutes later (and a surprisingly well coping girl) they were ready to seat us.

The restaurant is divided in half.  Seating on the left, the center (where the cashier is located) and then more seating on the right.  I followed the waitress as she turned right.  Nea followed me, and then stopped suddenly.

"No!  Not that way!! This way!"  ...she pointed to the left seating area.

"Nea, come on sweetie.  We aren't sitting there today.  We are sitting over here."

"No!  Mama!  NO!  I CAN'T!  I can't sit there.  I sit over here. With my Raquel and eat pancakes!"

This was not a soft conversation.  This was full blown screaming with hand gestures and foot stomping.

"Nea. Listen, there is no room over there, we have to sit at this spot.  See, there's a little booth over here too that we are going to sit."

"No!! I can't!!  NO!!!  It's not fair!"

The iPad was tossed to the floor.  One of the dinosaurs she had in her hand was thrown across the room.  The crying became manic and desperate.  I had only one choice.

We had to leave.

The waitress was confused.  Patrons in the restaurant looked stunned.  To be honest, I wasn't really paying attention to them because I was focused on her.  She started shaking and hitting herself.  It was really time to go.

I grabbed her hand, and headed for the door.  "No!! Mama!  I want pancakes!! Pancakes!!"

I ignored her pleas, put her in the car and buckled her in.  I always get nervous when she's in that state because of the fear she will bolt and the parking lot was busy.  Once she's locked safely in her car seat, I can take a deep breath.  She continued to cry and lament about pancakes as I drove off.   Pancakes were the new fixation, and I wanted to meet that need if I could.  The morning had been such a disaster so far, I really needed to redeem it somehow.

I headed to the OTHER restaurant, across town.  Same chain.  I called my Mom on the way there and cried into the phone about how bad of a morning we were having.

She calmed me down and talked me off the ledge, the way that only mothers know how to do.  By the time we got to the restaurant, I was ready to try again.

As soon as we hit the lobby doors, Nea began shouting.

"No!  Not this one!  The other one!  I want pancakes!"  I coaxed her inside and we sat on the lobby bench for 15 minutes trying to work up the courage to go have a seat.  This one was not quite as busy, and not quite as loud, for which I was grateful.

Finally she said, "I can't do it.  Let's go home."  Sigh.  I wanted a win for her, but she just couldn't do it today.  So I resigned myself to the fact that we would take what we could from this, and move on.  As we were walking out, I said..." okay, you know that means no pancakes today, right?"  She stopped.

"Okay...let's go in.  I want pancakes"  She held my hand bravely and clung close to me as we waited for the hostess to seat us.

"You can do this sweetie.   You're brave and strong.  I will help you", I whispered in her ear.

"Okay, Mama."

They sat us in a booth, which Nea balked at immediately.  "NO!!  The table!" and they were kind enough to let us move over.  As we settled ourselves into the seats I felt like I had just climbed a mountain.  Nea sat down, a bit traumatized herself.

Trying to pull herself together.

The waitress came over with a smile on her face and a warm heart...."Hi, I'm Angel and I'll be serving you today."  She really did feel like an angel with the warmth in her voice and her kind eyes.  It was the emotional hug I needed and I spilled my soul to this complete stranger.  Tears rolled down my face as I rambled....

"Hi Angel, we've had a rough morning.  My girl here has Autism and we were at the other restaurant where they tried to seat us on the right, instead of the left.  It didn't go over well.  So now we are here and I've spent the last 15 minutes trying to coax her inside for the pancakes she so very much has been looking forward to.  She's really scared and out of her comfort zone and I'm a little frazzled myself.  I'll have a coke, she'll have a milk."  

She simply smiled, "Don't worry honey, I'll take care of you and your girl."

I could have kissed her.  The emotion of the morning, the fear of not knowing what to do, the frustration of this damn Autism crap that rules the brain of my girl all piled up into that moment.  Unloading that burden to the kind waitress with the gentle eyes was exactly what my heart needed.  She was an angel, indeed.

Nea had her yummy pancakes.  She even ordered off the menu herself by pointing to the picture.  She insisted she didn't want eggs, but ate mine when they arrived.  I think I ate a piece of bacon and some toast.  I don't remember.

Lining up coins.  A way to get control. 

I kicked myself for not recognizing that we had established a routine by sitting in the same restaurant and having a waitress named Raquel.  I was mad that Autism has such a hold over my girls thoughts that she can't even enjoy a nice pancake unless a specific process occurs.  I screamed internally for Autism being such a chain around her that I can never break.  I can give her tools, and hopes she learns more and more with each life experience....but the fact of the matter is that I can never get that chain off her.  She's going to have to find her own coping skills, her own resources (internal and external) and figure out what works for her.  But damn it all to hell that she even has to travel this road.

Angel brought us our check and I thanked her for turning our morning into something good.  She smiled at me and touched my arm gently, " Anytime honey.   You're doing a great job.  Your girl is so sweet and she has those dark eyes that tell a story.   It's a good story.  You're doing just fine, honey.  You're just fine."

Salve to my heart, sealing the crack that was starting to form.  My Mom had already put the pieces back together and Angel provided the glue to make them stick.

Do me a favor. One that I don't usually ask.  Please share this post.

I want it shared because I want people to know that there might be a Mom in a restaurant doing the best she possibly can with a situation that is beyond her control....and her child's.  I want there to be more Angel's in the world who give love and understanding to a strung-out, tearful Mom expecting nothing in return.

And I want the world to know that the chains of Autism my not be able to be broken, but love.....love can make them less heavy.

Finally.  A yummy pancake!

Let Her Be

Autism still lives at our house.  And because Nea is doing so well, it seems that some wonder if Autism really lives here at all.

This is a post that probably is going to come off snarky and mean....but I truly don't mean it to be that way.  I want all persons who come in to contact with an Autistic person (adult or child) to understand that good days and bad days happen.  I want folks to understand that therapies make a difference in how my girl interacts with the world.  It's important you know that Nea's progress is because she works hard, she is surrounded by a supportive network and she's one damn determined girl.

But there is no cure.  Let me reiterate.

There is no cure for Autism.


"She's doing so well.  I would almost say she doesn't have Autism"

Aside from dropping my jaw to that comment.  I simply replied.  "Come live at our house"

In an effort to keep Nea from regressing while school is out, we do some sort of school work daily.  Her teacher gave us ideas to do daily with her and my Mom bought this really cool workbook full of activities for Pre-K kids.

We were working in the workbook the other day tracing the letter A and B.  A is an easy letter for her because her name (Ántonea) starts with A. However, B proved to be a much more difficult task.  She grew frustrated quickly.  She grew so frustrated  she slammed her head on the table and threw the green marker across the room.  I let her express frustration, but I draw the line at throwing objects.  I told her to pick it up, which she refused.  She had thrown herself to the floor, and began hitting herself repeatedly.  It was hard to decipher tantrum vs meltdown with this one and decided it was a combination of both.

Her frustration with the letter tracing took over quickly.  She kept saying, "I can't do it.  I can't do it."  And when I offered hand over hand with her, that seemed to make it worse.   I think the throwing the marker was 4 year old tantrum about the situation and had to be addressed.  She was distraught.  She was screaming, crying, flailing all over the floor.  I had to physically pick her up, take her to the green marker, use my hand over her hand to pick it up and then hand it to me.  The whole time, staying calm and using a reassuring voice while being assertive.  Hell, is that even possible?  I don't know, but eventually she collapsed into my arms, shaking and cried herself to sleep.

Yah, come live at our house and watch her spin constantly in the middle of the living room.   You'll never wonder again if she has Autism.

"She really enjoys other children.  She sure doesn't act Autistic"

 Yes, she really does enjoy the company of other children.  But have you seen her try to play with them?  She doesn't understand the social rules and as she gets older, it's really starting to become evident.  Younger kids are given a "pass" for awkward social behavior.....older kids are not.  I watch her on the playground and it just breaks my heart.

She will run up to some random kid and yell " Tag! You're it!"....running off.  The kid (having no idea why he was suddenly tagged) just looks at her oddly and runs off.  So she then goes back and starts yelling at him like a dinosaur.   She will walk behind him, growling like a dino for quite awhile.  Finally the kid will turn to her and say, "Stop that!  Get away!"  And she will turn, head down....and walk away.  It makes me cry every time.

We talk about it of course and often times I try to facilitate play with her and another child...usually a younger one.   But more often than not, this scenario plays over and over again.  Every once in while, another child will connect with her and she is blissfully happy playing games, running and giggling.  They are hard to find, but I am grateful when we do.

She wants friends.  She wants to connect.  And we have to work on how to do it every day.

"I'm sure she'd be just fine mainstreamed.  When she goes to kindergarten, you won't have to worry about special needs classes.  That will be too hard anyway."

*sigh*  I don't know.  And if I don't know, you certainly don't either.  I battle this one often in my own head.  Her IEP works so well for her that she is able to navigate her outside world very well.  Should I then take it away?  That seems counter productive.  I can't even begin to think of that sort of decision without input from her therapists and teachers.  It just seems odd to me that we would take something that is allowing her to be so successful and put it on a shelf.


Yes, Autism still lives here.  There is not a day that goes by that I don't see it rear its ugly head.  Please don't diminish Nea's hard work, courage and strength by telling us that "she seems so perfectly normal."  (a word I dislike anyway).  She really has Autism.  And we really have to address every single day.   Her family, her teachers, her therapists will work diligently to give her all the tools she needs in this world.

Let her be Autistic.

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.