The Reason for This Latest Hiatus

It has been a while.  I know.
The last time I took a hiatus from the blog, our family was in crisis mode.  We were dealing and managing and surviving the murky waters of school, therapy, work, back pain, etc sprinkled with dealing with Autism.  And I just wasn't it in the mood to lay it all out there. 

But this time?  This hiatus is due to the other end of the spectrum.  We're doing well.  We're doing very well.  School has been amazing for our buddy....with new and exciting participation from him everyday.  Therapy has been going great, and we have an awesome and stable team.  Work has been busy for the adults  And we're managing the back pain.  So again....I just wasn't in the mood to write.  I was enjoying myself.  We've been living life and cherishing these great moments.

I've realized that we just need to cherish the good moments and survive the challenging ones.

And while I would like to write to catch you up on how things have been going here...a fun Halloween, A great Thanksgiving with a visit from Uncle Joey, looking forward to the Holidays, Jonathan writing his own social stories, his reading and writing, and playing games like Hangman and Hide and Seek.... I just can't.

Like many of you, my heart is broken for Newtown, CT.  It has been all I can think about the last few days.  Those 20 babies will forever be OUR children.  OUR community.  OUR teachers.  And the reality that this horrific act could happen anywhere. 

I read this amazingly written blog post by another Mommy Blogger.  It was so well written and hits so close to home for our family...as well as the other families in the Autism / Special Needs community. 
Please read this. 
http://profmomesq.wordpress.com/2012/12/15/one-truth-about-autism-and-the-sandy-hook-elementary-tragedy/

I also read this blog post as well, and it touched me just as much.
http://thebluereview.org/i-am-adam-lanzas-mother/

All of us have a lot to say.  All of us are grieving.  All of us want answers.
And all I can do is hug my child. 
Which is what I think I'm going to go do right now.

"Go Downstairs." Huh??

Most kids that are Jonathan's age talk about things that happened to them in the past.  Sometimes that past was 5 minutes before....but they talk about it.
"Mom!  Remember that time we went to the zoo?"
"Mom! Remember when the cat ate the bacon?"
Things like that.

Jonathan can't do that. He can't tell us the things he is thinking about or remembering. 

But if he really wants to do something or go somewhere he's been before, he tries hard to have us recreate what we did. 

Yesterday he came up to me with a piece of paper in his hand.
"Mommy.  List!"

OK.  So I got a pen and sat down with him.  And he told me what I should write.
"Number one.  Go Potty.
Number two.  Put on shoes and socks.
Number three.  Go blue car.
Number four.  Go downstairs.
Number five. Read "Pajama Time"
Number six.  Read "Snuggle Puppy."
Number seven.  Read "Barnyard Dance."
Number eight. Go blue car.
Number nine. Go home!"

OK.  So I looked at this list. And realized....I have no idea what he's talking about.
I knew he didn't mean downstairs at our house, since we have to travel in blue car.
And we have all those books. 
But I was at a loss. 

Maybe he meant going to eat at the Draft House, around the corner from us.  Last time we went, we brought those books.  And we sat in the downstairs area. 

So we got in the car and drove.  But when we made the left to go there, Jonathan started yelling, "Go right! Turn around!  Go Downstairs!"

So I thought....humm...we went to Barnes and Noble once.  They have a downstairs area.  Is that what he meant?  So I asked, "Do you want to go to the book store?"  He responded, "Go book store!" 

So we turned around and started driving.  Jonathan decided to direct us..."Go right.  Go left. Go straight to signs.  Two more lights."  His directions were taking us no where near the book store. And honestly, I still had no idea where he was taking us. 

So I drove us in the most round about way to the book store.  And he was content....until we got to the book store. 

"Jonathan!  We're here!"  I said when we pulled into a parking spot. 

"No,  go downstairs. No book store."

So I said, "Can you tell me about downstairs?"

This was a type of question they've been working on in therapy...having him tell them descriptions about objects.  I thought I'd give it a try.

So he said "It had a cover, and pages and you read it.  What is it?  A book!"

We were getting no where. 

Now, normally I wouldn't engage this type of mystery for so long.  But he was so adamant in what he wanted.  He knew what he was thinking.  And it broke my heart that he could not tell me more.  I called Mike (who was making dinner during our mystery drive).  He was as equally stumped and sad as I was.

So we drove home.  Jonathan yelled about going downstairs.  I told him we would have to try again another day.  It was getting dark.  He as satisfied with that answer.

This morning, he said "We go downstairs and read books?"

I still can't think of where he wants to go.  But we must have had a really good time when we were there.

And hey, he keeps trying.  And that is progress.

In the meantime, he has focused on something else to keep him occupied.  Like this new numbers game.

And we just keep trying to think of what downstairs really means. 

Weekend with Hamlet

This weekend was one that was a bit different for us.  Mike left for Kansas City on Thursday for a music/football weekend with a good friend.   So I was solo-Mommin' it.

When I picked Jonathan on Friday, there was a little bag in his cubby.  In the bag was a pink pig, a book and a journal.  There was a note explaining that this was Hamlet. He visits each child in the classroom at some point.  And in the journal, we could write what we did, draw pictures of what we did, etc.

Jonathan and I had such a good time with Hamlet, even though we really missed Daddy.  But I thought I would take the opportunity to share our weekend with you.

Friday
After therapy, Jonathan and I went to an Art Show.  Some of my co-workers were showing their pieces, and we took the opportunity to go to the event!

Everyone buckles up for safety!

Hamlet enjoying the art.

We also read to Hamlet.  The bag came with his favorite book.  So Jonathan shared one of his favorites.  He also wanted to show off his iPad skills.

Loving on some Hamlet

Saturday

On Saturday morning, we took our weekly trip to Target.

Again, buckle up for safety!  Especially with JJ driving

Mom!  You think Hamlet would like some Cheez-Its?

Then, for a special treat! We went to Sutters Ridge, which is a pumpkin patch, apple orchard and corn maze.  We met up with Jonathan's friend and classmate, Thorley and his family.  Thorley, Jonathan and Hamlet enjoyed playing in the kid's area.  We also went to the corn maze and had a ton of fun!

JJ and H at the pumpkin "badger" (what JJ called it)

On top of a big 'ol barrel of hay

Ridin'

JJ and Thorley on the way to the cornmaze. 

In the maze!

Hamlet looking around.  We were lost.

Thorley and Hamlet found the picture of the piggy

Friends.  (This picture makes me tear up.)  Thorley is such a good friend!

Later on, we hung out at home.  We played outside, a little more iPad, and then just crashed.

Hanging on the stoop

Hamlet checking out all the aps

Everyone was tuckered out from the day.  Buddies gotta cuddle.

Sunday
Hamlet accompanied Jonathan to my Weight Watchers meeting. Hamlet did not weigh in. (please note, no picture available). 

He did help us make cookies when we got home later.  Also, our neighbor Elena stopped over on her way to her special birthday party!  We had to get a picture with the birthday girl.

Elena and Hamlet rockin' out!

 Now we're waiting for Daddy to get home.  Jonathan is very excited for his arrival.  He keeps saying, "Daddy goes on airplane, then red car, then come home!" 

In the meantime, I've got to keep an eye on these boys.  You never know what they will get into....

No, Hamlet!  No!  That is just WRONG!

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.
   

Just Talkin'

I am a gusher
A gloater.  A gabber.  A yapper.  A blabber-mouth.  A tell-all open book.
My favorite subject? 
My son.
I talk about him to people that want to hear.  I talk about him to people that don't want to hear...and talk about him anyway. 
I show pictures.  Play videos.  Tell funny stories.
And for the most part, people smile and nod and tolerate me.
However...
Sometimes I'm just talking about my son.
Not my AUTISTIC son. 
Just my funny, quirky, hilarious, sweet son.

He will always have that autistic label, won't he?  It will follow him around like the period at the end of a sentence.

I remember reading in the newspaper about a horribly tragic death of a woman I knew.  In the news stories that followed, the paper not only listed that she left behind two young daughters, but two, young, autistic daughters.  It still stays with me.  Autistic daughters.   Not just two children that lost their mother in an unspeakable way.  But two children with an adjective attached.

And I've also come to realize that by me talking about my son can make others feel uncomfortable.
Seriously.
I think there are people that don't want to hear anything about him, because it makes them uncomfortable to know he may have challenges that are not typical of "regular" kids. 

So when I talk, and show pictures, and play videos, and gloat and gab, I sometimes wonder...are people listening to me talk about my son?  Or are they only hearing me talk about my autistic son?

Nine times out of ten...I'm not even thinking of the "A" word.

Tell me about a....

Me: Tell me about a car. 
Jonathan: It has four wheels, a window and you drive it!

In therapy, Jonathan has been working on conversations where he is expected for give full sentance answers.  So far, all have been scripted.  The therapist will show him a picture, and ask the question, "Tell me about a ..."  So for a car, they will tell him the answer, and he will repeat it back.  Eventually he will not need the prompt of them telling him, and he can answer himself.

The goal - eventually he will notice things about objects without needing the of the script/answers from the therapists.

So this morning, while snuggling together in bed, Pepper, our cat, walked over. 

Me: Jonathan.  Tell me about a cat. 
Jonathan: It has ear, eyes, whiskers and you pet it. 

Nice!  So I thought I would see if he could respond to a question that he didn't know.

Me: Jonathan.  Tell me about a Mommy.
Jonathan: (looking at me)  It has eyes, ears, nose.....and you hug it!

I think he passed the test :-)

Fun with the iPhone. Fill in the captions...

Kisses!