The Look

Ira and Matthew came to pick me up on my lunch hour yesterday and we ended up at Subway. While we were eating, something must have tickled Matthew's funny bone because he got up from the table and was hopping and dancing around the entry way, stopping occasionally to stim excitedly.

Nearby there was a little guy, probably around the age of 3, 4 at the latest. He watched Matthew laughing, hopping, stimming, and his eyes were like saucers. I knew the look. I should. I've seen that look countless times over 14 years. The kid was scared. Not quite lip quivering, crocodile tear crying, from the toes up screaming scared but scared just the same. I guess I can understand. This little guy probably reaches one of Matthew's knees and here he's watching this big kid acting...well...weird...different..

I watched this little guy, wondering if I should say something or if I should continue noshing on my sweet onion chicken teriyaki on flat bread and let things be as they were. Then I watched Matthew with his ear to ear smile touching his fingers to his lips as he does when he's excited. He took a step in the little guy's direction and the little guy seemed to freeze where he stood. I've seen that before too. So I spoke.

"His name is Matthew," I said.

The little guy looked at me, still kinda fearful.

"He wants to say hi," I said.

No sooner had I said that, Matthew stopped stimming and held out his hand. He gave this little guy a sideways glance and said, "Hi,"

The little guy, still looking fearful, took Matthew's hand, gave it a shake, and went on his way.

No meltdowns.

No terrified screams.

No....anything.....

They shook hands.

That part was great.

It was the look...the look I've come to memorize since Matthew's diagnosis. 

The look of fear.

The look that says my son is to be avoided.

The look that says my son is an animal.

The look that says my son will never be like other young men his age.

The look that tears my heart out. 

Yes, I know this look. I am familiar with this look. I can describe it from memory.

Am I used to it after 14 years?

No.

Will I ever be?

Not likely!

Me? Perfect?

I got a private message on Facebook this past week from a college friend. She had seen a post I shared that dealt with why my page is basically plastered with links, pics, and all things autism. Through this post she learned that...guess what? I have Asperger's!! 

Her message kinda threw me for a loop. For one, she asked how I was diagnosed, if I didn't mind sharing. She'd read the accompanying article that was attached to my post, listing the traits of Asperger's  and commented that most of the people we hung with in college could or would find themselves identifying with most of the statements near the end but that she "refused to believe we all have Asperger's." 

This, believe it or not, was not what threw me.

She started off her message by saying," I saw your post saying that you have Asperger's. I never would have guessed that. You always seemed perfect to me."


Did she really just say that?

"I never would have guessed that."

"You always seemed perfect to me."


Sooooooo.........what exactly is this supposed to mean?

Am I, a 44-year-old woman with Asperger's, somehow broken and defective? Am I somehow less of an individual because of this "title" that I bear? Am I supposed to have a certain look to me? Am I supposed to carry myself in a certain way? Am I supposed to behave in a pseudo;"Rain-Manesque" manner?

Am I no longer a person because I am autistic?

Pondering Uncertainty

So here I sit on the eve of my 44th. birthday. Coffee has been my beverage of choice today (more so than usual), having been stirred from sleep at 4:45 this morning by a phone call from the Clubhouse VP. Anytime you get a call at 4:45 a.m....well...chances are it's not Stevie Wonder calling to say he loves you!

He was being taken by ambulance to the ER after collapsing in the middle of doing the end-of-shift paper work (he works front desk at a local casino owned and operated hotel). As luck would have it, he had taken the van to work which meant I needed to find a way to get to him as well as to it. Like any mature woman on the 50 side of 40 would do, I called my mom and dad. I told them what was going on and asked would they please pick me up and take me to where Ira was. Within a half hour or so they were here. I was never happier to see their headlights in my driveway as I was then. 

I spent the trip into town praying...and crying...and praying some more...and crying a whole lot more. Matthew, a daddy's boy through and through,  had come along for the ride while Jordan held down the fort at home. Since only two people were allowed back in ER, Mom sat in the waiting area while Matthew and I went back to where Ira was. He was resting on one of the standard Stryker beds, hooked up to an EKG machine, an IV in the top of his right hand. He opened his eyes--"There you are!" Handing me the keys, he told me he'd be able to come home, he was just waiting on some tests to come back (Cat scan, EKG, etc.) Matthew waited there with his dad while I went to fetch the van. Matthew was smiling and yet wore a worried expression too. He knew his daddy was in the hospital before we even came in but that was about the extent of it. Within minutes Mom and Dad took me to the hotel where the van was parked and I was back at ER. 

Doc came in after a while to let us know that the tests came back fine, as it seems they do. Being a diabetic, his sugars were through the roof, 356 down from 382. Doc glanced at me and let me know that someone had to be with him throughout the day to help check his sugars. Suffice it to say I called in, like I'd have done anything different.

Once we were back home, Matthew seemed a bit more at ease, as was Jordan when he saw that all of us were home. He was his usual laughing, dancing, "'cising'" (Matthew's word for "exercising") self. He took turns cuddling against us both but, like usual, he leaned on his dad the most. 

All of this led me to fast forward to a not so distant future when Dad and I will no longer be here. It's not a pleasant thought, one I don't like to dwell on but pushing it to the back burner of my brain is not going to stop the hands of time from moving forward. We are getting older and one day we will die. When that happens, what will happen with the kids? Where will they go? What will they do? Will they be taken care of? Will they be loved, supported, and nurtured? Will they be handled with dignity and respect?  What will...where will....how will....ohhhhhh.....it's too much at times!

18 And Life

 Tomorrow my son Matthew turns 18. What teenager doesn't dream of that age and what it represents? Matthew knows he's turning 18; ask him and he'll tell you with that big, toothy, joyful smile that he has come to be known for. Does he know everything that seems to go with that age? Good question. 

I sat with my mom over a cup of coffee earlier this evening, tears pouring down my face. My mom, God bless her, sat and listened as she is so good at doing. Sometimes it is so hard to keep it all together. Sometimes, even at my age, you just need your mom. Tonight I needed my mom!

I looked at Matthew, a strapping 5'10,' 216 pounds, broad-shouldered, butch-cut brown hair, mustache, and eyes that sparkle and pierce at the same time. I looked at him, looked back at my mom and said, "Autism sucks!" I pored over things that Matthew "should" be doing--senior pictures, hanging with friends, school activities, the college thing. I so prayed for families for him and his brother, kids and grandkids. At this moment, it looks as though these are to remain prayers and shoulds. And I am angry.

Mom listened and then asked me a short but pointed question. "Angry at who?"

I stopped and thought about that.

Who or what am I angry with?

Am I angry with Matthew? Or Jordan? No. Frustrated and frazzled maybe. But how can I be angry at them for something that they didn't sign up for? How can I be angry at them for something that leaves them as frustrated and frazzled as I am?

Am I angry with those who are not on the spectrum? No. Again, it's rather hard to be angry at someone over something they have no say over. I do, however, get frustrated when I hear gripes over things that I can only wish for or pray about, things like a first word, first job, or living independently. Matthew's first words came 6 1/2 years ago. His first job hasn't happened yet. As for living independently? Who knows?

Am I angry with God? I used to be in the beginning, in part I think, because I had no clue what it was I up against. I didn't understand what autism was and wasn't, I had never dealt with it, never been introduced to it, and as a result I was left scared to death. I questioned what His purpose was for my boys' being on the spectrum. I questioned why them, why our family. I asked why, if He could speak the world into existence, He couldn't or wouldn't speak the word and my sons were "normal." No more autism. And I grew weary of hearing how "God only gives special kids to special people." I'm still weary of it. I know Matthew was created in the image of God. His name means "Gift Of God." Autism, however, was not created by God. Can God use it for good? Absolutely! 

Am I angry with autism? Well...yeah...if I am to be brutally honest, yes, I am. I am angry for what it has taken from my boys, their choices, their options. I am past angry with the judgments and mindsets that still seem to be prevalent out there that say our children are nothing more than "nature's mistakes" and should be put away somewhere. I am livid at the attitude that tells me that I am fighting my children if I dare to go after the dragon of autism. Guess what? I do fight! If I were given the ability to evict this intruder from my boys, you'd better believe I would do it and not think twice about it! Would I trade my boys? Not for anything in this world!

So I sit here tonight on the eve of my boy's 18th. birthday with mixed emotions. I grieve and yet I celebrate. Most of all, in the midst of the grieving and the celebrating, I love my son with every fiber of my being and will continue to face the dragon that is autism until I draw my last breath. I will grieve from time to time. That I am sure of. I am also sure that I will still celebrate and I will still love.

Autism Sucks....

There is a general consensus around the social airwaves lately which basically states autism sucks. It not only sucks, it sucks dirt! And I am making it unanimous!

Let me make this clear right now right off the bat. While I have moments of downright despising autism, my kids are another matter! My kids are the very air that I breathe. They are the reason I do what I do from my cashiering job at a local home improvement box store to fumbling for the words on each and every blog posting. 

Autism, however, has been a cruel bedfellow. Autism has caused a beautiful young man (Matthew) to war within himself for seven years because he did not have the words to express what it was he needed, wanted, liked or didn't like. It left him unable to say when he was scared or sad, sick or angry, grunts and screams and flustered gestures his only means of getting his point across. Even then, it was still a guessing game.

Autism has caused this precious boy scream at me in frustration, to throw himself down and hit himself in the forehead, and to spit and bite his hands and arms. Autism has caused overloaded systems (his as well as mine), loneliness, isolation, unwanted parenting advice, rude remarks, and judgmental glances. 

Autism has caused another beautiful soul (Jordan) to be bullied, misunderstood, and judged. It has caused him to struggle internally, wondering what, if anything, was wrong with him. It has caused social awkwardness and knowing the right things to say and when (or when not) to say them. Where other young people have their circles, their groups, Jordan has himself, his computer, and his cat Daisy. Oddly enough, he seems to be okay with that; better than I have been anyway.

I look at both of my boys and an old familiar ache settles in. Matthew, who turns 18 in five days, should be having senior pictures taken, scouting colleges, hanging out with friends and quite possibly dating. At least that's what the NT (neuro-typical for those who may not know the lingo) world tells me. Jordan has overcome a lot but I still worry about him. Will he be okay when he leaves for school in December? Will he be able to manage his schedule, his money, his everything in between okay? 

Did I mention that autism sucks?

What We Need...

I'm struggling to find words tonight. My heart feels like it weighs a ton. 

I learned through a dear friend, also an autism mom, of a fellow autism mom who is at this moment lying in the hospital along with her precious daughter. This mom attempted to end the life of her daughter as well as her own. 

I do not know this mom. I have never met this mom. I have never heard of this mom until two days ago when the story broke. I have never walked her path nor have I tried to squeeze my feet into her shoes. Admittedly, I am still attempting to get my head around what had happened that led to the events of Tuesday, September 3rd.

In short, I'm struggling to comprehend the choice she made. I don't understand why what happened happened. Not completely.  

When you are a parent, you want so much for your children. You want them to take a better road than you did and to learn from the mistakes and choices you made along the way to where you are. You sweat and struggle and sacrifice to help them along on their journey. 

When you are an autism parent, you also want much for your children but the road you're on does not stretch the same as it would otherwise.  We go nose to nose with schools, fighting for inclusion and safety in the classroom. We stand elbow to elbow with educators who would otherwise deem us the bad guys for expecting what every child deserves to have and instead place our children in a corner with paper and crayons and forget about them; after all, what can be expected from children such as ours? We stand toe to toe with insurance companies who would deny us the coverage we need to give our children the support, the therapies, and overall services not only needed but also deserved. We confront bullies, going after the Goliaths that lurk many times in our front yards. We fight loneliness. We fight isolation. We fight ignorance. We fight the fear of an uncertain future for our children. The sad reality is, too many times, we fight alone.

There have been many times, more than I care to recall, where my elastic has been stretched beyond the point of breaking and I have lashed out in ways I could never begin to imagine. Taking their lives along with my own was never part of the equation yet at the same time I was ugly, someone I don't recognize. While my kids may have reached a place of forgiveness, I have not. Will I ever reach this place? Who knows?

I want to learn more about this mom and her daughter. I want to learn their story and share it. We need to know each other's stories. We need to know when someone in our community is stretched to the point of breaking and stand in the gap for them however possible. We need someone to listen. We need someone to hear. Once in a while we need to have our tears wiped away with the reassurance we will make it! We need each other! We need to know we are not alone!