Tuesday, November 22, 2011

He Loves Me

For a child with autism, emotions are tough.  Social inferences and relationships have to be learned. I liken it to trying to teach an alien how to be a human.  The alien can be very intelligent, but they don't know how to be 'us.'

Ethan and I have always had a close connection.  Even at Ethan's farthest times 'away' - when the autism seemed to be winning...he always wanted to have time to be with me.  Snuggling on the couch - no words- were some of our most precious moments. 

May 15, 2011.  Unsolicited, Ethan told me that he loved me for the first time.  Yep, I cried my eyes out.  He will always reciprocate "I love you," but he had never just told me on his own.  He will now tell me he loves me, unsolicited....a couple times a week.  We have that bond and I know that indeed, he does.

Ethan now has a habit of asking me if I am happy.  He seems to really worry about it.  As soon as I pick him up from school "Mom, are you happy?"  Once he is good and awake in the morning; while doing homework; during a tv show.... always worrying.  I try to reassure Ethan that I am ok and that I AM happy.  I have explained that I do not have to be smiling really big to be happy.  I tell Ethan not to worry so much.  Sweet boy.

Tonight at dinner, Ethan once again asked me "Mom, are you happy?" 
I stopped eating and asked him "Ethan, why do you ask me if I am happy?"
Ethan stopped eating and said "Because I love you.  I love you forever."

The way he looked at me and said those words....I could ride through eternity on that love.  I truly must have done something really right in my life to have been given Ethan. 

My cup runneth over...and so does my heart.

Saturday, November 19, 2011

Is this our "First" Christmas?

Christmas always has and always will be my Favorite holiday.  I love celebrating the birth of Jesus and what that meant to us as a World.  I love that people seem to act a little nicer, happier, more hopeful, and generally more....Jolly.  There are so many events to keep us busy this time of year.  Some of my favorite outings is going to the local Craft (crap) Fairs.  Lots of Ladies carrying large crafty items as they struggle to see if the next vendor has yet one more thing they can't live without.  I attended my 2nd Craft (crap) Fair today with a friend.  We left the kids at home with their Dads and off we went.  There were lots of cool Americana home furnishings.  It took lots of self control to not get one of everything in there.  I did manage to find a few Christmas gifts, along with a Christmas dress for Ansley. It was a fun morning.  I saw that Santa was there too.  As we were leaving the Fair, I bought some raffle tickets.  On the way home, I got a call that I had won.  I got home and told Freddie that I needed to go back to get my prize.  No one wanted to go back with me.  Then I mentioned that Santa was there.  Ethan jumped up, ran and grabbed his shoes.  "I'll go!" he said VERY excitedly.

Last year we could not get him to go near the Easter Bunny or the "Normal" Santa.  We had to take Ethan to a Sensitive Santa event.  This event was held on a Sunday morning in the mall.  All of the mall lights were dimmed.  No music played...it was eerily quiet.  There was no flash photography used.  All of the elves understood.  They obviously had been trained to work with autistic children.  This was such a thoughtful event.  Taking a child with autism into a mall, during Christmas is a feat all its own.  The lights blinking, the loud music, the strong scents, then sitting with a strange old guy to get your picture made...with a ka BOOM flash of the camera - it's just too much.  So Sensitive Santa was a blessing.  We got in line and watching as it got so long that it went all the way down the mall and around the corner.  I kept thinking "there are SO many of us.  This has got to end."  Autism can make you feel isolated and like you are the only ones dealing with this.  It is moments like this that make you wish that it could only be us.  We saw lots of kids that were all over the spectrum as far as severity.  I kept thinking how Blessed we are.  "IT" can always be worse.

So Ethan and I arrived at the Craft (crap) Fair.  He kept repeating "Santa is here Mom, right?  He's here.  He will say "Hi Ethan!  How are you?  Are you naughty or nice?"

We went in and Ethan's face LIT UP!  Before we even got to Santa, Ethan waved at him.  Santa waved back.  You could see Ethan's eyes light up.  He was SOOOO very happy.  Ethan has NEVER been happy to see Santa.  Today he was.  We walked up and no other kids were waiting, so we had extra time.  Ethan went right up to Santa and said 'Hello.'  He then crawled up in Santa's lap.  He started talking about Transformers as he gently touched the fur on Santa's coat.  You could see his mind going. "He is real" is what I imagined he was thinking.  That look of joy and excitement is a far cry from the spooked manner in which he used to approach characters. 

We got our picture.  Ethan and Santa.  Holding the proof...I think Ethan floated to the car.  He got to tell Santa he wanted the new Transformer toys, so that should 'seal the deal.'

So while Ethan has been present for 7 Christmases, this will be more like his 1st because he understands what we are doing and why.  And with Ansley being 2 (almost 3)  she will really understand it this year.  What an EXCITING time at our house!  I love my Sweet Babies!!!

Wednesday, November 16, 2011

Ice Ice Baby

I woke up this morning to the glow of my hubby's iPhone.  He was reading the Bible at 5:00am.  God Bless Him.  God forgive me for wanting to (just for a moment) shove him off the bed so that the *BRIGHT* glow of the phone would go away and leave me to my lovely sleep.  - I turned over. Bah Hum Bug.  Fifteen minutes later, I was up.  Who can sleep through the glow of an iPhone?  Ok, so I did get a much longer shower this morning than I usually do. The downside....It.  It!  Where did IT come from?  We have IT on Xbox LIPS, but we haven't played that in a while.  Yet.....I hear IT.

"Alright STOP!  Collaborate and Listen!  Ice is back with a brand new edition."

Oh Vanilla Ice's catchy 'Ice Ice Baby!'  I have heard this in my head throughout the day.  I would somehow manage to mentally find places in the day to insert the lyrics.

A friend calls me up to get advice on her situation.
"If there was a problem, yo I'll solve it.  Check out my hook while the DJ revolves it"

Go to pick up Ethan from school.  Ansley says "Mommy, the wind is cold."
"Ice ice Baby - TOO COLD, TOO COLD!"

This has to be a form of torture!   I need this out of my head.  So I decide to sing it until I am sick of it.  So I did.....sorry to say - not much success there.

Afternoon comes and we go to pick Ethan up from school.  He had a good day, as usual.  YEAHHH!!!  I will NEVER get tired of being told that. On the way home, I am singing my beloved "Song of the Day."  Ethan responds "Mom!  Do you still have that problem?"  Y E S honey, I do!

Once we are home, I start going through Ethan's book bag.  For a moment I lose myself as I go through his paperwork.  He is doing SO well.  Then I see the pictures. 

Ethan had school pictures made about a month ago.  His Teacher said that he did not like the photo shoot 'setting,' so he fussed.  The picture they finally got captured his frustration.  He looks incredibly sad and stressed.  I had to stop a minute and think about it.  We are having SO much success with Ethan.  It is hard to think back to bad moments.  No matter how hard we work with Ethan, the autism is there.  No matter how successful he is with life in general, the autism is lurking.  Sensory overload can hit and all bets are off.  It is like having your 'fight or flight' button permanently pressed.  The sudden popping of a balloon, the back firing of an old truck, or even a prolonged time in a loud environment.  All of these things can cause Ethan to react in his 'I'm Outta Here' mode.

"I'm Outta Here" can be a simple "Let's go Mom," to a scared look on his face, to crying, or a complete emotional meltdown. We are going on 6 months since a true meltdown. AMAZING! Many kids with autism have them daily - ALL day.  Ethan's coping life skills have improved dramatically.  We prep him for almost every situation, which is the key for Ethan. We use Social Stories and we tell him the truth.  If he is getting a shot at the Doctor - we tell him.  We explain what will happen, how long it will last, and what his *prize* will be for being Brave.  Ahhh..the Motivators. We are all operating on Motivators, right?

So maybe on picture day, I didn't do a thorough enough job of preparing him.  Maybe I have gotten a little too confident with all of the success.  Sometimes it helps to stop and re-evaluate our plan...and to remember, IT is still there. Ethan's IT has not been conquered, yet. However, it has been put in a pretty well controlled holding pattern. We will get through these small moments...with photo evidence :)

As for my IT - the crazy 'Ice, Ice Baby' lyrics...they were almost gone, when Ansley came into the bathroom this morning saying "Ooooh Mommy, I'm cold - Too Cold."  Noooooooo....

Sunday, November 6, 2011

He got a haircut

Today was uneventful. It was a crisp but sunny Fall morning. We did our usual scramble with short snips of "Hurry" being called out. We were only 8 minutes late for Church, which is a miracle all its own. Ansley went to play with her friends in the nursery while Freddie, Ethan and I went into the Church service. It was a very good sermon. The kind of sermon that leaves you with 'things' to think about. Afterwards we were off to lunch and then Walmart. As Freddie went to do a quick run through the store, we waited in the car - watching Phineas and Ferb. I looked at Ethan. "Maybe not today. He looks so happy. Maybe after school tomorrow." The boy needed a haircut. He needed a good haircut a month ago. But I keep subjecting him to "Mama Cuts" to not have to deal with what might happen at a hair salon. For a child with autism, the simple errand of getting a haircut can be a nightmare for all involved. In Ethan's defense, I get it. I am asking him to sit in a chair that squeeks, spins and has a weird booster cube in it. I then ask him to let a trendy girl with BRIGHT hair come at him with buzzing clippers. Oh and ask him not to worry as his hair falls off. I get it, babe. But Mama Cuts needs a fresh cut to keep up.

But he looks so happy. Am I really going to ruin our day. Yep...

So when Freddie comes out of Walmart, I ask if he is game to go get haircuts. Freddie was more than willing. I turn around and break it to Ethan. Putting on my "Happy Face" I explain that Daddy needs a haircut. "Since we are going to get Daddy a haircut, let's go ahead and get you a Big Boy cut too."

Wait for it.....The smile turns into the blank stare....Wait for it....

"ok. But Fox NFL Sunday after the haircut?"
"YES!!! We can watch anything you want to see when we get home!"

I watch as he mentally sizes up the deal. "ok Mom."

Did he just say ok?

We all get out and pile into the salon. I am ready to 'inform' the trendy stylist. I have the whole explanation down. I am an expert of sorts at making this haircut thing happen, no matter what. However, I have to be ready to do it. If I am not in the frame of mind to wrestle the bear, I don't even attempt it. Today I feel the Force. Let's do it.

I say this knowing the history of such events. The crying, the fighting...knowing that once I say we are doing this, that we have to.

Law of Behavioral Principles - If you provide an escape versus finding some way to work through a situation, you do so knowing that it will be 10 times worse on the next attempt.

So once we decide we are doing this...we ARE doing this. Ugh.... It would be so much easier to give up. To pretend I do not know this. To say "He has autism and cannot help it" and then walk out. But I know his limits, as well as his strengths. I know that if I cave and let him be weak, that he will pay for this as an adult. Life skills. Coping. Strength. Autism ain't for wimps.

Taking a deep breath and putting on that fake smile, we open the door and go in. They are ALL trendy girls. Visually confusing for Ethan. At least he only stares versus asking questions. We sign up and wait our turn. I whisper in his ear, telling him how Big he will look with his new hair cut. I remind him that we will see Fox NFL Sunday when we get home...that I have a lollipop in my purse....that his teacher will love his new haircut....how fast it will go...
I am starting to panic.... a little. Ethan nodded his head while staring off, in his own World.

"Ethan, you're next." *** inside voice*** thanks, I think we'll run now****

So what happened? He got a haircut. Nothing happened. No whining, no fussing, no freaking. Nothing. He smiled and answered the stylist's questions. He was charming.

She had no idea.

We did not cause a scene. There were not looks of sympathy. We did not have to hear about someone's friend who has a kid with autism. How bad off that kid is. How that child doesn't talk and how lucky we are that Ethan isn't worse. It is exhausting living with autism. Having everything rotate around that one word. Trying to weigh the 'is it worth it' factor.

Ethan got invited to a birthday party - at a skating rink - Is it worth it to try? Worth it defined as: Is there a chance he will like this or are we just gonna torture him by taking him?

Today is was worth it. It is a life skill. One that we conquered at our previous station but had yet to conquer here.

Today was uneventful. Our son got a haircut. He went in, got it, we paid and we left. Just like everybody else. Oh yes...AND he was charming.

autism - you are losing.