Ok desperate to understand my 6yr olds behavioural problems please, today was just awful :0(

[brandy77]

Ive posted before to say that my son has medical problems and on meds and soon to start growth hormone injections.

His behaviour problems have always been put down to hospital visits etc, even though ive told cahms that i think his major outbursts, not socialsing etc are down to ASD. Its been poo pooed from the start and blamed on the hospital, and that he is an angry little boy who likes routine because the nurses are so routined with treatment. Yes perhaps, hes had about 30 admissions in his life and the longest is 4 days. Mostly 2 days including 1 overnight.

Today me and mum had planned to go to town on the bus to support the Alzheimers group with carol singing, I had told them I wouldnt stay long because of my son, but then i had to change it to going in the car as we both needed to food shop also. Son wasnt happy about this at all, fair enough. We did go in the car and straight away mum said "oh its a walking on eggshell day" then, referring to my son. I said yep. He started as soon as we got in the queue for the carpark. It makes you feel very uncomfortable because you dont actually know what hes going to do. He wont let me touch him, grimaces at me, looks away and cries and screams and gets very sarcastically rude and lashes out. Got parked and by the time we got to the carol singers it was getting a bit embarassing, he looks totally normal except hes small and i do use a pushchair. He was banging the back of his head against the pushchair and screaming. I did tell him he could hold a bucket to collect money but he had shut off from me by then.

I am absolutely desperate to know what is causing this behaviour, camhs are rubbish and keep saying about parenting. Lots of children with my sons problems have ASD. I applied for an assessment for a statement and was turned down, but will be going the tribunal route. It is so hard living with him, hes like jekyl and hyde.

So what do i do now, i was thinking of going to my gp and telling her that im desperate and can she refer him to someone to assess him? is this a possiblity. His paed is in london and i wont be seeing him till june to ask for him to get involved, although the growth nurse is coming after xmas to show me how to do the injections.

This behaviour has been since birth, screaming continually, that was put down to food intolerances. I watch the school dvd of sports day and throughout the whole dvd he didnt smile or talk to one person, thats not normal is it?!

Sorry for waffling, it was a totally draining day. Yesterday was the same

Could you ask your GP to make a referral for ASD team assessment to a different Trust than where you see your current paed / CAMHS?

You could say you feel they are not listening and you feel a proper assessment by a fresh team to rule ASD in or out is needed

I know Elizabeth Newsom Centre in Nottingham do assessments as second opinions - down south would it be Great Ormond Street

morning agnesdipesto, thankyou for your reply. I think il see what his paed comes back with about recommending my son is assessed by an Ed pysche. the nurse will speak to him in clinic today and said she will try and ring me tomorow, this is at Great Ormond Street anyway so perhaps they will refer him to someone else in the hospital rather than near my home. I cant open the link you put on, my laprop is very tempremental! thankyou though.xx

i know hes not right, i always knew he was growth hormone deficient but only now 6 years on had it confirmed. you just know when your child isnt right dont you. If its not ASD/aspergers at least I would know and wouldnt spend endless nights worrying about his future and be able to support him more.xx

Play centres/after school clubs etc that are designed for SN are a real help. We go to a SN play and stay in all the big school holidays and it literally saves my sanity. I know that 2 days week they can go, be themselves, no judging, no expectations - and in our case, siblings can go too. It's heaven.
It's worth looking in to as he might find somewhere he can unwind and be himself - which might give you a less stressed DS - win/win. And, like i said before, if it doesn't work, you don't need to go again.

Hi Brandy;

My experience with GOSH has been that it is a 2-edged sword: they are fabulous specialists but terrible generalists: they don't have developmental or community paeds - for obvious reasons. But your local health team will assume you are "under" GOSH so getting the best care, and will ascribe every new symptom to the specialist problem (in your case the endocrine one) because if there are two doctors caring for the child GOSH will always trump them so they'd rather not get involved. For us (v different conditions, but similar experience) this went on till the "unexplained" symptoms were so bad that a new local doctor finally had a lightbulb moment and made a second diagnosis.

Fingers crossed a local referral to developmental paed brings a similar result for you.

Thanks auntevil and r3dh3d.

We had a distastrous trip to the theatre in town today. we had to leave after half hour as he saw the "Beast" and freaked right out, bless him. Must admit even though it was a man in a mask it was a very scarey mask! He got in such a quivering state that 2 staff nearly cried on his behalf and took us out and bought out some crayons and a book to try and take his mind off it. He was an absolute wreck, whittering on and on and on about the Beast and the noise it mad. Yhe staff offered to give him cotton wool for his ears but he said he would still know there was a roar coming because he would see it open its mouth. My poor mum was left in the theatre alone, so we all missed out unfortunately, i dont mind but felt a bit bad for my mum. My mum knows what hes like though, we had to ignore him in the end because he just goes on and on and doesnt listen to anything you say.

I wouldnt mind so much but he wont let you cuddle him to make him feel better. My eldest son, now 16, would have sat on my lap and hid his head in me and cuddled me, youngest wont let you anywhere near him so it does make you feel helpless. Oh well, home now and hes happy feeding his fish on my facebook game

Brandy77, not sure if this will help or not, but I'm trying to think about the possibility of him being on the autism spectrum and whether that explains some of the things in your OP.
If I think about my own reactions as someone on the autism spectrum at events...

If I'm going on a trip into town to do a charitable something, for example, I know that I've got (say) 12 units of energy left to 'spend' on coping with really difficult things.

Putting on shoes and clothing suitable for something like this and coping with the way it feels, 1 point. 11 left.

A change of routine, unexpectedly - 3 points. 8 left.

Getting in the car and coping with the feeling of movement, the smell of the fuel, the noise from the engine - 3 point gone. 5 left.

Coping with the conversations in the car and working out the social meaning behind them - 2 points gone. 3 left.

Getting to the queue where the fluorescent lights in the car park are flickering overhead and we're stuck in it, 2 points gone - only 1 left.

Getting out of the car, walking through the crowded streets with all the noise and chaos - 2 points. Now at negative 1 point, brain now hurting hugely as it's overloading the brain wires.

Getting to the event, staying there, buckets of coins making jingling noise that sounds like gunfire, 2 points - we're now at negative 3 points and I'm actually going to panic from the pain I feel in my head.

That's just how I am. I'm not saying it's how your son feels, but it's one of a range of possible explanations for how we can fail to cope with what seems like very normal stuff for most other people.

If I'm feeling ill, I'm so bad at noticing it that I often don't factor it in...then when I try to do something, I start with less energy than usual and end up overloaded much faster.

Working out how much 'energy' it takes us to get through a day before we can rest and re-load the energy points sort of helps me balance my life sometimes.

thankyou amberlight that is very interesting and quite sad really.

its knowing what i should do when he gets in this state, which is why i need him assessed as it happens soooo frequently. I need to know how to manage him better, if its not asd/aspergers and is emotional immaturity then i still need to know dont i. i do feel sorry for him.

Ive been keeping records on a word document of all the daily difficulties in the last week and its quite awful when you read back, i know its not normal and think ive perhaps let camhs talk me down too much and blame it on the hospital stuff.

he did manage the theatre last year with him and he coped quite well, but today there was these awful strobe lights that were blinding everyone in the front dozen rows including me and mum, they were awful. we were all putting our hands over our eyes! and what with this really loud roaring! its a shame because he seemed to be enjoying the first 20mins or so. Hes ok now, been listening to dolphin sounds on the computer and learning why they are endangered as we adopted one with the WWF

Again, answering only personally as different things work for different people...

It helps me to work out a basic 'checklist' for how much energy I have.
Things in the morning are easier than things later on.
If there's a big crowd or lots of noise it needs to be earlier in the day...

....or I need something to wrap myself in or somewhere very quiet to go to - no noise, no speaking to me. Lets my brain wiring cool down enough to let me talk again.
Earmuffs can help. So can those baseball caps for some of us. Or sunglasses. Anything to stop sensory overload or input.

It's almost the opposite of first aid - you'd normally rush up to a distressed person and talk to them and sort it out. With us, rushing us to somewhere totally people-free and voice/eye-contact-free is often the solution. (if safe to do so...)