Dear Katy Perry

Dear Katy Perry,

You are my 100th post here on Owen's Inchstones and honestly I never would have thought that I would be writing about you, because quite frankly until I viewed your "Night of Too Many Stars" performance with Miss Jodi DiPiazza--

I hated you.

Yep, I was a Katy hater.  Your colored hair, funky nails, MTV performances, your love of Hello Kitty.  Everything.  Then, you got on stage and gave your time and let Miss Jodi do her thing and I realized that I shouldn't judge you.

Just like people shouldn't judge Owen for having Autism or Apraxia.

Now, people can read this and think that it this may sound silly, because we don't know each other.  You have no idea who I am. Well, I am Owen's mother.  He is 6.  He has red hair, blue eyes, a laugh that is infectious, likes to play hide and seek, likes to joke.  An example is today when I asked him what my name was, he told me "Rarah", which is Sarah his speech therapist who he adores, and then bust out laughing and said "Mama" when I asked him if he was sure.    This was huge because he's Apraxic.  I have no idea when I'll hear Mom again, but hopefully soon.  The bottom like is I don't want him judged.  I want people to see him for the amazing kid he is.  I'm lucky to be his mom, just like your mom is lucky to be yours because to her, you're just Katy, not Katy Perry the singer.

So, Ms. Perry, I was judging you.  I shouldn't have.  Your performance was amazing, Jodi was wonderful and I bawled like a baby when she hugged you like you were Christmas Morning and her birthday rolled into one.

So, will you read this? I don't know.  I do plan on tweeting it to you.  I hope you retweet it.  If you don't it's ok, because I'm now a fan and I'll cut you some slack.   I can only wish that one day if someone inspires Owen the way Jodi looks up to you they give him their time and help him have his moment.

Owen's Mom

Could it? Is it? Maybe? Possibly? PLEASE?

WARNING: A LONG ONE!

Back in July, we went for a consult with a new DAN!, MAPS, Biomed professional.

I felt like I cheated.

I know it's silly,  he's been so nice and helpful, but I felt like we had run our course.  I felt like I needed to go see someone who saw MORE of the kids like Owen, who more of the Moms were recommending, etc.

So, we saw Elaine Hardy.  Elaine is the Big Kahuna of http://www.holisticfamilyhealthcarepc.com/. When I went to the ARI conference in April, she was the lady that had the room buzzing.

Now, I see why.

Back to July, we went to our appointment and she was in a word, wonderful.  She was knowledgeable, very informative, spoke "Mom" (Yay!) and had us to a battery of tests that she felt were essential to the next step of Owen.  It took us forever to get the tests done and back thanks to a bad urine (not enough) sent the 1st time and we got our results in September.

Flash to our results, we found out oodles of things about the boy.  Gluten Free/Casein Free diet-- Yep, time to go back, the boy has sensitivities and is allergic to Milk and Casein.  Cheese-Check, Yeast? Yep, Brewer's and his brother Baker's are part of the Allergy Family and his gut was chock full of yeast-again.  Oh, and to add some fuel to it, his body is allergic to the yeast, because really, why wouldn't it be?   She also had us restart some supplements and try some new ones.  The amount of supplements the boy is taking went down, a lot. The price, not so much as they are the expensive ones but if they are essential as she felt, we were down for it.  I was also down for trying it again when she told me and I quote:

"I want you to know that I have a treatment plan in mind for Owen.  This isn't a case of trial and error, and I feel he has room for a lot of improvement."

Um, Yes, PLEASE!

We started everything a few days later, and he seemed to be a bit calmer, but I wasn't sure.  Is it an off day? Is he getting sick? I am just used to it? I wasn't sure.

I got the 1st Cold Probe back from his teacher and it was great.  In fact, it was the best progress report I had seen from the young Conroy in many, MANY months.  I got excited, I let my mind start thinking "What if?"...

I decided to chalk it up to school being back in session, more iPad time, etc, but then..

Cold Probe #2.

And it was good.

AGAIN.

Something was different but I was afraid to get excited.  Then, his private therapists used the words "best session ever", "attention the best it has ever been", "appropriate play for a minute".

I got excited, but I didn't say a word because I was afraid I would speak too soon.  I kept my mouth shut and prayed it would continue, and it didn't.

He started stimming, really, really bad and his energy level was as if he was shot out of cannon on fire.

I figured it was the methylfolate, I let it ride out and 10 days later, I waived the white flag.

I emailed Elaine and told her what was going on  and today she told me to give it a break and stop.  I had already given him the dose today so I figured I'd stop tomorrow and today the little red haired maniac decided to get with the program! Today has been a big day!  We had very basic appropriate play with a doctor kit 2x.  He mimicked everything I did and smiled and was engaged.  We've had the kit since he was 2.  I've been staring at it in his closet for 4 years.  It had dust on the handle.  So many times I thought about giving it away and then I didn't. I just thought "someday" and put it back.  Then, today he initiated Hide and Seek.  Initiated it by hiding under his father's coat, so basic, but it is huge.  He's pretending.   So many people don't realize how everything starts with pretend play, so many people take it for granted but trust me when it's missing in your child's world, you notice it.  It's like the elephant in the room.     Next was the Hobby Horse.  He's had it since Christmas, and in a nutshell, ignored it.  Me, being bold took it out and started to pretend and told him to do it, and he did.  I said "Giddy Up"  but the best part of this is he said "GO".    The reason this is so amazing is that this is what he is prompted when he is at Hippotherapy.  He put the two together and knew.

He knew.

People try to be excited for you when you tell them these things but until you have a child on the spectrum or deal with our kids everyday, many people just don't get it.  They will say "How cute" or "Aw" and mean it sincerely but this is front page news for someone with Autism.

The boy knew!

Finally, the "Oh My God, Jesus, Buddah, whoever" part of today.  He went poop on the potty. Unprompted.

Today is someday and I can't wait for tomorrow.

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.

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.

Example:

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!

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?

Stimming.

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.

This.

Is.

Why.

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.

But-

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.

Owen.

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.

Stimming, Stimming Everywhere..

and not an end in sight.

Owen has been a stimming monster. I've really come to accept the stim, respect it and live with it. It's something his body needs and as his Mom I just need to help deal with it appropriately and not all day. The last couple of days have been, rough.

Owen had oral surgery on Tuesday, he needed a tooth capped and his front 2 teeth removed because, they in a word-died. He fell a few months ago and they started to die, so out they went.

And who thought he could be any cuter?

The stimming? Not so cute. We're line stimming, flapping, TOE walking.. I'm correcting and redirecting, but Wow-- this has been rough.

We also had blood work done! Allergy Testing and Urine OAT test being processed as we speak! $780 out of pocket, still waiting on reimbursement from Insurance! I really hope it comes in soon but I really can't wait for the results! We had Owen's cholesterol checked and I have been reading a ton of information on low cholesterol and Autism/Apraxia. Do I think this is a cure to Apraxia? No, but it's too important to not check out!

http://www.greatplainslaboratory.com/home/eng/cholesterol/role_cholesterol_autistic_behaviors.pdf

Surfing Week 3

Week 3 of Waves of Change, and I missed it.

I had to work due to July 4th and I hated every second of it because I knew I'd be missing this:

I mean, come on, how awesome is this? He apparently had no hesitation this week and was all about Steven. In short, he did amazing, and according to Rich-Steven said he 'may' be up on his knees on the board soon. I can't even imagine it.

I'm so excited but petrified.

I'll assume this is called being a parent.

Here are the photos!

Week 2 of Waves of Change and Marco Popo!

Friday was Owen's 2nd week of Waves of Change and it was HOT!

We go to the beach and the sand was burning hot, Owen looked annoyed and I was a bit worried. We found Sarah and Keri and Steven arrived very shortly afterwards, and Owen had NO reaction to Steven.

I got scared.

I want this to work so badly and Owen to surf this summer that I had to control my panic. But, Steven came up with the game plan and off they went.

And the boy did Fan-tastic!

He did more runs than before and actually got annoyed when Steven did a run solo-he started to run into the surf to catch him. It was so cute! Steven would pick him up to take another run and Owen was beaming every time. Here are all the photos that were in a word-the best.

And in other O news, he was in the pool and other kids were playing Marco Polo and Owen started to say Marco "Popo". Seriously, how cute is that?

Better late than never, Hippotherapy Show 2012

This year I missed Owen's riding show.

It wasn't my fault, I got scheduled on a work trip-- and yes, I was miserable about it.

Normally, we aren't super busy on weekends, but the weekend of May 19th, I had to go away for work to Florida, my mom had hip surgery and then the Riding show.

Totally, totally, sucked.

But, the boy did wonderful, from what I was told.  He was really attentive, paid attention and was all about loving Miss Maureen, his PT.  Owen rode at 230 in the afternoon and all the "fun" stuff was already packed up for the day, so no games, food--nothing.  Just riding, so that may be why he did so great being that there was less distractions.

Here are the best photos that were taken!

Cheesy Face!

Smooching Miss Maureen!