Monthly Archives: September 2012

In Rear View – On that note

A dear friend and neighbor of mine from our California days once told me, “You answer the phone like the house is on fire and you walk around like  you are waiting on the other shoe to drop.”  My response, “Have you met me????…………it usually does!”  The shoe drops that is………amazingly, I ‘ve escaped fire.

 I don’t like to point fingers buuuuuuttttttttt….. Johnny  taught me after his first solo mall escalator ride at the age of TWO to always remain on HIGH ALERT.   Recently, I guess I must have  let my guard down.  How I know??  It has not happened in several years but HE did it, HE escaped.  This use to be a pretty regular occurence.  Aforementioned neighbor once called to ask me what Johnny was doing.  I said, “upstairs, watching t.v.”  “WRRROONNNGGGG!!! “, she said, he somehow got in my house and I found him in my guest room watching T.V.  Don’t Judge, he’s pulled this magic act on some of the most seasoned Grandma’s around.  And no……..senility had nothing to do with it.

Johnny is in a new school this year and there is NO bus available for him.  Not a bad thing.  Turns out he likes me walking him to school.  What else did I learn????  That Johnny does not like to be kept waiting…….HOW did I learn this…………when I drove to pick him up from school and passed a boy who looked amazingly like him…………….WHAT?????……….IT WAS HIM!!!  Soooo………..we returned to school………and they learned a lesson…………..DO NOT leave Johnny to his own devices……….AND his Mommy really only has a certain amount of  patience.  Losing track of my Johnny EXCEEDS my limit.  I think they took notes.

Some NOTES I took recently…………..When Johnny tells you that he thinks the toilet is overflowing………..DO NOT get distracted when everyone leaves for school………….THEY eventually come home from school AND THEY eventually FLUSH  the toilet.  Sooooo….turns out he The Captain is right, Bad News does not get better over time.  Dear Readers, make a NOTE of this.

While I am on the subject of **it flowing………….it never ceases to amaze me that THE BROTHERS can find anything to entertain themselves that has to do with bodily functions.  I felt so smug today when I saw the Little Brother playing a logic game on the computer.  What a seeker of knowledge, thought I.  Proudly, I ask………….”Little Brother, what is the goal of the puzzle?”  (I OF ALL people should know not to ask a question you don’t already know the answer to…kind of like in court)  Little Brother (equally proud) responds…………”to connect all the pipes to the toilet so the poop will go in it……..I ASKED.  Prime example why ignorance is bliss…………..NOTED.

The Big Brother, should have been taking notes the past 13 years……………cause it might help him answer some of his own questions……………like when we come home from school and the plumber leaves the dishwasher pulled out with water flowing onto the kitchen floor and fails to return the kitchen to working order……..YES, Big Brother, that might possibly mean there will be no mashed potatoes for dinner.

Oh yeah and a note I hope he took and filed away for his future………….DO NOT repeatedly ring the doorbell for your mother to hurry up to take you to baseball…………..it only makes her lock the door and move slower.   And note this…………………. I don’t care that you are bigger than me, I still am THE WINNER!!!!!  Winner, winner, chicken dinner!  But……….I love you like crazy so YOU got that going for you.

Johnny……….this note is for you………..when above mentioned plumbing catastrophes are happening and maybe just maybe Mommy is doing a little bit of yelling…………it does not calm Mommy down to tell her she might be a little tense and recommend a massage.  Proper time and place, Johnny…….proper time and place.

The past couple of weeks have been like one of those really bad tests in school……………..you know,  when you swear that the teacher made it up only to hear……………….you should’ve taken better notes…………….Never said I was a quick study……NOTED!!

Butterfly Kisses

Sweet Baby Girl Butterfly!

I am writing for an event hosted by Lori at Write Mind, Open Heart called Perfect Moment Monday.   When grief tends to be your constant companion this can be difficult.  However, I found it has given me pause to take in more of my life and shake off a bit of the numbness.  For this, I am grateful.

My perfect moment almost didn’t happen.  You see, what turned into a perfect moment was one I had at first thought of as horribly painful.  It involved my Sweet Baby Girl, Madeline, and butterflies.

For a second year in a row we received an invitation for a Butterfly Memorial, hosted by the Pediatric Rehab Hospital, where Madeline had spent a month as an inpatient and several months, several days a week for outpatient therapy.

I have a love/hate relationship with this place.  The fact that it is there and the work they do I LOVE, the fact that My Baby Girl had to be there, I hate……………..trumped only by the Raw Pain that we are now on a list to attend a ceremony to honor the life of Madeline and the other Precious Souls who are no longer with us.

This is what I think of your stinking therapy!

Madeline at one of her many afternoons at HSC.

We attended last year, as a family, and it was very difficult.  I had not darkened the doorstep of this place since Madeline’s last therapy visit the previous year. Walking through those doors a year ago almost brought me to my knees.  I sobbed uncontrollably when my senses were overloaded with the smell, sound, faces and numerous memories and emotions that rushed over me of our time there.  However, to hear Madeline’s name and be referred to as “Madeline’s Mom was music to my ears.

Fast forward………….We received the invitation again this year.  The week leading up to the event was difficult.   As it so happens, other committments were keeping the rest of my family from being able to attend.  My memories of the previous year started to creep in and fill me with dread.  Did I want to experience those emotions again?  Did I want to do that ever distinctive drive into D.C. and take that particular trip down memory lane, where the snapshots that fill the road rip open all of the wounds.  Renew the questions, why her, God?  Why did you need her?  If only given the chance God, I would have done this drive forever, just to have that Sweet Baby Girl with us and delight in her grace.

In the end, I knew I must go.  The fear of a missed opportunity had a stronger hold on me than  fearing  more pain and renewed, raw grief.  I also knew I would have to go without my family.  Our boys’ grief journey has been so very fragile that I could not expect them to go and experience new pain.  But I wondered if I could do it alone?  My body (and maybe God) were telling me, “NO”, THAT would be too much, in your weakness you must find the strength to reach out.”

So, I did.  Sunday morning I contacted my dear friend and asked if she could/would attend this ceremony with me.  And she did, along with her 10 year old daughter.  Although the drive did put me on edge, I shared a couple of memories of all of my trips to appointments.  When we entered the doors, this time, instead of being brought to my knees, I felt warmth and gratitude.  Grateful that this place existed and for the care and love they gave Our Madeline.  I remembered the laughs, yes, I said laughs, we would have during therapy watching Madelines expressions and her tough and fiesty spirit, always reminding us who was really in control.

It was a beautiful crisp day when we all gathered in the butterfly garden for the memorial.  They gave us all the opportunity to share about our babies.  This time through a shaky voice, I was able to talk about Our Madeline and how she is loved, adored and missed everyday.  I brought her picture which I mandated be admired.  Not hard to do.  This time the raw pain received a soothing balm when I got to speak her name, share her photo.  We each received a butterfly.  Madeline’s name was called and the three of us released our Madeline Butterflies to fly free.  I was so touched to have these dear friends experience this with me.  What a sight to behold.    This time as the Butterflies flew, I saw their beauty………….I saw my Madeline.   I saw her free from her earthly limitations and with the wings of an Angel.

In one perfect moment, I think I even felt a warm  hug …………………..and Butterfly Kisses.

In Rear View – All Secure??!!

As I sat down to write my “Rear View” and I am drawing a blank.  If I was saavvy enough, (or not so lazy), I would wire The Brothers up with microphones and call it, “Life with Johnny – Live.”  That way you wouldn’t have to miss a moment.  Also, you might start to feel my fatigue and start bringing me meals.  Now that’s what I’m talkin about.   Or you would figure out I am a card short of a full house and someone might bring me a comfy special jacket to wear.  Naaahhhh, and miss all my life has to offer, NEVER,  okay…………….wellll, maybe.

The highlight of the week was Daddy’s (The Captain) promotion.  After 20 plus years of service in the Navy, he pinned on Captain.  It was a proud and touching moment for all of us.  Weellll, except Johnny……………. who was disappointed when he learned Daddy was “only a Captain” and “NOT an Admiral.”  We will tell Daddy to work harder, Johnny.  Here is Johnny after learning “the news.”

What??  He's not an Admiral!

Trying to contain his excitement!

The ceremony was in a really, really cool building that required “special” permission to enter.  Memo to Johnny…………… security is not amused when you play tug of war with your I.D. card.  MOST people just hand it over.  Johnny is NOT most people.  He, is, AFTER ALL, Johnny for a reason.

Another distraction, the building had a bowling alley.  Before I knew what was happening (a familiar theme) Johnny and The Little Brother were in search of an 8 pound ball and bumper guards.  No fun to be at a Daddy’s ceremony (in a really cool place)  if there is bowling just an elevator ride away.  Thank goodness there were cookies or they might have grabbed a cab…………..or a limo.

Since being trapped at a ceremony wasn’t enough fun for him, we followed up with a full day at Big Brother’s baseball game.  Big Brother playing baseball is the gift that just keeps giving…………..Johnny a fit.  And since last weeks game involved 2 extra hours in the parking lot after the game due to a flat tire, he was not full of warm fuzzies to return to the scene of the crime.  Insult to injury…………………..NO snack bar.  NACHOS are generally the only reason he makes it through.  Now Mommy had to pack a cooler AND a big brown grocery sack like we couldn’t be away from our pantry for more than an hour.  Good thing I got numb to being stared at a LONG TIME AGO!!

Here is Johnny enjoying yet another one of his Brother’s baseball games……………………GO TEAM!.  Weeelllllll, that is what he is thinking……………….I’m positive………………….you be the Judge……..

Go Team!!!

Johnny does like to use his time at these events to ponder lifes questions.  And they are better answered bellowed at your brother in the dug out like this………………………….

“HEY, BIG BROTHER, DOES YOUR SCOUT TROOP TAKE A TRANQUILIZER GUN CAMPING FOR WHEN YOU ARE ATTACKED BY BEARS???”

Don’t think he did the batter any favors.

Along for all the fun this weekend was The Grandma and Grandpa.  Johnny was excited to have them and didn’t want them to leave.  Or as he said, “Grandma, why don’t you stick around till Halloween so Grandpa can dress up like Jabba the Hut?”  Touching………………….huh?

Johnny and I drove Grandma and Grandpa to the airport today.  Johnny asked, “HEY! why don’t we go on a plane anymore?!”

Me – Weeeelllll, because it costs A LOT of money!

Grandma – Johnny, you just tell me when you want to come and we will put you on a plane.

Johnny – Said nothing, but EYES got really, really big.

I don’t know if those eyes were in disbelief that he might have scored an airplane trip……………………… OR he was already thinking all the fun he was going to have with securityIf this happens……………..stay tuned to your National News.

Cause that’s how Johnny “rolls”. ……………..regardless of the view point.………..or security.

In Rear View – It’s Possible

Another week down.  My plan is to give a condensed glimpse of my “Rear View” each week.  I assumed this would be a very doable plan……………and, well, you know what they say when you assume.

The problem does not lie in not having anything to write about (I wish).  O’Contrare…………….as  adventures in autism and the  general chaotic go…………let’s just say……….NO shortage here.  The problem lies in relying on my own feeble mind that is trying to organize my brain to hold on to so much, that thoughts and ideas fall out as soon as they make it in.  Thus, Mama is generally running on negative brainpower…………….or truth be told, I feed off of the frenetic energy that is a one dependable constant.  So, Mama fueled by Chaos + (-) brainpower = weeeelllll, Sciences and math were never really my thing so for our purposes let’s just say……………Mama is gone and “lost” her mind.

Weellll, I’ll just let you read and you be the judge.

Johnny's First Day

Brotherly Motto – Never let your Guard Down!

A big highlight………Johnny started at a new school this week.  I spent a great deal of energy worrying about him in a new school and not knowing anyone.  Wondering if he will make friends?  Will there be the classmate with the mothering instinct to take him under her wing (that is usually the case)

Johnny’s report thus far is that the kids are nice.  His exact description……

Me – Johnny, are the kids in your class nice?

Johnny – (zero enthusiasm) Yeah.

Me – Who do you sit by?

Johnny – I don’t know his name.  But I asked him to be quiet and stop annoying me.

Guess I should have spent more time on his people skills……….

On his teachers……………..

Me – How is your teacher?

Johnny – Nice.

(See where this is going)

Me – Have you talked to her?

Johnny – Yeah.  She tried to talk to me while I was eating lunch.  I told her I just wanted to eat.

Guess Johnny isn’t as worried about the friend thing as I am.

One thing Johnny is pretty excited about this week is a new Lego toy.  He  has put in his mind (cause things never fall out of his brain)  that if he is good at school he will earn a new toy.  His idea NOT mine.  He shared this idea with his teacher….

Johnny – I told my teacher I could maybe get a toy if I am good at school.

Me – Oh yeah, what did she say?

Johnny – She said it’s possible.  Soooo, what do you think?

Me -(Thinking, NO)  I don’t know Johnny.  It’s POSSIBLE.

And with these words I am in LOVE with his new teacher.  I never have to say NO to him again.  It’s Possible, is like the new Definite Maybe.  Could mean yes, could mean no…………and right now, Johnny is a little confused what I mean by this.  He thinks it has a positive tone to it, though.  So it has not deterred him from his never ending quest for a lego set.  Whenever he asks me for something, he replies, it’s possible, right, Mommy?  I suppose, Johnny, it’s possible.  See what I mean?

Crazy making chaos, it’s like the gift that keeps giving.

To do his part to keep the crazy train going, The Big Brother announced his Science Fair project.  Let’s just say it involves purchasing those pesky insects most pay money to get rid of.  But he did more than that to contribute to the train ride.

See, Big Brother suffers from a common condition of submitting a form to be completed and signed by Mom as we are walking out the door.  This time I said NO!!!  Stop the INSANITY!  And it was the band form.  And it was Band Day!  As we walk out the door I see his instrument lying in the living room.

Me – Get your Trombone!

Big Brother – I can’t.

Me – What do you mean, You Can’t?

Big Brother – Well, you didn’t fill out the form, so technically I’m not in band.

And Yes, I heard the familiar White Noise in my head.  He should consider himself lucky that I did not take his trombone and turn it into a nice, shiny necklace, technically.  Hey, it’s still possible.

The Little Brother is doing his part on the train ride.  He already stayed home from school, sick…….intestinal distress.  Always one to believe in his own popularity, he said, “Mommy, aren’t you glad I stayed home?  That way you don’t have to be alone?”  Uuuhhhh, I’ll get back to you on that………….just as soon as I clean up the overflowing toilet.  Nothing says quality time like intestinal distress and plumbing problems.

I was only going to give the Monday through Friday highlights, BUT as LUCK would have it, the weekend did not disappoint…….

Now Saturday, how do I even describe.  I can’t.  Soooo, I will just dive in.

Saturday morning The Captain took Big Brother to a car wash fundraiser and baseball game.  Mommy took Little Brother around the neighborhood selling popcorn for scouts.  Johnny stayed home and made more lists of Legos I could possibly by him.

Saturday afternoon we met up at Big Brother’s baseball game.  After game, head to parking lot.  At last, Mommy is going to the mall for some alone time.  Get to the parking lot, The Captain’s car has a flat tire.  He sends me on my way and sets to changing the tire.  I just darkened the door of the mall and phone rings.  Must go rescue boys, the spare is no good.  Back I go, guess what?  No shopping.  Take boys home.  Walk in door.  Boom, big STORM.  Boom again, NO POWER!  YEAH!

My sweet boys take a cross into the basement.  The Little Brother says he’s going to pray for everyone’s safety in the storm.  He was very nervous about the storm.  Johnny was found praying to…….for electricity.  Johnny was more concerned what he was going to do with no TV.  And like I said, Johnny NEVER FORGETS.  His thoughts are in his brain like a steal trap……….

Johnny – WHAT AM I GOING TO DO WITH NO POWER!!!  I’M BORED!!!!!!!  THIS IS AWFUL!!!!!!! (and NO, I’m not exagerating.)

Gets Better…

Johnny – See, IF YOU HAD BOUGHT ME THOSE LEGO TOYS I TOLD YOU ABOUT AFTER SCHOOL WE WOULDN’T HAVE THIS PROBLEM, I WOULD NOT BE BORED.  I WOULD HAVE NEW LEGOS!!!

So much for outsmarting Johnny.  I should know better.  It isn’t my first day on this job!

Guess the remaining question………….WILL I lose my mind?? 

Hey.  It’s possible……

Looking Back

I’m Fine…….and you?

Fifth Grade

Ready to Rule the School.

Autism.  I have not written much about this side of Johnny.  I do not like to think of Autism as who he is but it is part of him, it is one thing that makes him so unique and not merely a statistic.  A friend once said his diagnosis should be quirky.  Johnny is his OWN man.  He hears his own drummer, for sure.  If you have had the pleasure of meeting him, you know what I mean.

Due in large part to early intervention and absolutely wonderful, compassionate, caring teachers, WITH an incredible sense of humor, Johnny is considered high functioning.  People that just meet him have stated, “he seems fine to me, how Autistic is he?”  To which I like to answer, “Just enough.”  Just enough to keep life interesting and everyone on their toes.  But I also want to add.. if you only knew.  If you only knew how far he has come.  You are able to ask that question because of the long path we have walked.

Johnny started school this week.  A new year in a new school.  He is in Fifth grade now and I have to take a moment to count how many schools he has attended.  Johnny started school (pretty much full time) before he was three.  His first school bus ride was in diapers.  He was fine but I think I cried like a baby in diapers.  It just did not seem right to put this Little Guy, in diapers, on a bus.  He  rode the “special” bus.  Anyone who has put their child on this bus knows the fear and heartache.  It was not an easy decision.  But as decisions go, it has ultimately been one of the best decisions we have ever made.

I just took my moment and calculated… EIGHT… he has now attend EIGHT schools.   A funny thing with Autism and other Spectrum Disorders is that routine and schedules are generally a “really big deal” for these kiddos.  Knowing what to expect can keep his anxiety at a low ceiling instead of a through the roof  level, which can be heart breaking to watch.  However, not all schools are equipped with the appropriate programs, which has made it necessary for Johnny to attend a new school each year for a few years.  This was mostly the case when he was of the pre-school age.  Add to that the fact that we are a Military Family and the numbers go up.

Sending him off this year to Fifth Grade in a new school was nerve-wracking… for Mommy… he seemed fine.  His biggest concern…when was lunch?..and did I remember his lunch money?  Why was I nervous?  Weeellllll, let me count the ways.  Like I said, this is school Number Eight.  

Fifth grade triggered something in me.   As I was walking him to school it struck me, WOW!!! FIFTH GRADE, IN THE “REGULAR” CLASSROOM!  I remember when I didn’t think this would ever be his reality.  I couldn’t imagine him functioning in the “regular” classroom.

We have come a LONG, LONG WAY  from the pre-school days of pacing and running circles around while constantly humming to soothe himself.   Lunch time used to mean sitting in a semi-circle with a teacher at a table to eat and learn to tolerate new foods.  Going to any assembly required headphones to block out all of the noise and extra stimulation, if we could get him there at all (actually, headphone are always a good thing.) On good days he would go into the “regular” classroom with an aide.  The preferred activity at recess was sitting alone in the sandbox, watching sand fall through his fingers.  Notes home read like this…”Johnny is wearing a pair of “borrowed” socks.  His got wet because we found him standing in the toilet.  Please talk to him about this.”  NOT even making that up.  There are many similar notes.  I kept the “communication” notebooks from every class.  Actually, they are somewhat amusing.  I remember then we had to laugh or we definitely would have cried.  Proud to announce, that is the LAST time he stood in the toilet at school.  He’s moved on to other behaviors, like making sure the teacher sticks to her schedule, literally.  Lunch is 12:00 NOT 12:01.

As the parent of a child with Autism (no matter where on the spectrum) you constantly worry about their future and ability to be independent.  I spent A LOT of time on this worry.  One of his first Pre-school teachers said it best, “Johnny is going to be fine.  He might not be a salesman, he might be the guy content to work quietly by himself but HE is going to be JUST FINE.”  It was Mommy that needed the work…I think.

In those pre-school and early elementary years so much seemed so overwhelming.  And I’m not talking about for Johnny!  Learning to manage all these behaviors, emotions and needs was all-encompassing.  Like for all children.  We have had several years where it seemed that we would have a perpetual toddler.   Part of me wanted to think, who cares, let him wear headphones and sit alone in the sandbox, he’s content.  Who cares if he plays with Thomas the Train in high school.  He’s happy.   But…we knew for his success and independence in life he (and we) were going to have to experience a lot of uncomfortable moments (again, like everyone).  AND we most certainly have.  There were a lot of tears of frustration in those days (Johnny and Mommy).  It was not if Mama ain’t happy, it was if Johnny ain’t happy, ain’t nobody happy.  Actually, it is still a little like that.

Fast forward to Fifth Grade…No bus..we walked to school, WITH no complaining, thank you very much.   Johnny  isn’t big on physical exertion.  He took notebooks in his backpack, NOT diapers.  No lectures were given on playing in the toilet, just reminders about turning in our lunch money and medical forms.  He was walking into the “regular” classroom with some assistance from an aid.  His back pack was plain black, NOT Thomas the Train (which I kind of miss).  HE was telling ME his plan for doing his homework right after school.  I wasn’t having to show him a picture schedule of what he was going to do.  Instead of a bus aide walking him to the school door or Mommy holding his hand, he walked solo on the path… turned around, “Bye Mom, see ya.”  And I heard that Pre-School teacher’s voice in my head, he’s fine, he is going to be JUST Fine.

As for me… weeellll, Mommy is getting better EVERY YEAR!

I’m OK, Mommy, and You?