Something we do every year, even before we had the children.   Aways at my parents house, what started off as a larger shindig of friends and family has over the years dwindled to close family which quite frankly is fine by me and makes for a much more chilled evening with Fleur.  We handled some early anxiety by packing a bag with lap top, earphones, iPhone and dollies and with the promise that the fireworks would all be viewed from the safety of the bedroom overlooking the garden.

I was so very proud of the way she coped with last night,  the sheer delight on her face, lit up by the multi coloured cascade illuminating the sky  was an absolute joy, we oooed and aaahd at the show of colour,  of course once they were finished she retreated to the solace of  the other room were she had cocooned herself with  her paraphernalia of items that help her feel safe,   but that was ok, we had shared a moment and I loved it.

Artie had his friend round today for a play date and lunch,  Fleur had been pre-warned of this and it had been on her board.  His friend was due round about 11am,    with a countdown on the clock I hurriedly attempted to get her out of bed and at least had breakfast before his arrival, knowing that once a guest was here there was little or no chance of getting her out of her room.

With the bribe of Mr Bean on TV we managed it …..just.  After breakfast she resumed position on her bed and played Bruno Mars’s lazy song loudly!  Having settled myself down with a coffee, the task ahead was a rather daunting one of getting her out of her pj’s and into some proper clothes before lunch time, which normally being at 12pm was going to be tricky, I decided that today was most definitely and 2 coffee morning and so put the task off a little longer.

With lunch sorted and with the promise that she could eat in her room with my lap time to watch ” Justin’s House” for the zillionth time, I settled down to escape into my kindle, which bizarrely is,  after my kids, hubbie and dog my most treasured possession, Oh how I do so look forward to those 10 minute windows of calm.

We all managed to go out for a walk with our beloved dog after lunch, Fleur hung back staying well away from the noisy boys.  It is so important to get out there and see “normal”  things, after all, the world keeps on turning.

The second half of the afternoon after dropping home Artie’s friend was to involve a trip to a local shopping centre, which Fleur loves,  basically because it is huge and spacious with pretty lights everywhere, it is also big enough to not be too busy even when its busy.    So with a deep breath and armed with ear defenders, earphones/iphone we set off.

All hopes of a relaxing mooch around the shops were quickly thwarted by Fleur who, loving the open space and running, did exactly that, she ran down one side with hubbie in hot pursuit all the way to the end, only to do the same up the other side.  We all stopped for a breather  to negotiate everyone’s tastes for dinner and then we were off again, Forest Gump sprang to mind as I saw her plait whooshing about from side to side as she picked up speed.

We came to the restaurant that we had decided on,  an upmarket burger place,  which cross fingers, would have something for everyone.  We were seated quickly and by luck were by the window which always helps with Fleur’s feeling of being hemmed in.  Shit and double shit Fleur was hungry, we glanced at each other as the time from ordering to food arriving seemed to be endless, the colouring in sheets and word searches provided by the restaurant were just not going to cut it.  I pulled out the Disney princess CD that we had brought for her that afternoon and we marvelled at it from cover to cover just to buy us a few more minutes!

Hurrah! the food arrived, everyone tucked in, for myself and Hubbie it is basically, get set go, there is no relaxing meals here thank you very much, the object of a dinner out is to all try and finish at the same time so that there is no idle time to be relaxing, you eat you go, well that’s how she sees it.   Fleur was clearly enjoying the experience, the place was busy but not loud, she could see out the window and was demonstrating her happiness by lots of flapping, head rolling and laughing, tomato sauce splatted all around her chin,  I caught a young girl on the next table staring as kids do, Fleur, thankfully is oblivious to this, me on the other hand, well it pisses me right off,  I gave the girl my best Paddington Bear hard stare and she relented and looked  away, childish I know on my part, the parents are at fault not the girl, I make myself feel better by pretending the girl was just jealous, why wouldn’t she be, our table was much more fun.

By the time we drove home it was already dark which created much excitement for a spooky night time adventure.  After sorting everyone to bed, a quick cuppa and an episode of Buffy to keep my sanity, I collapsed into bed, exhausted and  with my burger still sitting on my chest having eaten it so damn quickly,but still with a feeling of accomplishment that today had been a good day.

It’s nice to have written this down, some weeks  these days good days are few and far between.

 

 

so, parents evening…. it comes around once maybe twice a year, I have never dreaded it before  but  things haven’t been as plain sailing as in recent years, we have now entered a new era, most commonly known as puberty, its a small word, one that up until now I only had my own experiences of boys, periods, mood swings, rejection, the feeling the world was about to end because the boy of the week didn’t look at me the right way,  but now, with Fleur nearing her 13th year I am presuming this is what hell is like, but a tad colder!

The meeting was booked, Fleur had been warned, it was on her board and the conversation had been had of the plan.  I was to meet husband and the kids at Fleur’s school straight from work, I was just getting in the car when the call came in.

” We are at the school, I can’t get her to get out of the car”

My stomach, heart and all of my being sank, knowing that all of the energy I had left would have to go on getting her out the car and in the school, rather than on the meeting ahead, I started the car.

” I’m on my way….”

20 minutes of begging, pleading, bartering, you name it we tried it, Husband and Artie hot footed it to the school to explain the situation, we waited in the car park of the school, Fleur repeatedly saying sorry although she was unaware of what the apologies were for, emerging from the school I spied hubbie, Artie and Fleur’s teacher.  OK , parents evening in the car park, what a novel idea, I knew I should have popped my fold up chair in the boot.

Who would have thought the a simple task , a ten minute meeting at school would evolve into such a stressful scenario for Fleur that all levels of communication have failed and the only result ,  my guilt ramped up an extra notch and Fleur feeling bad with herself but not really knowing why.

Note to self….. sort child care for next time.

 

 

 

I often wonder if I am blessed to be here…. on this earth.  I have asked myself the question “why are we here”  many times, I struggle to find an answer which in itself is futile as there is not a definitive answer.   Since having my children part of this question is answered,  I know why I … as a Mum, carer, confident is here, but for me as a whole person, the girl, teenager, young woman ( ok, who am I trying to kid, a woman in her middle ages)  I am a shell of a person I once knew and fear like so many others, if not all, that I am now defined by my children.

Having children changes you that’s a fact,  having a child with autism changes you beyond recognition.  All you thought  you knew is irrelevant, trying to see the world as she does is one of the biggest challenges I have faced, trying to maintain a level, happy, calm environment for my beautiful  girl is a daily struggle…. and she is so beautiful, sometimes I swear I can see a light surrounding her.  This blog is an insight into that life.

Darling  Fleur, we live on the outside looking in,  and we do so wish we could join you.