An Open Letter

Dear Stranger who just happens to find

The drama and troubles that weigh on my mind,

Who stumbles upon my tantruming son

And shakes your head at what’s being done.

I know his cries are loud and distraught,

But cries for your stares are one thing they’re not.

You look at this shouting, inconsolable lad

And assume his parents must be horribly bad

To have produced an action, a child like this

But the truth is something you probably missed.

The word is autism and it’s not always nice

And though you mean well I didn’t ask for advice.

But go on and stare; I’m watching too,

But I’m not thinking the same thing as you.

I’m not as worried about the noise,

Instead I’m thinking about two boys.

The one shouting who is drawing your ire

And the one whose silence you seem to admire.

I think of a world that can’t help but leer

At the child I love so well and so dear.

The stares help, they truly do,

To remind me we’ll never be like you.

Don’t worry; it’s not him that you’ll bother,

The only ones you’ll hurt are his mother and father.

But stare, go on and stare if you must

With your mouth open wide; face full of disgust,

I’ll walk by and try to remain quiet,

Secretly thinking, “If it’s so easy, you try it!”

Children cry, you may have seen it before

So please don’t make me walk with eyes on the floor.

Instead of a stare, try maybe a smile

It might help as I pass through this little trial.

And maybe, just maybe, the next time you see

A child who’s not quite like you or like me

You might see yourself walking in their shoes

And maybe even broaden your views

To accept my child different from your own,

But a child who need not stand alone.

Latest & Greatest Invention

Ladies and Gentlemen, step right up! Come be the first on your block to buy my newest invention. The Kiddie Interpretation Device or K.I.D. will let you know what your child is thinking before they begin to speak. You don't believe me? Allow me to show you some examples...ok, a lot of examples.

Here the child is saying, "I love this park and I'm never going home! I love you, park, I love, love, love you."

"Shouldn't someone be making sure I don't fall instead of taking my picture?"I apologize for how dark this picture is. You can see it if your screen is tilted just right. Here our subject is thinking, "I am the master of my fate: I am the captain of my soul." Such a deep child. "I love applesauce and it's so nice having a bald house boy to clean up my messes!" "Having read all of the literature on the subject, I must now ponder the subject.""They're never going to feed me. Looks like I'll have to fend for myself again."

This one may be hard to guess this one, but he's thinking, "I am really happy."Same here.

Avi is thinking, "You better get the picture the first time; I am NOT doing this again."

Itai is thinking, "Is he really going to kiss me or am I about to get tackled...again?" "Mommy and daddy really left me with this guy? They're gone for 30 seconds and look what he has me wearing!"

"Is there something on my face? That would be embarrassing in such a public place!"

As you may have guessed, both are thinking, "Open the pool and let us in!" (It opens on Saturday, anyone wanna take my kids to the pool so I don't have to be seen without a shirt?)

"Guess what I want to be for Halloween!"

Are you not convinced? Just let me know where I can pick up the checks!

Where It All Started

Avi and Itai both spent some time in the NICU. They stayed in different hospitals (Itai's hospital doesn't really have a NICU) and Avi's NICU had a reunion on Saturday.

Quick break, I wanted to see if Itai would like Robots, the animated movie. This was his reaction. I guess it's comfortable.

After the movie we headed to the reunion. We arrived to see balloons, the Lifeflight helicopter, hot dogs, popcorn, lots of activities, but most important for Avi, a bounce house. There is nothing he loves more than jumping. Is there a way to make his room into a bounce house? If there is a way to do it Avi would be the happiest kid on Earth! Maybe we'll replace his bed with a trampoline, he hardly sleeps anyway. :)

Ok...rant over with and now back to the action. (It's 4:00 in the morning, you think I can focus?)Of course it was raining. There seems to be some sort of law that says our outdoor activities must have rain. Avi started running for the bounce house by way of a generator so I had to run and catch him. The rain created a big marshy area in the park. Avi missed it but I, wearing my new sandal-like shoes, went straight into it. My shoe and sock were soaked with muddy and very cold water. Avi went straight to the bounce house and naturally Itai needed to follow. They were cold, but out of the rain. Debbie and I however were not so lucky. We were getting drenched and cold and my foot as I mentioned was already went and gross. Finally we had enough and decided to pull them out. avi was not very happy about this, but the promise of a brownie held him for a littlle while. We got to see the Occupational Therapist (OT) who saw Avi from birth to around 18 months. She loves Debbie. After eating our brownie Debbie and I decided to leave the cold and wet park. This was the end for Avi; he couldn't forgive us.

As we were leaving we ran into Nurse Debbie, Avi's primary nurse. She took care of him whenever she worked. She really loved him. Debbie and I were a bit nervous about her at first because she bought him a stuffed animal and an outfit and said she just wanted to take him home. :) So we started out overprotective, at least we mellowed out a little bit right?

We had a nice visit with Nurse Debbie. She was really happy to see Avi, even though he was grumpy. She told us how honored she is to have taken care of Avi and how great it was to see him again. Sadly, I forgot to get the camera out and get some pictures.

As we drove away the sun came out and warmed the park and the reunioners who were brave enough to stick around. Just our luck!

Guilty Pleasures

A lot of people have guilty pleasures; something they love to do, but don't want everyone to know about. There are lots of guilty pleasures out there. Maybe sneaking that favorite sweet, a favorite TV show or movie, a secret song on your playlist you don't want anyone to know about or even staying up too late.

Staying up late is one of my favorites. I hate it, but I love it. I have others, but lets go ahead an leave it at that for now. I may have staying up too late on to Avi. He refuses to go to sleep at a reasonable hour. I don't mind him staying up late every once in a while. It can be kinda fun seeing him playing while most kids are fast asleep. The only problem is that it makes the mornings very unpleasant. He has to be up early for his school so late nights don't work well. After staying up late one night Avi was fast asleep when he was supposed to be awake and eating or in the bath. Finally, I had to wake him up and send him downstairs. I picked out his clothes while he started down. I found him like this:



That's right, he fell asleep on the landing! He was snoring on the floor. :(

Itai has his guilty pleasures too. First off, he loves being the bully. He doesn't mind pushing Avi off of a slide, away from his spot in the tub and whenever else he wants what have has, is doing or is even looking at. One of his favorite guilty pleasures may be genetic too. He loves snacking. I've cursed him. He really enjoys his cookies, crackers and cereal. He also loves his chips. His favorite are Cheetos. He could eat bags and bags. So what happens when you leave a bag sitting out where he can get it? This:


Ahhh, guilty pleasures. Got any?

A Little Bit of Sunshine

The semester had grown long and I was beginning to wonder if I was going to make it to vacation. Finally after one last final, a night shift and packing like crazy we made it! I was slow to wake up and get packed so Itai looked at me saying, "Move it Abba! I'm ready to met Mickey Mouse!"

Once everything was packed and we were finally on our way excitement gave way to miles of boredom. Itai liked his movies, but Avi was not so interested. He had to find something else to occupy his time. This ball worked for a bit, also digging in the food bag and treating himself oh and keeping his underwear dry the whole way! I can't tell you how proud I am of this little guy!Itai found his own ways of entertaining himself. Like I said, he liked the movies, but he also like using bowls as hats (dumping his food everywhere), eating, singing five little monkeys and using a remote as a cell phone. After a long drive we made it to our hotel. Both boys enjoyed running around and stretching their legs. Avi, after finally going to the bathroom, started climbing everything. They loved being out of the car. It is amazing how quickly this......becomes this.Avi was out even faster.On our way into California we topped at Calico Ghost Town. My family went there before I was born. They had a bounce house and a lot of old timey things to do there. We went for an old fashioned picture, but didn't get one. :( Heather and Tom did though. Here's Tom with the cousins. And here's our little group hanging out at the mine.

Of course, no trip to California is complete without a visit to (great) grandma's. Avi felt right at home and was ready to explore every corner of her house after giving her those bruising kisses he loves to give.Itai was not as comfortable, but he did spend some time with her. He was happy to sit on her lap without looking around the house at all.The next day was the big visit to Disneyland. Itai liked this visit much better than the last one. He liked the rides and loved seeing the characters. He really liked the stroller we got for Avi.We got to visit Goofy. Itai went straight into his arms and wouldn't let go. Avi still loves Goofy, but since there wasn't room in the hug he decided to explore his whiskers. I was lucky enough to get a huge hug and all I had to do was introduce him to my good friend...Handy Manny!Like I said, Itai loved the rides this time. One of his favorites was Casey Jr. He kept yelling, "Choo! Choo!" His face says it all.

After two days in the park we hit the beach. Avi has been saying, "Want go ocean! Water!" ever since our trip in August. He was not as excite as I thought he'd be when we first arrived, but he warmed up quickly. Itai on the other hand was as excited as could be.

He wanted to walk straight into the water without any supervision or help. Then when the cold waves hit him he just wanted to sit down and get washed away. Finally, he settled on digging in the sand.Avi loved the water too. At first the cold water was too much for him, but quickly he decided the water was great. The sand turned out to be pretty fun too. He loved digging in it and putting it in his hair.

One last trip to the park and then back on the road. Avi was kind enough to supply the paparazzi with this smile before we left.

Now it's back to regular life. Yay!

Culmination

After pestering everyone I know and as many people I didn't know as possible the Walk Now for Autism finally came (and went). Despite the horrible weather we were excited for the event. Last year our team consisted of four people, our kids, Debbie and I. We raised $60.00. This year we raised over $1600! I didn't get a final count on team participants, but this is most of us. Aren't we a handsome group? All these wonderful people came to a blizzard just for Avi!
Last year the walk was much smaller. There were far fewer people and the walk was just around a parking lot. This year it was 5K! Who would have thought? Most of the team made it just fine, but my cute little niece nearly froze. (Don't worry, she got to go California later.)

I didn't include any of the pictures of the boys soaking wet and cranky as can be, but at the end it started snowing/raining really hard. Sadly, we had to leave before they got to do any of the fun activities there. Here are the boys while they were still dry, relatively warm and happy.

I think I'd rather remember it this way than they way it ended. :)