Despair and love

Autism, its autism awareness month still and yes, I am an autism mummy, I’ve been one for years but this weekend it’s been an absolute fucking nightmare living with an autistic child and this will probably be totally the wrong post considering my last one was embracing my autistic children (I have two) I must share with you the real truth about living with a child On the spectrum, try as I might to remember the ‘welcome to holland’ poem, the sheer reality is this: holland is a living nightmare sometimes and when I’ve had a weekend like this, I really wish just for a small nano second that the plane didn’t got to holland but my chosen destination of Italy.

You see mini Jim stayed with us for a week and it was relatively ok, well actually it wasn’t, it was a tiny bit horrible, watching what we wanted on tv was a no no, big Jim and I wasn’t allowed to be alone for longer than two seconds and I really wish I could change what we were having for dinner at the last moment without world war three almost erupting.

Of course I wouldn’t change my little boy I really wouldn’t but it’s times like this when I am stood in a car park in streams of tears and despair that I think ‘thank fuck I don’t deal with this everyday’, which of course sounds very selfish of me but his father has always been much better at dealing with him than me (I have mentioned I don’t have that ‘mummy gene’) he also has the freedom to send him to another room when he gets to much, we don’t have that luxury unfortunately and it’s became clear that we need to move faster on the moving front if mini Jim is going to carry on the way he did this weekend.

For the best part of two years he has calmed down and considering when he was in his last year of primary his whole world collapsed when mine collapsed too, he coped remarkably well, he had a few moments that he reverted back to old Jim (like the day I moved out and I prepared the teachers for that day but did any of them speak to each other..like fuck they did so when I went to pick him up from school we got called over to say he had really misbehaved..no shit Sherlock!!!) but on the whole he improved at school both with his learning socially and emotionally too. Then last year I moved away with in two weeks a new lady moved into their family home and a few short weeks later he went to big school and since then his behaviour had been slowly declining again, all the coping skills he learnt seemed to vanish over night, his step mum has found it hard with his behaviour but his dad handles it well, I on the other hand feel like I am stuck in holland with no fucking clue what to do, every tactic I learnt over the years and nothing seems to work and it doesn’t help that he is older now and follows what and how his older brothers act.

Everything is ‘his way or no way’ from where we go to how long we stay, he had always been the same but I guess when he behaved like this before it was me and my ex husband and we would bounce off each other in terms of one is getting upset the other will take over and as much as I love big Jim we haven’t got that dynamic and I always have it in the back of my mind, little Jim and his problems are for me to sort out and Big Jim didn’t sign up for an exhausting weekend of not being to do as he pleases or if he does the end result is a major meltdown, so I always have that in my head and although Big Jim wants to help I won’t let him because he fell in love with me and then my kids but he didn’t fall in love with the crazy person that erupts every five minutes because we’ve changed our minds, we can’t do something or simply because we don’t have a plan in the first place.

I love those parents that can cope, that can deal with having to live their life by a plan and times but I can’t live like that and I absolutely hate that term ‘they have to learn’ but in some respects they do have to try and cope with the unexpected, especially now my kids are older, when they are younger you can live your life to a certain degree of planning and rountine but as they get older they have to start adapting (my children only have mild autism by the way, when I say this stuff I am not aiming it as children or adults with ASD that simply can’t function without help etc) to life, because sooner or later exams are going to happen, work is going to happen so to some degree they do have to start ‘learning’ but by that I mean us setting them up and trying to teach them skills to cope with living in the big wide world, skills that I obviously don’t have.

Take this weekend for instance, come Saturday it was the longest I had actually spent 24/7 with my son for months, actually thinking about it, last summer, he came to stay when we were in the house but this was together ALL the time, well it wasn’t all the time, I had to go to work for a few hours each day but when I got home it was relentless, on our own we would settle down to watch mike and molly when I got in and we would wait for Big Jim to get home and that’s when it would all change, I guess because I was happy to do what he wanted and have been used to just doing what he wanted but put someone else in the frame and it all changes. Saturday was particularly bad though. We did an event for charity and he was ok-ish there, apart from wanting to know when we were leaving and could he eat his way through the pile of sandwiches that was ok but on the way home it was bad, I had to stop because I couldn’t hold it in any longer and I couldn’t cope and just started crying, usually at this point George would take over and things would be fine but Big Jim doesn’t really know how to handle a child like this as has never had dealings with anyone on the spectrum, he tried to calm things down but nothing we did worked. And the laughing at us just made it a hundred times worse.

Yesterday he wasn’t so bad but after that long I was thankfully I could hand him back to his dad, we had cuddles when I left and I know he is looking forward to next time he comes and we have baby daddy to watch (that’s his unhealthy obsession!) and I am looking forward cuddles with my baby but for now I am enjoying the peace and quiet!
Much love V x

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