Wonder of wonder - miracle of miracles

And awaaaay we go............

The boys and I had a great day!  We went to the pool! My little guy always knows we are going to the pool when I pull out the beloved Sponge Bob swim suit...."eeeeeeeee!!!" he says as he jumps up and down with wild hand  flapping.  He just loves the sensory of the water and also watching other kids swim and jump into the pool. 

The pool we use is an indoor pool and it has limited hours - so, as I am rushing to get there, my oldest is regaling me with his current topic of interest.....which happens to be the you tube videos called "The Annoying Orange"...(Please see the link to get the full scope of  the joys of this character. http://www.youtube.com/watch?v=le-0eAGuaoo&feature=related)  I try to sway the conversation to other thoughts, but he is happily creating new story lines during the whole ride.  We pull into the parking lot of the pool and little guy goes crazy with excitement which brings a smile to my face because it means he is making connections all over the place in that brain of his! 

I park the car only to hear...

"Mom..can I tell you something?  Look!  I just found my first chest hair!!!!!" 

"What?", I exclaim, "Let me see!" 

"See - it's right there!" he says as he points to his hairless chest....

"Where?" I say..

"Well it WAS right there, but I picked it off because I thought it was an eyelash or something....WOW....my first chest hair!"

  Hmmmmmm......it's a miracle!  Right about now, I am thinking that I am not so sure I want to experience the teenage years! 

After swimming, we get back into the car and our conversation about the Annoying Orange continues and branches out to the idea of dressing up as said character for Halloween.  The rest of the ride revolves around choices of Halloween costumes as little guy in the backseat rides happily along in silence.  

Upon returning home, both boys get computer time....L (10 year old) disappears into You Tube land and S (5 yr old) signs on to the Internet and navigates his way to his game site and finds his favorite games.  He is loving the Boo Bahs and the Teletubbies right now...in a few days it will be something else.   His skills on the computer still blow my mind! He can't talk but he sure knows his way around the net! Today he was fascinated by the teletubbies jumping repeatedly into a puddle of water and then giggling.  His face is 2 mm from the screen as his body trembles with excitement!  Constant reminders are needed to sit in the chair and not turn the volume up to ear splitting -make you want to rip your hair out -volumes.  So as I turn the volume down on the teletubby giggling....I point to each one and count them.  Then I use sign to review the colors of each one and he repeats the sign.  I get to the last teletubby and realize that I forgot what the sign for purple was.  Before I could say anything...S points to the last one and looks in my eyes and says "puh puh" and smiles!!  He has never attempted to say that word before...I know that he knows his colors...but this...this was a breakthrough!!! Eye contact, being in the moment, and communicating...... Every time something like that happens - I am amazed and know that HE IS IN THERE....how frustrating must that be for him? Can you imagine being trapped in your own body - not able to express yourself verbally?

Take a moment and think about  how we have so many ways to express ourselves in this world....Verbal expression is the most common form of communication for most of us. Imagine what stroke victims and Alzheimer's patients must feel as so many are left without this form of communication.  I try to talk to S as if he understands what I am saying.  I feel this is extremely important. So many times I think people simply do not know how to deal with these differences.  Differences are scary because without knowledge - there is fear.  Fear of the unknown breeds ignorance....Ignorance breeds missed opportunities.  People with disabilities are just like you and me....we are all trying to find our place in this world and we are all seeking acceptance.  

Me :  "Know what I mean jellybean?"

L:  "I know what you mean...gum drop...."

Smile.....sometimes a chest hair...is just an eyelash.....;-)

~Kathryn

 

A day in the life....

Anyone out there that is a parent knows what I speak of when I talk about loving someone without reservation...loving someone unconditionally...loving someone so much it makes your heart ache with a joy unequaled by anything on this earth.  You also know the weight of responsibility resting squarely on your shoulders as you make those all important decisions about what you want your child to experience and what lens to use to view the world. The responsibility of the knowledge to give them the tools they will need to navigate their way through this confusing and wondrous journey we call life. 


As you can imagine, when you are given the diagnosis of autism for your child....there is... a sense of loss. Everything you envisioned life would have in store for this child has now completely changed....in an instant.  At the time this happened to me, I didn't want to believe it...I wanted to pretend it wasn't there...I told myself that it would all be okay - we just have to work hard to catch up and he will be right back on track...he's just delayed....no big deal.  Then you start thinking...what did I do to deserve this??  Why is this happening to me?? I am not equipped for this...what do I do wrong? WHY ME??  As time went on, I had to come to terms with my grief and think of it in a different way...yes this was happening...no, I didn't do anything wrong..and most importantly...this wasn't about me! Get over yourself, Kathryn!  This was about a child that needed me to advocate for him to be a part of the world. As hard as it was for me to wrap my mind around this tragedy...think how hard it was for my child.  The next step was to look ahead to the future and find ways to help my child be connected to the world around him. I have spoken with several mothers that have gone through this and we agree that it is a sense of loss...just like when you mourn someone you love that has died...you have to go through the stages of grief before you can move on.  I will not experience the communication and milestones another mother with "normally developing" children will experience...I do mourn the loss of that, but on the flip side - we have learned a new "language" and have morphed the term "normal" into something that works for us.


Have you ever wondered what "normal" is?  I have come to the conclusion that "normal" has a different meaning to everyone out there.  In my household, normal is ......

• running around on our toes and rejoicing in the sound "eeeeeeeeee"
• watching the same part of a movie or computer game over and over again...rewind-fast forward-rewind-fast forward...it could be the visual or the sound or the combination of both that we get hung up on...thus causing great excitement and hand flapping and jumping
• sign language is an emerging skill
• textures of foods and picky eaters leave something to be desired as we usually have 3 different meals on the table at one time
• getting angry at the drop of a hat because we didn't understand the concept as a joke
• learning a skill and then having to learn it all over because it is like we have never seen it before(even though we have done it a million times)
• getting stuck on a topic and only talking about said topic 50 gazilliion times no matter what is being talked about....everything relates back to said topic
• taking medicine 2 times a day
• therapy and counseling 3 times a week
• go potty...go potty...go potty...go potty...is our mantra!
• eat food...eat food...eat food...eat food...is our other mantra...
• sit chair...sit chair....sit chair...sit chair....is mantra #3
• routine is EVERYTHING!
• homework is a VERY long process...the sky is blue...the SKY is blue...the sky is BLUE...what color is the sky??......."greeeeen??" (look of confusion followed by anger followed by tears)
•  someone screaming the phrase "your fired!"

The list could on and on but I will spare you.  My point is that we all have our own "normal".  I love my sons...my "normal" is a ten year old with Asperger's and a non verbal autistic 5 year old. They are the loves of my life and I will ALWAYS fight for them and help them find ways to connect with the world.  


So friends...I bid you farewell with this thought.  Take a minute to see the beauty in your life...it may not look like someone else's beauty...but know in your heart that it is YOURS...appreciate it, give yourself permission to experience it, and most of  all...be thankful.


~Kathryn