Hi there everyone!  My internet has been on the fritz this week so I've not had a chance to write much.  Cody had his VNS turned up another notch Thursday.  Haven't seen anything bad from it - although he has had a few seizures since then.  I'm pretty convinced that he started to have a gigantic seizure at 6am and I laid the magnet on top of it and (I think) it curtailed things.  He seemed to stop short of going on and on and on with the no-breathing, blue lips, screaming part of things.  So that was interesting.  We still have a long ways to go before it's at maximum warp speed - about 3 months in fact.  But it's nice to see these little signs that perhaps it's doing something.  Course the jury's still out. 

Today I went to our church's women's lunch - what fun!  Yummy food, great chatting, and a great speaker.  My mom came with me and she is always the life of the party.  Don was kind enough to take both boys for a few hours so I could get away.  Boy was that nice! 

My new project is (drum roll please) Don and I learning sign language!  Seeing how quickly Cody picks up on signing and how much he seems to enjoy it, we were encouraged to learn as much as we can.  Unfortunately he's somewhat limited as to the signs he can make because of his fine motor challenges, but that doesn't mean he can't understand sign language.  So the more we can sign TO him, the more he will eventually see signing as his "words."  We'll probably ultimately do a combination of sign language along with pictures to help him communicate.  Right now he's way more excited about signs so we're trying to get ourselves up to speed.  One more thing.............but I'm kind of excited. 

At that women's lunch today there was one woman who was either deaf or hard of hearing, because she had an interpreter signing her the whole presentation.  It was really sweet to watch.  Although I got teary watching them - seeing the interpreter fluent in sign - moving her hands a mile a minute - with the sweet audience of 1 looking at her gratefully.  For some reason is struck a deep chord about Cody.  Here we go with yet 1 more thing to try to improve his life.  Watching the interpreter made me think - "that will be me for the next 40 years - making words with my hands instead of actually talking to my son."  Today was a day I did NOT want to cry - but you can never control what sets your tears on edge, can yoU?  For me, it was watching the sign language in action.  Seeing a visual trigger to remind me that my life is not what I want it be.  That I don't want to have to teach Cody to sign, I want him to TALK to me.  It's interesting when you live this life -- how you acknowledge as I did today -- "uh oh - this is one of those pain-filled moments" and you kind of brace yourself against it.  Because you know if you feel it's full weight you'll blubber and it will be a scene - and for once you'd like to be out with people and not have your child, your sadness, your pain be the focus.  But occasionally I'll be gripped by a moment and it catches me off guard.  Sometimes it's sitting behind the high school boys who sit in the back row at church.  Seeing these tall, broad shouldered boys/men sit there in front of me always triggers a deep sadness.  Where will Cody be when the high schoolers his age sit in that back row?  Will he be walking in circles in the back of the church shrieking?  Will he be in a separate room because he makes too much of a commotion?  Will he be sitting next to me needing constant supervision?  Too much to ponder. 

Don was changing Cody's diaper today and he said, "I can't imagine doing this when he hits puberty.  How will that work?"  I just gave him a knowing look - a look that said "I don't know."  While I get so excited at all the progress he's making in therapy - it is always balanced with knowing how desperately globally delayed he is.  I took him to the U-Village because we had a half hour before we were due at Children's Hospital Thursday.  There's a little play area in the courtyard by the stores that I took him in.  And it was a reality check.  Yes, it's true that he's doing new things we never thought he could in his therapy and with signs.  But it's also true that he is a wild animal outside a confined, structured space.  He just wandered around the play area screaming, pounding his head with his fist, clawing me to be held, having no idea or concept of checking out the slide, the toys.  He just leaned down and touched the ground many times - and the chain link fence.   I picked him up and walked back to the car.  You'd think I'd get used to those experiences but I never do.  Why is that?  Is it the fresh hope that maybe this time, he'll look at the other kids?  Maybe this time he'll realize this is a place to play - and not just lay on the ground and shriek?  Although we are doing all we can to equip him and help him move forward - he is still fairly animal-like in many ways.  I pray and wait for a breakthrough.  For a moment when something clicks - when he stops acting from such a base, primal mode and somehow begins that realization process that things he comes in contact with aren't just for chewing on.  That all the toys he's learning to play with are FUN - not just chores to be finished so he can have a treat. 

I see Casey wanting so badly to connect with him.  He walks up to Cody, reaches his hand out for him, pats him on the back.  And Cody looks blankly right over his head.  Yet there HAS to be more in that little head of Cody's than he's demonstrating.  He uses 5 signs proficiently.  He is a very clear communicator most of the time.  He's showing us with his ABA therapy that he can grasp concepts and execute commands.  Yet there's this disconnect in his daily living - where he just reverts to stimming, screaming, masturbating, chewing on things then throwing them aside.  It's almost like he's trapped in there and shows us glimpses of what he can do, but then his base level needs take over and he is drawn back inside himself.  I can't explain it.  What keeps my hope alive is hoping that the more intensive the intervention - the more hours of therapy - the more times he is "on" and working and aware ---- the more those moments will eclipse the inward, stimming moments.  So we try and try and work and work.  I spent a half hour today just working on "sit" and "stand" - using the sign language for those words - giving him edible treats when he followed the direction.  I spent a half hour just sitting with him in front of a toy - the Busy Ball Popper - just repetitively hand-over-hand teaching/showing him how to play with it.  I spent time helping him learn to use a plastic hammer on his "whack a mole" toy.  We sat together and worked on turning the pages of his Veggie Tale book and activating the buttons to make sounds.  I know all moms read books with their kids and help them play with their toys.  But for me, for Cody, this is hours upon hours a day.  It breaks my heart because 3 year old kids should be out running through sprinklers or climing on jungle jims.  But Cody has to have intense work every day for hours....just to inch forward developmentally.  It is so unfair.  And so exhausting.  He takes it well, though.  And because we have a therapy system that is based on high rewards - he is really motivated to do the work.  After each task he gets his favorite vibrating elephant to play with...or a favorite snack....or a time in the swing.  But it still is so hard to watch him have to work so hard to just inch along.  Of course, we celebrate every inch as if it were Christmas Day - and that's the fun part.  If Cody puts a piece in a puzzle we bring in the marching band and do a dance.  That's my job - making learning fun - and highly rewarding - so that he will keep wanting to do it.  But so often I just long to be a mom.  Without all this pressure.  Without having to collect data.  Without feeling guilty for not making every moment count. 

There's always that balance.  Knowing when it's time to play and not do anything productive.  Knowing when Casey needs me to just pay exclusive attention to him.  Knowing when Cody needs a big long break from having to work so hard.  I'm highly aware that Cody's a little boy and not a machine.  But I'll tell you, unless he is channeled into productive moments, the stimming and negative behaviors come.  And I know he hates those.  The stimming and eye poking and other stuff is a result of boredom.  So for Cody, therapy is engaging and stimulating.  And when it's over, he is overwhlemed when he's just left alone to make choices for himself about what to do next.  Such a crazy existence. 

But by God's grace, I do it one day at a time.  And so does he.  And with luck, I shower Casey with enough attention to fill his tank and to assure me that I'm not letting his childhood slip by me for the sake of Cody's education.  I'm sure I'm not doing this perfectly - but at least I'm doing it!  :) 

We have a fun, exciting announcement coming up.  Still working out the details.  But look for it in the next week on this site.

that's it for now,

with love - Shawna