Thursday, January 31, 2013

Embracing the Puzzle

It occurred to me today that it’s been nearly a year since Ben’s diagnosis…a year since we first heard “Asperger’s” and “Ben” in the same sentence. A year full of relief and struggle and successes and setbacks…quite a year, indeed.
Over that period of time my allegiance to this label has varied. Although I was relieved to finally have an answer that made sense to me…one that clicked…it still meant that there was something NOT typical about my child. While I can appreciate how my Ben is different than other kids, I still fear for him…fear for his ability to do well in school…fear for his ability to form friendships and caring relationships as he grows older. I had shaken hands with Asperger’s and maybe even invited it into our home for dinner…but I don’t know that I was entirely ready to make a bed for it. Know what I mean?
Some strange voice in my head kept telling me the tests were wrong. He’s fine…he’s not really on the Autism Spectrum. Ben is quirky. He’ll grow out of it. I just need to parent him better. Yes…that’s it…I need to work harder with him. I can pull him through this “rut”. That’s what it is. It’s a rut. That’s all.
I’ve been wandering through my days…smiling and nodding…explaining Ben’s new “situation” as some would call it…”Yes, Ben is on the spectrum”. “Yes, we have an IEP.” “Yes, Ben is getting social therapy.” And while I’ve idly occupied my spot in line of the parents with kids on the spectrum…I haven’t been an active participant. For a variety of reasons. If I’m honest, this is quite an intimidating group of parents with whom to associate. And I get it. They (we) are warriors for their kids. They (we) have to be. Who else is going to stand up for their (our) kids to ensure they are afforded all of the opportunities they deserve?
See what I did there?
I’m trying. I’m trying to insert myself. It’s tough. I suppose if I whip out my card that says I’m an Autism parent I’d have to be ready to represent at any given moment. What if I’m quizzed? What if I can’t carry on a convo in a group of these parents?
What pisses us off about Jenny McCarthy?
What is our stance on immunizations?
How do we feel about Autism Speaks?
<lost look, glancing side to side>
Uh….I don’t…know? I don’t. Really. And honestly at this very moment I don’t care. I am by NO means belittling others’ interest in these matters. I realize people have spent a lot of time, energy, blood, sweat and TEARS on all things Autism including what I mentioned above. I can only speak for myself and where I am right now in this journey. Right now my focus is on my son and figuring out where to go from here.
Up to now, Asperger’s has been a neighbor or fond acquaintance. I’ve kept it at arm’s length. Not ready to take our relationship to the next level. And in doing so I’ve not entirely accepted my son. How horrible is that?
Today, I vow to accept what I know to be true. I am not only shaking hands with Aspberger’s…I am embracing it.
My son has Autism.
I am an Autism mom.
Typing those simple words…simple as they are…took 10 minutes to type. And sent burning tears from eyes down my face. I can’t yet pinpoint why. But I can’t move forward until I say those words.
As I said, I’ve not yet been what I would consider a card-carrying Autism parent.
Until today.
Today I purchased a beautiful puzzle pendant. For me to wear. Around MY neck. Every day.  And it will serve as my reminder. A reminder that I am doing everything I can. That it’s not my fault. That Ben is wondrous. It will serve as an education piece. A talking point. And while I may not be prepared to discuss my thoughts on subjects such as changes to the DSM or other health care or political hot-button topics, I AM prepared to talk about my Ben. And OUR journey thus far. I owe that to Ben. I owe it to the other parents out there, standing where I was a year ago. Where I was six months ago. Where I was this morning before this change of heart. This puzzle is not so bad after all.
**The pendants in the photo above were found through Grape Jelly On Pizza and a link she shared today from Designs by Ja9.

Saturday, January 26, 2013

These Moments

As I rolled over in bed and scraped the crust out of my eyes I could hear the boys downstairs, very clearly turning my dining room into the Indianapolis Motor Speedway.  They're up. 

Need. Coffee. Now.

God, please tell me they made their own breakfast.  And then it occurred to me, "crap...we're out of everything."  We slept a little too late for a grocery store run...these kids are hungry.  Now.  This typically results in momma running out to grab donuts, allowing for a quick stop at Starbucks for the good stuff.  If they get a treat, so do I. 

This morning, however, the Gentleman actually offered to take us all out to breakfast.  Yes please!  (FYI this doesn't happen often.  And by "not often" I mean never.) would think that kids who rarely get to do this would be agreeable and eager to go anywhere if it meant they didn't have to eat the lowly shredded wheat left in the cabinet.  Silly's never that simple. 

Lib and Timmy were finally in agreement and good to go.  They are generally easy to please.  Ben, on the other hand...well he evidently woke up on the wrong side of the weighted blanket.  Awesome.  He didn't want to get dressed.  He couldn't understand why he couldn't just wear his underwear.  Or shorts.  (FYI, the temp this morning was aBOUT 15 degrees.)  Once he got dressed, the jeans were too loose and falling down. (No.  They weren't.)  His socks weren't right...and of COURSE his comfy socks were all in the wash.  Of course.  He was irritable.  He didn't want to leave his stuffed animals.  He couldn't decide what he wanted for breakfast.  Or where he wanted to go. He wanted pancakes.  NO...he wanted donuts.  YES DONUTS.  Dear. God.

The events so far that morning were leading to what was bound to be a "Parenthood"-esque diner scene.  I wasn't feeling froggy and decided to choose my battles.  The gentleman took the older two to breakfast...and I took Ben with me to grab a couple of donuts.  <Sigh>. 

Divide and conquer.  Again. 

Instead of Ben being satisfied with getting his donuts, he spent our ride to breakfast berating me for taking so long to get us there.  God forbid I take the time to actually scrape the 10 inches of ice off my car and dig my windshield wipers out of the snow before safely driving down the road.  I realize that is an inconvenience.  These are the moments I really try to understand how black and white things are for him.  He didn't see any of this as a treat or a favor for him at all. 

WHY is this taking so long??  It's taking forever.  How many minutes till we get there?  Why can't we just go meet Daddy at Flapjacks?  I changed my mind! 
Ben!  I just froze my hands off my arms trying to get the car scraped off quickly so I could take YOU to get the donuts you wanted SO badly...I'm sorry it took me so LONG but a THANK YOU would be nice!
Are YOU making fun of me!?!?!
<Sighing and replying in a much softer voice>  No Ben.  I'm not making fun of you. I would NEVER make fun of you.  Let mommy try again.  You know how in your therapy sessions you talk about how to speak to other people in certain situations?   Well, in a situation like this morning, when someone tries to do something fun or nice for you, you should say "thank you" even if you're frustrated about something.
UGH...why didn't you just say that in the first place??


We rode silently the rest of the way, when we got there he seemed much more a different child.  We found a quiet corner and sat down with our donuts, hot choco and coffee.  I'll admit I was disappointed.  I know it's just breakfast but I get tired of not being able to just get up and go to a restaurant without issues like this.  If we had, we would have paid for it dearly.  As would the other poor patrons surrounding our booth.  This isn't just an issue for parents with kids on the spectrum...I realize that.  I feel like it happens so often though.  This is a long-standing tradition for us.

As I sat next to him, sifting through these thoughts, I realized we were sitting near another momma and her son.  And I know I'm no expert, but after observing for a bit I'm quite positive he too may have been on the spectrum.  Maybe not.  But I couldn't help but wonder if this mom was playing the same game I was.  It sort of made me feel better at the thought.  She was enjoying him regardless.  Just as I was enjoying Ben.  He was in heaven with his sprinkle donut and hot chocolate. 

My focus changed direction and as I usually do in these one on one moments, I really worked with him on having conversation. It's always times like this that I realize how very little he makes eye contact. Even with me. And while I squelch the twinge in my stomach, I find his eyes and make him look at me when he speaks.  And he talked.  And talked.  And talked. 

Mommy do you remember when we came here when I was little after I had all those shots at the doctor's office?
Wow, Ben, that was a long time do you remember that??
Because I'm smart. And Mommy...was it those shots that made me bad?
<Gulp.  Where the HELL did he get that??>   Uh...Ben...why would you say that?  First of all you're not bad, and second of all, your shots just protected you from being sick.  Why do you think you're bad, buddy?
Because I always do bad stuff.  Like inappropriate stuff.  Ya know, like when I get in trouble all the time?  Like when Timmy and my friends get mad at me? 
<Aaaand enter pesky tears>  Buddy.  YOU are not bad.  YOU are not inappropriate.  You are a wonderful, sweet and VERY very smart little boy.  Remember how Mommy told you sometimes we make poor choices but we always get a fresh start to make good choices every single day? 

We spent the next half hour chatting over the last few bites of our donuts.  Him feeling a little better...the both of us laughing about silly stuff...and I forgot about the fact that our morning was disrupted yet again...that we had to divide and conquer.  Rather I felt thankful that I got to have these moments with him.  It's THESE moments that at one time seemed frustrating or inconvenient that I will be begging to revisit 10 years down the road.  It's THESE moments that give me the strength to try again with him every single day.  It's THESE moments, while they sometimes include moments of heartbreak, make me feel like the luckiest mom in the world.