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consumed with asd worries

egcp

As with all our stories its difficult to cut it short when trying to give as clear a picture as possible....so I will apologise in advance.

I have recently given up work because I have been called by the school on a weekly basis to collect my son / meetings - he wont allow any communication at the door.

He is 8, moved to junior school  (same children, same site, but are very seperate schools. always had up and downs - except for last year, we presumed he had outgrown it. when he was 4nursery suggested camhs . If im totally honest I blamed myself for his behaviour. It was also towards the end of the school term so we thought we would see how he went in infants. He did have problems and tantrums, I was called to the school several times and asked to collect him on a few occasions but his behaviour always seemed to settle down once he had had a chance to settle in.

Last year Yr2 I wasnt called in or spoken to at all, and they were very impressed at how he turned things around.

He has always been very chatty, quite loud but also very clever with his reading, spelling, recalling information and vocabulary-not a keen writer and handwriting doesnt seem to come very naturally to him. He was on school council, in the choir and in guitar club - very involved.

This year however,......on the first occasion I can recall the teacher tried to communicate an incident at home time to me - he ran around the playground, screaming, threw his school bags at me, made a gun with his fingers and pretended to shoot us and threw grass at us - he was suspended. The incident she was trying to tell me about was minor in comparrison. has been suspended for a further incident also.

His self esteem and self control has deteriorated since. He is obsessed with one friend, who he physically attacked yesterday as he felt she was spoiling his game (I think it was more the case she didnt want to play to his rules).

He is having frequent outbursts in school where i can only describe him as unrecognisable, eyes glazed, there is no communicating with him, he is in a rage - I might add here iv only witnessed this twice both times at school. But they are reporting other cases of this to me as well as regressive behaviours, (that i do see at home) growling, hissing, going under the table, anxiety and the aboved mentioned outbursts resulting that they have restrained him several times this year. I dont agree with this but in all honesty am failing to propose an alternative when I couldnt even calm him down on the occassion I witnessed it. The only thing that seems to work is humour/distraction but this is only possible when he is subsiding and able to focus / listen. He can behave like this at home but more hyper/disrespectful than angry.

 I am told he is restrained because he is a danger to the other children/himself....throwing chairs over, pushing tables up, throwing pen pots and he pushed the big A frame board over last week. The class have been removed on several occassions because of his actions.

He is under CAMHS-referred to peads but wont see anyone till august. Had Ed.Physch observation last week (all of which iv had to push and wait in turn for)

His teacher has told me in all her experience as a teacher she has no idea how to approach his behaviour. Iv been given little support or direction, I dont know what to do to help him, I've spoken to ACE and had a parent advisor come out to me but she said as his problems are school based theres little she can do.

School and SENCO are convinced he's on the asd spectrum somewhere and warrant the investigations.

Other behaviours I will quickly list:growling, hissing, regressive body langueage/speech/vocab, withdrawing, aggression, struggles to get to sleep, poor eye coordination, can be highly anxious: worried about me dying, worries about bad things happening: trees blowing over, train crashing,bus crashing, scared (understatement) of the wind, thunder, fireworks, unexpected noise, needs definates: you cant say you might do this or that as he takes it as a promise, can flip out over things id call minor: if i get the wrong sweet/something is sold out etc.....no rationalising. He reacts to loud noises like the hand dryers especially those new ones that really blast your hands!! I dont put the stereo on because it seems to trigger him into hyperactivity.

Iv probably written too much...sorry, i just dont know where else to turn for advice.

  • When are those supposed "educators" going to realise that "behaviours" in children like ours are not "undesireable" or "bad" they are COMMUNICATIVE.

    Many of our children cannot communicate, have sensory difficulties and are completely devoid of a voice.

    The ONLY way our children have of communicating pain, distress, sadness, happiness, tiredness or hunger is through their "Behaviour" and the sooner these idiot teachers wake up to this the better.

    I was hauled into my sons mainstream school every single day and made to feel like the worst parent on the planet because my little boy simply could not cope with the stress of being in the classroom. He was never "bad" he was struggling yet they blamed him, me, my husband- everything except themselves or their "teaching methods"

    I feel strongly that our children deserve to have a voice even if they cannot speak and more awareness, training and resources are required otherwise this country's schools will be full of children having "meltdowns" just because they are not properly supported.

    I have learned over the last 13 years that MY behaviour and MY actions have the most affect on my child. If I am not in control, how do I expect him to be?

    As a parent, we know our child better than anyone, we know whats best and it's high time the "educators" listened instead of thinking they know better just because they have a deggree in education.

  • Hi there,

    I couldn't read and not post because so much of what you said is like reading about my daugter (not so much the lashing out because she doesn't do that...yet, her temper is building rapidly so I can see it potentially becoming an issue). She's 6 and has completely irrational fears, gets anxious about the most random things, the thing about promises is my daughter to a tee, you can't say oh we'll see if there is time to do that later because when later comes if you haven't got time to do it she will rage about it and insist you've lied to her that you promised that it would happen. When she's in a very bad temper she gets very verbally abusive, screams, shouts, sometimes throws things and then she will either calm down eventually and apologise or she will break down and cry her eyes out. 

    Have you tried asking him what caused/causes his outbursts? When my daughter has one of her more extreme meltdowns/tempers I find that 99% of the time the root cause will be relating to some sort of sensory issue. We had the school call us up once because she was hysterically crying and couldn't be calmed or reasoned with or even explain fully what the problem was, all they could get out of her was that we were not going to pick her up that day. What had happened was a dinner lady had told her she HAD to eat the beef she'd been given, my daughter can't stand the texture of beef so that set her off and every little thing that happened seemed a million times worse (so for example getting a question wrong would be the end of the world). When she's in that frame of mind she starts to think of every bad thing that could happen ever and of course she worried that nobody would pick her up from school that day and got herself so worked up she was screaming and crying hysterically over it...all from having a texture she can't stand thrust upon her.

    She is extremely sensitive to loud noise so when all of her classmates are chattering she gets overwhelmed by the noise and it makes her feel dizzy and sick and when she is like that she gets snappy and can flip out over things. She tries to keep a lid on it which just results in a more extreme tantrum/meltdown at home later that day. 

    My advice would be to sit down with your son and go through what happened with his latest outburst, step by step, what led up to it, how he felt when it was happening etc and suggest alternative ways of dealing with it. So for example I've told my daughter when the noise is getting too much ask the teacher if she can go somewhere quiet to calm down. Or when she is thinking something irrational I explain to her why it's so irrational, or when she insists I've lied to her(the promise thing) I explain yet again that I haven't, that from her point of view I promised but I didn't actually say the words I promise I said we'll see if there was time there wasn't enough time and that is nobody's fault so she shouldn't get angry with anyone. Or to use an example when your son physically attacked his friend because she spoiled his game, ask him why and just explain why that's not the right thing to do, how would he feel if his friend did the same to him etc and that if it happens again and he feels angry with her to just walk away calm down and then go back to play. 

    I can't say for sure that any of this will work for your son these are just ways I've learned to deal with my daughter that may or may not help you with your son. Good luck :)

  • Hello 

    I was hoping somebody more useful than I would get back to you on this when I first saw your post, and I'm sorry that hasn't happened.

    It is my privelege to work in a secondary school, supporting children with ASDs, and I've been there five or six years now so I've a fair bit of experience with parents, carers and the children themselves.  I was also father to a beautiful little girl whose multiple handicaps took her from me when she was just 4.5 years old and, in her lifetime, I met many, many parents and carers for children with a vast range of problems.  I have some idea - only some idea - in consequence of how you feel.  

    >"If I'm totally honest I blamed myself for his behaviour"<

    Few are the mums - and it is pretty much always the mums - who don't blame themselves.  It doesn't matter what the problem is or how it was engendered, mums seem almost always to find some way to blame themselves.  A lot of dads just run away, of course, either literally or metaphorically, because they can't accept that faint disturbing possibility that they might be to blame.  In fact, of course, no one is really to blame in any of this, unless it is those elements of society who fail to make sure that help and support are even barely adequate.

    You are struggling, but I have no doubt that you are very brave.  We go on being brave because we do not have a choice, of course. But it is still an honour to exchange posts with you.

    >"His teacher has told me in all her experience as a teacher she has no idea how to approach his behaviour."<

    As someone who works in a secondary school with a dedicated ASD department, the remark above simply makes me smile, even if grimly.  Most teachers - excuse my French - no bugger-all about the behaviour of our children.  Our children are not the children they trained to teach or sought to teach.

    You have not described any behaviour to me that I have not witnessed within the few short years I've been working around ASD.  My gut feeling? Autism, in a quite severe form.  The 18 year old sixth former who will be leaving my school on Monday with decent, if modest, qualifications and with one of the nicest, most honourable souls I have met in a long lifetime had severe aggression issues when he first joined us (a little, in fact, before I did).

    You are having a horrible time.  You know that, I know that, and so does anyone who reads your post.  It is grotesquely unfair and - just in case the thought crosses your mind (it crosses most, though Heaven knows why) - you have done nothing to deserve this.  You deserve help and support.  Mine can only be words, so I can only encourage you to have faith in your own knowledge of your child - because he IS your child and no-one knows him better) and to demand from any place or source you can the help and support that you and he need.

    Check out NAS resources, contact your local councillor, your local MP and demand to know what they are doing to help, don't pay too much attention to teachers unless what they say seems to make good sense to you, and push the system as hard as you can.

    My respect and affection to you,