Wow, where do I begin?  It's been a crazy week - full of highs and lows.  One super high was yesterday at about 12:30-2:30pm.  My friend Sheryl whose daughter has autism invited me over (and hired a babysitter to help with both boys!) so I could meet a really neat mom named Lynne.  She has a son who is also autistic - who is 14.  She is further down the road than Sheryl and I.  She has "been there, done that" with therapy, schools, no sleep, etc.  Sheryl made lunch, we sat and chatted, and it was wonderful to share life with these two other powerhouse women who adore their children, and who are fighting tooth and nail for their development and quality of life.  Lynne even wrote a book about autism and we shared how intriguing it is to have a child with autism, who has a younger brother.  She said her autistic son's little brother is his greatest teacher.  And I had to agree that Casey really seems to be taking on that role with Cody too. 

I took both of them to their "sibling" class at the play gym in Redmond yesterday.  One little toddler fell off a stack of matts - a few feet down - and was really scared by it.  He banged his head a bit.  It was fascinating to me what transpired next.  There were 6 kids in the class - and all of them just kept going about their business - knowing the boy had fallen - but not really caring.   But Casey stood about 2 feet away from the boy for about 10 minutes - until he stopped crying.  The boy's mom comforted him as he cried - and I sat with Casey because Casey didn't want to leave the little boy.  The whole time Casey kept looking at me and rubbing his head and I'd say, "yes, he fell and hit his head.  He's okay.  He just needs to have a hug and cry for a minute."  And Casey would stand close-by - rubbing his own head - waiting for the boy to be all right.  Eventually the little guy stopped crying and ran on to another activity.  And as soon as he was okay, Casey turned me, rubbed his head one last time as I said, "yes....he hit his head" and then Casey ran off to play too. 

To me, this was an example of what having Cody for a brother has created in Casey.  Casey understands that when a mom rushes to her little boy (as I do when Cody has a seizure) that everything stops.  Whatever we're doing halts.  And mom holds Cody while Casey watches alondside us - often crying himself - often rubbing his head because he knows Cody's head hurts.  When the seizure is over - and when Casey realizes Cody's back to normal - he runs off and finds something to play with.  But there's been a compassion bred in Casey that wouldn't be there otherwise, I"m convinced.  It's the blessing and the curse of having Cody as his brother.  He ultra sensitive when someone is hurt.  But he's also conditioned - and probably a little shell shocked - every time a seizure happens. 

It was a pretty profound experience for me - to see Casey's personality/tendancy/compassion flow out in this little play gym.  I have no doubt that God will redeem this crazy life we live within Casey - and he will probably have a compassion and empathy that most men may not know. 

It's been a crazy week overall.  Cody had a fantastic start - learned a new sign "swing."  He was pulled from school in October because of the increase in seizures he was experiencing.  School - and any situation that was stressful - was seeming to exacerbate his seizures.  So he's been at home since Oct. 9th - and we're waiting and waiting for the school to provide a program for him within the home setting.  And in the meantime, we're left to pay out of pocket to try to keep his therapy happening - which is costing a fortune.  And we can't afford the amount of hours he needs so he's really suffering for it.  I think the lack of therapy hours, and lack of intensive intervention, has created a dangerous scenario for him.  Last night he had about 20 seizures overnight - and tossed and turned when he wasn't seizing.  We had to give him a rescue med to get them to stop - then they started up again this morning.  He's been manic, stressed, screechy all day.  He simply needs therapy hours - and needs them now.  We can only afford so much.  In school he was getting about 25 hours a week - now he's getting maybe 10 a week that we pay for.  It's just a horrible situation.  I can't believe that a school district would let him languish like this.  They don't return our emails - they don't answer our questions.  Just silence.  We met a month ago to discuss Cody's medical situation and his need for a program in the home rather than school.  They said they'd have a plan set up in 2 weeks.  A month later, nothing.  So frustrating.  As we wait, Cody's precious 3rd year of development is being frittered away.  He needs a strong home program with a high number of hours - in a calm setting that can be changed and tuned according to his seizures and other high needs. 

None of us got any sleep last night - or the night before - as he has been up all night.  Kind of a dark time overall, unfortunately.  Please pray, if you will, for his overall well being.  For a therapy plan to be put into place in the home - provided by the school.  And as a result, for his stress levels to decrease and for his seizures to die down.  Also, for sleep for all of us. 

with love,

Shawna