Monday, October 27, 2014

An Apology to anyone who stayed at our Holiday Inn Express

This is an apology letter to anyone we may have woken up between the hours of 4 and 5am this morning at the Holiday Inn Express we stayed at last night.
No one was dying.
No one was drunk.
No one was being beaten.
It was just our son being dragged to the car to catch our 6:30am flight back home.

Let me back up a bit.

We took a long weekend trip to upstate NY for celebrate my Mother-in-law's 80th birthday.  It was to be a very low key weekend, but did require us to take 2 airplanes to get there with limited  flights.  So we did what we always do... prep for the worst and hope for the best.  We wrote a social story about the trip.  Prepped the boy as best we could, and off we went!  Mike and I were both a bit leery due to our son's recent behavior.  Meltdowns, tantrum and overall non-compliance has been the norm the past few weeks.  But things were settling down, so maybe we would get lucky.

The trip there was perfect.  Flights on time, good kid that listened well, bags retrieved from being checked-in.  All was well.  JJ was so excited to be in New York, He was so happy to see his Grandma, Aunt and Uncle.  He even loved our rental car and hotel room.  It was a very relaxing few days.

On Sunday night, we did cake and candles for Grandma.   Her birthday is actually on Wednesday, but we were not going to be there at that time.  This was not overlooked by JJ.   He FLIPPED OUT when we sang "Happy Birthday" because it wasn't really Grandma's birthday.  And he wanted to sing a different birthday song, but no one knew the song he wanted to sing. We knew we were treading into dangerous territory, so we hurried ourselves up and got back to the hotel room to get some sleep.

He knew we had to get up early.  He was telling us all weekend that we would leave at 4:45 and that we would wake up at 3.  It was in the book.

No dice.  4am rolled around.  Mike and I were getting our stuff together.  JJ would not move from sleep.  Like a sleeping Giant, if you will.  We cuddled him, and gave him kisses.  Rubbed his back and talked smoothly to pry him from sleep.
All we got was "No!  I want to sleep all day.  We will go home tomorrow."
We set the timer to get him moving into his daily morning routine.
We begged.
We pleaded.
We bribed.
We wrote more books.
We negotiated a 4:46 departure time.
We did everything we could.  I even told him he could go to the airport in just his underwear.

So you see, we were getting no where.  I had to pick him up.  It was 4:47 after-all!

He screamed like bloody murder.  He wanted his clothes on.  We put them on.  He wanted different pants.  All the pants were already packed away and in the car.  His negotiating was not getting us anywhere.

So I grabbed him, hoisted him up as far as I could.  Mike scooped everything up from the room.  And JJ just screamed as we went down the hallway, into the elevator, down the elevator and into the lobby.

He screamed like I was killing him; taking out his toe nails one by one.   But we just had to do it.  We had to leave.

Thankfully the front desk guy was so nice.  He told Mike not to worry, the hotel was not that full, and he had a little one at home too.  Mike asked, "With Autism?"  The guy said, "No.  But I know how kids can be."

We got him to calm down in the lobby, changed his pants, and made our way.  He walked out on his own accord to the car...no need to carry him.  In the dark on the drive to the airport, I held his hand... me in the front seat, him in the back.  He whimpered.  He said, "I am sad.  I was crying."  And then he relaxed, looked out the window and said, "It is dark.  Soon the sun will be peaking up!"

At this point, we knew we were OK.  Our boy was back from him tantrum and was so much better.
That's when I cried.

Not because it sucked (because it did.)
Not because I was exhausted (because I was).
I cried because he is so tortured, and there is nothing I could do in the situation but to physically move him.

He has made so so so much progress in the past few years, but it was one of those times that remind us that yes, he has Autism.  And it is not easy.

And we will never, ever, ever book a 6:30am flight again.

PS.  We made it home without further incident.  We are so glad we all made it home in one piece. Now off to schedule that massage appointment.

PPS.  If you are reading this, and we did wake you up, please know a donation is being made to an Autism charity in your name. And we are really sorry!

Monday, September 22, 2014

Seperation Anxiety and it is Breaking My Heart

I’m not even really sure what is wrong. 
We’ve been starting our days fine. The normal routine of things.  He’s been asking to take showers and dry his hair with the hairdryer every morning.  He is imitating me.  Even going so far as to pretend to use the curling iron. 

But when we get to school, he gets very quiet and very sad.  He puts on a brave face by looking down and hiding under his hat.  His eyes get wide and he fakes a smile.  He looks like he is going to erupt into tears at any second. 

He asks to go to the bathroom.  He cries there. 

He can’t tell me why he is sad. 
Is it a bully?
Is someone being mean to him?
Is he not feeling well?
Does he not like a teacher he is working with?
Is he just having some separation anxiety?
Is he upset because he is not in control?

I don’t know what the answer is.  No one seems to be able to get an answer out of him. 
But I can’t keep leaving him like this. 

It is breaking my heart.

And yet, once he gets on with his day, he is fine again. 
Something is going on.  I don’t like it. 

I’ve been dropping him off at various activities and schools since he was two.  Why now, in first grade is he having such problems?
And he knows it makes me sad.   He says he wants to do better.  We started a points chart to reinforce him. 

I don’t know if it will work.  We just need to move past this phase.  And hope that is there really is something wrong, he can tell me. 



Monday, September 1, 2014

Eve of a New School Year


You start a new school year tomorrow, buddy.

You did great last year in Kindergarten.  You had some amazing teachers and supporters.  You made people melt with your smile and personality.  You showed others what a sweet and loving boy you are.
This summer was challenging, but you overcame.  New routines, old therapists leaving our team, T-Ball, tornado warnings, new jobs, a new found love of fuse beads, legos, legos and more legos!  And you were such a good and brave boy when we went to say good-bye to Grandpa Jim.

You are silly, funny, hilarious and fun-loving.  I hope this is something you never loose.

As a rainbow shines over your elementary school the day before school starts (literally), my wish for you is you continue being you.... my silly, wonderful, smiley boy.

Have a great first day at first grade!  So excited for a wonderful year!

Sunday, May 11, 2014

Mother's Day

"I don't know how you do it."
"It must be so hard."
"You have an extra hard job."
"It takes a special person."
"G-d doesn't give us more then we can handle."

When I hear these comments, I know they are meant with love and respect.  I know this.

But they can be said about any mother.  Not just me.
I can say the same comments to the Mom's out there that are potty training their toddlers.  Or the ones who have extra, super, outgoing kids.  Or those who have kids who might be a little more shy then others.  Those dealing with newborns or teenagers.  Mothers of all kinds.

My friend Jody used to say, "Every kid has something."  Ours happens to be Autism.

Autism is a part of our lives, yes.  But so is work, music, exercise, laughter, love, back pain, families that live far away, food, and more.

I'm Jonathan's Mom.  And yes, when we received an Autism Spectrum Diagnosis over three years ago, I was very sad.  But Mike and I both have unconsciously decided to roll with it.  Not let it define us.  Jonathan has taught me to be a flexible Mom. To not expect anything, and enjoy every little thing.  To laugh at all the funny things.  To stop and smell the roses.  To listen with open ears and love with an open heart.  To understand that everyone has something that makes them different.    He is my greatest gift, one that give back to me everyday.

And I know I'm not alone in how I feel about being a Mother.

Just like Autism does not define my son, it does not define me.




<3 <3 <3 

Sunday, February 9, 2014

Time Keeps on Ticking....

He is obsessed with calendars.
Obsessed.
He has my 2013 planner, a 2013-2014 planner I bought for him, my current 2014 planner (that he steals from my purse everyday), and a 2014 Mickey Mouse calendar on his bed.  He sleeps with them every night.

His favorite app on his iPad (next to google maps) is the calendar.  He can flip from year to year.  I glanced over and saw him all the way up to 6250. Ya know, the year six thousand two hundred fifty.  Right around the corner.

Recently he said, "January is going on a trip.  And January will be back in 2015."

He spent a morning with me at work a few weeks ago.  He grabbed my desk calendar and wrote in the days that were missing at the beginning and ending of each month to fill in the weeks (you know from the previous and upcoming months).  He filled the days in for each month.  I love that I can look at that everyday and see a part of him when I'm at work.


I wonder how he sees the calendar.  I wonder what it is about the calendar that bring him so much joy and comfort.

At least I'll never have to worry about knowing what day it is.  He'll always be sure to let me know.

The minute it turned February, he yelled with glee, "It's February!  Happy Valentine's Day, Mommy!"

He filled out Valentine's for his classmates today.  Writing their names in the "to" section and then his name in the "from" section.  He finished 19 for his classmates, and I didn't have to help once.

He is learning so much at school.  He is getting so tall.  He is becoming such a mischievous, independent, and a rambunctious little boy.

If only that calendar could go backwards sometimes.
I'll even take staying where it is for a bit longer too.
It all moves so fast sometimes.

Sunday, December 15, 2013

How Do We Keep Going?

So I really shouldn't check my Facebook first thing in the morning, before my coffee, before I'm upright. 

That was apparent this week: 
I learned of a childhood friend who's husband is dying, and she will soon have to raise two young children on her own. 
I was reminded of the year anniversary of Sandy Hook. 
There was another school shooting.
A "Superman" in the body of a sick 9 year old boy that left us all too soon. 
It made me wonder why it was even worth getting out of bed?

Then I will hear these words from the other room, "Can I go potty?"

And all I can think next is, I love hearing him say full sentences.  

Better get up and make the coffee and start this day.

And I'll remember to not pick up my iPhone / Facebook until after I get a big hug from my sweet six-year old.


Sunday, December 1, 2013

A Headache of a Different Kind

The other day when putting my boy to bed, I asked him to stop working on a puzzle so we could go upstairs and put his jammies on.  He objected a bit, as he does every night.  But I reassured him he can finish tomorrow. 

Up the stairs we went.  We finished out nightime routine of washing up, brushing teeth, putting on jammies and reading two books.  As we were moving on to the final step before turning on music and going to sleep, which is getting a small cup of water, I turned around.  He was in tears.  Sudden.  Abrupt.  Makes your heart hurt, tears. 

I asked him what was wrong.  He couldn't answer.  Between the hyperventilating, all he could say was, "Nap." Nap is his description for "I'm sad and need a break."  So I took him back to his room and hugged him as tight as I could.  He was sad about something.  I couldn't figure it out. 

When he settled down a bit, I asked him again why he was sad. 
"I'm sad."

I know.  Is it school?  Is it friends?  Is it Mommy and Daddy?

"No.  Take a nap."

Tears again.

Mike came in to see what was up. 
"Jonathan, does your belly hurt?  Does your head hurt?"
Jonathan pointed to his head as the area that was causing him the discomfort. 
But this cry was not one of pain.  It was one of being sad.  He would stop crying, and then start again a few minutes later. 

Jonathan wanted me to write him a book.  He dictated it to me.  It was called "Jonathan is Sad."
It didn't provide much info, except "I crying.  I take a nap.  Mommy does breathing.  We will do yoga tomorrow.  The end."

So I tried again after about a half hour of on and off crying. 
"Buddy, what hurts?"
He pointed to his head.  Something in his head hurt. 
Could it be his brain?  Like something was left un-done?

"Buddy, do you want to go downstairs and finish your puzzle?"
"YES!"

We went downstairs and he finished the puzzle.  He looked at his finished piece, smiled and said, "OK.  Now we have water and go to bed."

His head hurt, because something was left undone. 
And it broke my heart. 
Little things, like an unfinished puzzle, can weigh so heavy on him. 
Sometimes we need to slow down; listen to hear what he is trying to tell us.