Something isn’t right with my ds but I don’t know what...

[Ilmb]

I have an almost 10 year old ds. Last September he changed a lot quite quickly. He has always been my more laid back dc, always happy, no problems with him. I have other dc, one who’s autistic and this obviously causes problems but he’s always dealt well with it.

Last September he changed. He started getting into trouble at school. Not really badly but enough to get called in a couple of times. I spoke with his teacher quite a few times about the change in his behaviour, she happened to also be the senco. He was under a paediatrician at the time as I think 2 years ago he was having a lot of head aches. He had an mri just to check all was ok and it was clear. I was told as I suffer from bad heads he’s just the same. I spoke with the paed about the changes at school and she knows Home life has always been hard for me (LP with the dc and troubles with the autism etc) and she referred him to Camhs as he has a lot of anxiety. Camhs rejected the referral (I knew it would be as my other dc already under Camhs so I know the system well). Teacher then did a Camhs referral and it was rejected. They said I should pay to privately get a counsellor which I can’t afford. At his next check up the paediatrician said it wasn’t good enough and re referred to Camhs. Again it was rejected. Then fast forward to beginning of this year. I said to the teacher I need help with him. His personality has changed. One minute he’s fine and lovely and the next he snaps and will go ballistic, throwing, screaming, cause fights with his sibling, screaming literally like a banshee. Later he will apologise, then cry and get really upset and say he doesn’t know what’s wrong with him.

School then did a referral to the school nurse team who has started seeing him for the last month or so each week. He sees someone and it’s similar to play therapy. I throught this would really help but Iv seen no change. He engages fine with the man he sees.

We currently are on holiday. He went ballistic over something of nothing. Tried to help but he just started kicking bark at me saying I don’t care.... Iv told him repeatedly I love and care for him but he says I don’t care. He’s calmed down and came to me just now to apologise. Promises he won’t do it again, I said to him I don’t know what is wrong and why he keeps behaving like this but he gets upset and says he doesn’t know and doesn’t like it either.....

I can reason with him and when he’s fine he’s lovely. This is now virtually a year. Nothing has changed.... School say no problems at school... I know hormones are kicking in but i don’t belive it’s that. Any ideas?!

My 11.5 year old was a little like this between about 9 and 10.5

Accept the apology and when he's calm and lovely discuss how we might learn to control our temper or other ways of dealing with emotions. Try and spot the signs yourself beforehand and fend it off if you can. Be as calm a parent as you can - mine would shout and scream and even spit down himself for god sake, but I'd just keep as calm as I could. Lots of small chats when in the car or on walks about behaviour and emotions etc etc

He grew out of it and he's honestly such a lovely boy - an absolute little diamond

I'm not saying your son is the same as mine. But lots of your op resonated and that's what I would do. Mine doesn't have SN - he just had an inability to control his emotions and honestly behaved like a toddler.

When he comes to you to apologise, try saying 'don't worry, it's fine and behind us now. Maybe we will chat soon about how we could have made ourselves calmer and not shouted/screamed:whatever and then just ignore it and move on

Thanks for replying. Iv tried both of those approaches already..... obviously I’m glad I can reason with him and that he recognises it’s wrong.... it’s juat really starting to drag me down. My life is stressful enough and now it just feels like he’s being horrible to me for the sake of it. I know he’s not as he generally isn’t like that. Iv tried so much,m. I thought the summer holidays and this holiday would help him and relax him as we love it here and come every year.... but nothing I do seems enough? Isn’t a year a long time though to be like this is if it’s ‘just a phase’?

Sorry to hear what you're going through.

Is it possible there's stress going on in his life that's affecting his behaviour? I think his sibling having autism shouldn't affect him as he's grown up with it, but perhaps there's something else like bullying going on for example? I don't know, but could be an anxiety reflex perhaps?

You didn't mention, so wonder have you asked him anything is there anything he's worried about? Is there anything he feels nervous about? Is there anything that upsets him day to day?

Best wishes to you and your family

Our lives have been stressful, we’ve had a very rough ride over the years but we’ve been doing well. He worries about our house getting broken into (has never happened and not happened to anyone he knows) I have been through that we live in a low crime area, that the doors and windows are locked etc. He doesn’t like being on his own, will often check in with me if say I’m upstairs and he’s downstairs. Iv been nothing but reassuring towards him and made sure I’m giving him extra comfort and love to help him feel secure but it isn’t enough?

He just says he doesn’t know what’s the matter? Iv said it doesn’t matter what it is, that he can talk to me whenever he wanted to and I wouldn’t be cross etc but he just says he has no control when he’s like that and gets really upset he’s made me sad?

What was the something that caused his kick off today?

@Ilmb how are his eating and sleep habits? And does he willingly go to and enjoy social activities?

He said it was because of the holiday. (No explanation) I think it was over an ice cream his sibling wanted one from a particular shop as it does cones with chose your own ice cream, I was going next door to supermarket to get ones from freezer plus some other bits. I double checked with him if he wanted one from where his sibling was getting one or if he wanted from shop. I called them a cornetto (incorrectly I know) and he doesn’t like cornettos as in the make. Went to supermarket and bought him one and then when his brother bought his he said that isn’t a cornetto, you told me it was a cornetto!! He then started kicking bark at me and saying how horrible I am and how stupid the holiday was and no one cares about him. I apologised(!!!) to him saying I was sorry I called it the wrong thing. I even tried to rectify the problem by saying I’d eat his and he could go and buy one like his brothers. He refused. Was vile, kept going on about how horrible I am, started trying to wind his brother up and generally just being nasty so I said he was upsetting me and I would talk to him when he was calm and ignored his behaviour. Went back home, he then about hal hour later apologised and got upset. We talked it though and I asked him what he thought had caused his behaviour.... he said the holiday. I said I thought it was the ice cream and re iterated that I tried to help him.... it isn’t the holiday we come here every year and love it.

There is no doubt in my mind he has anxiety but no one will help with it. The school nurse team help hasn’t made a difference and I will be talking to them when we’re back home. They’ve just said they are offering level 1 support. No idea what that means really.

He eats a lot. Very skinny but that’s genetics. Sleep isn’t great but his sleep has always been bad. He sleep walks often but goes to sleep in his bed and every night he will end up in my bed at some point/

Without wanting to admit it but I think I’m a little worried there’s something underlying ... something bad, like a tumour. I do not have health anxiety at all but I know that change of personality can be a sign of a brain tumour and then with the heads ... but my rationale says don’t be stupid as we had an mri (albeit 2 years ago) and it was fine!!

I do realise how stupid my last post sounded! This is just so unlike him!

You've every right to be considering medical issues, you're going to be thinking of every possibility.

From my experience of a person who had a undiagnosed tumour, she didn't realise she was in the wrong - ever. And she didn't see how her behaviour was over the top...

I know everyone's different, I hope others comment on their experiences too

Had a little look around at some mental health websites etc as this post actually interests me as someone doing a degree in child psychology, I hope you don't mind. If you're concerned it's anxiety, the NHS recommends a helpline through a charity called Young Minds. I'd never heard of them before, they may be able to help further? Here's a screenshot from the NHS site x

Thanks sir no I don’t mind at all.

Iv already spoken to them. They weren’t able to help, thanks though. Iv tried every avenue possible. My other dc has been under Camhs since he was 4 so I know what their criteria is and I know they will never help and I can’t afford to pay for private therapy. Something isn’t sitting right but I don’t know what it is. Doctors aren’t interested. They just want to blame it on our home life and what we’ve been though and I see their point I really do, but we are doing ok for the last 2 years or so... I’m doing the best I can. Im making sure we spend quality time time together, make sure I tell him I love him every day and when I’m proud of him. I tell him he can always talk to me. He just doesn’t know what’s wrong?

You sound smart, loving and caring. I hope you get more answers, don't ever let professionals give up (IMO they do too easy) my best wishes

Thank you sir.

Have you checked with the GP to see if there's something else in your area with a threshold lower than CAMHS? I work for a charity but we're a team of counsellors, therapists and social workers who pick up dozens of referrals rejected by CAMHS, many for anxiety in preteens, often presenting exactly as you describe.

Thanks show, I have been through everything. We are quite rural, we don’t fall in catchment areas for a lot of things despite his needs. The school nurse system is literally all there is, School have said the same! It’s so annoying and upsetting. I honestly don’t know what to do.

Could he be starting puberty?

I don’t know? He isn’t showing g any other signs? He changed over night.... he isnt stroppy or sulky...

There was a thread recently

"Do you have a disabled sibling?"

Do a search and read it. Some were not bothered by having a disabled sibling and felt sorry for their parents; but others were afraid of their sibling or resented the huge impact on their life.

It's certainly not true, IME to say that if they have lived always with a disabled sibling, why would it bother them? ( I have three DC, one of whom had diagnosed sn as a child.)

I have read through but may have missed it... has he had his bloods checked? Also the part about not wanting to be alone - can you investigate this further? And finally (sorry lots of Qs - you don't have to answer) I know you said he eats loads - do you see him eating? Is he sick afterwards. (Just asking as my dd had an eating disorder and the behaviour / reaction over the ice cream sounds similar).

My DD was like this. My DS has ASD and she was always the easy one in comparison. He is challenging and our life revolves around his needs. I think there comes a point where the other sibling just can't keep going along with everything and starts to "act up". And usually around the start of puberty. I am also a LP and that means you can't "divide and conquer" easily. In my DD the change was extreme and sudden, around the age of 10. Paediatrician referred her to a Managing Anxiety in teenagers Course. Sadly that made her worse as she picked up all the others anxieties too. CAMHS also made her worse. Luckily the paediatrician kept trying options for us and in the end DD was diagnosed with ASD. It may be worth investigating that option? It also can do no harm to treat the anxiety using strategies you would use with a child with high functioning autism?

Hi OP- my heart goes out to you. It must take every bit of your emotional strength to deal with this. ( I've had an anxious son. CAMHS did take him on at second referral but by that time he was missing school 3 days a week, and even as a LP, I'd had to give up my job, so it was very severe)
What other sorts of things trigger your DS's loss of control?
To me it definitely sounds like he has (separation) anxiety. But the icecream incident you describe doesn't sound like an anxiety episode. There is something else at play.
Also, I agree with OPs who say just because he has taken his sibling's difficulties in his stride so far, doesn't mean they aren't having an adverse effect now.

I agree with the reference to just because they’ve been fine with having a SN sibling doesn’t mean they always will be. Of course he has been second a lot of the time. He does understand autism and isn’t very good at understanding but yes, of course it isn’t fair on him but I genuinely don’t know what I can do? I don’t have a support network, so no one can come and sit his sibling etc I do my best, at home I will do things just him and me and he likes it but not for any lengthy period of time. I do belive there is a degree of separation anxiety defibitely. I put his sleep problems down to separation anxiety. Paed told me he will grow out of the sleep walking but would return at times of stress etc but he hasn’t grown out of it at all yet.

With regards to eating, no there’s definitely no problem. He loves food, hardly ever goes to the toilet on his own so there wouldn’t be a time he could be being sick or whatever.

No he hasn’t had bloods recently. He had bloods done before he had his mri. He was ill for weeks, night sweats etc and gp kept ignoring me, I went back a third time and said you WILL do a blood test, this came back with high white blood count, was out straight on high dose of any biotics for about 2 weeks and was better. That was about 2 months before the mri so 2 years ago now. He still gets headaches, he had one yesterday evening actually. Paed isn’t worried about that though.

With regards to wether he has ASD, I don’t think so. I did ask his teacher (senco) if she thought there was anything in case I was missing something and she said no. Iv noticed that as he’s got older he struggles with instructions (i.e turn it round and he will turn it over and not understand what I meant) he struggles with handwriting so does a lot of school work on the laptop as they’ve said he’s had so much intervention he won’t improve now. He’s very clever, socially fine, has lots of friends. His sibling is also dyslexic, has crossed my mind but I can’t afford to privately assess him for that (School won’t as they say there is no problem although they also said that about his sibling who was obviously dyslexic)