Friday, September 28, 2012

Dream a little dream

Last night I was laying in bed listening to Owen giggle and then he said "puppah" a handful of times.  It was wonderful.  The thing is it got me to wondering.   Does Owen talk in his dreams?  Does he dream that we can understand him? Does he dream that he goes outside to play with the neighborhood kids instead of therapy?

I don't know because he can't tell me.

But, he can tell me "open" when prompted to open up a juice box.  He can say "puppah" for puppy and "iPad" like he's the son of Steve Jobs.  It is progress and I'm thrilled.  He also understands everything.  I can tell him to go potty and then send him back to flush and wash his hands and he doesn't bat an eye.

The world of Special Needs can be so much worse than just Autism and Apraxia.  This I know is true, but, as Monday is October 1st our calendar year rolls over for insurance which means we are back to insurance copays.  $27.40 for each Speech and OT visit.  We pay $54.80 for our boy to go to Miss Sarah in hopes he learns to speak.  It's a small price to pay, but for a family that is facing unemployment like Rich who's been out of work for the 2nd time in 3 years, it's a lot and that's just a small drop in the bucket for the world of Autism.

$54.80 a week.  What do you spend $50 or so bucks a week on?

Dinner at Chili's with no alcohol for a few people is easily $50-60 and people spend that without batting an eye.  Do you smoke?  Chances are you are spending what we pay for the little man to speak to pollute your lungs and the air.    I'm grateful we have such good insurance. I can't imagine paying all this out of pocket.  This does make me wonder how many people realize how grateful they should be...

Do you know?

I hope so.

Sunday, September 16, 2012

Don't Blink.

Don't Blink.

Sounds crazy, I mean - Don't Blink? Well, with Autism, if you blink sometimes you'll miss it.

or not hear it.

Obviously, this is not possible, but it's something that feels true for a lot of things Owen and I'd imagine a lot of parents with kids on the Spectrum or just Special Needs in general.

Don't Blink! You may miss it.

Owen could be playing with Daddy, and I can be in the room and just doing something else and he'll do something so quickly. It could be an appropriate head shake, a really clear "open" when he wants his juice pouch opened, or he initiated play. Sometimes, you feel like you need to never leave the kid alone so you don't miss those little moments.

It's the little moments that we live for, because we are still working on building those little moments into something more, into progression-into a bigger and better skill, or appropriate behavior or from pushing a car back and forth to doing that PLUS saying "Beep Beep".

It's these things that do not come naturally to Owen, so these little glimmers of hope are all we have to get through to the next day.


Owen won't wear a baseball hat. He stopped wearing one after he left Holmdel preschool, but never at home. Never! He would wear one in class when Miss Beth told him he had to put it on and he'd stop with his eye stim.

I've been working on him wearing one since then.

I'll do the math that is over one year.

Put it on, take it off, tears, bribes, he just wouldn't cooperate. So, about 2 months ago, I started telling him to wear the hat from the car to the house.

He actually started to do it.

So, after I praised him til the cows came home, and he had done it consistently for about 2 weeks, we showed Daddy.

He kept the hat on.

So, now I've been working on wearing the hat out when we are running errands.

And today...

He did it, and there was a difference.

I had errands to run and he was a listening machine! He held my hand in Kohls while we got new pajamas (Thank you Kohls for our free $10 card plus 20% off coupon = $10 for 2 pairs of pjs), he was angelic in the huge line and the best part- when I asked him if he had to go to the bathroom, he said YES!

We've been having huge problems with him not wanting to go in public, we've had accidents, wet car seats, accidents in therapy!

Today, he went to the bathroom when I asked him! Score!

Stimming = decrease and dry pants

Mommy = overjoyed

And for a final update- a certain little boy is REALLY into his puppy!

Sunday, September 9, 2012

The Magic Garden

Sometimes on a nice day, Owen and I go off to Deep Cut Gardens. It's our little spot that we've been coming to for a bit, usually on Sundays when it's just us. Since today, was just gorgeous and not too hot, I decided we'd head down.

The reason I love to go to Deep Cut Gardens is it so calming. Owen's body is stimming so much I feel like sometimes he needs to just sit and relax. Enter Deep Cut Gardens.

What's funny about going to Deep Cut is that when we get there, he complains or hides behind a tree telling me "No."

He complains the entire way down to the rose garden, then when we get there-it's a whole new ball game.

My little creature of habit, has a ritual. He needs to touch the hedges. He loves to rub his hands back and forth across.

This probably sounds like nothing to you, but in our house, this is big. Why?

He noticed them.

So many times things, and places seem to just be a blur to Owen, he runs through or is stimming that he doesn't "see" things a lot of times. Just recently he finally noticed planes in the sky, so to stop and touch and enjoy is refreshing. This is one of things about Autism that I think that parents of typical kids sometimes take for granted. Sometimes.

After that, we kick dirt & pebbles, and giggle. A lot.

What little boy wouldn't like a lot of dirt and pebbles for kicking?

Then it's my favorite part. We sit.

He runs right to "our" bench and we just relax. We watch people and we listen.

We just sit.

Have you noticed what I haven't mentioned?


For some reason, he rarely if ever stims in the rose garden. He sits, and plays, he giggles and he's super interactive.

It's The Magic Garden.

What's funny to me about the garden is it's filled with roses. I hate roses. Hate them.

My kid, is calmed in a Rose Garden.

Bring on the roses!

Lastly, in my previous post I talked about "The Moment". That moment that you connect and you know your kid is with you, in "the moment".

I finally was able to get a photo.

So, now you understand. You can see why we do what we do. Why we schedule therapies for hours after school, reinforce good behavior, and say "Quiet hands" til the cows come home.




Wednesday, September 5, 2012

One is the loneliest number

Normally, I try to make the focus of Owen's blog to be about his accomplishments and the amazing little person he is becoming-- but I have to say, as thrilled I am for school to start, because he needs it--I am so bummed that he's in 1st grade and he's at the level he's currently at.

Now, people can read this and say "He's come so far!" and that's true.


He can't tell me what he'd like to wear on his 1st day of 1st grade.
He had no interest in picking out his new school backpack.
He can't write his name.
He can't read.
He can't use his voice to say his name.


Say it. It's not hard for you or I. For Owen, he very occasionally will say what sounds like "Oh-pon" and you can see how hard it is for him on his face. It's hard for him.

Can you say your name? How easy does that come for you?

I think you get the point.

There a few times a year that Autism really gets to me, and the 1st day of school is one of them. He won't be able to tell me what he did at school, or what story his teacher may have read. I have to read a note home from his teacher that will just tell me if he ate some, most or all of his food and a quick blurb as to a highlight from the day. I live for the blurb. LIVE for it. I rip open his backpack outside to see what he did and then get in his face to ask him if he liked "5 little monkeys" on the iPad at school or what ever the blurb says.

Then I hold my breath and wait for the moment of possible recognition in his eyes. That fleeting moment of connection with me and Owen. When it happens, it's magic.

It may sound like nothing, but it's not-it's everything.

And it sucks when he just runs away stimming.

So, tonight and probably tomorrow, Autism and Apraxia-I will hate you. Sensory Integration Disorder, I will despise you when by dinner time tomorrow I am battling to stop him stimming constantly because he is so overloaded his hands are flapping a mile a minute.

I will get over it. Owen and I have way more important things to do.

And we will do them.