Wednesday, June 5, 2013

Project Lifesaver - Day 1

Today was the day!

We received our bracelet today, and it was hard.      When I saw Owen's reaction it broke my heart.  He didn't understand why this woman was trying to put a "watch" on him, he didn't want it that was final.

He cried, screamed, pinched and screamed NO and GO in both mine and the nice Sheriff's face.

Not Fun.

He cried.

And cried.

And cried.

Then he seemed to be "resolved" to it. He wasn't turning his hand purple like he did the 1st 5 minutes it was on his wrist, and he was whistling.  -- GOOD sign for our little man.    I scheduled the bracelet to come on a Wednesday because I thought if he could go to horseback riding afterwards it might help to distract him--and it did.    After riding and a successful poop on the potty at the farm (Woo!!), I took him to out to eat and for a quick visit to see Daddy at work.  I was thinking that if I kept him out, he'd be distracted and not focusing on it.  It seems to be working so far.

I will truly consider Day 1 a success if I don't wake up to a little boy in my face saying "off".  :)

I also think that they should tell Parents a few things:

1)  Have both parents home.   I knew Owen would be mad, but I didn't anticipate this.  I think if we were both home maybe he wouldn't have freaked SO badly and we could have gotten it on him sooner if we had another set of hands.

2)  The material! It's a hard plastic, and it's not so "featherweight" as they make it seem.  They put one on me so I could see what it was like and I'm worried about Summer. I'm worried about him sweating.   They said I can change the band if I can find something that fits the device on correctly and Owen can't remove.  If anyone has any suggestions, I'm all ears.

3)  Get yourself a watch.  Even if you wear a watch, buy a different one and have the Sheriff put it on you.  I am currently wearing a busted black watch that I had in a drawer that I luckily found while packing to move. Sheriff Debbie was more than happy to put a watch on Mommy and gave us both a lollipop that I had slipped her while Owen was melting down.     When I got my watch put on, Owen was having a fit but he stopped and stared and my wrist.  Yes, he went back to screaming, but he looked.  Point Made.

4) Ask for extra bands.  They have plenty when they come!   If Houdini aka Owen gets his off, I have 2 more to put on before they come back to change the battery.

He's also been checking my wrist to make sure I'm wearing mine.  :)

It was a hard day for both of us, but it was a lot less hard than if God Forbid something happens to my little man.

Fingers Crossed for Day 2!

Sunday, May 19, 2013

#MikelyaLynch, #OwenBlack, #DrewHowell #AutismWandering, #DontJudge

My original post is in regular font.  I've had to update my blog because there has been a 3rd death.  Little Drew Howell.  He was 2.  There are no words.

This post is to honor Mikelya Lynch, Owen Black and now Drew Howell.  These little children had Autism.


They ALL passed away suddenly this week as they both wandered from their families and drowned.

Children with Autism are attracted to water.  I know this to be true because I see it with my Owen, every day.  The boy loves a shower, bath, the pool, surfing.  If there is water, he's happy.

I fear so many parents out there may be judging their poor families, and I want to be sure I say to them-


Children with Autism like to bolt, run, wander without fear.  I have seen this with our Owen just recently as he has  attempted to bolt when getting off the bus and blindly running to the garage for his bike.

Yes, I told him No.
Yes I was was stern.

He did it again the next day.

And the next.

And the next.

Each day for a week it was like a repeat of the next.  I could see he wasn't even thinking of the consequences of me yelling at him. He knows he wants his bike and it's all he cares about for the moment.

Ever since Owen was walking we have insisted on him holding our hand, and we make him look both ways before crossing and most importantly, to wait for an adult.   The last few days, he's been listening by a thread, and I can feel his hand ready to pull away if I let go for a second as I lead him from the bus.

He hasn't been running.  Thank God.  But, he wants to.  I feel it.

So, please don't judge these families.  Grieve for them and Say a Prayer.

If your babies have Autism, please go and apply for the Big Red Safety Box from the National Autism Association.  Right now they are taking applications for families to receive this for free.  We got ours and it will be one of the many things that we will be using in our everyday life, and especially when we move to our new home this summer.  You can get your box here: Big Red Safety Box

Also, make friends with your neighbors if you haven't already.  All of our neighbors right now know that Owen has Autism and is non verbal.  They also all know that if they EVER saw him wandering to stop him.  He is never to be out alone and I've talked to them all.  I will also be speaking to all my new neighbors and giving a fact sheet on Autism when we move.

Next, go visit Project Lifesaver.  In a word, it's GPS.  It's a bracelet or anklet that will help to find your child if they ever wander.    I made my call when Mikelya was found, and I'll be calling again tomorrow to try and speed things up now that little Owen has passed away.  My Owen will hate it at first, but he'll get used to it.

Or just bookmark AWAARE.  It's a wonderful resource for a topic no one wants to face.

Then, Swim Lessons!  We're in the process now of trying to find the right school for our little man and I hope you do the same.  If you live in Monmouth County, NJ and you need help, give us a shout and I'll tell you what I know.  If you have any recommendations, I'm all ears.

God Bless Mikelya, Owen and Drew.  They are not the first to wander, but I pray they are the last.

Friday, April 12, 2013

The Annual Tee Shirt Photo

The annual tee shirt photo is here!! He is now smiling again when I say "Cheese" & never sitting still.  Typical almost 7 year old boy!!

Monday, April 8, 2013

The Sunday before 7

Owen and I went to the park yesterday.  Exactly a week before he turns 7.

Owen is going to be 7.  Holy Crap, that went way too fast.

I have a few traditions for Owen:  First, we take our annual tee shirt photo which will be coming later in the week.  I also try and not rely on my cell phone and take out my camera and really snap some photos of our little man.  Here are this years!

The last one really sums up his personality.  Giggly, cuddly and fun all wrapped up! 

Happy Birthday Week, Owen!

Tuesday, April 2, 2013

18 = HOPE

Yesterday, the little man ROCKED his private Speech therapy.

Our boy said 18 different word approximations. EIGHTEEN!

And, here they are, thanks to our awesome Speech Guru, Sarah, here's the follow up e-mail with an explanation because she's awesome like that and knows I need to know everything:

Wanted to get the word approximation list over to you.  The target word is on the left and on the right is Owen's production, written in a combination of phonetic spelling and the phonetic alphabet.  (If you need me to demonstrate any, I'd be happy to on Thursday).  Spaces indicate a break in the word, during which I provided a verbal or visual cue.  He needed VERY little cueing to do these words though.

hop--ho  p
hoo (Owl noise)--h  oo
oo oo ee ee (Monkey noise)--oowee
roar (Lion noise)--rrrrrrr
pig--pi  g
egg--e  gg
duck--gu  k
yo yo--yo yo
bed--be  g

Good stuff, right?!  The vowel sounds were so crisp and accurate.  I am so proud!!!

So, instead of giving you a big explanation as to why you should Light it up Blue or change your Facebook profile picture as my blog post I purposely wanted to share his latest accomplishment. For this house, Autism isn't just April 2nd, or the month of April. It's our every day and we need to celebrate such a huge session. Owen will be 7, so increased Speech makes this Mom so happy. So, for Owen and all the other kids who live with Autism the rest of the 364 days that we hope you wore blue for- Thank you.

Sunday, March 31, 2013


What parent likes lip from their kid?
This one.
The boy in charge has learned a new word.  YO!
YO = NO and I freakin' love it.  Tell him to go to bed and he doesn't want to - YO! Tell him to go brush his teeth - YO! with an appropriate head shake and all. 
I have had lots of YO this week since the little man was on spring break and it was a tad trying.  Spring Allergies & a boy off his routine make for a stimmy little YO maniac.  We are back on our schedule tomorrow. 
Tomorrow is also April 1, Autism Awareness Month.  But for us, it is our daily life and as trying as it can be, he is awesome, cuddly and oh so funny and Autism is just a small part of him.  If you would like to make this family happy -wear BLUE on Tuesday, April 2nd.  Light It Up Blue, Peeps!

Sunday, March 17, 2013

This Goddamned Ball.

See that ball?  That ball is my archenemy.  The boy has had a long standing bedtime love affair with it. 
In other words, it's his Woobie. 
Now, I am all for Woobie Love.  So help me-I tried to get him attached.  Got him an adorable soft UglyDoll-NOPE. No interest. 
He was obsessed with Little Bill.  He would smile and clap if he saw any little black boy or a woman with dreadlocks because I truly believe he thought it was Little Bill and/or Mrs. Glover herself! SO, like any indulgent parent, stalk the internet for a Little Bill doll for Christmas.
He got one.  Not from Mr. Claus-a generous relative.  It was brand new in the box B-EAUTIFUL.
He pushed it away and did not want to watch Little Bill for 6 months due to Post Traumatic Little Bill Disorder.  Eventually, they became friends until I had to end their friendship because someone liked to stim on Bill's bald head. 
Back to the ball--This he wants.  Tell the little maniac it is time for bed and it is a search mission.  He must have the ball.  He cuddles it.  Holds it while he sleeps --WITH ME! 
The little man had a big time issue with his bed.  Slept with us-FOREVER.  Me, him and this goddamn ball wedged in my back.  He is back in his bed but most nights I wind up laying with him.
And the ball.
I can go with the flow pretty much these days, but the ball?? It has to go but I feel guilty getting rid of his Woobie.  Any ideas?
Anyone want a Little Bill doll?

Tuesday, January 29, 2013

A Hurricane, the Halloween that wasn't and more.

It's been quite a while.  There's been plenty to say, but just haven't been posting.  You could call it a funk, call it lazy, I call it both.   Regardless, to recap the last few months in O's world.

Sandy came to town, and she's a real bitch.

We were lucky, we only were without power for 12 days and went to PA to stay with Aunt Daneen and Co., who have a generator.

Yay! for hot showers.

Boo! for the regression that came over the boy after those 12 days were up.  In short, those 12 days rocked the little man's world.  I have never seen anything like this before with him--something that really shook him to the core and made him regress.  "Bye Bye" left our vocabulary for a while, and Ms. Voula of Village School Fame worked her ass off to get it out of him and Ms. Sarah of the famed Blondetourage has worked equally hard helping him to maintain it.  He was stimmy x 100, and hand licking returned.

Yep, handlicking.  It's disgusting and needs no further explanation.

Halloween?? That never happened.  O's not big on costumes though I had a really cute one picked out and ready.  He doesn't really get the Halloween = Free candy deal and to go door to door and try prompting, etc and working on the social experience when peoples houses were destroyed and many people were just getting home like us after being without electricity for so long--- Not worth it.  So we skipped.

Then, just when I was thinking about updating the blog-- Sandy Hook happened.  No, we weren't "directly" affected by it, but many of the kids who were killed that day had Autism or Special Needs.  One in particular stuck out in my mind for many days.  Dylan Hockley.  He was 6, had Autism and was non verbal.  He also had a 1:1 monitor named Anne Marie Murphy who also passed away that December day. Dylan LOVED Mrs. Murphy just like Owen loves Ms. Susan, Ms. Penny and all the other ladies of Rm 18.    Ann Marie and Dylan were found together.  That was all I could think about and still chokes me up.  People don't realize the bond that is formed in the classroom between students and staff and forget private therapists.  It's amazing.    Sometimes it's like Elvis has entered the building when Owen sees his therapists at Abilities in Action.  Special Strides?  He starts yelling and clapping his hands from the minute we hit the gates of the farm.

So, again, no blog update..

Things haven't stopped for us though!  I've been all things O and working with him in between shuttling him to therapies.  He's doing amazing.  He is amazing, and I'm lucky to be his Mom.  

So, there's our update.  More fun to come.