Keeping Pace

After a nice memorial day weekend in VA I think I have come to some conclusions.  You have done extremely well in some areas since moving to Ohio and struggled in others.  It has been more of a balanced life but still pieces have been missing.  I have realized though why some things are working and trying to figure out how this fits into our future.

Northern VA is very fast paced - its one reason I loved it so much.  For you though, I think it is too fast.  I think that you don't have time to process everything going on around you.  That everybody is already five steps ahead of you, thinking about what they will be doing next and where their next turn will be, and you need time to think.  You need an environment with patience.  Where people are really not in a hurry and give you a moment to understand, to learn, and to respond.  When we are in VA (whether living there or visiting) we are always planning our next move. In public there is always waiting in large groups, constant noise, and then very little time to respond because everyone needs to keep moving.

In Ohio, things are a little slower.  When we go out to eat or shopping the employees will wait for you.  The are drawn to you and seem to understand that sometimes it just takes a minute.  Nobody ever seems rushed and the atmosphere is just one that is much more relaxed.  This is hard for me sometimes because I want the world to move at a faster speed but for you, it is where you thrive.

This last weekend in NoVA you didn't use nearly the amount of verbalizations you use in Ohio and you didn't care for the device.  You did use other vocalizations (not words, but sounds) and you used pointing or pulling to draw in peoples attention to try to meet your needs.  You also expected things to be given to you and your needs to be met more so then voicing your opinion as you do at home.  I am sure some of this is due to a sense of learned helplessness and a level of expectations from those around you but it also has to do with the environment.  There was just so much going on that I am not sure you can slow yourself down enough to focus.  It takes so much for you to think of the right word you are looking for and then to say it correctly.  It takes even more for you to do this when other little ones are running around and the world doesn't know what you can do so they just assume you can't.

Realizing all of this doesn't lead to drastic changes but it does help me keep your focus.  It helps me realize that you need more time to process.  That you need to allowed to have a second and you cannot feel as if there are time constraints.  I think it also sheds some light on your behaviors and that maybe instead of pushing you through we need to step back explain.  We need to help you understand and give you the words for what is occurring and also give you a way to say "slow down" or "stop" when you need the extra moment to regroup.

Keep On Truckin Baby
Love
Mom

"Do you wanna ...... "

I think somebody sounds like a broken record and it is not you!  The more language you develop the more I realize that I need to mix and vary what I say to you throughout the day.

Recently I have heard you very appropriately saying:
"do you wanna eat?"
"do you want juice?"
"do you wanna open?"
"do you want on?"
"do you wanna help"
"do you wanna.......?"

Umm... well, if I were you I would finally be saying "no" also!  What I must sound like to you all day! I finally sat down today and made a list of all the verbalizations you are saying these days and whether it be single words or repeating the phrases you hear me say all day long, you have well over 60 words in your vocabulary now.  On top of this, you are finally at a stage of repeating the majority of what you hear, and trying hard to request using your language.

Me, sounding like a broken record, is probably driving you insane and you are showing me that you can learn so much more.  This is also a very hard stage.  We have pushed and provided all sorts of augmentative communication for you and by no means are you ready to completely give this up. The AAC devices have allowed you to communicate your wants and needs in more specific terms such as wanting sprite versus water, to stop doing homework, that you don't want to eat my cooking, or commenting "wow" after using the bathroom.  The device allows others to understand you given your delays in articulation and it also allows you to take ownership of your language instead of waiting for someone to help you find the words.

But now, I see you growing and expanding.  I see your motivations changing and trying so hard to keep up with the world around you.  The device is still here, it is always available, but you want to be heard.  You want your own voice to be heard and you have so much to say.  I wish I could understand more then the 60 words.  I wish your friends and those we meet on the street could understand more so that you didn't need the device anymore.

There is so much progress though.  It is all there and inside of you and I know that if we can continue at this pace and let you take the lead now then it is all going to come out.  You have already demonstrated your personally and that you have the strong desire to interact with all those around you.  You have already shown us that you have a story to tell and that you will take the world by surprise one day -when you are ready.

For now though, I sit back and smile and know the secrets you hold on tight to.  I know the look in your eyes and the smirk on your face when you are pulling one over on others.  I know the glimmer of hope as you ask for "candy please" knowing you just had ten pieces but that I can't say no to your sweet little voice.  I know the excitement when you see children playing and the spark when you make a new friend.  Most importantly I know the pride and self-confidence that you get out of bed with every morning that allows you to experience it all and has helped you thrive in your life.

Keep on Truckin Baby
Love
Mom

Who Got Who?

Today is truly a day for celebration.  Not only is today Mothers Day but it is also your "Gotcha Day!"  Two years ago today Nancy and I found ourselves on an airplane on our way to pick you up.  Adrenaline running high, no time to think of the unknown, and just praying we made it through the plane ride home once you were in my arms.  Of course, as nothing works out perfect, we ended up missing a flight and your team of social workers graciously drove you from Twin Falls Idaho to Salt Lake City Utah to meet us at that airport so we could make our return flight.

With minutes to spare they pulled up to the airport, tossed you in my arms, smiled as they told me you had quite the set of lungs on you, and that you liked the top of your head rubbed.  This last piece of information was vital.  You came with two bags, one with clothes and diapers and another with a few toys you had received in foster care.  This was it, all the belongings you had to show for the first five years of your life.  But boy did your personality speak volumes.

We did survive the trip home, in one piece, and with a little bit of sanity left.  You ate as if you had never seen food before, drank juice and water like a fish, and did not release the iPod I brought for you.  I am not sure reality sunk in for either of us that day or exactly when it would.  We made it home a little before midnight and as Nancy and T closed the door behind them I suddenly realized that it was just you and I.  

There is a part of me that can't believe it has only been two years and another part of me that feels as if it has been a lifetime since that day.  I find it hard to remember my life before you were a part of it and cannot imagine not ever having you in it.  We have both grown, changed, and matured in ways that I never thought were possible.  We have made it through obstacles and challenged each other to new limits.  Everyday I wake up I cannot wait to see your smile and discover a new adventure.  I cannot wait for the first hug of the day or last kiss goodnight.  

Today, two years later, I look back on where we have been and realize just how far we have made it. How intertwined our hearts have become.  How much we are a reflection of each other.  And most importantly, how incredibly lucky I am to have such an amazing little boy as my son.  

Today you are a little spitfire.  Full of yourself and confident in the young man you are becoming.  Loving to test your boundaries and push the limits of those around you.  You have a way of making people discover something new about themselves without even trying.  You have a passion for learning about animals.  Still, your most prized possession and desire is music.  Your love for music runs through you and provides you a sense of security and safety.  It is in your blood and from what I can see always will be.  You are filled with so much hope and determination that I know you will conquer all you set your mind too.  

So baby, I am not sure who got who on "gotcha day" two years ago but what I do know is that I am the luckiest mom in the world to have you as my son.  

Keep On Truckin

Love

Mom

Play Ball!

1...2...3... Strikes and your out at the old ball game?  Well, not anymore.  On this field there are no umpires, no yelling from parents on the sideline, and no stress to make the game winning play.  There are no endless hours of practice or an ace in the hole in the batting line up.  There is no way to get grass stains, streaks of dirt across your face, or raspberries from sliding into home.

On this field there is laughter and chaos.  There are parents clapping and cheering for every player no matter what team they are on.  There is celebration in the small successes and a sense of pride in the children and young adults.  There is rock music playing during the innings, an announcer with a sense of humor, and a party going on in center field.  There are hundreds of volunteers every Saturday afternoon.  Friendships being formed and so much more then the fundamentals of baseball being taught.

You played on a field today where all were welcome no matter their disability.  The game started just as any game would with the Star Spangled Banner being played and the teams lined upon their respective sides.  I say lined up loosely though as you darted across the pitcher mound, another child was in center field spinning in circles, some were crying because they didn't understand where to turn next, and others stood there with their hands on their chest singing along.  This being the first week the volunteer buddies smiled and knew things can only get better as the season continues.

Then the rock music started and the game was on!  In this game of baseball there are only two innings and every child bats in both and everyone makes it all the way around the bases.  For the team in the field they are each playing their own game with their buddies as they field balls, throw a few rounds, and play some games of chase.  Some of the players were content to sit and watch while others were busy climbing the back fence.  Needless to say it was a sight to be seen.

I took great pride in watching you though as did all the other parents.  Having a child with special needs you miss so many opportunities of what is "normal."  Without this league, the hundreds of volunteers, and the patience of the coaches, I would never have been able to sit on the sidelines and cheer you on for your first baseball game.  I would have never seen you hit your first ball without my help.  I would never have seen you score a run for your team.  It allowed me, and all the parents to sit back and watch.  To put our feet up, talk amongst each other, and simply enjoy America's greatest pastime.

So proud of you and all that you do
Keep On Truckin
Love
Mom

Maybe.... Just Maybe

One thing you have taught me is to never take a moment of life for granted.  To celebrate the small steps and be proud of who we are.  You never cease to amaze me and every night as put you to bed I smile at the young man you are becoming.  I cannot say this enough or emphasize to you how much joy I have in watching you move throughout life and discover the world around you.

This week another piece of your wall has come down and you have relaxed.  At school you have been a rock star and I believe you have finally found a place where you belong, at least for now.  In the community you are starting to test more boundaries and be more of a little boy, always fearless and constantly on the move.  At home we are more of a family, laughing, loving, and learning.

The other thing that you have taught me is that this could all disappear tomorrow but we cannot live in fear of that.  If we were to live our lives in fear of what tomorrow could bring we would never be living our life to the fullest.  You have been working hard at teaching me to live my life in the moment and just let the world continue to evolve and shape who we are.

So baby... Maybe.... Just Maybe..... your wall is starting to come tumbling down and with that you have knocked down mine...

Keep on Truckin
Love

Mom