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Not sure where to go or what to do to help DS and the rest of the family

(9 Posts)
lucyanntrevelyan Wed 24-Feb-16 11:24:19

I hope it is ok to ask for help on this board when I do not have any sort of diagnosis for DS?
DS is 9 in Year 4. Back in Year 1 he started having really massive temper tantrums where a red mist would descend and he would be out of control. DS was referred to CAMHS by the GP when I asked for help, with an 8 month wait. By the time we saw CAMHS the phase of tantrums had calmed down somewhat and we had found by trial and error ways to keep him less stressed. They assessed him for ADHD (we were not told at any point that the assessment was for this, I didn't think then that ADHD fit) and discharged us saying no ADHD.
In the last 4 years DS goes through phases where we are managing, and then bad months where he loses his temper constantly, particularly bad when we moved house/school 18 months ago.
In the weeks running up to half term, and all over half term we are in a bad phase again. There has not been one day in the last 3 weeks where he has not lost his temper multiple times over something - often something small (that is huge to him) like trying a magic trick from a book and it went wrong. He used to hit and kick me or DH but has now started 'only' hitting himself - he punches his head which is very upsetting to watch. Also screams, swears, throws furniture, books, throws everything around his bedroom.
At school he is very good and well-behaved. He is absolutely terrified of being in trouble there, and follows all the rules all the time. He is quite clever, quiet and no bother at school. He seems to play with friends at school and always seems happy coming out at the end of each day.
There is nothing I can pin point that has changed recently, in his calmer moments he can’t tell me anything that is wrong, but we are living on a knife edge at home tiptoeing around him waiting for the next explosion. I really feel like we/he need more help with managing his behaviour, but I don’t know who to speak to or how to ask for help?

rupert23 Wed 24-Feb-16 11:50:16

my son is the same i am traeding on eggshells all the time or lurching from one meltdown to the next. He too is 9 and in year 4 . i have been waiting for CAHMS assessment and it was supposed to me today but has been cancelled due to staff sickness so i have to wait for a new date. i have been waiting nearly a year now . he is ok at school and holds it together most of the time apart from a couple of big meltdowns some time ago. I went to my GP so maybe you should go to Gp and try to get another referral. My gp thinks as i do that my son may have asd/aspergers .I have been to local support group who are really good, but NAS cant help me until or if i get a diagnosis. Its terrible to be in this situation i hope that you can get some support. my son will not tell me what is wrong and just does not speak at all if i sit him down and try to talk to him.

Chickenlicken321 Wed 24-Feb-16 17:12:43

My son was 8 last year and we have the same problem, since he was around 5 and a half years old. He has been referred to CAHMS but whenever they see him he is good as gold! School have started seeing his meltdowns/self harm/behaviour changes since last summer so at least they believe us! It is a nightmare, at the moment he is not too bad though still has outburst where he rages, cries, hurts himself and others. But we have had months of constant anger and harming, where it just doesn't stop. CAHMS wanted to discharge but school (autism unit) is trying to help us with a second opinion. It is a nightmare as we keep being dismissed as its just "his Autism" .
Grrr angry

rupert23 Wed 24-Feb-16 18:08:47

hi chicken do you actually have a diagnosis for your son as i am still trying to get this. i was hoping that if i get a diagnosis then at least the school would maybe help him and take it on board? If they are just saying its his autism thats not much help to you is it. i really am struggling at the moment . it just seems to be getting more difficult to get him to school and he is quite unhappy

lucyanntrevelyan Wed 24-Feb-16 18:46:27

So sorry you are both struggling in the same way. It is so horrid seeing them hurt themselves and having no way to stop them isn't it? DS just seems to get worse because every time he loses his temper he is cross with himself that he lost his temper so loses it even more. I am waiting for him to lose it at school as can't imagine he can carry on putting on the mask at school while he is so on edge at home...

Chickenlicken321 Wed 24-Feb-16 18:57:35

Rupert
Yes my son has a diagnosis of Autism (non verbal). So we have been lucky as after a lot of pushing and fighting to get to the school, we have lots of understanding from the Autism unit. Its just Paeds and Cahms are the problem. "They cant go any further with him and this is Autism". I don't believe that for a second as he has always been a placid child and this is not him. I know things change but they wont look into/consider there might be something else causing this behaviour. They both want to discharge him!! Ive said No.
I can understand the frustration. It is hard now when he is a bit better but when he gets the bad times, it lasts all day and for months. But never quite as bad in school, though they are seriously worried about him hurting himself/others. We were at breaking point during the Summer when his behaviour peaked again. It was non stop.
Is your son in a mainstream school? Mine is in an Autistic unit. I would think they (CAHMS and school) have a duty to help without a diagnosis. I know its hard but could you video some of his meltdowns/rages/behaviours?
We also had help at the beginning from an Educational psychologist, she really helped our son and put us on the right path (this was before behaviours) but may be able to help you with the school and unhappiness issue? xx

PolterGoose Wed 24-Feb-16 19:02:15

It's horrible to experience, but, in all honesty, even with a diagnosis you will still be his primary 'therapist'. There are some excellent resources around, my favourites have been:

Ross Greene's book 'The Explosive Child'

Dawn Huebner's series of CBT workbooks, including 'What to do when your temper flares' and 'What to do when you worry too much'

Sensory OT work, especially around sensory defensiveness, the books 'The Out of Sync Child' and 'Too Loud Too Bright Too Fast Too Tight' are excellent.

It's worth considering that it's anxiety underpinning all this, and that's what needs addressing, for us the foundation for progress is a really predictable, easy and demand-free home life.

Meloncoley2 Wed 24-Feb-16 23:25:06

I would echo Poltergoose, in trying to sort out home life, where you can monitor 'what works best' is the best plan to start

rupert23 Thu 25-Feb-16 19:44:35

thank you for your replies i will have a look at the books suggested. i do try to keep things calm to ease his anxiety but often we are treading on eggshells round him and as i have four other children at home its not easy as they get fed up with him at times. He demands everything and it is very tiring to be honest. I will keep trying to get a diagnosis but realise that this will not just wave a magic wand and our problems dissappear. If only . Thanks for your suggestions

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