{Time to LIVE ~ LIVE ~ LIVE!!!!}

Over the last 4 years Al and I have worked opposite shifts to limit Michael’s need to be in someone else’s care. I have to say this has been really hard for all of us {Al working Mon-Fri, me working the weekends}.

It is TIME for a change, TIME for us to connect as a family. It is TIME for us to enjoy our family again.
I feel we have been doing a decent job at juggling family time and our need to work but it is taking its toll. We find ourselves feeling more like roommates and caregivers than husband and wife or Mommy and Daddy. We find ourselves feeling trapped.

Every 6 months I am faced with changing my schedule at work. This usually brings me a great deal of anxiety as I am not one for change. This shift in schedule also tends to take a toll on Michael as he also likes to have a routine.
This time it is different. This time I am looking forward to the change. I think for the first time in nearly 10 years of employment there.
With this change will come a bit of a financial decrease but the benefits far out way the lack in income.
Since Michael has been born we have only been on 1 family camping trip when he was less than a year old. We honestly have been fearful of taking him anywhere overnight as he hasn’t quite grasped the concept of an inside voice or how to behave himself in public {we are working on it believe me}.
We tend to do everything based on “is Michael going to have a melt down?” We assume he is going to have an issue because time and time again we face the evil stares from people when Michael displays his dissatisfaction in public places.

Michael has many autistic tendencies but the only way we are going to get him to learn to function in “the real world” is to go out there. Be apart of society and LIVE our lives.

No more will we live our lives for other people to make sure they are not “inconvenienced” by us. They can just deal with it. They can be as upset as they would like or give us the look of {can’t you control your child} all they want.
There are a lot of people, places and things we are missing out on.

It is our TIME to live life and set ourselves free of this prison we have created. This summer we are going to have A LOT of firsts. I can’t wait!!!!

{The Rollercoaster}

We have all been there at one time or another, on a roller coaster as we are pulled up the chain driven track of the very first hill and over the intercom we hear.
“Ladies and Gentlemen please stay seated and keep all hands and arms inside the ride at all times until it comes to a complete stop.”

We reach the top and excitedly we put our hands up, take a deep breath and prepare for the exciting ride that lies ahead.
As a mother with a child who has many autistic behaviors life is like riding a rollercoaster. Exciting and scary all rolled into one.
The other night we ventured out to wish our extended family a safe journey as they were moving away, we didn’t even get into the door before Michael was clinging onto his daddy like we were going to box him up and send him on the moving truck with them.
Like a roller coaster that you have never been on before you never know which way it’s going to turn. One minute you are holding your hands up in the air smiling, screaming out of excitement, enjoying the ride, and the very next minute sometimes very next second you are hitting a sharp turn on the track you didn’t expect and scared beyond words.
We try to keep things predictable “the same” we have our daily routines.We hit the floor running when we hear “HELP! WET!” knowing that our precious has decided to wake up and has soaked through his jammies and bedding in the night, we have our medicine routine and let me tell you we hate that part it’s always a fight. Then we have play time that usually only lasts for about an hour before we start going into the first scary downhill drop on the roller coaster ride we call our day. After that we have to lay him down bottle in hand and put up a sign “ride closed for repair” as our morning nap is needed.

Running errands is NOT an option, not unless I want to be so emotionally exhausted by the end that I have nothing left to give. Christmas this year at Grandma’s is not going to happen as Michael is so terrified of the dog that he screams when he even sees the street she lives on.We want to be able to go Christmas shopping together but we can’t because it is all way to much for little Michael so I resort to online shopping otherwise the car de-rails and it takes days to repair the ride.
Needless to say just like a rollercoaster just as soon as you hit a hard left or right, you have a calm moment even still you are anticipating the next sudden drop or hard left.
Don’t get me wrong, the rollercoaster isn’t always a scary thing. It also can be so utterly exciting.
For example, when we are driving around at night during the holiday season and all of a sudden you hear from the back seat in the most excited tone ever imaginable, not to mention a word!, an actual word we never thought we would hear come out of Michael’s mouth, “LIGHT!!!!!” So loud and so full of excitement you jump. Or, a commercial comes on for a toy and you hear “WHAT’S THAT? WHAT’S THAT?” with his little hands rapidly doing the sign for “WANT” indicating that he wants the item for Christmas.

In those moments you can see and hear the excitement so much that it takes over and you yourself become just as excited about the light or the toy as he does. You become ONE with the ride.
Just like a rollercoaster there is no middle ground you’re either excited or scared to death.

We are learning each day to love this life of the rollercoaster.

{Find the humor...It won’t kill you}

This one is dedicated to all my friends in the SBH group.

Today I have been writing back and forth with other parents in an online group we belong to. We all share a common thread. Our children are all very special, they all have brain abnormalities.
One of the common things we all share with this abnormality is autistic behaviors. Over time I have mentioned the difficulty of the behaviors but, I have not mentioned the humor that can come along with it.
Ok, so I am sure you all have seen Rain man. I know those of you who are not in our position may think this a cruel analogy but it rings so true. In fact I love that movie and its very existence so much because it helps me step back and find the humor in it all.

Me “Michael do you want a sandwich?”
Mike “light”
Me “Michael do you need a diaper?”
Mike “light”

Me “Michael do you" …. Me interrupted..Mike “light”

Everything in Michael’s world revolves around a light right now.
When ever he hears an ambulance he yells “light” because they put a light on his finger to monitor his heart in the hospital. When we are watching Grey’s Anatomy everyone on the show needs a light.

Light, Light, Light, Light, Light, Light, Light, Light, Light, Light, Light, Light

Sometimes I find myself breaking out in song “There’s a light…over at the Frankenstein place” from the Rocky Horror Picture Show. Just because I have to interact with the word so it doesn’t drive me crazy.
I suppose I could sing “this little light of mine” but I find the other more amusing.
Moral of this is, embrace the difference, play with the words, and laugh at it, Its ok go ahead and laugh, it is funny at times and this life is far to short for us to get irritated by all the little tics that come along with our differences.