Saturday, 19 November 2011


So life continues to be a mixture of fun and stress here in the O&C house. J is continuing to do well on his Mediknet and his reading is now progressing rapidly.

On the other hand some things have not changed - least of all J’s rages which are prolonged and worrying when they occur. I can rationalise the lack of social communication skills but it’s still hard to manage and both J and I are usually exhausted after such incidents have occurred. In addition J is usually very distressed after any rage – he recognises he has lost control and it scares him. We continue to work on this with various resources and have identified the things which most set him off (frustration, fear, anxiety) and are beginning to work on things which might help.  Although I do not believe in second guessing any child I must admit to feeling some trepidation about his teenage years!

J’s rages are not daily occurrences however, I long ago took the view that if what he was doing was not actually harmful to himself, others or property that it was easier to let him get on with it and learn from experience than face the inevitable rage which occurs if he is stopped. This makes it sound like I sit back and allow him massive liberties and maybe to a certain extent I do, but it’s an action designed to help ME cope with his daily needs and to cope with HIM!

On the whole J is well behaved and when medication is used can be quiet and able to focus on an activity for 30mins or more. He has never been badly behaved in school   - to the extent that the teaching staff doubted he had ADHD (prior to diagnosis), however, with medication once he was diagnosed, his level of achievement increased beyond all expectations, he can now read – hesitantly and unsure but it’s a world away academically from where he was a year ago.

It isn’t easy though and there are times when I have to physically remove J from rooms (or physically remove objects from him) when he will not listen or stop what he is doing. Times like this usually end with J stamping upstairs to his bedroom and slamming his door as hard as possible, the door frame is coming away due to this behaviour.  It’s at times like these when I think I cannot cope with the combination of J, with the house, with work and it can all feel overwhelming. Sleep continues to be an issue and despite everything it is still after 11.00pm before J falls asleep at night – on bad nights I can add an hour or two to this.

So, on 31st October J left school and announced we were “going trick or treating”. In actual fact we were NOT doing this as I had a meeting to attend which I could not miss. In addition we have never done the whole “Trick or Treat” thing as the first five years of J’s life were spent in Somerset in a house 2 miles from the nearest town. It’s just not something I ever got into with J and consequently it never crosses my mind. J has never asked to take part in this ritual previously so forgive me for not having thought about it!

J did not take the information that we were not “trick or treating” well and began a massive rage which lasted for the next 2 hours on and off. He screamed, he raged he shouted, he lashed out, he kicked the glove compartment of the car hard and to be honest it was hard to drive safely. In despair and because I was at a loss I drove to my Mum’s for support with J, by the time we got there he had calmed down somewhat but still blew up on and off and indulged in a spot of head banging which he still does from time to time when he can’t cope.

It turned out that the rage had started in school with “tag rugby”, which needs a certain level of coordination which J does not possess, it continued into Maths (new class, new group, different teacher) and even his lovely LSA Sally could not reach him through his mood. I merely added to it when he left school, in his mind we were going trick or treating and Mum was saying “actually not”.

One of the hardest things to know with J is when his behaviours are due to his ASD or if he is simply playing me up.  In an attempt to try and be understanding, I often end up giving him the benefit of the doubt about some actions and he doesn’t always deserve this. So I could accept his frustration and disappointment about NOT “trick or Treating” I could accept that he found it difficult to express these emotions in a more acceptable way and yet part of me felt he was simply behaving very badly.

So – he rages.....and he is getting bigger.....and I am worried...and I am exhausted with the late nights, the lack of sleep and the difficulties in managing J as a single parent. This weekend his Dad is here and I am grateful but they have already clashed. M had said J could sleep in with him but lost all patience with him when he was fidgety and giggling at 10.30pm, the upshot is that J ended up in MY bed once more. Things have to change and I need help with J – proper help and not just a list of local support groups.....


Oya's Daughter said...

I can completely understand where you're coming from. My son's behaviour escalated so badly he was getting constantly excluded.

As children like ours get older they just get stronger, so if things aren't dealt with now, it can often be too late later. It's a sticky wicket as well as my son (whose rage is more extreme) could well be written off as "just being naughty" and end up in a school for "naughty children" which would pretty much solidify his fate.

How good is your relationship with the school? It may be worth getting a referral to a children's mental health unit if they're any good in your area (mine was a bit rubbish but after getting a independent specialist in to give advice they're being more proactive).

Essentially what you need is someone who is capable of giving a full assessment. As you've rightly identified, the rages are caused by triggers, but you need someone to help you find those triggers. There's no such thing as a "sudden explosion" though it looks like it to others...I know when my son has been on a slow simmer that eventually becomes a boil. It's just a matter of finding someone who can help you turn down the heat. You can try contacting the National Autistic Society (though I've found them sort of useless) or contact the local Carers UK in your area.

Good luck

Order and Chaos said...

Thank you so much for your reply, it helps when people understand. It's always other Mums with children also experiencing problems who do the understanding.
Not sure if the school can refer here but will ask tomorrow at the Annual Review. A also seeing my GP next week and will ask her for a referral into the mental health unit as well.