When you miss a beat -Tuesday 15 May – 32 weeks and 3 days

I wake up with a start.  I immediately know that I have overslept.  I curse.  Bloody alarm.  I set it and it didn’t go off.  I know what is to come and I dread it.  I jump out of bed, as much as I can jump out of bed, and run to the laundry.  I grab the uniform, iron it and burst into JC’s room.  “Wakey, wakey, rise and shine,” I say as cheerfully as possible.  Maybe he won’t notice.

“What time is it?”

“It’s time to get up,” I reply, hopefully.

JC lifts his head and sees the light streaming through his blinds.  “Mum, it’s light!” he shouts.

“Well, I may have overslept a bit,” I say, trying to remain calm, “so up you get up and into the shower.”  JC himself jumps up out of bed and checks the clock in the dining room.

“Mum!  It’s ten past seven!  That’s it, dad can wake me at 5am when he goes to work.  Where is dad!”

The yelling, it’s the yelling that wears me down.  I avoid it at all costs especially as JC is now bigger and stronger than I am.  I don’t live in fear, per se, but I do live with some anxiety that things may possibly fly across the room.

“Dad’s at work, you know it is budget week and he has to be at work early.  Now, get in the shower, JC.”

“Oh no, I’m not showering, not now, it is too late.  I am meant to be woken at ten past six.  You are an hour late.  I know you were just too lazy to get out of bed.”

I ignore the hurtful remark.  “If you want your iPod any time soon, you will get into that shower.”

“That’s not fair.”  It’s the only leverage I have that I know will get him to do what I need him to do.

I have now lost my patience.  “Well, life isn’t fair!  Now get in that shower.  And make sure you use soap!”

JC storms into the bathroom and I hear the shower door open and shut with a bang.  I know he probably will not use soap and it is absolutely no time to remind him to wash his hair, since he hasn’t washed it in over a week.  I retreat to the laundry and put on some washing.

My mood is plummeting.  I have been feeling it for a few days now.  It’s that wretched mother’s day.  Mom was diagnosed with cancer around mother’s day and died 8 weeks later.  Now, I no longer have a mother to spoil on mother’s day and even now, two years later, I feel a great sense of loss.  Being a natural giver, rather than a receiver, means I no longer enjoy mother’s day.  The bombardment of “Happy mother’s day!” and “Mum, I love you.” all over the place is literally more than I can bare.

Dee came home last night to find me in tears.  He put his arm around me and asked what was the matter.  I felt silly saying that I missed my mom, that I missed her voice, the stability and evenness that she brought to my life.  Now, here I am missing her even more than when she first died.  I need her to listen to me download, to listen to how hard I find it sometimes, being a mother to a child with autism, my fears of his long term independence, my anger and sadness at my own sense of disappointment and loss of not having a normal child.

I hear JC emerge from the shower.  He shouts something at me, but I choose to ignore it, since I didn’t hear what it was.  I move into the kitchen and start making his lunch.  I go to pick up the vegemite and drop the jar on the tiled floor.  It shatters.  “Shit! Shit!” I say.

“That’s called karma!” JC shouts from his lounge.

My blood boils.  I storm into his room.  “You just show some respect!” I yell at him.  “The appropriate response is ‘Are you okay, Mum’!”  This is a futile exercise.  Children with autism, and especially teenagers with autism are extremely self-centred.  Not in the selfish the-world-is-all-about-me kind of way, but in the I-live-in-and-can-only-operate-in-my-own-world kind of way.  They have to learn empathy in the way we have to learn to drive, they aren’t born with it.  It is impossible for JC to see that I may have been hurt by shattered glass.

“You have to earn respect,” he says without looking up.

I’m human, and I have reached boiling point.  “Respect!” I yell, “Respect!” (just in case he didn’t hear the thunderous voice the first time around).  “I have earned that respect by being your mother, for carrying you for nine months, pushing you out with great pain, nurturing you and giving you as much love, shelter and care as any mother could give.  I have earned it by understanding your autism and fighting for you every single step of the way!  Oh, my boy, I have earned that respect!”

I know he isn’t listening.  Children with autism have a wonderful way of retreating into their own world.  He just says “karma” and retreats.  I walk away, knowing that it is pointless.  I broke his routine.  His routine that is so precious to him, as it is to all children with autism, and I disregarded it.  As far as he is concerned, I trashed his routine and that does not deserve respect, even when I explained to him that I did set the alarm and it didn’t go off.

I head off to the shower myself.  I am tired and I haven’t even begun my day.  As the warm water warms my skin I wonder about karma.  I head off down a self pitying train of thought of being a really bad person in my previous life to warrant a teenage pregnant daughter and a teenage son with autism.  I shake myself.  This is a dangerous road for me and I cannot go down it.

“Mum, are you ready, we need to go.”

“I’m just about done JC.  Five more minutes.”

We get into the car.  JC blares his music in his ears.  I listen to the radio.  Both of us are absorbed in our own thoughts.  God, I miss my mom.  “Have a good day at school.  I love you,” I say as JC alights from the car, as I always do, part of his morning routine.

He grunts.  “You know, I know you overslept on purpose.”

I smile, promise him that it was a mistake and drive off.  I get home and check the alarm clock making sure it works for tomorrow morning.  Missing that beat cost me, and JC, and I don’t intend to let that happen again.

 

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4 thoughts on “When you miss a beat -Tuesday 15 May – 32 weeks and 3 days

  1. Sarah, love this. My husband and I joined a foraging group last autumn, we fell in love with finding edible mushrooms in Sweden and needed to satisfy ourselves that we were not getting too cocky – that we could die from poisoning because we knew it all.

    I was surprised at the cross section of people that attended, from retirees to children aged 7. Nestled in amongst this spread was a guy of about 20. He would shout loudly when he found something, call out its Latin name, barge past anyone in his path, attach flashing light markers to trees and throw a hissy fit when anyone found anything more rare than he had.

    The group also spreads over quite a distance, as you can imagine, but no matter where we clustered around the designated expert leader, getting a perfectly passable run down of the fungi’s characteristics, the chap would hurtle, seemingly oblivious to anything/one in his path to deliver his assertions in a loud monotone, whilst making notes in his pocket book.

    Well, my husband just about did his nut, until I said that the chap was probably autistic. However, I have met other autistic people who have been taught, as you have written, things like manners, empathy, and I felt that not only was the young man autistic but that his parents had indulged him. I have no way of knowing whether that was the case but there was something of the precocious child about him.

    I was in my hypervigilant post traumatic stage so saw just about everything and did identify stuff that had last been found 20 years ago, or never, on one occasion. This did not go down well and he became quite hostile towards me. We have decided not to pay this year’s subscription. You are evidently doing a fantastic job. Keep at it!!!!!!

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  2. Hi there, foundmypen, I am not sure I am doing a fantastic job. I often take the line of least resistance. I am admittedly battle weary and it is beginning to show. Hence, the argument today. Normally, I do not lose my temper in such a fashion. I am actually known for my patience with him.

    JC is a high functioning autistic and as such will not be like the man you describe. He is able to engage, but will withdraw if it doesn’t interest him. Not much interests him at the moment. That is the way of autism. The “special interest” (clearly mushrooms in your guy’s case) is what drives them. For JC it is Naruto and especially Naruto Fan Fiction. He would forgo food to read these stories and does forgo all social interaction. Getting him to leave the house is a mighty challenge. It makes life interesting though, at the very least.

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  3. And, don’t forget that he is also a teenager on top of that. I had perfectly normal boys – high achieving, disciplined, polite, respectful – one day. All of a sudden I was marching one by his collar to school, literally, on public transport in London because he was refusing to go.

    I was hearing those ‘You’re not my expletive deleted parent,’ lines in respect of someone that happened to be their Godfather and they’d been perfectly happy to engage with until the switch happened.

    Oh, it goes on and on and on and on and in some respects maybe I got off lightly with losing them to SA for the duration of their teenage years because just hearing some of the stories makes my toes curl….One last one. On one of their precious holidays to me, it took me 7 hours to coax my son out of his room because he had a single zit on his nose. It took me 7 hours to work out the reason he would not come out! Then he treated me as if I was a total idiot; did I not see his face? Was I blind? (I had gone through a range of reasons with MY inadequacy, always centre stage, but I had not once thought it might be over a small pimple). Bearing in mind we were in the middle of Scotland at the time, albeit that there was one teenage girl also staying at the holiday park…

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    • OMG, you make me laugh. You are right, of course. I do have to remind myself that he is a teenager and that a huge part of his behaviour is due to that and the overzealous hormones running rampant around his body!! It is sometimes easy, in fact, to blame everything on his autism because then I can just forget he is a surly teenager.

      Being a teenager is so hard. I hated being a teenager.

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