Face of Mum

You will only see this on here once. A tear stained, blotchy face and stinging red eyes. Not an uncommon occurence in reality but a face of mum that you can’t see behind a keyboard.

Today we have spread autism awareness everywhere we have been. It would be great to be able to pick and choose where and when we do this, like I can on here but in reality we can’t turn autism on and off.

This face of mum has been up since 4am this morning (aside from the sleeping with one eye open until finally relenting and putting Cartoonito on at 6am). Apparently that’s an acceptable time to start the day – not for the first time in recent days. A 4am start combined with 3 get ups for The Small One through the night no less. 

This face of mum has been on a playdate with friends this morning.  A pang of jealousy ripped through her for their seemingly normal life. Four year olds playing together nicely in a bedroom. Parents eyes not fixated on every move their child made. She hates that feeling of jealousy but the feeling of guilt for feeling it in the first place is worse. The Monster was golden until it was almost time to go and he spread a sprinkling of autism awareness in the form of running at lightening speed through the house, escaping upstairs and trying to then come down unaided, shouting, refusing to put shoes on, slamming doors, lying on the pavement and refusing to walk to the car.

This face of mum has taken the boys to the Dr’s where The Small One had an appointment for his jabs. Here he spread his usual autism awareness by turning the self check in screen on and off and caused havoc in the waiting room, with the additional excitement of some furniture being brought into the surgery. Game over. Luckily they were then given a private room to wait in and the lovely nurse gave The Monster a pack of sweets whilst The Small one had his injections. After playing with the taps and a splash of water around the room later they left having only received a couple eye rolls from the elderly couple in the waiting room.

This face of mum instinctively let go of the pushchair for 3 seconds max to check The Monsters hands whilst walking home and he rubbed his hands through a thorn bush. In those three seconds (max) the pushchair had free rolled into the road and was still moving. Thankfully there were no cars coming.

This face of mum has received post for yet another hospital appointment for The Small One. As usual on a day The Monster is not in nursery. This mum can’t deal with thinking about that today.

This face of mum has had emails from The Monster’s Educational Psychologist today delaying an appointment made for June by almost a month and also wants another meeting in less than a weeks time, looks like she will be facing that one without Dad again.

This face of mum has packed the boys in the car and driven until they have both fallen asleep just so she can catch her breath today.

Today, this mum craves normality, an easier carefree life for her babies. 

    

​YOU ARE THE UNKNOWN

You are the unknown in my sons life,

The wait and see, 

The summit of a mountain we are yet to climb,

The thing that needs so many questions, yet gives no answers.
You are the thief of my sons voice,

The reason he can’t tell us he loves us,

The fidgety cuddle,

The line them up, tower them up, break them up,

The not always recognised disability. 

You are the destiny to our lives,

The unstopabble force,

The energy that never burns out

The bounce as near to the edge as you can,

The countless hours of laying awake in bed.

You are the most obvious in a crowded room, 

The unstoppable tears falling,

The worry for the here and now,

The worry for the future,

A spin, 

A flap,

A grunt,

A sign,

The hide under the covers and get away from it all,

The squeal at the top of his lungs,

The uninvited guest who turned up out of the blue,

The re-writing of our “happily ever after”
Autism, you are the unknown. The most unknown member of our family yet you’re welcome to take us on our journey.

Is it OK to hate my child’s autism? 

I love The Monster more than I will ever be able to describe. To Infinity and Beyond. To The Moon and Back. I would lay down my life for him. You get the picture. But that doesn’t mean I always like what his autism does to him. Ouch I feel guilty even writing that. 

It’s taken a long time to admit to myself that there are things that I plain and simply don’t like.  What autism does to him. Of course autism isn’t all bad and I wouldn’t change him for the world. If he could have a magic pill to make it all go away I don’t think I would give it him. 

There are only two things that I really don’t like. Only two, that’s not bad considering it has a bearing on his whole being. 

  1. Speech. I hate that it has ripped away the ability for him to talk. I don’t know if this is forever but I am a realist and I know that he perhaps won’t ever talk, at least not like a ‘normal’ person. I hate that I might never hear him say “mummy”, he might never be able to tell me he loves me. Telling us he is hurt, sad, happy etc can be done through other means, i.e. body language, signing etc but telling us why is more difficult. I might never get to hear if he has an accent (although to be honest, who wants a brummie accent 😜). I hate that we might never be able to talk over the phone. I even feel sad that his friends and peers can call me by my name yet he can’t. 
  2. Inability to follow instructions / listen! The Monster does what he wants, when he wants contrary to what we tell him. We are forever giving him instructions, more often than not for his own safety. We yell “slow down” a lot. He runs everywhere. we gasp at all the near misses he has because he is going to fast and not looking where he is going. How we haven’t ended up in A&E yet I don’t know*. I feel like I am constantly giving out a negative vibe since “Don’t do that” and “No” are probably the most widely spoken words in our existence! He doesn’t learn from experience so we have to repeatedly give out the same instructions. For example: “Don’t touch the TV” – he’s already broken two and do you think we can stop him messing with it? Not a chance. The most stressful thing in the world is visiting people and new places since instructions to not run wild around peoples houses, to sit and chill and / or play with toys falls on deaf ears. 

    And you thought sleep was going to be up there with the things I hate didn’t you!? 

    Would you admit to things you don’t like about your child? Does it make me a bad person for not liking these things? I don’t think so, I feel guilt of course but autism isn’t all bad. Challenging yes. Happy, unpredictable, fun, quirky and fascinating. Most definitely. 

    *in hindsight I should’ve taken him to A&E when he found the only bit of metal in a soft play. He fell and hit his head good and proper. Even now, about 2 years on you can feel the lumps on his forehead and if he bangs his head (quite often) it’s a cert it will be in the same place!