Please can anybody give me advice?

[hiddenhome]

I'm really getting fed up and desperate.

ds1 is 13 and has been seen by CAMHS when he was 6 and then a couple of years ago. I've had problems with him since he was 2.

We had him assessed privately when he was about 8 and they said he had adhd and dyspraxia, but not badly enough to warrant medication.

CAMHS ventured that he seemed to have some aspergers traits. They said that because he's coping okay at school that he doesn't need medication or therapy.

He is having problems, but nobody wants to know

He's addicted to sugar and conned me out of extra bus fare this morning then went to poundland and bought a box of maltesers. Sugar sends him loopy and makes him unpleasant and argumentative. I knew he'd eaten something by his behaviour. Chocolate has a very bad effect and we've had a rotten Christmas because of it.

He's forgetful, disorganised, argumentative, vague, unpleasant and uncooperative. It's not just his age, he's been like this all his life. He's very high maintainence and has no sense of independence

I don't know what to do. How can I get some help for him? He needs a proper assessment and some help. He seems depressed at times and this endless eating is getting us down. DH has locked food away.

How can I get anybody to take us seriously? I don't want him labelled, but I would like to know what's wrong so that we can help him. We tell him off, but that's no good as it makes him miserable and I don't think it's all his fault, he's just reacting to his brain not working properly

how does he cope with school?

I also feel very frustrated because so many other people seem to have their problems identified and they receive help, therapy etc. They say that their child has asd and this is how they're helped. Why won't they help us? He's never even seen a paed, just some arsehole nurse and a supposed psychologist at CAMHS, who appeared lethargic and disinterested. They just shrugged as if to say "what do you want us to do?".

How come other people receive help? Are their kids delinquent or sitting in a corner rocking or something? I don't know how they can fob us off like this.

oh sorry just saw that he copes okay
can you afford a private dx? You could also ask CAMHS for a 2nd opinion.

He's not too bad at school. He struggles with social stuff and can't cope with organising his work and equipment. He gets detentions for forgetting stuff and got a detention today because he went to the toilet during class time because he can't pee in front of the others (nerves), so can only go when it's deserted. He gets anxious. His intelligence is good and he loves learning so the teachers like him.

I can't afford another private assessment.

I have no faith in CAMHS. They didn't seem to know what adhd was when we saw them. Somebody said he needs to see a developmental paed.

i found the gp the best place for help... could you ask your gp to refer to a development/community paed?? my ds appears to have alot of help, but to be honest he just has alot of appointments with people who just drag their feet.

be a plague to the services you already have access to like gps, school nurse, camhs ect...

I could take him back to the GP I guess. I'll also speak to his form tutor to see if there's anything going on at school that perhaps I'm not aware of. He might be struggling more that I realise and I might be able to get school to back me up.

hiddenhome - I could have written much of that post about my 9 year old. I totally get where you're coming from. I spoke to a community paediatrician today and said 'how can a child get to 9, and not be able to do up a button, use cutlery, do a 3 piece jigsaw (I kid you not!), and not get support in these things.'
I think that a lot of support has traditionally been expected to be delivered by school. Medics dx, schools educate, parents get left with the rest with sporadic, post code lottery support. Even with a dx, nothing much happens. If your child is coping academically - admirably in most situations - they are not a concern. Poor general life and social skills.....
OT have been my biggest help. In our PCT you can self refer. They at least can offer some practical tips on how to manage some everyday activities.
I would also look at the different dx support groups. Some of their online sites can put you in contact with local groups. You may be able to find out what you can get locally, and how they got support.

Gosh hidden, he sounds just like my Dd1 she is 23 now but was nearly Dx'ed with ADHD when she was 9 having been in the system since she was 4.

The psychologist decided it was my parenting that was the issue and she never got a Dx. I believe she has Aspergers and possibly ADHD along side. She has bad reactions to sugar and chocolate too amongst other things.

Sadly I didn't realise how hard you have to fight sometimes especialy if your child is "borderline" what ever that means!

I fought much harder for Dd3[9] who is more spectrummy than Dd1 and less hyper, she was Dxed with ASD in September.

I would keep a diary of all your Ds's behaviours/quirks, what causes it and how you deal with it and go back to your GP, you are intitled to a second opinion but you need evidence to back up what you are saying. A diary is evidence.

Sorry you are having to fight so hard and good luck.

Keep coming on here there is loads of advice available.

It's a shame that you say you're against 'labelling'.

With labels comes help

Without labels the child is just written off as naughty / having behaviour problems

You've been seeing CAMHS far too long without having your questions answered.

I would write (not ring/email/phone) your CAMHS psychologist who sees him and request that they provide you with a written assessment of your DS's difficulties and their recommendations as to what support he requires.

If they refuse this then see GP and ask to be referred to consultant adolescent psychiatrist.

If he is not coping at school then either see SENCO or initiate your own request for Statutory Assessment.

You've been strung along too long without answers.

8 yrs to 12 yrs is a big gap in maturity and hormones so I would say a review is necessary. You said he was assessed privately with ADHD and dyspraxia so he has a label of sorts?

If so go in to GP with all the reports you got. Definately speak to the school and gain info on what is going on there. Make a diary and list all these detentions and reasons and any other incidence as apart from records for proffs you can sometimes single out a trigger or reason for something.

TELL GP you want a further review with a dev pead,

Oh, thank you so much for all these replies.

I agree that a diary would help. This has been suggested to me before. We've had our parenting assessed by a parent advisor who came to the house, she was lovely and could see that we were doing a reasonable job and that ds1 does have persistant problems regardless of what we do/don't do.

We were discharged from CAMHS after the last non assessment fiasco - I kid you not, the nurse just sat and said "shall we assess for asd or not" several times over and over and just umd and aahd then decided that they wouldn't I was almost in tears by this point and probably ready to either strangle her or go home and hit the bottle They really weren't people you could take seriously.

I'd tell GP that my DS had complex needs that CAMHS had been unable to fully assess so I want a referral to a consultant child and adolescent psychiatrist - not a develpmental paed