Sunday, March 25, 2012


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:
Brush Teeth
Get Dressed
Put on Shoes and Socks
Blue Car

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. 

Thursday, March 22, 2012

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!

Sunday, March 11, 2012

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.

Sunday, March 4, 2012

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....

Saturday, March 3, 2012

Dual Language Extrodinare!


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!