Tuesday, 23 April 2013

Autism broke me...

Autism broke me yesterday. It took my already fragile mind and smashed it to pieces. It took my emotional state and shook it until in crumbled to nothing in front of me. Autism broke me and left me scarred.

I thought I'd moved past the damage autism could do to me but it's been creeping through my self conscious all week. Whispering evils, spitting self doubt and winding itself around my self control so tightly I can barely keep in contained. Like a toxic poison, autism has bleed itself through my veins, bubbling under the surface ready to administer the final dose when the timing was right.

That time was yesterday. Built up of a week of small, insignificant autistic actions. After school meltdowns, deliberate destruction, violent outbursts all lead in one direction where your patience can't go. 

The day just didn't go as I hoped. Jesse isn't coping to good at the weekends. Lack of school routine makes for an unhappy j-balls. Her clinginess kicks up a gear and all the distraction in the world won't stop her cries. The sun was shining, the garden was full of toys but the day was heavy with sadness. I knew something was brewing. Something was in the air waiting to fall on me.

Cody has started to deliberately tip his milk and juice on beds, on floors, on others. I'm a pretty liberal person but deliberate destruction is not acceptable. If he wanted to play in the spillage then I'd find somewhere he could do that but I can't accept that my son wants to soak his bed then walk away. 

My patience is finely tuned. It's barely intact but I know I can't lose it. There's simply no point. Nothing to achieve. So as I turned my back and heard the splash of milk on my kitchen floor I braced myself for the sight that would greet me. I'd just poured him a full bottle. One he'd asked for. Left it on the side a second to get the lid and he'd reached up and upturned the lot on my kitchen floor.  My heart sank faster than the bottle emptied. I took a huge gulp of breath. Felt the angry response catch in my throat. I managed to hold back the natural reaction and force out a suitable sentence for my autistic son to understand.

"You have made a mess. This makes mommy sad." 

Through the tears welling in my eyes I grabbed the mop and swept furiously through the puddle. As I turned my back to put the mop away I heard another almighty splash and turned to see a full 4 pint carton emptying itself on the very spot I'd just cleaned. Cody stared at me, lid in hand, waiting for my measured response. It didn't come.

Like some Bronte heroine his name left my mouth in a strangled despair. I couldn't move only to sink my head into my hands. I felt a sob catch in my throat. 

I'm aware it doesn't sound like much happened but it's relentless. Absolutely relentless. Autism. It just doesn't give in until it breaks you. Lee took over and Cody was ushered out of the room. I tried to reason with my child. Explain how sad mommy was. I want to ask him why? Why is he doing this? What made him tip not one but two bottles of milk out? I want to explain to him he can't do this? Can't do it to me? But there is nothing you can say to a boy who doesn't respond. Who's barely listening to you. Shows no sign of understanding what he's done or why is would upset you.

Instead he moved on the the computer, that he'd already broken in the week by emptying sand into the keyboard. He asked to watch his favourite song on YouTube. So I filed away the upset and found what he was looking for. Then started an hour of grunting, whining, slapping, howling, growling. Not the right thing. Second guess me mommy. Guess what I want to watch. No that's wrong, frustration growing. Words failing and a desperation for me to get it right. Get It Right. GET IT RIGHT.

Internally my mind has lost it in response to this bashing. "tell mommy" growl "tell mommy what you want" howl, slap " point to the one you want " kick, slap "use your words" bite , spit "I can't sit here Cody, I don't know what you want" grabs me "then tell mommy, you can speak Cody..I know YOU CAN SPEAK" 

But he won't. 

He can.

He won't.

Autism broke me. I sat with him on my lap furious pressing video after video. Tears streaming down my face as I was mentally and emotionally as well as physically abused. When finally it settled down, he just wanted me to sit and hold him as he watched video after video. I just wanted to crawl into a ball and cry.

You see, it doesn't have to be a major event that finally breaks you. It's the ever changing face of the autism that unnerves you. That raises your anxiety. One minute he can talk. The next he can't. One minute he's enjoy sensory play, the next minute he's being destructive. I can't reason with autism. It has my son surrounded. It locks him away from me when I'm most upset and just want to talk to him. 

haven't "talked" to my children, emotionally expressed myself in the whole 4 years they've been on this planet. And you will never know how that destroys me. If you are a muggle mommy, look at your child now. Ask them a question. Tell them you love them. How did they respond to you. Did they answer, or smile, did they run over and give you a hug. Did they come out with something witty or meaningful. Now imagine there's nothing. Instead of a smile, a blank stare. Instead of a response, silence. Silence. Or grunts. Or they turn their back on you. 

And the most you can hope for is that you hold it together long enough for them to understand its the autism you hate not them. It's what makes them do these things that you get frustrated with. I hate autism. I love my kids. The autism breaks me. It tears away at me every day trying to make me lose that control. It pushes my buttons. It hurts. Not my kids. Not my kids. The autism inside my kids.

Do you understand what it's like to look at your kids and know that no matter what they throw at you you must keep your cool. They don't understand your shouts, your tears, your anger because it's not them. It's not Cody. It's not Jesse.

Autism I despise you but you will not break me again. You will not make me angry towards my babies. You will not make me scream internally. You will not exhaust me to the point that my body shuts down on me like last night. You will not floor me, poison me, destroy me. 

You will not keep my children at arms length from their mother and father. I will take them back. I will be their mother in more than name. I will get through to them somehow. I will reach out and wrap them in my arms. I will hear them respond to me. I will ask and receive. I will hear "I love you mommy".

You won yesterday. I let you take me to hell and then dump me when you were done. You kick the shit out of me and you leave me crumpled and in pain. But I get up. I keep getting up. Each time a little less sure of myself but I'm on my feet and ready for the next kicking. You can not get between  me and my children. 

Because, Autism, you have made me a stronger person. The irony is Autism, by kicking me down you have forced my to find the courage and strength to get back up! 

I may lick my wounds, I may wimped and cry but I'll never stay down for long.

4 comments:

Julie said...

Donna - i'm sure many of us have been to this very low point and wondered why we bother. Then we look at our kids and know just WHY we do it.
Peter is "somewhere" on the spectrum and while he communicates with you, it's on HIS terms and what HE wants to talk about - there is only so much Disney and Thomas the Tank you can take before your head decides to go from throbbing to exploding. I scare my "normal" daughter more when I cry. If I cry, it means that I am heading for the bit of floor in the corner and woe betide you if you come anywhere near me - you might end up taking the hubbie, the kids and the cats home with you while I sob my heart out.
If I stayed nearer, i'd come over. take the mop from you, cleanup and then make you a cuppa.

Nannyviv said...

And in hurting you, it hurts us because like you we can see OUR beloved child suffering and can do nothing to help...and you know what that feels like only too well. We love you all so much xx

Ila Adkins said...

:( my son does that too. With the milk. And the destruction. And the grunts and pointing. :/ he is two. He CAN talk but chooses not too. It's extremely frustrating & he also spits milk everywhere and deliberately tears his food into shreds and then throws it on the ground. He doesn't have autism though, I think. His pediatrician says I need to take him to a child psychologis

Anonymous said...

Just read your post and I'm sitting here with tears and a heart full of love for you. That is why we carry on isn't it? Because we love our children and know we must hope and believe and try try try to understand and help. I feel broken right now and scared and hurt and dreadfully worried about my Patrick who is destroying all his toys one by one and suffering hell because he has done it. I hear his screams and anger and want to die as an exchange rather than have him suffer this. You remind me that I am not alone and I also have to keep trying for him. Lets hope things will improve and help will be found whatever is needed either insight or practical help. My love CX

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