What I Really Want To Say

by The Roc Chronicles

I’ve been pushing down the words for months.  Holding them in, sweating and pounding them out as I push myself on runs, sweeping them to the side, swallowing them with my dinner, and those words have clogged my brain and made me feel claustrophobic.  Lately I have moments where I cannot breathe and I have to stop and stand still, quiet my racing heart and clear my mind.  I stand in the bathroom and let the tears fall silently for a few moments before putting my face back together.  I start to release the valve and then I walk away from the computer.  I have posts in my draft folder titled, “More Than a Housewife,” “Grief,” and “Unexpected.”  I cannot finish them and push publish.  Too raw.  Too much.

A week ago I had a string of days in which I awoke in the early morning hours because of nightmares.  Five nights out of seven my eyes snapped open to register the darkness, my heart crashing against my ribs, the sheets and my tank top damp with sweat.  Images and scenes, worries and fears brought forward so clearly tears pricked my eyes as I tried to get back to sleep.  These awful dreams were never the same, but they all centered on the Roc, except for one.  I’d lost the Roc and couldn’t find him, he was choking and I couldn’t save him, he was a teenager and some boys lured him off the bus and beat him up and he couldn’t tell me who they were, and one dream in which the police knocked on my door to tell me my husband was dead.  I don’t need a therapist to interpret those dreams.

I have been struggling with that baby fence again.  Feeling secure in my decision to close the door on another child.  The years of trying and wishing and hoping and the crushing disappointment of loss too much for me.  I want to move on from these feelings.  I want to stop thinking about it.  I have days when I say NO loud and clear to myself.  This one is more than enough.  We three are good and I have all that I can handle.  I have a few days here and there where my heart aches for the 6 month old baby I would be taking care of today.

I heard, “Wow, I don’t know how you do it.  He is a full time job, and I can tell you work hard,” from the Roc’s spec ed teacher during one of our recent phone conversations regarding his spiraling behavior at school.  It’s been hard to get these notes, these emails, these phone calls from school.  Is he really acting up that much?  Is it so different from last year?  Why?  Is this spec ed teacher, who is new to the Roc, and new to this age group, putting more emphasis on the negative?  How and why is it so different from last year?  Where is the positive?  There is positive about my child, they see it right?  Are they making sure to focus on the positive?  What message is he getting at school?

School.  Sh*t school is getting hard for my boy.  He is struggling, but learning at his own pace.  I struggled to hold onto the positive when we heard all that he cannot do and how far behind he is during our recent IEP meeting.  I am dreading fall conference tonight.  Dreading.  Dreading.  Dreading.  The notes, emails and phone calls this past week haven’t helped.  Homework battles ensue every afternoon after school.  It is so hard to watch him struggle.  Not much comes easily at school and it’s hard on my heart to imagine what he feels like when he’s there.  What his body feels like, and what his heart feels like.  I worry.

Recently, in a moment where I was so full of warring emotions I fired off a string of words to my friends, my autism mamas, my sounding board:

I’m feeling the panic well up inside.  I’m fighting it.  It’s winning.  There is just SO MUCH to teach this child.  How will I do it all?  How can I prepare him for the world.  The smallest interactions with people are so terribly hard for him.  He’s having a rough go at school.  Learning to read is frustrating the sh*t out of him, math is so hard, everything is hard.  Friends?  What friends?  I’ve seen the looks, I notice the avoidance.  Oh my heart.

On a walk at the dog park this afternoon he told me he wished we had more kids at our house and then asked me, “What were you going to name that baby who died?”  Oh my heart.  I thought my chest would explode.  Oh my heart.

This is hard.

This is hard.

Some days I am overwhelmed with all that we are working on right now.  Right NOW.  Actually, many days, no most days lately I am overwhelmed by all that we are working on Right Now.  All the things I still need to teach this child that other children pick up through osmosis.  The school stuff, the at home stuff, the daily living stuff, the friendship stuff, the conversation stuff, the anxiety, the frustration, the….everything.  The small things all the way to the huge.  There are not enough hours in the day.  I waste no time, and yet I do not have enough.

How do I get it done?  How do I fit it all in?

I know there are no simple answers.  Small bites a friend told me.

Keep breathing.

This is hard.

There is so much more to say.

**********

I’m a full time stay at home Mommy to my eight year old son “the Roc” who was diagnosed with autism in Dec 07.  Married to a Jersey boy whom I call “GC” (as well as “babe.”)

This post was originally published HERE and used with permission.

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2 Comments

Filed under Remembering to Breathe

2 responses to “What I Really Want To Say

  1. AndyMummy

    Oh, Roc’s mama. This is so raw and real and honest. I hope by sharing you may lighten your load a little bit. I have two kiddies on the spectrum and am terrified of the black-hole school will be (they are, thankfully, both preschoolers).

    We have taken to writing one-page reminder sheet to staff that don’t work for us (say, support at preschool). “Praise and notice the positive”. “Little attention to the negatives”. “Clear notification long before transitions”. Etc.

    We are writing one page checklists for the home-to-school notebook, so we can get a sense of the things that went well, and what was a challenge, and which was more, because it is the “bad news” that too often comes back.

    Virtual hugs of strength to you from Canada. I recently read a post about the Roc linked to DOAM, and enjoyed it very much. Wishing you and your lovely family well.

  2. I agree. We are trying to navigate the system to get services and many days I wonder why. I go to church with her on Wednesday nights because no one knows ASL , as we walked single file down the hallway and passed the older children, the ones that are her age, two little boys started laughing and pointing. I was so thankful she had passed and was clueless. I knew I couldn’t be trusted to even open my mouth so I kept on walking, acting like it never happened. But it did. The only thing I can think when the ugliness rears its head inside my mind, I hope and pray their mamas love them as passionately as I love her. It’s hard. But we can do this.

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