Tuesday, September 1, 2015

September Sucks.

September Sucks

Sure, it’s the month that marks the end of summer.  That sucks.  But in my world September means nothing but death.  Plain and simple.  Death.  Oh, and loss.  I suppose I could insert 99 synonyms for death into my definition of September. 

From where I sit the rest of the world is busy shopping for back to school supplies, clothes and shoes.  Sending their eager children off on long school buses with their friends, waving good bye and smiling as they pull away from the curb.  No fear.  No anxiety.  Just a sigh of relief that now they can get back to their “normal” lives.  I in no way identify with any of this.  Let’s talk about a boy who can’t tolerate shoe shopping without his aide providing constant redirection and support as I search the shelves for a size 7.  Show me that picture of the 10 year old with no friends climbing into his mom’s car to drive 30 miles to his specialized school where he will receive the best available education/instruction for kids with autism.  But you don’t need a notebook or pen for this school.  Since his brain was fried at 18 months of age, writing is a skill that doesn’t seem to be achievable.  But hey … there’s always typing right?  Now how about the 30 mile drive back to my office after drop off when I spend the time with Howard Stern at full volume in an attempt to drown out the “what if’s” and “what will I/he/we do when ______” that wont shut the fuck up in my head. 

My beautiful, silly boy turns 11 on September 14th.   Isn’t that great?  Sure.  On paper.  Before I go on, just understand that I truly am thankful for his health and the strengths he has and the blessing of his school placement and home team and all of that.  But also understand that I mourn deeply for all of the things he doesn’t have.  Things he may or may not want because we just don’t know.  He can’t tell us.  I mourn for things I can’t imagine him having as he ages.  No, I’m not discounting the progress he’s made.  And, I’m not disbelieving that he will make amazing strides in the coming years.  But I also owe it to him to remain realistic and to plan accordingly.  What’s that saying?  Assume the best, but prepare for the worst?  Something like that.  I can drown in this darkness.  I allow myself a few tears – usually in the morning before the day starts – I mourn this yearly celebration of how far behind we will always be.

And the newest, freshest loss that is remembered in the fall is the loss of my rock, my confidant, my strongest support system I’ve ever known.  Sure she was my mother in law, but in reality she was the mother I never had.  The mother I never knew was possible.  I miss her every second of every day.  I know my son does too.  I know he can’t express that pain, but it’s there.  How could it not be?  She was there for every single celebration and every single heartache.  She comforted all of us.  All of that is gone.  Left behind is just emptiness.  My family is shattered by the loss.  Nothing will ever be the same. 

So forgive me if I don’t celebrate September and this season of death and loss.  I’m too busy keeping the promise I made mom almost 12 months ago … to take care of her boys. 

Friday, July 29, 2011

Mind Your Manners

As the mom of a special needs kid I’ve gotten used to all of the ways my son is different from his “typical” peers.  I’ve also started to get a little more used to the sting that comes with each realization.  However, a year ago I was hit square in the gut with the painful reminder of his limitations.  It was the end of his kindergarten year and the general education class he spent a part of each day with put on a year-end program.  There were 2 general education kindergarten classes as well as his special ed class totaling roughly 50 kids.  Oh, and my son’s 1:1 aide who sat with the children to keep my son seated in his spot, focused on the program and to stop him from taking off his shoes (a cyclical behavior we deal with even now.)  So yeah, walking into the gymnasium and seeing my son (the only child sitting with an adult’s assistance) kinda sucked. 

The kids proceeded to sing a handful of songs they’d learned and speak little one-sentence parts, each taking their turn @ the mic.  Well…my kid has no lines.  Why?  Because he’s pre-verbal.  His speech paths in his brain were short circuited by a vaccine injury he suffered at 18 months.  He works very hard every single day to speak.  I'm going off topic, sorry.  Anyway, I stood amongst the other parents (typical and special parents) with a grimace on my face that I was hoping would pass for a smile for about 30-45 min’s while this torturous reminder of my son’s disability dragged on and on.  He was a trooper as he always is and did his very best.  It’s all we ever expect of him.  HIS very best.  The program ended and everyone was clapping when my son’s aide stood up (oh crap, now he has to be paraded out before anyone else?) and walked with him to the mic in the front of the stage and he held up a sign that read “Thank you for coming to our show.”

The applause was thunderous.  As I find myself always doing, I celebrated and cursed the moment all at the same time.  I was thrilled they included him in the program (as they should have, by law) but I was heartbroken for him because he wasn’t participating the same way his classmates were.  I try to put myself in his head and imagine how he must be feeling.  Is he wondering why he isn’t singing and reciting lines?  Is he wondering why he has to have the aide sitting behind him when no one else does?  How does that make him feel?  How can I help him?  Well isn't that the $10 million question?  How can I help him?  Ugh.  About a month before this program, his special ed teacher sent home a cd of the songs they sang.  In an effort to familiarize my son with the music to avoid any anxiety, we played the cd over and over at home.  He loved the songs.  They were about "The Golden Rule" and taught us to "Mind Your Manners" and on and on. So we listened to that cd for exactly 1 year and 1 month.  We danced to it.  I sang those songs over and over to him.  Sometimes he'd mouth a word back to me if I was lucky, but he loves loves loves the cd.  Loves it.  

Last night.
Listening to the cd (as usual after dinner.)
I'm in the living room relaxing w/husband; he's in the kitchen (where the cd player is)
The first song starts and what do I hear along with the children on the cd?  MY KID!  MY KID IS SINGING ALONG TO THE SONG!  MY KID IS SINGING TO ME TO MIND MY MANNERS AND WATCH MY ATTITUDE!  He sang the entire song.  He sang the entire next song.  He sang the entire following song.  Of course husband and I are holding our breaths; trying to not make a big deal at all about it for fear of him stopping.  But we both were beyond thrilled.  Beyond proud.  Beyond thankful.  Beyond hopeful.  It's as if my son knew I needed him to sing to me.  It's hard as hell to live our lives.  I don't want to hear about how hard other people have it.  I know there's a universe full of people who have it way way worse than we do.  I get it.  But this is MY BLOG.  MY MOMENT.  MY LIFE.  And it's hard as hell.  So when I heard that apraxic little voice giving life to lyrics that have been spinning around in his head for a year?  I was thankful for my hard as hell life.  Without it?  I'd be typical.  Ew.