Christmas-Oh Joy!!!

Well here we are six days from Christmas; I cannot believe how fast this has approached. I think i have all of my presents bought and wrapped. I put the Christmas tree up with lights, but I never did get around to decorating it. I haven't been able to find my Christmas spirit this year; usually my whole house is full of Christmas decorations and my tree has tons of ornaments on it. This year I am just trying to get through the next few weeks without falling apart.

I never would have imagined when I was pregnant with Joey that we would be where we are today; Joey is a very strong willed little guy and he seems to have a lot of new frustrations and aggressions. He gets mad at me and says "I hate you Mommy" or "I hate my Mommy". I only hope that he doesn't know what that means and he doesn't really hate me. He lashes out at me and scratches and bites me; my right hand is proof of that ;/

It is so difficult dealing with the fact that most people with 6 1/2 year olds are doing play dates, preparing for Santa to visit and looking forward to there child playing sports; not us. I focus on getting through the day, worrying about Joey while he is at School and thinking about what I can do to improve his quality of life. I just never would have imagined I would be where I am today.

I have an unconditional love for Joey that only a Mother could have. I look in Joey's eyes and realize he is not there; I only hope one day he can tell me how he really feels. I will continue to do everything in my power to make sure Joey is living a happy and successful life.

I find myself lately standing in the doorway of Joey's bedroom watching him sleep; knowing that is the only time that his brain actually shuts off and he can have some peace. I kiss his head a million times and tell him how much I love him.

We Did It!!!

We went to the breakfast with Santa yesterday morning at O'Garas and it was wonderful. It was myself, Molly, Joey, David, Abby, My Mom, Aunt Lois, Theresa, Jon, Bella and Sophia. All of the kids were so good and they had a wonderful time. Joey was such a good boy; he only got mad one time when they were taking to long to bring him his food and he started chanting "Joey wants his food" over and over; once he got his food and ate every bite life was good again.

I even got an adorable picture with all four kids and Santa; Joey even sat on Santa's lap; which I was so shocked considering last year he wouldn't go anywhere near the guy. He didn't tell Santa what he wanted, but that's okay.

Joey absolutely loves the snow, not playing in it though just watching it from a far. He gets so excited when he sees the snow on the ground; I ask him if he wants to go outside and play in the snow and he says "No, Joey's okay". He is such a sweet boy.

I am hoping that if yesterday is any indication of how Christmas Eve and Day will go it won't be as bad as I am imagining. I figure if I think it will be a nightmare and it turns out to be; I won't be disappointed.

I am off to prepare for another long week ;-)

A Poem by the brilliant Emily Perl Kingsley!!

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Tears, Fears & the Unknown

Well we made it through Thanksgiving; thank goodness. One holiday down one to go. I use to look so forward to the holidays and spending time with my kids, and family, but now it seems as though I just want to get it over with. Joey does not like anything to change with the furniture so when I move the toys across the room he gets so mad at me. I only wish Joey could understand what Thanksgiving and Christmas is all about; maybe someday, well maybe not!

I was reading an article online the other day that stated that "Mom's of children with Autism have stress similar to combat soldiers, they struggle with daily fatigue and work interruptions. This is the story of my life; most days I walk around trying to remember what I am supposed to be doing, where I am supposed to be going or what I opened the fridge up for. Those were all things I thought would pass after my kids outgrew the infant stage; boy was I wrong. Just sitting in my living room it feels like I am in a war zone; between toys flying, Joey jumping off furniture, kicking and biting me I can see where the similarities come into play. Not to mention the high pitched non stop squealing that Joey has started doing again.

Don't get me wrong I love Joey with all of my heart, but boy is it hard being a Mother to a 6 1/2 year old boy with autism who functions at a 2 year old level. People stare at us and I am sure they are thinking "what a brat that boy is" well if they only knew. I can honestly say that when I was pregnant with Joey 7 years ago I never would have imagined that I would be where I am today. Still having to change Joey's diapers, feed him, change his clothes, brush his teeth, bathe him; wow was my vision all wrong.

Cory has been working 7 days a week 13-14 hour days so that doesn't leave much time for me or the kids; I am okay with Cory not having time for me, but the kids are a different story. I am very thankful to be able to stay at home with the kids although it would be nice if Cory had a job where he worked regular hours so he could help me out once in awhile. Oh well a girl can dream. I am just so thankful to have my Mom and Dad that live 6 houses away; they are amazing Parents/Grandparents and they understand the struggles I deal with daily and they help me tremendously. We are so lucky that Grandma and Grandpa are both young and healthy ;-)

Well I am going to attempt to take the kids to a santa breakfast in the morning with my Mom, Sister and Nieces. We shall see how that goes, I will drive myself just in case I need to escape early.

That precious face of Joey's makes the struggle worth fighting!!!

Have a wonderful weekend everyone.