Boneless weary

Have you ever had moments in your life when you feel as if your bones have been liquified? And I don't mean that someone has given you a kiss so wonderful you wanted to melt; I mean the feeling that your body has had all it can take and your bones have just disappeared. And not in the cool way that Harry Potter's arm bone was magically removed in book 2. Just had your bones sucked right out of you where you stood and you crashed to the ground.

I have.

First time I remember it happening was for someone foolish. And I blame the ah-ah-ah-ah-ah-alcohol. But when you think you are in "love" and come home to find him and all of his crap gone, and you've not yet realized he had done you a big favor, and you've been drinking, it stands (or falls) to reason.

Second time, January 3, 2009, something in my body knew before my brain allowed me to realize that I'd lost my mother forever. I still cry when I think about that because that's when everything in my life fell apart and I think that I lost more than my bones that day--I lost so much of my soul that I think I shall never, ever recover. I miss her and although I grieve so much every day, I still can't heal.

The last time was the other night. I just hate autism so much and I just can't deal with it anymore. I can't help him and I can't protect the littlest from his rages and so I fail them both. And whatever little bit of a soul I had left after January 2009 just died in me.

I have no backbone left. I can't state how I feel to people that need to know how I feel because I can't even express to them in words what needs to be seen, heard and understood. I cannot fathom how it's not obvious. Apparently I don't understand the self-absorption that would blind someone to the reality around them. I just don't. Or perhaps I am so self-absorbed, I'm the one that is blinded. I don't know. I don't know anymore and am weary of being blamed for being a "know-it-all" and a "no-it all" at the same time. I'm weary. And boneless. And soulless.

Autism Awareness and Poetry Appreciation

Since April is both Autism Awareness and Poetry Appreciation month, I figure maybe I'll write a poem a day--and try to have a theme going.

I found a bunch of things I used when I taught poetry and I think I will also take the opportunity to do some experimenting with my poetry writing by exploring different styles. I might even do a couple poems of the same type. Who knows what I will do. What I hope that I do is actually WRITE one poem a day. Now, these will all be rough drafts and perhaps I will revisit them and refine them. perhaps I won't....but here goes. And since I missed April 1 since I didn't THINK of it yesterday, I'll post TWO.

Autism

Angry, amazing, awful, aching, aloof, awkward

Unruly, unique, unbelievable, upheaval

Timid, tiresome, ticklish

Impish, incredible, indigo, imaginative, impatient

Sociallyawkward, stigma, silly scoundrel

Marvelous, moving, magnificent, misunderstood.

I Wish

I wish I could see the world through his eyes

I wish I could understand his needs better—especially when he doesn’t feel well

I wish I could be sure he knows that I adore him

I wish I had more patience

I wish everyone knew his fits of laughter more than his fits

I wish there was more understanding

We get by with a little help from our friends. Margaritas might help too.

The following words are not mine. They are from a friend who is foraging a path through the forest of Autism that I will be travelling at some point. It was a private message to me. She has a son on the spectrum. And like all of us, she loves her son. Even when the autism doesn't make it easy. Unless you've traveled this path, please do not dare to judge. (I asked for her permission to publish this. Names have been removed to respect her wishes. Her wishes for her son to never know how she struggles because she doesn't ever want him to doubt her love for him made me think about how much I complain about my son. She humbles me for more reasons than this.) I'm going to shut up now and let her "speak"; please listen. Sometimes we need to give each other our voices too.

You know, I don't post as openly about autism on my Facebook because I never want my son to see me ranting about him when he is on FB. Stinks when they grow up. But boy, today has been a day. And, I'm betting my 17 year-old doesn't appear to be all that different from your little boy today. He is on spring break. Spring break, and all other school breaks are a nightmare for those with autism. They just screw up the routine!

He went on an impulsive eating binge while I was in the shower- marshmallows, raw carrots, chocolate cake, funions, ovaltine and milk- and then threw up. Like a toddler I might add, leaving the mess for someone else to clean up while he stormed off slamming doors and screaming. He refused to go to the psychiatrist for his appointment. He dumped chips into the dishwasher his little sister was unloading--leaving her in a fit of tears.

And now, while we wait on the in-home therapist to come and help get him checked into temporary respite care (that is the 'treatment plan' for when he creates a hostile or fearful environment in the home) he is sleeping like a baby which only makes us clench our fists and doubt ourselves for following the treatment plan.

And when it is all said and done tonight, I will have to deal with my mom and husband's mom and the brother-in-law who all sit in judgement because somehow we were responsible for his behavior and didn't handle it right. And then when we lay down to sleep we will beat ourselves up yet again for sending him away and wonder what we could have done to make it all go differently and then we'll surrender because we know we've done everything we possibly can. We'll remind ourselves that working toward long-term assisted living really is the right thing to do for him and then we'll cry ourselves to sleep because it hurts.

I am so mad right now because I want to tell this to the world, but I can't because my son might see it and he might not understand that we love him more than anything in the world even though we struggle so much with his behavior. So I share it silently with another mom who's 'been there' and try to hold my head up high