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

Yes - definitely could be ASD.

A pead makes a dx of ASD. So you need your GP to refer you to a Child Development Paed.

Not sure how this works because you're already under a paed. I guess your GP just needs to get you another appointment for this.

Lots of people have problems with CAMHS.

Cry to your GP, and also to the growth nurse when she comes. And just in general become the mum from hell till you get some support on this.

Not sure if your GP will refer him to a community paediatrician as he has been to CAMHS but it is worth a try.
Have you tried 123 Magic? A lot of people with AS children find it helps.
So sorry it is so tough for you.

Camhs have said so many things, they drive me mad so i have ceased contact with them, their undermining comments about parenting drive me mad! They have also come up with so many labels, Attachment disorder BUT organised was the 1st one, Severe Anxiety BECAUSE of hospital, Classical conditioning, emotionally immature, oh i could go on.

What is 123 Magic? My son wont listen at all wwhen he goes off on one, he totally shuts off to me and hates me looking at him or touching him

Thankyou for your replies

His paed is in London so its difficult to see him,other than the 6monthly outpatients, wont be seeing him till June but I will def tell the nurse and she can relay a message back to him

Is his paed in London a specific to his medical conditions? Did you see a general paed before you were referred? I'm asking as i have been refused by the GP to do the referral to another specialist as it steps on the toes of the general paediatrician he saw first - who had referred him to a different specialist. I'm not meant to be seeing the general paediatrician until spring, but i'm trying to bump it forward, preferably by phone, to get the next step pushed along or there will be more time wasting.
You might find that your paediatrician in London would be happy to do a referral to a developmental paediatrician to 'deal with the consequences' of his medical needs, which is a different specialism. The GPs and Paediatricians seem to have their own nudge nudge wink wink way of doing these multidisciplinary referrals - might be worth asking your GP who has general overall responsibility for your son.
I agree with indigo - you need to be a PITA mum to get anything. It really sticks in my throat to have to be like this but it's the only way.

hi auntevil, his paed is an endocrinologist (hormone man), he said my son has a severe emotional disturbance and that lots of his patients have adhd/autsim. Havent really spoken to him about the behaviour since as the medical stuff worsens in the winter months so its more been medical chat, he said the growth hormone injections would help my sons energy levels, appetite but he said they wouldnt help the mood swings. Ive never really gone into all the behaviour issues as you dont get long and the poor mans clinics are heaving

Il ring my gp tomorow morning and see what she says.xx

If your GP referred to the endocrinologist, she should be able to do a developmental paediatrician referral. Make sure you explain as you have here that your specialist has said of the high incidence of ADHD/ASD with his patients. Remind her that early diagnosis (although, lets face facts - its not that early!) will give the best outcomes. Any further delays from CAMHS in recognising that there may be a diagnosis that they have not looked at could severely hinder appropriate treatment. A developmental paediatrician would hopefully be able to look at your DS with a fresh approach and see if there is an alternative diagnosis.
I know what you mean about specialists time, they just have enough to discuss their area and nothing else - hence why mine wants another specialist to deal with his non specialism. It's a minefield.

Hi Brandy it can be so hard when you feel you are not getting the help you need form proffessionals.
Can you say what your DS medical problems are (fine if you dont want to) and who exactly within CAMHS you have seen.
How pervasive developmental delays, such as ASD, are diagnosed depends on where you are. Sometimes it is by community Paed, sometimes by CAMHS. Either way it should involve a thorough assessment (ie not just 1/2 hr appointmant with one person.
I would also suggest going back to your GP and saying that you wnat re-referring, say that you cant cope (this often focuses attention!) and that you NEED help NOW.
I may be able to give some more suggestions if you can give a bit more info.

123 Magic is a behavioural programme for parents to use. There is a dvd but I have only seen the book.
I don't think it is instant but it gives a structured approach to behaviour management. I assume you are (as I once was) desperate enough to give anything a go. My DS was a bit old for it by the time I discovered it. You can get it on Amazon.

thanks auntevil, il ask the gp first and see what she says. I hope you get a good outcome with your apt and get it bumped forward or get a cancellation. I cut my ties with camhs, i got so frustrated with them that i told them to cancel the next apt as i felt they didnt understand my son at all, medical especially and behaviourally. I did get a letter today saying they will keep the file open for 2months on tier 2 and lenghty details of how she felt she had supported me.

Overlfowingmum,my son has a small pituitary gland in his head which controls the hormones to the body. When you have 2 or more failing to produce the hormones its called Hypopitutiarism. He is defificent in the hormone that tells the kidneys to retain water (diabetes insipidus) and recently diagnosed growth hormone deficient. His cortisol (stress hormone) is tested regularly as apparently you lose the hormones one by one . Jordans(katie price)son has diabetes insipidus, growth deficient, cortisol deficiency, blindness and severe autism. my sons eyes are fine, you are born with the poor sight like harvey.

He was initially seen about 2 year ago by a mental health nurse at camhs and the for the hour of the meeting he was physically attacking me, she referred to tier 3 and described him as very complex and aggressive. Hes not like this all the time.

Tier 3 had a meet with me, mum, my eldest son, nurse and pysche. My son spent 15mins under the chair crying and refusing to move, then he played with his older brother who was 14 at the time. A paed took him with his big brother for 5 mins and apparently made him catch a ball and asked him something. When he came back he went back under the chair saying he was bored and then i had to pull him out at the end and carry him out to leave.That was that, even at that me and mum both felt that the pysche wasnt listening to our views and we came out, both looked at each and said "well that was a waste of time". All i keep hearing since, is he is controlling and anxious, blah blah, i know that! its the parenting comments that really get to me, its not my parenting! I have raised a now 16 year old son who is nothing like my youngest. My eldest was very affectionate and fun. Living with my youngest son is like living on eggshells, myself and my mother (who lives near by) both can tell when the "eggshell" days are on as my son has "that look" on his face and thats it the whole day is fraught with anger outbursts like today, and this has been since last week thankyou.xx

thanks imahappycamper.x

Hi Brandy; sorry to hear you are having a tough time... I can only offer sympathy and solidarity.

DS (nearly 7) is being a little sod challenging too. If you would like to try the 123 magic programme I'd like to try it out and I wouldn't mind some mutual support.

I have had some success with going to parenting classes; for me it was good to have a reminder to keep trying to have some fun times, even though the DC is being a total nightmare. I found it worked for me; I even asked to go again. DxP on the other hand found it patronising and irritating.

I'm off to ask santa for a copy of the 123 book right away!

Hi zzzz,my son was 6 in october, thankyou for your reply. Yes my son does talk, hes EITHER not communicative when hes tantruming or having a depressing day or hes overtalkative and drives you absolutely nuts, he doesnt appear to listen and rambles on and on and will not listen to what you say when trying to answer him. im guessing this is the egocentric behaviour that the speech lady said about? Hes in a pushchair still, no road sense and does run off a lot, plus again he gets tired easily.

When hes happy he bounces off the walls and extremely active BUT when his energy levels are low hes not active at all (the growth hormone may help this apparently).

I have never made a point of seeing if he points,he did at his early years/infant HV check i think. I spose you get to used to someones ways when you leave with them you just take it as part and parcel of them and get used to it.

Emphasising, he cried when his rat died, which was 2 years ago and if he sees a photo of the rat now he cries and is not easily consoled. If he sees me upset if my 16 year old has been into trouble he will say "im going to be really good when im 16 and never be naughty".

future and past? youve got me there, i cant even think of an example! i use an egg timer for future short term events or he goes on and on and one. Il make a note of taking more attention to this.

Glad im not the only one who finds the parenting comments hurtful, appears its quite common.

xx

p.s i hope your child is ok and not still being hospitalised. its only just sunk in with me that my son will require at least 2 admissions a year and will carry this lifelong with him.xx

morning, ok future as in tomorow, just asked son if hes excited about going to the theatre to see beauty and the beast tomorow, he said no because he will probably be bored and he doesnt want to catch a sickness bug off anyone. This is what i mean about odd behaviour, is this normal? perhaps it is, but my eldest who is now 16 would have got over excited and chatted about what the actors would have been wearing and would there be somewhere to buy a sweet or something. The youngest doesnt do excited, perhaps its just emotional immaturity but if it is surely i need to find out at what age he is functioning at so i can adapt my behaviour to him? im so frustrated with it all, i couldnt sleep last night AGAIN! Also chatted to him about the caravan and when go at Easter (parents have a holiday home we use at the coast). We really look forward to it, he said, well im not becasue that horrible boy daniel will take all my toy guns away. Daniel is actually his bestest little caravan friend who is in the van behind us. Thanks for listening to my waffle

Brandy please ignore the parenting comments. I've often thought that anyone that throws stupid insinuations like these around either has no children, stepford children (rarely exist) or have forgotten the difficult stages they went through. They seem to miss the point that you are concerned about behaviour and are looking for help - good parenting. If you didn't give a dam - that would be bad parenting.
You also know perfectly well how to raise a well adjusted 16 year old.
You mentioned the sports day video - how does school find him - i assume he will be in year 1? Have his teachers ever mentioned anything? Not that if they don't it means nothing. Sometimes they are so overloaded at school that they come home and explode with a variety of behaviour. They may have spotted something - as you say friendships, organisational skills, responding to instructions etc.

thankyou musmlife, aspergers was mentioned by my gp about a year or so ago but she wasnt sure, her own child has aspergers so i think she saw something in him but obviously didnt want to say further.

hi auntevil,his teacher who is the senco desribes him as mature in the way in the speaks, very quiet at school and needs lots of encouragement to do any work or he just refuses and sits there. He really doesnt like school and at present the senco has agreed that on bad days when i cant physically get my son in that he can start at 10.40am after break. His energy levels in the morning are low so im hoping the growth hormone may help this as the paed said.

When he comes out of school, as soon as he gets in the car the complaints start about hating school and generally the drive home is agro all the way or he will tell me not to talk to him about school and look out of the window and ignore me. I find it very upsetting because i cant even ask him if he has had a nice day or ask him what he has done because it sends him into a strop

The hospital rang this morning and the nurse said she will speak to his paed tomorow in clinic and ask him to write a letter requesting my son is assessed by an Ed Psyche. Im guessing i would include this letter in with the request for a tribunal about the LA turning down my request for a statutory assessment?

Thankyou.xx

Sounds like the ball is rolling. Just remember that old saying about there being more than one way to skin a cat. It doesn't matter what route pays dividends - just that you get the help in the end.
From what you say about school - It doesn't seem that all of this could be attributed to a physical lack of energy, so it might be worth trying the SENco route as well. He is already not having full access to education due to medical needs. In early years most of the learning is am as traditionally that is when the concentration level is highest. Has the SENco ever asked for an assessment?

The senco said she would make sure he got assessed auntevil, this was over the phone when i phoned her very upset and told her he had been give a NO.

Ive just received an email from an assessment manager after I wrote complaining to my MP about the lack of support etc and the cuts being made that would affect parents of special needs children. The email says that he took it upon himself to make a formal referal for my son to the Children Social Services in my area to see if they can offer support. What is that all about do you know? Shall i paste the letter on here, im a little confused actually. It came about 20mins ago.

God, I've no idea. That's half of the problem. There is no standardised format for doing anything re assessments. It seems different LA have different names for people doing the same jobs and people with the same titles doing different jobs. Did you cc the letter that you sent to your MP or has he complained and someone now thinks that they ought to get involved?
I've never been down the tribunal/requesting an assessment route. It may be worth putting another post and asking asking about the letter and the bits in particular that are confusing. There's bound to be someone who has been there and got the t-shirt that can tell you what's going on.
My own philosophy is the more the merrier. Someone, somewhere has the right help for you. It could be the SENco, could be this assessment manager, could be a referral to the EP, could be a referral to a developmental paediatrician. Like camhs - if they turnout to be as useful as a chocolate teapot - walk away (or turn up for a once a year appt!)

thanks auntevil, lol at the chocolate teapot! i emailed the man and he said its nothing to do with assessing my sons needs for an educational statement. He said he felt from my complaint to the MP that i needed more support so referred to the childrens services as they could provide more support outside of school. Ive googled them and theyre based in a special school about 3 miles down the road, says they have support groups, activity days etc so that could be good, obviously you have to get through the referall system first i spose

Social Services don't jsut take kids away permanently, they also provide respite care - from an afternoon every so often so you can do the shopping in peace to weekends away in specialist houses... I would imagine that's what your MP has referred you to - good on him if so!

thankyou purplepidbauble .x