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


Autism awareness month 

April means autism awareness month and 2nd April is autism awareness day and it’s not something that was ever part of my life, not until around five years ago when my youngest sons teacher mentioned to us it might be worth taking him to the doctors as there was a few things that were ‘red flags’ for her. She was a lovely teacher and I will forever be grateful to her, we were lucky she was his teacher at the time. She was the schools senco at the time.

My brother and sister both have learning difficulties and growing up in a house with two elder siblings with more needs than me wasn’t something I ever thought was odd because I just grew up with it so to me it was normal that my brother and sister couldn’t read or write, obviously I knew it wasn’t ‘normal’ but to me it didn’t bother me and it was just my brother and sister.

So when this teacher said to us about going to the doctors it was a little bit like ‘oh there is a reason he is like he is’ and also ‘there isn’t anything wrong with my child’. We knew that little Jim wasn’t like his middle brother, we knew Ted wasn’t like Jeff, we both knew they were quirky but they were our sons and that was ‘normal’ to us, no it’s not normal that one of your sons sniffs people and has a mild form of Tourette’s syndrome (not to the degree of swearing but noises) and no it’s not normal that your child wants to know what we are doing every second and goes into a meltdown but your know, it’s him and we coped and wasn’t looking for a reason why my two boys were ridiculously loving but odd (you know what I mean!).

So we took little Jim to the doctors but one thing with the diagnosis route is that some kids with mild autism have this knack for acting ‘normal’ for brief periods when they think they need too and then you are back to square one. So it’s an ongoing  process with little Jim, almost five years down the line for him but even though he isn’t ‘official’ we now are able to use different coping methods with him, we don’t let him ‘get away’ with things but when he has gone into a full on meltdown because we’ve gone the wrong way or we’ve said we will do something and can’t, we now know how to cope with it and have put measures in place to make him life easier (the ear defenders were a god send for the shops!).

It was until little Jim was going through it all that we began answering questions and instead of saying Jim we would say ‘that’s Ted though’ and he was very lucky that he was in secondary school and reached a point in his life we didn’t have the same doctor as little Jim and wasn’t a different diagnosis process and it took about two years (which isn’t actually that long) but we got a diagnosis for him and without it, he wouldn’t be having extra help with his GCSE’s now and he had a greater help at school.

It doesn’t effect Ted at all, when he went to secondary school myself and his father were very worried that he wouldn’t cope, he wouldn’t have any friends and his life would be very solitary (even at that point we hadn’t even thought of getting his tested but he was a very ‘on his own child’) but he is predicted A’s (or those new fandangled ones) on his exams this year, he has got a place on a media course for college and most of all his has some amazing friends (they are all very odd, just like him but they are a great mismatch of boys) so he has done amazing, wonderful things, he has been abroad on his own with his club he was in, he has been to London on a theatre trip for a few days and have done something no one ever thought he would ever do, every year since he started at secondary he got up on stage and took part in all the school musicals every year for the last four years, he didn’t this year though due to his exams but he was wonderful and grew from a hunched over little boy into a confident young man and I am very very proud of him, he hasn’t let his diagnosis stop him, in fact I think it spurned him on more.

As for little Jim, it’s an on going battle and because of the changes in my life he has found change hard but he is coping and he has bouts but on the whole he is coping but is far behind at school with his reading and writing and still with his social circle suffers but Ted did the unthinkable there is no reason Little Jim will either.

I read a poem when this all started called ‘welcome to holland’ and really does sum up how we felt back then: 

Much love V xx