Here's How It Can Happen

I follow many Autism community blogs, websites, organizations and facebook pages.  Needless to say, my newsfeed started filling up when the story first broke about Jayliel Batista.  Jayliel is a 5 year old that wandered away from a family member's  home on New Year's Eve.  He wasn't wearing a coat, nor did he have on any shoes.

A search party was sent out for him, the police were notified, and search dogs were summoned.  The entire community looked for him.  They were told he may be frightened and would run if he should be called by name.  They searched in nooks and crannies.  Bushes, brush areas, people's yards...and as each minute passed.....the light on Jayliel's story grew dimmer and dimmer.

They searched for 36 hours.  And they did find him, about a 1/4 mile from the relative's home.   But in fact Jayliel's light had gone out...and he was found dead 8 feet at the edge of a canal.

A canal.

Every statistic out there speaks to the fact that what kills the majority of Autistic kids....is drowning. Fountains, ponds, lakes, rivers, ditches....and now, canals.

My frustration immediately was with the people searching for him.  Why didn't they check the canal first?  Did they not think he could have gotten that far?  A scared human, dog, cat, etc. can run pretty far, pretty quickly.  Why do we not have enough awareness that the water is the killer?  How have we missed this, again?

But I had to step back from that.  Was I in the search party?  No, I was not.  So I don't know how they set up the grid.  I have no clue how the search party was deployed.  Maybe they did search that area.  I just simply don't know.  And because I don't know....I have no right to sit in judgement of anyone.

But here's what has bugged me the most.  And quite frankly, always bugs me when one of these stories comes to light.   And for some perspective, it's about every week or 2 that my feed is filled with missing...soon to be found drowned kids.  It's getting to be so disheartening.  But I digress.

What's really got me honked is how much blame is being tossed on the parents...

"He was 5.  This is parents not paying attention. They were probably on their cell phone."

" I don't let my daughter out of my sight.  EVER!  How could these parents just not know?  They are negligent!"

" Did they not have a safety plan?  They were at someone else's house.  They should have had a plan.  I'm sorry, this is a poor parenting issue."

....and on and on the trolls go.

And these are parents of autistic kids.  These are people that live the same world that Jayliel's parents live in on a daily basis.  These people are supposed to be the "support system."

Pfffft

Just like I know nothing about that search party plan.  No one knows what happened at the relative's house that night.  Maybe Mom had JUST checked on him and she was living in that 5 minutes of comfort that all was well.  It's only a short time, because you know....you are going to have to check on him again in 5 minutes.   Maybe he was asleep, and she believed he still was.  My point is...my God, none of us were there.  And none of us has the right to stand in judgement.

I'm going to share my stories about Nea's wandering.  I'm not going to lie, I'm a bit nervous about sharing because it makes me feel like such a shitty parent.  And yes, I am aware that every parent has "that moment" that has happened to them before.  But there is a LOT of persecution in the Autism community regarding this issue.

One of those situations happened just today.  Today.  Today after a 5 year old boy was found dead.

Here's how it can happen.....

Nea was 15 months  and we were playing in the living room.  It was a beautiful spring day and our big door was open, with the screen door letting in the nice warm air.  I yelled to her Papa, "I'm running upstairs a sec to go to the bathroom."  He responded, "Okay!"

And so, as most things happen....I went to the bathroom, but then ended up folding some towels while I was there.  I heard a knock at the door and headed downstairs to see who it could be.  I heard Jon in the kitchen and starting to walk to the front door.

And there was a complete stranger standing on the porch holding our daughter.

What.  The.  HELL!?!?!

She smiled a big sweet smile and reached her arms out to me..."Mama! Hi!"

When I went upstairs...Papa assumed that I was taking Nea with me.  I assumed that he would start keeping an eye on her.  Neither one of us was very clear.

Thankfully that day a kind neighbor had seen us playing outside earlier in the day and knew where she lived.  He found her 1/2 down the block, on the other side of the street.

15 months....1/2 block, crossed the street.  I couldn't breathe for a few minutes.

When Nea was 3 I caught her heading out the side door.  I screamed so loud that she sat on the floor where she was and started to cry.  "I outside."

That prompted me to order The Big Red Safety Box.  A free kit that includes "Stop signs" to put on the doors, a family emergency pack, a form for first responders (so time is not wasted getting a ton of information about the child), etc.  We put more high locks on our doors after that day too.  It took me awhile to breathe after that.

Today we were late for church.  As we pulled into the parking lot, Nea squealed..."Look Mama!  Look at the water!!"
There's a pond right in front of our church.  It rises and falls like any body of water based on our precipitation.  Today, it was looking especially beautiful as it had a fresh, sparkly sheet of ice on it.

"Ohh!  Yes, that's pretty!"

We rushed into church.  Because we were so late, the children were filing out of church and headed to their education classrooms.  She LOVES her "church school" and filed right in line with the kiddos.  She practically ran to the back of the building!  I watched her take a left to head to her classroom.  I grabbed  a cup of coffee and slipped into a seat for the rest of the service.

After church was over, I headed to Nea's classroom.  The kids were still working and the adults were moving around the table helping them.  I didn't want to interrupt, so I peeked in the window.  I didn't see Nea, so I popped my head in....

"Is she in the bathroom?"

The teacher looked at me with shock on her face...."She's not in here...she's not been back here at all."

Oh my God!  Oh my God!!  She's had an entire 40 minutes!!  She's 40 minutes ahead of me.

THE POND!!!!!!!

I dropped my stuff and headed for the door.

Oh NO! NO! NO!

It's so cold.

The ice is not that thick.....

Why didn't I take her in the room?

Do I see her coat?  Was it still on her?  Did she hand it to me?

It's so cold!

The water...the beautiful water...

My God...please let this be a nightmare!!

10 seconds.  It took 10 seconds for those phrases to pass through my head.

The nursery is on the way out the door, and on a a gut, I popped my head in there.

There she was, playing in the corner.

I leaned against the wall to catch my breath and try to contain myself.   They told me she came in there fairly early at the start of the hour.  The girls in there know her, they know she gets overwhelmed with sounds/sights sometimes and they assumed that's what happened.  They were happy to let her hang out with them.  They assumed (and rightly so) that I sent her that direction.
Everyone was supportive and apologetic, but there was no need to be.  I should have handed her off myself....adult to adult.

Thankfully, I only had to learn a tough lesson today.  I didn't have to start searching for my 5 year old in a semi-frozen pond.

It can happen.  Over half of children with Autism are prone to wandering.  A lack of awareness, not a sense of danger...etc...the risk is just so high.

So what do we do as a community?  There's a blog I follow that is called Autism Daddy.  He's a great writer who has done a perfect job of outlining what needs to happen-there's no need for me reinvent the wheel.  I think he has excellent suggestions.  Please take a moment to read them.

If you are in the Autism community...please, let's not tear each other down and judge during these horrific instances.

If you are not in the Autism community...please, help us.  Helps us raise awareness in your community, educate yourself, understand the issue.

It can happen.....

Pushing.....

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

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

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

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

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

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

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

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

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

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

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

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

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

"I can't hide her Autism."

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

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

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

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

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

Nea age 4 @ Pre-School

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

But am I willing to push her?

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

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

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

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

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

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

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

What!?

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

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

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

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

Oh my gosh, I love this woman!

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

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

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

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

That's a pretty amazing combination.

I can't wait to see her fly!

The Christmas Tree and The Snowman

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

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

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

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

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

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

Wrong.

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

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

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

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

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

Shit.

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

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

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

"No.  I'm scared."

"Why?"

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

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

"No Mama"

....and so she didn't.

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

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

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

I cried alot.

I cried the whole rest of the performance.

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

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

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

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

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

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

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

It's been a day.

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

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

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

And she did.

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

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

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

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


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

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

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

Being Social - ish

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

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

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

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

So that's what I'm doing.

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

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

And there's lots of social learning in both.

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

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

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

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

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

"Are you okay?"

"Hey, are you okay?"

"oh no, are you okay?"

"Girl, are you okay?"

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

We have a little more to learn I think.

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

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

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

*faint*

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

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

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

And she did.  Very first thing.

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

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

That's the best we can have right now.

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!