Autism Shines

There is nothing like turning a negative into a positive.  To embrace a challenge and making it into something empowering.

That is what happens when you put Autism parents' backs against the wall.

There has been some, should we say, negative and uneducated press about Autism and Aspergers in relation to the tragedy at Sandy Hook....a correlation that has no merit, I should add.  People were looking for ONE thing to blame...Autism came up as one of those one things (along with many many other things).

So....here comes Autism parent bloggers!

An amazing network of parents started a Facebook site, based off a meme one of the other parents created.  It is called Autism Shines.   And I have to say, already in a few short days it has become MORE than just a response to negativity.

There are so many kids like my kid.  So many varied interests.  So many ages, races, level on the spectrum.  But we're all there....all swimming in this sea...and for me, I don't feel so alone. 

I added my son's picture with a little info about him.  And really, it is only just a little info.  He is so much more to me. 

When you have a moment, check out the site.  Throw it a like.  And see that Autism can be scary, but also can make the world shine. 

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!

Happy Birthday, Buddy!

My baby turned 5!  How did this happen so quickly? 5 years old!  I'm sad he is not a baby anymore and so proud at what a big boy he has become.

He has been excited about his birthday for a while now.  When we would go to Target, he would make a beeline for the cakes.  I would have to remind him when his birthday was and that is when we could have cake.  So every time, we would count down the months till his birthday.  When it turned August, he would say Happy Birthday to everything....Happy Birthday, Lightpole; Happy Birthday, Blue Car....you name it, it was their birthday.  And funny, they were all turning 5 years old when you asked him how old they were.  


We did not have a party for him this year.  As I explained last year, we thought a birthday party would be too much for him.  Too many expectations on him, and he would just not enjoy it. 

So this year, we did what he would like to do best.  RIDES!  And we had such a wonderful weekend together.

But first, CAKE!  His birthday fell on a Friday, and the school was having a family picnic to end the summer.  So I took the day off work, and brought him a cake to school.  Everyone sang "Happy Birthday" and he was so happy.  We had Dora and Diego on the cake this year.  He kept saying, "Happy Birthday, Dora!"  He tried blowing out the candles and was fine with everyone singing to him.  And he looooves cake.

"Happy Birthday to you!"

The wait is over.  I get my cake!

Then we came home to give him his present.  This year was the first time EVER he requested something for a gift.  He asked for "Pop Goes the Wiggles" DVD.  So we got it for him!  Again, VERY happy!

Just what I wanted!

We later went to the zoo to enjoy a carousel ride, train ride, and running around on the playground.  We even stopped for ice cream!

On the zoo train

Ice-a!  Creamy! 

Later we went to the neighborhood park.  And then we went out to eat at our favorite diner, and a place Jonathan knows well.  He had the chicken tenders and a cookie.

On Saturday, we went to the kid's amusement park near Madison.  One thing is for sure....this boy loves the thrill rides!  We rode the roller coaster, multiple times, the train, the mini-boats and so much more.  It was such a fun day. 

In line for the roller coaster

Let's ride!

Sunday, we went to the toy store for more gifts...a big boy bike!

He really amazes me at what a big boy he is now.  This morning, he turned to me and said, "Do you love Mommy?  Mommy and Jonathan."  That was his special way of saying he loves me.


Happy Birthday, Buddy.  You make me smile with your humor, your curiosity, and you just being you.  

Team Jonathan

If you have been following, or know us personally, you know that Jonathan receives intensive one-on-one therapy every weekday.  We chose therapy through WEAP, which is the Wisconsin Early Autism Project.  It is Applied Behavior Analysis (ABA) approach to therapy. We have a team of four Line Therapist, one Senior Therapist, a Clinical Supervisor and a Clinical Doctor that works with us.

The Line Therapists work one-on-one with Jonathan at our house in the afternoons.  One of them is here for about 2 or 3 hours, and then another person comes for another shift.  Our Senior comes throughout the week and manages all the programs and therapists.  We have weekly meetings with everyone.  And then we meet with the Clinical Supervisor and Doctor every other month or so. I've likened this experience to project management, which is good, since that is what I do for a living.  

And let me tell you, these people are amazing.  They all have a desire to work with special needs kids.   They are willing to make fools out of themselves and will doing anything for a laugh from Jonathan. They listen to whatever Jonathan is obsessed with....The Wiggles, Farmer Jason, Elmo.  They star in video models, whether it be how to play with cars, or how to wash your hands.  They play red light, green light and duck duck goose.  And they even let Jonathan practice brushing their teeth and counted while we were prepping for the dentist. (Each one has their own, labeled tooth brush here just for this purpose).They share all his triumphs with us and feel compassion when we are faced with challenges. 

They work hard.  And Jonathan loves them.  He calls them his friends.  They manage his behavior and never take anything personally.  We've had a few come and go (and one come back).  He loves looking at their pictures when they are not here.  We've even had a few who left the team ask (yes ASK) to babysit!

I feel lucky that we have such a good team working with our boy.  We've been lucky with his therapists, his teachers at school and just about all who have worked with him.  Makes me think that our boy really is special, not only in his needs, but how he touches others once they get to know him. 

Thank you Stephanie, Ali, Katie, Jess, Tyler, Nell, Ashley, Allyson, Kori, Rachael, Keaghan, Maggie, Jaime, Andrea, Kelsey, Brady, Shannon, Katie, Victoria, Meagan, Kara, Linda and countless others.  You've touched this family.

Bad Mommy Blogger

Not sure how this happened.  I haven't written a blog in a long time. 

Honestly, I've wanted to write.  Really, I have.

But I've been tired.  Overextended.  In a cloud.  Unable to focus.  And really totally unmotivated.

I'm spread thin.  This I know.

I've had someone tell me recently that I have a chaotic and complicated living situation.  And really I thought they were crazy.  Me?  Chaotic? Complicated?  I guess when you're in it, getting through each day, you don't notice. 

But I think I have started to noticed.  I'm tired.

But this is what you do.  This is what millions of people do, in tons of different situations.  You do what is best for your child, for your family.  And then remember to take care of me. I need to remember that.

So forgive my lack of blog.  I'm here.  And sometimes that is all that matters.

End of the School Year. Beginning of Summer.

So with the beginning of June, comes lots of changes:  end of the school year, beginning of summer,vacations, even wearing cooler clothes.  All things that are going to take some prep for Jonathan.

Let's start with school...
He has had his teacher, Miss Jaime for over a year and a half.  He moved to her room January of 2011.  And when he talks about school, it's not just school.  It is "School and Miss Jaime."  He loves her.  She has been a wonderful teacher.  And not to play second fiddle, but the other teacher, Miss Andrea has been stellar. 

Miss Jaime

Miss Andrea

I was kindly reminded how attached he was to his teacher and room prior to Miss Jaime (awesome Miss Kelsey and Miss "Bicki").  And it's true.  He loved that room. And he did great with that transition .   

Jonathan's birthday is only 1 week before the cut off for Kindergarten.  So he is eligible to enter Kindergarten in the fall.  But we have opted to hold him back.  He will be in the 4K class at his current preschool.  This way, we have another year of preschool and intensive therapy under our belt.    So while I'm a little sad he is not going to Kindergarten yet, I know he is going to be better for it.

So come mid-June, they are going to switch him to his next classroom.  We've been working with his therapy team for this transition.  We have a book, a video, a count-down calendar.  I'm nervous.  I think the teachers are a little nervous too.  His new teacher, Miss Shannon has been awesome to let us come take pictures, video, etc her room.  I know it will be fine.  This is just the first of MANY transitions.
 The Pond Room!  We're getting ready for ya!

 Calendar time. Jonathan's FAVORITE!

One transition he is having a problem with are summer clothes.  He INSISTS on wearing pants in the summer, and would often wear shorts in the winter.  It is kinda funny.  But I feel bad that he is sweating it out in sweat pants on the playground.  Oh, and no more jeans.  Must be comfy type pants.  The boy knows what he wants!

Shorts? Flip flops?  Not for me!

 
 All in all though, we are looking forward to a fun summer ahead.  I signed Jonathan up for swim lessons.  We have a fresh sandbox ready for play.  And TONS of carnivals with rides, which currently is his favorite thing to do!  Happy Summer!!!!

This ride goes round and round, and I love it!

My Mother's Day

This morning, you came into bed to cuddle with me at 7am.  Your hot little head against mine.  Your heavy arm around my neck.  Your eyes were still closed with sleep despite you walking across the hall into my room.  You just wanted to be next to me.

Later in the morning, while Daddy and I sat and drank coffee, you hurt your foot.  You started crying and ran to me,"Mommy.  Mommy."  I didn't know what was wrong, so I just held you.  You either stepped on something or you stubbed your toe.  I still don't know.  But you said "owie foot" so I gave you a Mommy kiss to make it all better.  Your tears stopped.

We all went for a ride.  You sang along to the "Sesame Street" theme song.  You looked out the window.  You said, "We go to see strawberries."

Even after the strawberry farm didn't work out, you did fine.  When we pulled into McDonalds for a rest, you said, "We go inside!"  This McDonalds had a playland.  You took your shoes off, and kept your socks on, something you would have never done last year.  After playing a while, you came over, took my hand and said, "Jonathan and Mommy go down slide."  Luckily, no one else was there, so I climbed into the playland with you, while Daddy sat and laughed at me.  My knees hurt, but it didn't really matter.  Daddy bought you a milk shake.  I think that was better than picking strawberries. 

Later we went swimming at the gym.  In your little swimmy-floaty vest, you took off, walking into the pool alone, squealing with excitement.  You swam (ok, floated) across the entire length of the pool.  We played surfing upon your request and counted to three for me to go under the water.  You kept climbing on my shoulders and would say,"gracias, mommy!"

We played outside on the swing set.  I pushed you in the big swing and then the "blue" swing.  We later snacked on goldfish.  You pretended they were swimming by you.  "One fish.  Two fish.  A school of fish!"

Just being with you and Daddy today made this Mother's Day perfect.  We got to play without distractions of work and school and chores.  And watching you, watching you just being you, reminds me how much you've grown.  How sweet and special and funny you are.  You made me a Mother.  You've taught me so much already....how to be more patient, more understanding and accepting of things I don't know or understand, that my "Mama Bear" instincts are valid and usually right. You've taught me that the road map of life has a lot of back roads I never knew were there...and that going places I didn't expect usually are worth the ride.  I'm so proud to be your Mommy.  Thank you for being you.

One of our first pictures together

Being sweet, smart and funny

PS.  Daddy is pretty awesome too.  But I'll save my gushy Daddy sentiments for Father's Day ;) 

The Dentist

His appointment was May 1st.

We've been practicing for a month.  Literally, a month.

First there was "The Dentist Story."  It was a handwritten story that one of his therapist wrote.  It laid out  how we were going to practice going to the Dentist, what the list would look like on the big day of the things we would do at the Dentist, and how he will be a big boy.  He was OBSESSED with the book.  Took it to school, made everyone read it, and even took it to bed with him.

Then it was practicing Dentist during therapy.  The therapists made video models (where we tape them doing the desired activity for Jonathan to watch).  He would watch the videos over and over and over.  He had them memorized.  Then he wanted to perform them, like a little play.  They would practice during therapy too.  He was letting the girls brush his teeth and count them.  He even wanted to play Dentist at school.

Then we hit a snag.  When it was time to brush his teeth in the morning and at night, he HAD to do it like the video models.  I don't blame him.  This was his current favorite thing to do. But lately he's been getting stuck on activities, so brushing teeth before bed would take an hour sometimes.  In frustration when trying to get him to lay down to sleep, I would grumble, "Lay down!"  He would respond, "Open mouth!"  Touche, young man.  Touche.

So the big day came.  He was ready.  I left work early to go pick him up.  One of his therapist had a bag ready for me with all the practice items...Handy Manny, toothbrushes, a blanket to lay down on the chair, his book, the lists....we were set up for success!

We arrived at the Dentist.  Stephanie, Jonathan's senior therapist, was there to help too.  Jonathan was reading down the list, crossing off completed tasks.  He was excited!  We even got to the part of "going into the Dentist's room and sitting in chair."  We were rocking the list!

And then.....lay down.

Forget it!  He wanted no part.  We let him practice on Handy Manny.  We let him practice on Stephanie.  But now, it was go time.  And he wanted no part. 

So what do you think I did?  What any mother would do of course.  I laid on his legs and held his arms while the Dentist brush, counted and did his thing.  Jonathan screamed the whole time.  But I have to say, he knew what he wanted.  "STAND UP!  ALL DONE!  STAND UP!"

The best was when the Dentist said, "OK, I'm going to count to 20."  And Jonathan yelled back, "26!  You want 26!"  (They had been practicing counting 26 teeth in therapy). 

So when it was over, Jonathan got up, gave the Dentist a high-five, and was ready to roll.  Tears were gone, and he was fine.  Except, there was an elevator under repair in the lobby.  He has a new fascination with elevators.  As a friend said, it was like salt in the wound because he could not ride the broken elevator.  The elevator repair man was there and let us look inside.  After that, we were good.

The appointment, with all the practice and preparation, was a little bit of a disappointment.  But at least we got over it.  And I can only hope each time will get better and better.  I'm glad I don't have to lie to my son about where we are going and what is going to happen on these appointments. And I"m thankful for the Dentist staff for being understanding.  And for all our therapists who let Jonathan brush their teeth and get all up close to them in practice.  Small steps.  Small steps.

Oh, and he still has to lay down to brush his teeth in the morning and at night.  And he does have 26 teeth.  He counts them twice a day too.

Autism Awareness Month will have to wait.

My last post was about Autism Awareness Month. And I haven't written since.

Things have been a little crazy in my house.  And at work.

I have not felt a sense of calm and peace in a while.

Meltdowns, tantrum, tears and frustration are a norm at the moment.  I thought we had moved past it and settled into an adjusted routine, but I was wrong.

So for now, I'm going to go back undercover, and wait out this storm.  We move forward everyday, but sometimes there is no energy to do anything extra.

We're OK.  We have to get through this.  I hope to have better insight another day.  But for now, I'm in survival mode, while under siege of this current shift.

I'm sorry for being so vague. And really, what we are experiencing is nothing catastrophic.  Just a hard go of things at the moment.

Maybe I'll be able to share awareness for "Autism Awareness Month" later.  For now, I look forward to the end of April.

April is Autism Awareness Month

Today marks the official kick-off to Autism Awareness month.  Tomorrow, April 2nd is the Autism Speaks big campaign to "Light it Up Blue."

April also marks our one year of having an "official" diagnosis for Jonathan.

But I've been thinking a lot about Autism Awareness.  When was I first aware of Autism?

I think back at my childhood.  Did I know someone with Autism?  Was it called that when I was growing up?  I know there were some kids that were a little different.  Then there were the special needs kids that were in other classes too.  There was the non-verbal boy in middle school that won the school talent show for dancing like Michael Jackson.  He would practice his moves at lunch time.  His name was Chris.  And he did have moves.  But did he have Autism?

I also think about a special needs girl, Tiffany who could remember your name and face in an instant.  When she walked down the halls at school, she would wave at everyone and saying hi to each person by name.  Her aids always were prodding her on, because she took a while making sure she said hi to everyone.  She always was smiling and had a childish joy about her.  I remember I saw her years after we graduated.  I walked past her, and I heard "Hi Jen!"  It may have been five years since the last time I saw her.  But nothing changed.  Did she have Autism?  I don't know.

I remember hearing about Jenny McCarthy's son and Holly Robinson Peete's son in the media.  But really, it is like the word "Autism" just hung around in the air...sneaking up here and there in various conversations and news reports.

I don't know when I became aware of the WORD Autism.  But I know when I became aware of the MEANING Autism.   It was a feeling...long before it became officially attached to my son.  A nagging hum. A buzz in the back of my head.  A small feeling in my gut.  No other way to explain it. I tried to fight it off, but the hum, the buzz, the feeling grew louder. 



A new CDC reports that 1 out of 88 US children are on the Autism Spectrum now.  If that statistic doesn't make us AWARE of Autism, then I don't know what will.  1 out of 88.  Last year it as 1 out of 100.  And not too long before that it was 1 out of 150.  It's not just a handful of kids you remember from your childhood anymore.  It's your neighbor, your cousin, your kid's classmate, your nephew or even your child.

I look at my son, and I don't see Autism.  I see Jonathan.  (OK, some days I see Autism, but mostly I see Jonathan.)  Autism is a part of our lives, whether we want it to be or not.  And while I don't want Autism to be the definition of my son, it will be attached to him in some way, for better or worse.

Autism Awareness Month should be about the meaning of Autism, which is far more reaching than just the word.

List-mania!

This past week was a bit rough.  Since Jonathan was sick the previous week, getting back into the routine was hard for him. But we found he really liked and relied on mini "to-do" lists we started making for him.  Like, REALLY, REALLY, REALLY liked them.

We have a morning routine list:
Potty
Ipad
Potty
Brush Teeth
Get Dressed
Ipad
Eat
Calendar
Put on Shoes and Socks
Blue Car
School

We have a night time routine list too.  (I won't bore you with that one, but it is pretty similar to the morning one).  

We would write them on little scraps of paper.  He really enjoyed crossing off the items he accomplished and recap what he did.  "I all done potty!  Good job!" for example.

School and therapy used lists too.  At school they have a mini dry erase board.
So I picked one up, in anticipation to do away with the scrap paper.  He was giddy when I gave him the dry erase board.  Simply giddy!

So this whole weekend, that board followed us.  On our errands, in the stores, on walks, even tucked in with him in bed.   At first, I tried to have him leave the board in the car when we went to the store.  But he really wanted to bring it, so I said fine.

While at World Market, he decided to settle in, and start writing too.

It got even more complex as the weekend went on.  This morning, I went upstairs, and discovered he had started writing a list on his own.  He asked for some help on a few words, but he mostly wrote it all out himself.

"Pootty."  We got a laugh at that.  I only wrote 2 of the items.  He did the rest.

Dude was spelling!  My 4 year old was totally spelling!  We also did a list to go for a walk to the park.  He didn't ask to go, he just started spouting off the steps to go to the park.
"First potty.  Then put on the shoes and socks.  Then walk in the wagon.  Then we go swings.  Then we go slide.  Then we go walk in wagon.  Then we go home!"

As tedious as these lists can be, I can see his comfort in knowing what is ahead.  We can add things to the lists that he doesn't like (ie, take medicine), but he can see there are more desired items after, and we keep going.

I better go.  "Potty" is coming up soon on his current list.  And you never want to miss that one. 

What a Whirlwind Week(s)

Well Hello!
So if you've read any of my most recent Facebook statuses, you've seen that Jonathan and I were a bit under the weather last week. He had a high fever from Monday through Saturday.  I had one from Wednesday through Friday.  Official diagnosis is unknown.  Mine may have been strep.  His may have been pneumonia.  Same antibiotics prescribed.  Regardless, we are fine now.  Hooray!

But it was a rough week for my buddy to get back into his routine and schedule.  We've started writing down lists for him, and he has discovered how much he loves to cross off accomplished items.  We make a list in the morning, the school makes a list for him while he is there, afternoon therapy makes a list, and we have a list for our bedtime routine.  If it helps, we'll take it!

We also had his IEP meeting today for his 4K school year.  This morning, we had 7 educators at our house at 7:45am, plus Mike and me (and guest appearance from Aunt Kathy and cousin Kristin...they stopped on their way through Madison on the way to Seattle!).  We set up some really great goals for Jonathan for the next school year.  And his teacher that he will have next year was able to join us too.  We were happy she was here so we could get to know her better and for her to be able to get up to speed with the amazing team we have. 

I think our most touchy part was that our school district has been pushing Jonathan's eligibility to regular Kindergarten.  Jonathan's birthday falls eight days before the cut-off date.  So he is eligible for Kindergarten, however we elected to keep him a year back.  The district calls it retention.  I call it crazy.  EIGHT DAYS!  If he was born one week later, this would be a non-issue!  But no.  We had to gain special permission, read a letter telling us how detrimental retention is to children in later grades, a visit to the elementary school to view classrooms, and the written explanation as to why we made the decision that what we made.  And really, this issue has been following us for over three months. 

I told Mike, when we received Jonathan's diagnosis, of all the battles I knew we would have to fight on behalf of our son, kindergarten placement was not one of them. 

But our team seemed to be in agreement that our plan (keeping him in his current Preschool for 4K next year) is the best plan for him.  And I have never felt so confident going into a school year as I do with our plan and team.  We plan on working on a lot of social skills with Jonathan.  And I think we will really be able to incorporate some of the amazing things he is doing in his one-on-one therapy into the classroom. 

So it is a sigh of relief that we are healthy, the IEP is done, the 4K placement is complete, and we now get to keep moving forward.

And I write all this without having to "lay down under tent" until someone fell asleep.  Small victories.  Hooray for that!

Video Models and Walking in the Springtime

Two topics - One Blog post.  Here goes:

Our therapists have been creating video models of how to play certain games.  Examples are: how to play with Mister Potato Head, car ramp, coloring, etc.  It gives Jonathan an example of the appropriate ways to play something, which is often lost on him.  We've had video models recorded and put on DVDs for us in the past.  But thanks to technology, we are now able to download them directly to his iPad.  This past week during therapy, he can watch one of the videos and then try to play that activity.

This has been working.  Working so well in fact, that all weekend, he has been imitating the video models to a tee.  He recreates the scene, by playing the games in the exact locations they were filmed in our home, the same sequence, even some of the same words used.   While I know this plays on his imitation, my hope is that after he gets that down, he can expand on his own within the activity.

But it has been really sweet watching him.  So I have filmed him doing these video models so he can watch them too

Here is an example.  The first video is Ali playing with spelling cards.  (I did get Ali's permission to post this video).  Next is Jonathan doing the same activity.  (it is only a portion of the whole video, but you get the picture).  It really makes me smile.

Tantrum Time

We have not had an Autism-fantastic tantrum in a long time.  Well, we had one tonight.  I'm still feeling the after-shocks.

He didn't want to go to bed.  So he was rebelling against  nighttime routine.  He didn't want to brush his teeth.

What makes these type of tantrums very, very autistic is what he does.  I once read the book "The Horse Boy" by Rupert Issacson, who desribes to a tee his son's tantrums.  The spewing of random words without connection or meaning to us or the situation.  It is like you can see the inability to connect the synapisis.  (Read this book or see the movie.  I haven't seen the movie yet, but read the book.  Moving and interesting)  

"Jonathan.  It is time to brush teeth."
"Noooo!!!  Puzzle!... In the box!...Handy Manny!... Downstairs!... Timer!...Mommy's toothbrush!...Charge!... Right here!...Give to Daddy!"
Huge tears rolling down his red face.  He can't control anything.

It breaks my heart.  I can't help him when he gets to this place. All I can do is just try to calm him down and refocus.  It happens.  I actually feel lucky that these tantrums have been infrequent.  But this is Autism.  


After we calmed down, I laid down with him under his tent (his choice place to sleep these days in his room).  I told him "Daddy loves you.  Mommy loves you.  Pepper loves you..." and so on.  He repeated what I said, but would add "no", ie. "No Daddy loves you."  But after a bit he got quiet.  He listened.  He was calm.  Storm had passed. 


I do not write this for you to feel sorry for me.  I do not write this to feel your pity or your worry.  I write this because it is real.  It happens.  It is a part of who we are.  The good, bad and ugly.  We have our highs and we have our lows.  In fact, I think everyone does.  It is life.  And tomorrow, we get up, we do it all over again....

Dual Language Extrodinare!

"Fantastico!"

I was giving him a bath, and he had been mumbling something, and then spurted out with enthusiasm "Fantasico!"

I repeated what he said.  Then he said, "Let's go to the dance party.  Vaminos!"

Ahhh.  It all made sense.  Dora.  We've never watched the TV show, but he has been playing a few games on his iPad with her in it.  And that small phrase was something she says in one of her games.

Echolalia at it's finest.  This time in Spanish!

I was putting him to bed later.  All the while, he was singing "Where is Thumbkin?"

I wonder if he knows what he is saying or singing.  Or if these phrases he often hears over and over again just bring him comfort. 

I have to admit, when he started talking in Spanish, I had the thought that maybe he'd be an interpreter when he grew up.  Or could fully speak two languages.  I had always struggled with foreign language, but maybe he wouldn't. 

Wait.  He's four.  Let's focus on one thing at a time.  HA!

This past week I was out of town for work again.  Mike and J did GREAT.  And I know I was missed.  On Thursday morning, after me being gone two nights, Mike reported that Jonathan kept saying, "M-O-M-M-Y.  That spells Mommy."  When I got home, he busted open the door, saw me, and took off in the opposite direction running with a huge smile on his face.  He was so excited, he couldn't contain himself, he just had to run.  I did get my big hug later.  He kept saying, "Mommy is home."  I felt loved.

He is easy to love right back.  Adios!  

Slow Getting Back to Normal

It has been way too long since my last blog post.
And honestly, it's because of me.
After Mike's surgery, a little time off of work, visit from family, I had a hard time getting back into the swing of things, in many different aspects of my life.
Diet and Exercise?  Who has time for that?
Blog? Ha!
Get child new pair of shoes because he is walking funny in his old one?  You better make an appointment with yourself to do that.

Anyway, things are finally caught up.  Mike is feeling much better and moving around great.  He has resumed his normal "Daddy duties" at home and work.  And he really is doing great.  Sore still, but great.  He started PT, which requires him to go on a few walks per day.  So this weekend we've enjoyed doing that together as a family. 

Jonathan is rocking and rolling.  Still loving The Beatles.  Although we listened to the new Farmer Jason CD about 10 million times this weekend.  But that is pretty rocking, so I think it counts.

And I did get him new shoes (finally), and resumed my diet and exercise routine as well.  Just in time for me to go out of town again.  Ha!  Can't win them all.

Therapy for Jonathan continues as always.  It is funny, because one week, I'll feel like he is progressing like no other child...shooting down expectations left and right.  And then the next week, I realize he still cannot communicate appropriately with his peers and schoolmates.  He can tell his therapists at table time what color a stop sign is, but can't answer someone when they ask, "how are you?"  I've noticed his echolalia (repeating phrases from TV shows, etc) has moved on to repeating comments I make.  It is so cute that he asks, "Do you love Farmer Jason?"  But I know he didn't come up with that on his own.  He has been asked that many times over by us. 

Anyway, I know progress comes in spurts and sputters...slow and steady.  And I bask in where we are today.  And remain hopeful for tomorrow for our boy.  We do have a therapy plan for social play with peers in the near future.  So looking forward to that.

One things is for sure...and Mike reminded me of this yesterday.  Our son is special.  Not just because of his  "special needs," but because of who he is.  He's our special boy.  I like that a lot. 

So that's it for now.  We're good.  Slow getting back to normal, but really, what is normal? 

And now an update on the boy

I've been home this week.  Been enjoying sleeping in a bit, and taking care of Mike's business stuff. Oh, and of course playing Nurse to my recovering patient.  It's been good to be home.

But really, I've enjoyed picking Jonathan up from school.  I usually am in such a rush in the morning when I drop him off.  But I have been able to watch him in action, from a distance, before he notices I'm there.  I love that moment.

I saw him sitting with his peers, eating lunch, reciting lyrics from "Going on a Bear Hunt" while all the other kids were eating.  He saw me, gathered his plate, threw it away in the garbage, and gave me a big hug.

I saw him playing on the playground.  He was playing alone.  But he was happy, by evidence of his running and flapping.  He climbed a small slide and couldn't figure out how to turn around once he got to the top.  His teacher helped him.

I saw him running around his classroom, and pick something up to throw it away.

Just these little moments, small reflections, of who he is when he is not with me.

I've also been listening to him while he has therapy in the afternoon.  The giggles, the screaming, the yelling in joy. He's had a few not so good moments, but overall, he has been happy playing with his friends (those are the therapists that come to the house).

He's been obsessing on The Beatles.  He is learning the words to lots of the songs, and totally singing the wrong words.  He also makes up his own words too.  "We all live in a yellow, brush your teeth."  Or "come together.  IPad,  Ohh me!"  He's been marching to "Daytripper" and trying to shake his hips.
He tells me to sing 1 then 2...meaning track 1 then track 2.  He usually plays his CD in the DVD player so he can watch the track numbers.  "I want 12" means he wants to listen to Daytripper.  "24" is Something in the Way She Moves.  "15" is Yellow Submarine.  He has another CD that only has a few instrumental songs of the Beatles (it is a RockABaby cd).  He plays number 7, and tells me "24."  That's because number 7 on this CD is Something in the Way She Moves, and on the other CD it is 24.  I love that he connects the two.

He also told me that "we go to library.  Play Thomas!"  He wants to go to the library to play on the Thomas the Train table.  So I told him we will go on Saturday.  He was sharing something he wanted to do!  And he was fine with waiting until Saturday to do it.  Now we have a date.

He just amazes me everyday. I know we have a lot to keep working on, but I can't believe what a big, funny, independent guy he is turning into.  He makes me so proud.

UPDATE: Giants won and Daddy's OK

Hi!
So, Super Bowl Sunday went the way of the Giants.  Mike was THRILLED!  Now he would be able to watch Giants Super Bowl highlights all week during his back surgery recovery.

Back surgery went well.  We were able to come home that night.  He is in a lot of pain, but is getting up and walking around.  He was so happy he was able to watch the ticker tape parade while laying in the hospital bed.  And now Rich Eisen here at home.  A happy, sore guy all around.

Jonathan is doing well.  When he came home the day of the surgery, he went to see Daddy.  He said "shhh" because I told him Daddy's body was being quiet and needed a rest.

I"m proud of both my boys. 

The Giants better win one for Daddy

When we started this blog, it was for the intention of discussing how Autism has effected our family and how we navigate the rough waters of our journey with our son.  But really, the blog is about our family.  And that is why I dedicate this post to my husband, Mike. 

It is Super Bowl Sunday. And Mike's beloved GIANTS are in the game.  Here was a pic from the last time they were in the big game.

When my baby was a baby!

My husband is a die-hard Giants fan.  He is a contributing writer for a blog called Big Blue View.
The Giants are like a religion for him.  So I guess that makes today Christmas.  

My boys.  One of my most favorite pictures.

So we watch the Super Bowl in the peace and quiet of our den, where Mike is free to mutter curse words under his breath or do a victory dance.

We could use a victory dance. 

Tuesday Mike is scheduled to have surgery for his back.  While this surgery is an outpatient procedure, and much less invasive as we originally thought, it is still surgery.

He has degenerative discs.  They are shaving a joint to allow room for his one disc to bulge, removing the pressure off his one nerve.  Mike has had back pain for almost eight years. PT, chiropractor, epidural shots, acupuncture, massage and pain meds have led us to this day. We have a lot of hope for a solution.

Mike puts on a brave face almost everyday.  But I know he is hurting.  And I know it weighs on him.

So here we go! Jonathan's book about "Daddy's Surgery" is written.  Babysitters lined up.  Days off requested.  Sister-in-law coming to help the following week.  We are ready for this.  We are hopeful for this.  Mike just needs some relief.  Wish us luck!  And some for the Giants too couldn't hurt. 

Autism: A Day with the Experts

We are so lucky to live in Madison.  Not only for quality of life here (yes, even in the winter), but also it is a wonderful place on the cutting edge of Autism research, outreach and information.  And not but 15 minutes from our house is the Waisman Center, UW-Madison.  They do so much for children with disabilities as well as Autism.  This is where Jonathan received his official, medical diagnosis. We also participated in a research study there for language.  Today they, and the Autism Society of Greater Madison, hosted their Eighth Annual "Autism: A Day with the Experts".  And I seized the opportunity to go.  (I mean, 15 minutes from my house, for crying out loud!)

The event was billed "Participants will learn about some of the latest advances in autism research, and will hear firsthand from a panel of experts - individuals diagnosed with ASD and their families."
Here is my quick rundown (and you can check out the event's link above for more info)

- Andrew Alexander, PhD spoke about the brain and reading MRIs, and the research in the differences between typical people and those with ASD.  It looks like there may be some true differences, with high success rates in reading their research of these differences.  There is the potential to use this (the MRI / brain scanning) as a way to assist diagnosing ASD.  However, it seems like much more research needs to be done.

- Leann Smith, PhD, a family researcher, spoke about transitioning together as a family when your child reaches the age of adolescence.  While this scares the living bejeezus out of me (Jonathan in high school?!  Jonathan as a teen?!)  it was very interesting to hear about the levels of stress parents have when parenting children with ASD (higher levels than those with children with any other disability!)  And, how not only does the child need to be serviced, but the whole family is affected and could use support. Also, I learned how little support there is for those who leave the school-system and enter adulthood. 

- Linda Tuchman-Ginsberg, PhD spoke about evidence-based practices, and how they best work with your child.  This means a whole team effort, as well as a full understanding, support and follow-up with teachers following IEPs, clear IEP goals, etc.

- Lastly, there was a panel, which included 2 people with ASD (one a recent high school grad with Asperger's, and the other a 54 year old man, who was diagnosed in his 30s), 2 siblings (one a fifth grader with an older brother with ASD, and a 20 year old with younger brothers with ASD), a Grandmother and a Father.  Lots of great insight, especially coming from those with ASD, who so eloquently spoke from their first person perspective.

Personally, one of the most interesting things about today was looking around the room and seeing what a diverse crowd had attended this event.  And that was more evident at lunch in the interesting people I had the privilege of sharing a table with.  I met an Occupational Therapist who works with many kids with ASD.  A young twenty-something who has a 6 year old brother with ASD, who wanted to learn more so he could better help his sibling, as his parents were doing nothing.  A couple, that lives 2-plus hours away, that have two sons on the spectrum and were just searching for support and research information.  And a gentleman who I think works in nutrition (we discussed food and the gluten-free diet).  In the seminar, I sat next to a woman who is a social worker, servicing more and more children with ASD.  All of us have people with ASD in our lives.  All of us wanted to learn more.  And really, there is still SO MUCH MORE to learn, and discuss.

I'm really glad I took the efforts to go today.  Another example that we really are not alone.  We all share similar journeys.

When I got home, Jonathan had a make-up therapy session.  Since this is not typical in his weekend routine and usually I am not home during therapy time, he really wanted me to be with him.  He would yell, "Mommy, downstairs!"  So I was able to join him and his therapist in the 2 1/2 hours of ABA therapy today.  And while I had plenty of other things to do, I was so glad I was able to be with my boy and watch how much he has improved. I had a blast with him and his therapist.  It was a good refresher for me in my appreciation of all of those that are helping our boy.

Feeling much gratitude for today.  (but I am beat.  ha!)