sometimes

I wrote this awhile ago but never finished it.  I had to get it out in the heat of the moment.  I had to record it because I was feeling so much.  As I said, I didn't finish it.  I ran out of time.  Had to stop to start supper.  The moment passed.  The feelings dissipated.  We all moved on.  It's a memory now, replaced by other successes and other setbacks.  That seems to be how this goes.  2 steps forward, 1 step back.  And I know our struggles are so insignificant in the grand scheme of things but they're our struggles and we still feel the hurts that they cause.  I went back to it today.  Finished it a little more and felt that I had to share.  I always stress about writing about my boy's asperger's.  I stress about others reading what I've written as much as I stress about not sharing it.  But in the end, I share it and hope that maybe someone reads it and understands us and feels better because they've been in that place too.

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just because i want you to get it...
there was this party a while back.  all the boys in his class invited for hotdogs and fun.  it started out great.  he was excited to try a hotdog (hasn't eaten one since turning 1 yr but thanks to some surgery, now he can).  he took a big bite and declared it yummy.  i got tears in my eyes.  eating without gagging or vomiting hasn't happened since about 16 mos. 

he was playing with the boys.  light saber battles.  footballs being tossed around.  any 6 yr old's dream.  and then the water guns came out.  the first melt down after getting squirted.  we don't tolerate wet clothes especially after a week of just coping with school.  another boy yelling that my boy squirted him first.  i pull my boy aside and calm him down.  pointing out that he knows that's the rule in the swimming pool and it's no different here.  if you squirt, expect to be squirted back.  he loves it in the swimming pool.  he loves it in his bathing suit (clothes that are designated for getting wet) he sits by himself for a while.  he's still unhappy.  a wet shirt, nothing that he wants to drink, not being allowed to go wander inside and find a book. 

he perks up and i think he's going to recover.  he goes back to play for a little bit.  his shirt is already dry.  he's happy again.  then he's accidentally squirted.  we're done.  the crying begins.  a big meltdown.  it's just been too much for him.  he's really having trouble calming down.  the boys are watching.  the parents are watching (i don't really know any of them). 

i'm defeated.  i'm afraid he's going to be labeled as a baby for being upset over getting squirted when all the other boys were loving it. it hits me again that he's different.  it's not bad to be different but in this case, it's a lot more difficult.  as someone who always wanted to blend in to the point of being invisible, it's tough having a child that can really stand out at times- and come to think of it, i have 2 that stand out in very different ways.  my heart hurts for my boy because i know he wants to be a part of it all.  i also know that he's craving that quiet space to himself with his book, shutting out the world around him and going into Harry's world.

i know there will be successes.  there will be so many successes.  my boy will do great things.  but the setbacks still hurt especially when they're right after a big success.

i write this because i don't want pity.  i don't want to even be told that everything is fine and will be fine and there will be other parties and other successes.  i know that.  i don't doubt that in the least.  i just want someone to get what dealing with asperger's is.  what dealing with an autism spectrum disorder is.  i want to hear, "yeah, we've been there too and sometimes it just sucks"  because sometimes, when you're having to leave the party when the other kids are still having fun... it really sucks.