What Will the New Year Bring?

When my son was first diagnosed, one of our therapists put me in touch with another Mom who was further into their journey than we were.  It was an opportunity to connect with someone that once stood in my shoes.  They were also well into the ABA therapy program that we were looking into.   I was raw and sad.  I didn't know what to expect.  I didn't know what to ask.  I just knew I needed help and understanding from someone that had been there.

It was a nice meeting in a coffee shop.  I don't think I cried, which at the time was a huge accomplishment.  We talked about therapy.  We talked about other networks to connect with Autism families.  But one thing that that stood out to me was she wasn't sure when she should tell her son he had Autism.  He was doing well.  He was mainstreamed in school, played soccer on the weekend, and overcame a lot of his earlier struggles.   But her biggest worry at the time was explaining to her son he was different and labeled.

At the time I could not relate to that problem.  My son wasn't talking at all!  Having to explain to him what autism was seemed liked a daydream.

That was over four years ago.

Now I find myself on the other side of the coffee table.
I'm being called and asked questions about therapy, what worked for us, and to be the person that once stood in their shoes.  And I'm honestly flattered that other people are asking me the questions I had when I felt so alone.

Except our journey continues.  We are just at a different crossroads further along the path.  And now I wonder... when will I have to explain what Autism is to my son?  I think that day may be soon.

Our therapy looks so different than what it looked like when we started.  And we've started to adjust to JJ's needs.  Instead of "table times" and learning to speak, he needs more play dates and peer play.  He still struggles socially with peers.  But he is getting so much better with it.

And it makes me wonder what lies ahead.  How will middle school and high school be for him?  Will he continue to have friendships?  Will he find a sport, music or art form that he becomes passionate about?  Will he ever learn to ride a two-wheeler?  Where will he go to college (because I KNOW that will happen for him).  Will he always live with us?  Will he always want to?  What will he be when he grows up?

And guess what.... these are questions ALL parents ask themselves for their children.  Not just Autism parents.  When did we get here?   When did the tables turn?  It all seems like a blur.

So while this year comes to a close, I wonder what the New Year will bring for our boy, for our family, and selfishly, for me.  I hope that other families continue to feel comfortable to continue calling us... because one day they too will be on the other side.  And it feels good knowing I can be a small part in their journey, just as others have played a small part in ours.

Happy New Year All!

Still Just Another Autism Blog

It has been since 2014 since I last wrote a post.
Not intentional.  Just haven't felt like writing.

But thanks to Facebook, I've been receiving "memories."  My posts on that day every year previous.
I've had this blog for 4 years.  What an amazing reminder.

I remember the first time I posted.  I was so sad.  Scared.  Relieved.  Excited.  Thankful.
I posted it to Facebook and refreshed my notifications every few minutes.  Each person that reached out, liked or shared literally made me cry.
Mike came home from the store that morning to me, sitting at the kitchen table, sobbing.
"What's wrong?!"  He thought someone died.
"I wrote a blog."
I felt like I was coming out... my first official announcement of our diagnosis.  We were living with special needs.  Andwe were not alone.

Here we am, 4 years later.  9 months since the last blog post.  We still struggle.  We still cry.
But oh how far we've come.

We are in the throws of elementary school.
Therapy looks like play time.  Playdates with friends and neighbors, although supervised and sometimes regimented, are on the regular.
JJ talks, engages, asks questions, states his feelings and so much more.  He is more flexible in routine, plans and rules than ever.
New challenges have popped up along the way.  Not every day is easy.  But easier days are more frequent.
This is life.  This is normal.

We are still Just Another Autism Blog.

I am me!

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!

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. 

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.

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. 

Change is in the Air

Our little blog received a bit of love from blueridgeoutdoors.com.  And after realizing it had been since May since an updated post, I knew I was woefully behind.

But what to write about?

Our family seems to be in that in between time.  That time where you know change is going to happen soon.  You can see it coming from down the road.  There is nothing you can do to stop it.  You have to just wait and enjoy the ride.

I felt this when I was pregnant with Jonathan.  When we were getting ready for our big move to Wisconsin.  And now again.  This time.... Kindergarten.

Our son has been attending the same preschool since we have moved to this area.  He was 2 1/2 when he started.  He will be six at the end of this month.

We've been preparing for a while.  We had his IEP (Individualized Education Program) worked out with the school system in March.  We've meet teachers and educators at the school.  We talk about "big school" daily.  He knows the first day of school date.  He knows some friends that will also be there.

But he also thinks we will only be visiting Kindergarten, getting back into the blue car, and going to his current classroom at the preschool.

It is getting close to the time I need to write the official social story about "big school."

I've been purchasing the school supplies, noted off the cryptic list his school sends out. Yesterday, while at Target, everyone and their mother were in my way, down each aisle, while I tried frantically to figure out which pre-sharpened pencil brand I needed to purchase.  (Seriously, a family had three generations buying school supplies were in my way!)  I wanted to run in tears.

How can he be this big for school supplies already?  He is no longer a baby, toddler or tiny tot.  He is a school-ager.  He is tall.  He looks like a big boy, with his missing front tooth.  His clothes size no longer match his age, but rather are marked as small, medium or large.

And I worry.   I'll always worry.  It is the unknown that scares me the most.  Will be make friends?  Will other kids like him and be as patient with him as his preschool peers?  Will he be able to keep up to academic expectations?  Will he like school?  Will he like his teachers?  Will his teachers get him?  Will he always be so innocent and lovable and affectionate?

But I need to remember...this is not about me.  This is his journey.  I'm only there to gently guide.  It doesn't make it any easier, does it?

Big Boy walking our neighbor's dog.  What a good helper!

Marching into IEPs, Benefit Shows and General Play Time!

March has been busy, fun and overwhelming!
Here is a quick update on us.

THE KINDERGARTEN IEP

We had his Kindergarten IEP meeting. 
A dozen adults sitting around the table.  Half his current school therapists and teacher, the other half his next year therapists and (possible) teacher.  Plus Mike and I.
It was like an introduction... THIS IS JONATHAN.
They read his current report of how he is doing.  And then we assessed what support we could use for next year.

It went so well.  

Everyone seemed genuinely interested in helping him transition to "Big School."  We took notes on ways to help him over the summer.  We planned on what the first month of school will look like.  The teachers asked about current peers that knew him, to see if they were registered for Kindergarten yet and took notes.

It was not a fight.  It was a discussion.  It laid the ground work for our team for next year.

And I have hope and less anxiety about it.  At least for now.

BENEFIT SHOW

Jonathan and I leave for Cleveland in a few weeks for the big benefit show . 
And it has not only become a band reunion, but a FAMILY reunion.
My brother is coming from Nebraska.
My Aunt and cousins are coming from California.
My cousins are coming from Maryland.
Close friends are coming from Columbus, Wisconsin and Massachusetts.

There has been an unbelievable amount of support and excitement about this show.  And I am just floored, touched and a little overwhelmed.   

So I'm prepping now for the trip, even though it is a few weeks away.  I made my packing list, schedule the car to be checked, and am outlining Jonathan's book.

Cleveland or Bust!  I can't wait!!!

My Boys help me practice.  Farley Family Jam!

GENERAL PLAY TIME
So my buddy has been playing really well recently.  He is interested in Candyland (even though he cheats), Chutes and Ladders and Uno.  At school, we got a picture sent by the teacher of him building a car ramp with a friend.  And it was reported that they played together like that for 20 minutes.  I guess Jonathan had a hard time initiating the play, but the peer asked him, "Do you want to play with me?"  To which Jonathan replied, "Yes!"

Amazing.

Jonathan has also been going to a social skills class once a week with other kids on the Spectrum.  He has been pretty quiet the previous few weeks, but this last week he was calling the other kids by their first name and saying the scripted sentences that he leaned, "I had a fun time with you playing ball!" 

Amazing.

He continues to communicate with Mike and I more and more about what he is thinking.  Even if it comes out as small, three word sentences.
"No wash hair." 
"I go too?"
"It's Friday!  Last day of school!" - yes... my five year old has discovered the wonders of the weekend.

And he has been reading, reading, reading! 

My boy.  He amazes me!

Life Lessons for the Fall

As a child, my family moved around a bit.  The year I was in fourth grade, I went to three different elementary schools.  That is a lot for a kid.  But I think the experience of moving, attending new schools and meeting new people taught me to be adaptable.  How to learn to make friends over again.  How to adjust.  I remember being so upset at my parents for taking me away from the home and friends that I had.  But once we got to the new house, the new school, all elements fit into place. 

As I got older, I think these life skills have helped.  I pick up on things quickly.  I can make friends quickly.  I can adapt to my new surroundings quickly.

Which makes it interesting for me to see how Jonathan struggles with these things.

He lives off his routines.  He finds comfort and needs the familiarity.  He can adapt and change, but it takes a while for it all to even out...and there is usually A LOT of planning that is necessary for a smooth transition.


I guess where I'm going with this post is... he is not me.  I am not him.

It might be hard for him and easy for me.
It might be easy for him and hard for me.

We are two different individuals, even if he is a little bit of me and his Dad.  He is all Jonathan.  And that person marches to the beat of his own drum.

And in seeing this in him, I see it in others.  I am not them.  They are not me.

We all have our own struggles.  We all deal with SOMETHING.  We may not understand what each person's something is...and things that might be easy or hard for one, is not for another.

Lessons in tolerance. Acceptance in others.  Acceptance in yourself.  Keeping an open mind.

That is what I'm thinking about today.

In the meantime, the leaves are changing and it is getting cooler out.

Jonathan and I went to a picnic this afternoon, and enjoyed some time outside.

He is getting so big.
He is talking so much more.
He is developing his own personality.
He is just Jonathan. And I can't help but love this little boy.