How do i do it as im fed up of been called a liar !

[CrazyHmissesHerbie]

Ds 5.2 has been assessed for ADHD/AS and this coming Thursday has his final appointment with the Specialist at the hospital .
The Doctor doesn't believe Ds has anything wrong and has said so in a letter to DLA which I have only very recently just seen , He was saying that at the last appointment Ds was very well behaved and sat quietly etc , Ds was bouncing off the walls , swearing etc so I'm going to ask the doctor why he said what he did .
Ds is fine at School because it is a very small school that he has been at since nursery so he knows everybody very well and only has 12 others in his class ., he would not cope in a bigger school .
As soon as he leaves his teacher in the playground he changes very chaotic , screaming, swearing, running away .
He is a complete nightmare at home I can barely cope , i can't leave the house with him now he is no longer using a pram .
He has no sense of danger still , will stand in the road , stick his head in the oven , run and just not stop .
He hits me and throws stuff at me I have had plenty of black eyes from him .

Then on a very rare occasion he will be sweet and ask me why he is so different to all his friends at school and I just don't know what to say because maybe it is my fault he is the way he is because nobody can see what I see and what he can see in himself he just says he wants to be normal and like his friends

My GP prescribed melatonin for him last summer and he is now on 40mg a day which doesn't work all the time but its better than nothing even though he stays awake 22 hours some days .

I have tried to get video evidence but I can't as Ds just smashes my phone if he sees me .

If their is nothing wrong why have they given him melatonin?
I'm currently fighting for DLA as I know it will prove his life dramatically , I just need to be believed but how ????

Oh and he always asks me why his head won't stop and just be quiet so he can sleep

Bump

One of those nanny cam bears?

Definitely video him and keep a diary.

Make a note of his issues/behaviours, what causes them (if you know) and how you manage him. You need to show that you are being consistant with him.

Sorry you are going through this but as greener says it is really common.

Stay strong, be kind to yourself and good luck

I will try again to video him but I'm not holding out much hope

I'll try a diary .

I have tried reward charts , naughty step & everything else but nothing works

its so hard isn't it? he sounds very much like my son who says his head is going too fast. we had an absolute battle over him being believed even though it was pretty apparent but it took one person to say no he isn't asd and we were stuck leaving us in absolute limbo. as his mum I knew there was something different and finally at age 6 he was dx with adhd and was medicated - that did help -we then moved counties and immeadiately concerns over asd were raised and he was dx a year later. at age 10 he in now in a independent asd school. I know its easy for me to say but stay strong, you will be believed - I found as they get older theres more expectations on them a stehy go through the school, the work becomes harder and they need to concentrate - my son then started to fall behind. I don't know what you do about the paed - I had one just like him - I complained and then go told that as he was the only paed if I didn't have him I would have no one! I just dug my heels in and insisted on a referral to camhs which after a long struggle we got.

going slightly off topic but have you looked at PDA at a possible dx. I found none of the usual methods of discipline with my son worked = he wasn't being naughty he simply was struggling to cope - we would later find he had huge sensory issues which were making him become overloaded hence why he was so explosive and difficult to manage/parent/cope with. now at age 10 he still has difficulites but because everyone knows this we now handle him very differently to our other 2 children which has helped

I found your post very sad. I have two boys with complex SEN, and they can be very difficult but as you say they can be very 'sweet'. I know DLA is important but what is most important is your relationship with him. Try to understand why his behaviour varies to such extremes, find another professional through your GP or self-referral, that will work with you to make a more complete picture of him. It could be a specialist SALT or someone at your local CAMHS, it doesn't have to be just the hospital specialist who you are finding difficult. Find someone you trust and then make a better case to the DLA with their help. Then try to focus on the positives, no matter how much he is also disruptive and aggressive.
I found a book called, 'The Explosive Child', by Ross Greene, very helpful, it was recommended to me by a Child Psychiatrist.
I suspect you have a child who is capable of progressing by leaps and bounds if you have the right help to understand his behaviour.

You have the right to ask for a 2nd opinion with the NHS.

Agree about trying a webcam, but my worst problems have always been in the night, and getting it together to film at 2am is beyond me after weeks of 2 hours kip a night iykwim. As a single parent I always had to rely on a diary - kinda hard to argue with 3-6 months worth of unusual behaviour. (Wait time for appointment)Write it up before you go to bed every day without fail & take it to your next appointment with ANY medical professional.

Photocopy it to send in with your DLA form. I'm about to start another as our renewal is coming up and none of the specialists since our relocation have met my sprog yet.

Thanks everybody

I would contact the dr and ask if he had your ds mixed up with someone else when he wrote the form. Not unheard of, especially if there is a common name or two kids with the same date of birth / similar address

And bring someone with you to the next appointment, someone who sees the stuff and can confirm you're not just deluded/ making it all up.

If you don't have a mum or a partner, if your next door neighbour sees the street stuff or hears the noise from your house, they would do fine. You can bring them just to the GP surgery if they're not able to come to the specialist.

You can have the phone doing audio record in your pocket. Not quite the same but better than nothing. With commentary (stop banging your head on the wall,, let me get you a cushion )

Traditional behaviour management often doesnt work with children with Asd/ADHD/Sensory issues.

They are often not being "naughty" when they kick off but are panicking over something.

Trying to do the naughty step or timeout can be soul destroying when the child simply doesnt think they have been "naughty".

We use a yellow and red card [like footballers] to let Dd3 know when her behaviour is becoming unacceptable. It is very visual and doesnt require me to try to engage with her.

Don't know if it would help you but you never know.

Good luck

Are you sure it's 40mg melatonin? That's an astonishingly high dose. Maybe dangerously high? Most kids only have 1-2mg. You might need a specialist clinic if he still isn't asleep

I have the same problem. DD hasn't had her initial paed appointment yet but I know I'm going to look like I'm making it all up . I've been trying to film her when she goes but it makes her lash out even more and I need 2 hands to control her. The only thing I can do is keep a log of everything on my phone.

Oops that was supposed to say 4mg bloody auto correct
Its ridiculously hard to get a 5 year old to take tablets .

My mum usually comes to the appointments with me but the paed just sees me as a young parent that doesn't know what they are doing .
He is a lot better at sleeping now after 4 1/2 years of sleeping two hours if I were lucky and now he sleeps through 4 out of seven nights and then the rest he is usually up til 5am

But if this is his last paed appointment then I won't have a full diary as proof so what can I do ?