Stress Free Errands

This past Saturday, Jen was going for a long run (she is training for a half-marathon) and so I was going to do the grocery shopping with Jonathan. Lately this has been a chore when we all do it as a family, so I wasn't sure how this would go--especially since we had three stops. We had to pick up a box of vegetables at a private residence from our CSA, go to Trader Joe's and then to Copp's, and since Jen was not with us, I had to get Jonathan out of the car for the CSA box. We went into the holding area of the house where the boxes are, took ours, and Jonathan helped me by carrying the CSA newsletter. So far so good. Of course, I had been prepping him by saying "pick up vegetables, Trader Joe's, then Copps."

I decided I needed coffee badly to continue this mission, anticipating a few meltdowns along the way. I stopped at a PDQ and figured it would be okay to make an extra stop if I also bought him a cookie. Yes, it's bribery, and maybe it's bad parenting, but you have to go to extremes sometimes when having an autistic child to avoid a prolonged meltdown. Mission accomplished, by the way--he held his cookie tightly all the way to Trader Joe's. He then let me put him in the shopping cart, which he doesn't always do. He ate his cookie. He wanted me to buy the gallon of milk, but I somehow didn't let a temporary disagreement deter me--I put the half-gallon in the seat next to him, then got an apple juice to put on the other side of Jonathan. He was happy, and he was fine through the checkout process.

Then it was on to Copp's, where we buy the rest of our groceries, including usually the other milks--one that we drink, the organic one; and one for Jonathan to put on the corner of the kitchen table--notably, the one with the yellow label, just like they use as school. He calls this "yellow" and going to the store means buying a half gallon of "yellow." Anyway, he usually flips out going up and down the aisles, until you get to the milk area. So I did the smart thing--we went straight to the milk area. Of course, Jonathan wanted nothing but the gallon of "yellow" and so now we have that (we dump them out each week after they sit for hours on the corner of our table--and keep it tightly sealed) as well as the one we drink, as well as an extra half-gallon from Trader Joe's. Yes, the milk is an issue we are working through, but it's something we are just allowing right now, a few dollars a week for something that keeps Jonathan happy.

Anyway, speaking of happy, he was very happy through the entire shopping experience at Copp's too. In all, we're talking over two hours of father/son time with no major meltdowns. I was expecting there to be issues, and thought I'd be pleasantly surprised if there weren't any--there weren't. As with every little victory when you have a child with a disability like autism, you look for little victories at a time, and try to celebrate them and build on them. And quality father/son time, even for something simple as going grocery shopping, is definitely a little victory.

Oh, and a bonus--he wanted to listen to the Mike Farley Band's Halfaworldaway album while we were running around town, and at one point he shouted out "Daddy's music!" That's cool for two reasons--I can hear my own songs through the ears of our son (because I've otherwise heard them a million times); and two, it is less time listening to Elmo or Handy Manny!

An uneventful week :)

We've had a pretty un-eventful week here.  Just the way I like it.  Jonathan still working hard on controlling his environment ...example: a tantrum if we pull the car into the garage.  That was the biggest catalyse over the weekend.

But he asked to go to the library yesterday.
"Go Library.  Blue car.  See trains." 
We went and he played with EVERYTHING, except the trains on the train table.  Ahh irony. 

He reported that the sun was up at 7am today.  This after being up since 5:30.  But he was very excited about "SUN!"  Me?  Not so much.

Oh, and while watching Handy Manny, his latest fav, he's been laughing and repeating a lot of the lines.  But once in a while, he'll say, "Hi Kelly!  I'm Jonathan!" 

And he's been watching an Elmo's world about books.  Mr. Noodle (Jonathan's FAV!) reads a book upside-down and has reading glasses on.  The other day, I was in the basement getting the laundry.  Mike was mowing the lawn.  As I was walking upstairs, it was oddly quiet.  A sure sign something was wrong.  I start yelling, "Jonathan! Jonathan!"  He surely went outside without me.  He's probably running in the street. What if he gets hit by a car?!  "Jonathan!  Jonathan!"  I'm looking around.  Not at the table.  Not outside, as I look out the window.  And then I look right in front of me.  He's sitting on the couch with a pair of sunglasses on holding a book upside-down with a little grin.  He was being Mr. Noodle.  And he was waiting for me to notice him.  I laughed.  He laughed.  It was really funny.  I wish I had a picture. 

I do have a picture of this...  He's playing hide and seek with his Handy Manny tools. 

"Felipe!  Where are you?  Squeeze!  Where are you?"  He's hiding them under the sleeping bag.  :) 
Like I said, just another uneventful day here.  We're just playing. 

Time to just be Mike and Jen

There is a pretty scary statistic out there stating the rate of divorce between parents of children with Autism is greater than those without.  I've also seen reports debunking this.  Whatever the case, parenting a child is hard. And marriage is hard work too.  And despite all that is hard about it, throw in Autism, and the waters can get a bit rougher. 

I recognize it is hard.  I recognize that I may not always be the best wife.  Hell, I may not always be the best mother for that matter.  And to say this year hasen't been trying on our marriage would be a lie.

But we still love each other.  A lot.

So we took a trip.  We are lucky to have a wonderful babysitter and friend who loves our son.  She watched him over the weekend.  (They had a blast).  In the meantime, my date picked me up after work on Friday, and we high-tailed it to Chicago.

Did we see shows, museums, the sites?  No.  We ate.  We went to multiple restaurants (The Purple Pig, Frontera Grill and Graham Elliot), walked Michigan Ave, took a nap, and just enjoyed being together.  And I feel like every other sentence out of my mouth was, "I'm so glad we did this." 
Update: Here are the links to Mike's blogs about our meals:
The Purple Pig
Frontera Grill
Graham Elliot

Moral of the story?  Marriage is hard.  Parenting is hard.  Autism is hard.  We've got a lot of obstacles in front of us.  But we're still the same people deep down that saw each other from across a room, eyes locked, heart beating fast, all noise blocked out....I looked at him and never looked back.  And I'm glad we had a refresher weekend to remember that.  We needed it.  We needed the time together to just be Mike and Jen.

Did I say Square One?

(Spoiler alert.  I will be discussing poop and poop related events)
aaannnd then there was frustration. 

With all the wonderful victories I mentioned previous, we had an incident today that brought me back to reality.
1 word. 
Poopcasso.
That is what we call it when Jonathan has a BM, and then smears it all over the place.  He has not done that in a long time.  He did it today.  I wasn't home.  Mike as here with him.  When I got home, Mike told me what happened, already had clothes in the wash and had given Jonathan a bath.  I noticed remnants in Jonathan's hair.  He promptly had another bath.

Mike and I are both tired of this.  Tired of the pull-ups.  Tired of clean-up.  Just spent.   

Small Victories

Jonathan's speech has been increasing by leaps and bounds.  And while it has mostly been the scripting of Caillou episodes ("I like apple pie!  I like apple jelly, on toast!" - his fav of the week), I feel like this week we've had some small victories in back and forth communication.  I'm not going to get overly excited, just pretty satisifed for a moment, which really, I can't ask for much more.

Here are some examples:
We were going to school, and the car was outside of the garage.  I opened the door to the garage and Jonathan peeked in.  He looked at me and said:
"Where is blue car? Blue Car!  Where are youuuuu?"

At school, his teacher reported they have been working with the kids on serving their own food and passing it to their friends at lunch.  She said she heard Jonathan say:
"Here, Landon.  Have some fruit."  "Here Mya, have some vegetables."
I WAS FLOORED!  Did he really acknowledge another child by name?!

His special ed teacher said she saw Jonathan go up to a kid who was visiably upset, look at him in the face to double-check his facial expression, and then touched him on the arm.  She felt it was a sign of Jonathan showing empathy.  Empathy?!?!  I have literally sat in front of Jonathan, crying my eyes out, and he would just look at me and laugh, or not react at all.  I will take empathy!

Jonathan also was really interested in a book that has pictures of other kids doing various facial expressions, each matching a letter of the Alphabet.  He carried the book around for 2 days, and contantly wanted me to label the faces the kids were making.  I brought it up to the therapists, and hope they jump on that interest.  Reading facial and social cues is something a lot of Autism kids have a hard time doing. 

Oh, and when I said good night to him last night, after I put up his baby gate (otherwise we would be running back and forth out of the room all night), Jonathan was upset I was leaving.  He then said, "I do not like this."  I did a double take on that one.  Oh, and he just ran into the room 2 seconds ago and knocked his hand on the wall.  He said "I am hurting."  This coming from the kid who had an in-grown toe nail and never made a peep.  (He is ok by the way.  I did stop writing and gave him kisses.)

Last but not least, we had some OK drop-off at school this week.  He would dawdle a bit, and would whine if I picked him up to get moving, but no real tantrum. Then on Friday....ahh, blessed Friday...he ran right into the room and started playing.  I even had to park in a different spot, and he was fine with that!!  No tantrums, no dawdle, no whining. Relief.  His teachers sent some cute pictures, and I have to share. 

 Looking at books.  My little book-worm

 Stamping my name

 Playing playdoh next to friends!

 When did he get so big?!

In the meantime, I'm going to keep celebrating the small victories, because I know the next challenge is around the corner.  It is like when you have a newborn, and you think you have a good sleep routine down, inevitably something changes, and you're back to square one.  I don't dread the return of square one.  I'm being realistic in knowing it will be back. But now, we're good.  We really are.

My Son, the Neighborhood Streaker

"Pants off."
"Shirt off."

This is being heard more and more at my house, and it ain't me or Mike! 
And when we're inside, I don't mind.  But sometimes it happens when we're outside, at dinner, shopping, school, you name it.  My son is a stripper.

Recently he does not like to get wet or dirty.  Not one drop.  A splash of ketchup =  no pants.  Just wash your hands = no shirt. 

Who needs clothes when I have these stickers?

This morning, he literally climbed up on the counter (we have a Learning Tower there, so he can be even level to the countertops in the kitchen) and started taking his pants and diaper off.  This past weekend he took his pants off in our neighbor's drive-way.   

Now I know "typical kids" do this too.  And right now, it is hilarious.   I'm choosing to laugh, as I carry him off to change.  It's a good thing he's cute. 

You can even garden without pants!

"I cook naked.  I clean naked.  Naked, naked, naked!" - as quoted by Elaine from Seinfeld

Jonathan and his Posse

I've often wondered what the neighbors are thinking when they see 5 women in their early 20's leaving my house.  Or what they think when they see them coming and going separately at various hours during the day.  Mike does work from home...what is going on there??  On neighbor asked me about all the UPS deliveries, but I don't think she had enough guts to ask me about the women. 

Ahhh, in-home therapy.  So glamorous!

I mentioned, Jonathan now is receiving ABA Therapy through the Wisconsin Early Autism Project (WEAP).  He has one-on-one therapy for about 25+ hours a week, on top of going to school in the morning.  He will also start speech, occupational and special ed therapy at school, which he had last year.  But now he has the one-on-one at home now too.

We have 3 or 4 line therapists, mostly recent college grads.  We also have a senior therapist, clinical director, and clinical supervisor.  (I'm already looking for thrifty Christmas gifts to get everyone.)  These people are coming and going from my house all the time.  We also have weekly meetings, bi-monthly meetings, and a re-evaluations every 6 months.  (I'm exhausted just writing this.)

How has Jonathan reacted?  He likes therapy. He has funny inside jokes with each one, and eagerly greets them when they arrive at the house. He get rewards. ABA really values positive reinforcement.  He does great at the academic part.  He has a hard time at the playtime choices.  His days are very structured, which has provided GREAT challenges. 

He currently does anything and everything he can to control his environment.  He wants the lights off, he wants the lights on.  He flips the switches.  He wants the milk (yellow milk) out and placed in a very specific area on the table.  He wants the door locked.  He wants the door open.  You never know what he wants, but if it is not the way HE wants it...tantrum time!  Since WEAP started, I feel like he's become more autistic, or at least demonstrating more autistic behaviors.

Yellow Milk in it's proper place

This may be part of the process.  He may be flexing his muscles here.  But he is verbalizing and telling us wants and needs more.  There's that silver-lining!  But he is interacting...small victories.  Small victories.