Little steps.

I haven’t posted for a while.  Things have been pretty full on of late.  I feel I can see some light at the end of the tunnel but on the way I feel we keep having doors shut in our face.

It all comes down to the usual terms being bandied around, “overstretched staff” ” no funding”  “not enough hours in the day”  usual stuff which I completely appreciate and understand to a point but this is my daughter and she is struggling and unhappy so for fuck’s sake ….. sort it out!!

 

Smack in the face.

I have today been hit with the realisation that I will out live my daughter,  the hard hitting  truth smacked me in the face while I was doing the sandwiches of all things, but do you know what is worse…. is that I hope this is the case because everyday I become more and more scared for her and fear what will happen to her if I am not around.

It is a reality that I am not comfortable with but a reality none the less.

PDA

So, the other day during the Christmas period, my hubbie came in the kitchen and said, “I’ve been reading about PDA” .  Ooooh I stupidly thought to myself, are we going to become one of those couples that make everyone sick with their pda – public displays of affection ?  How exciting, maybe we may even try a little al fresco, if you know what I mean.   Alas no,  it was actually a report he had read about Pathological demand avoidance AKA PDA!!

Aaah, well there we are, that is much more fitting to our world.  After having a really awful, terrible, shit, horrendous and all the other adjectives that describe a period of time known as hell, basically the last 4 weeks of the winter term have been fight or get beaten to an emotional pulp,  we were clutching at straws about Fleur’s deterioating  behaviour at school, when he came across this report and then subsequently got directed to the PDA website,  which is a branch off of the National Autistic Society website and all of a sudden we had a very low key light bulb moment, for in that instance it all fitted, all that we were reading was so true of our girl, it was both scary and emotionally uplifting.

We have informed the school who have welcomed this possiblilty with open arms and are now waiting for Ed psych to re-assess our girl, it is all completely manageable if the right solutions and found and applied to certain situations.

I have been more scared than this and on more than one occasion, but this comes pretty close.  Watch this space is all I and say… if we manage to get some form of diagnosis of  PDA this may open up more doors and help for our girl, we will never stop fighting for you sweetheart.

 

And so this is (an Autistic) Christmas ….

Here we are then, the big day, the day that the whole world seems to lose their shit over, well not in this house.  Christmas with an Autistic child and a non autistic child is incredibly hard.  As a parent you so, so want to be able to do all the magical over the top things that make truly wonderful memories for your offspring, but sadly this cannot be.

An autistic Christmas Day usually involves treating the day like any other.  Yes we have put the tree up, which Fleur enjoyed decorating, we left a mince pie and milk for FC and a carrot for Rudolph, well me and Artie did, Fleur was really not fussed about feeding the strange over weight man that apparently comes down the chimney!  Every time I say or hear this I just think, god what a load of nonsense who believes this stuff!  We also left the sacks out to be filled.  The presents  in Fleur’s sack were left unwrapped so’s not to cause any further apprehension or fear, there have been no Christmas songs, silly hats or any Christmas paraphernalia.

You know there are some days where you wake up and wish the day was done already, well that’s how I feel, if we can get through the day without any major meltdowns that would be the best present and one that no amount of money can buy.

And do you know what, I think if you asked all the people you knew to truthfully say which kind of Christmas they would prefer, they would choose Fleur’s kind, and society deems them to be the ones who are different, surely it should be the other way around.

Happy Christmas my darling girl, you are the brightest light of all.

 

Is it wrong to feel ashamed?

The last 10 days have, to put it mildly, been a real fucking challenge.   Fleur has been the most unsettled I have seen her for a long time, there have been numerous triggers for this,  including noisy girls at school, time of the month,  Christmas and most upsetting for me, her Birthday.  Tomorrow Fleur will be 13.  For me this is a huge occasion, one that I want to throw a party for,   shower her with gifts and  truly celebrate this milestone, this is magnified by the fact that when she was 2 weeks old I was told she had a 50/50 chance of survival.

But instead, we are ignoring it to the point of silliness,  if anyone dare mentions it I feel scared that it may tip her over the edge, I keep having flashes of that very famous episode of Faulty Towers, you know the one… Don’t mention the war!

I feel so sad I can’t even cry, I feel ashamed that I resent her for the fact that she is denying me the chance to truly celebrate the wonder that is her.   So instead of all the balloons, cake, candles and banners,  tomorrow will be a normal day, her presents will be snuck into her room unwrapped to be found after school with no mention of why they are there.  It will merge into all the other mundane days that we survive, but in a quiet 10 minutes of the day, I will sing a very quiet Happy Birthday, light a candle, and thank all the distant beings that live beyond our galaxy for blessing me with her, because I know deep down that she is the most amazing beautiful sole,  she is my Fleur.

Happy Birthday beautiful girl.

Ritual

There is a sequence of events that has to happen in the  morning, in the evening before bath, after bath and before bed.  If this routine or ritual is not followed, things all go a bit messy for our girl and then we all have to suffer the consequences!

There are the wooden dollies that need their clothes changing in the morning,  curtains open, blind open (then shut again to get dressed)  all the sensory lights have to be turned off in the right order, the calendar has to be changed, and dollie has to have her day clothes on, all this before breakfast makes for an exhausting morning especially when you are up against the clock to get out the door on time for school.

The night time routine is much the same but in reverse I guess, the wooden dollies have an extra change of clothes though, they have pre-bath clothes and then night time clothes.

If we try to rush these things, skip part of it, or god forbid do one of the jobs for her, for example dare to shut the curtains, we have to go back to the very beginning, so for goodness sake, remind yourself, however much of a rush you are in do not interfere with an autistic child’s  routine, it will throw them off for the rest of the day/evening and I can safely say, from experience, it truly isn’t worth it!

Therapy

There is this other thing going on with Fleur, quite a major thing really, one that I may well write about sometime, it is something that consumes me everyday, I have had “therapy” sessions for it, been given pills to cope with the stress of it but none of that really worked for me.  I do so like to have time with my thoughts and be myself, to  just be me and not mum, wife, carer if only for an hour or so.   My therapy sessions are now led by something with 4 legs, a fierce loyalty and a zest for life and walking that makes my heart lift.  She makes me get up every morning, forces me out there to see that the world keeps on turning and keeps me …well fit, fit as a butcher’s dog!   Cookie is my beloved spaniel, we walk roughly 4 miles a day, more if time will allow and she keeps me level,  we walk in the woods,  listen to the birds, breath in the aroma of the forest floor….well I do, she runs off trying to catch that ever illusive squirrel.

She is nutty, sometimes a tad annoying, treads mud through the house, will not entertain a lie in and she smells a bit, but I love her and all that she does for me so unknowingly.

 

Firework night

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.

Ahh.. the weekend – such fun !

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.

 

 

Parents evening.

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.