Video Evidence

[Caroline-]

Anyone else filmed their children going through a 'moment'? Just filmed my son having a bad moment so i can show the paed on monday afternoon just how difficult things are for him & us!

[rainbow queen]

yes

in fact camhs asked me to ....this was pre dx

because my son was not showing much behaviour in hospital settings or reception-school[back a couple of years]

i filled a whole tape up of what goes on at home day to day

it really opened there eyes when they saw it ...and not long after that he got dx.

[KarenT]

Hmmm...

 

A couple of years back I suggested doing this to gather evidence to show to CAMHS, of what J was like at home, how he wasn't manipulating us, how out of control he got etc etc. CAMHS said that I could only do that if I told J I was going to, showed him where the camera was etc, otherwise I'd be 'infringing his human rights'. I kind of thought that telling him would defeat the purpose. We never did do it, and the CAMHS nurse's expert advice was to 'put him on the naughty chair'. As you can tell, I don't have much respect for our CAMHS team...

 

Karen

x

[Pets74]

haven't done it. when the hospital didn't believe me (going back a while now) i took him to one of the meetings, and let him do his thing, without intervening . told them to sort it out.

wonder if they ever got the curtains put back up.

 

i know some kids behave in a different setting, but my kid was like a whirlwind through the place. should have seen them trying to tell him off-still makes me smile now- he did his "can't hear you" routine.

[Clare63]

We have had a huge episiode today and I would have love to have caught it on film just to prove to others what it can be like. However my DS has said in the past the human rights thing and I can't help but feel I need to respect his rights, his meltdowns are a result of his frustration and anxiety and are so very personal and private to him. Maybe with younger children it would be easier to use this as evidence but I think as they get older and they understand or are more aware of their dx its important to respect their wishes. Especially as after wards he is very embarrassed about his behaviour and ashamed, I don't want him to feel he has to surpress these feelings as well as many others he has to surpress on a daily basis whilst out in public.

Clare x x x

[Caroline-]

Hayden knew i was using my camera phone & foundit funny. I need the paed to see it so he can understand just how much more difficult things are for him.

 

I would not have filmed him without him knowing.

[JsMum]

I think that when a child is displaying over and above the norm for behaviour for there age it can be very useful, not only does it show the level of there behaviour but it can flag up yours too, I have videod J without him relising, it was mainly for interaction purpose as I had concerns and it was evident after 5 mins into it, I understand it can look like its infringing on there human rights but I think done sensitively then it can be very helpful and only shared with the proffessionals who can help and support the child.

 

Throw doing this I have also realised that I need to give clearer instructions, one by one, warnings, and personal space.

 

JsMum

[Caroline-]

I think that when a child is displaying over and above the norm for behaviour for there age it can be very useful, not only does it show the level of there behaviour but it can flag up yours too, I have videod J without him relising, it was mainly for interaction purpose as I had concerns and it was evident after 5 mins into it, I understand it can look like its infringing on there human rights but I think done sensitively then it can be very helpful and only shared with the proffessionals who can help and support the child.

 

Throw doing this I have also realised that I need to give clearer instructions, one by one, warnings, and personal space.

 

JsMum

 

 

Hi JsMum & thank you It is only the paed who i will be showing it to on Monday, i feel at least this way he will have a even more better understanding with how Hayden behaves. When Hayden & i go to see him, Hayden will still quietly drawing he doesn't do this every visit mind, but i need to let him see to the extent of his behaviour. Last time we went to see him i was in tears as i was finding it very difficult to cope with anymore.

[Frangipani]

What an excellent idea. So many parents claim our kids save up their worst behaviours for home mking assessment difficult.

 

[Caroline-]

What an excellent idea. So many parents claim our kids save up their worst behaviours for home mking assessment difficult.

 

 

Hi Fran, you are spot on there! I spent half hour tonight also taking notes on how difficult things have been this past week. Tonight i left him doing some painting while i went to wash up...BIG MISTAKE!, when i came back into the lounge he had stripped off completely in the nude & had splattered himself in paint from head to toe in greens, reds & purple's & had stuck glitter all over himself (this of course i didn't video lol) took ages to try & get off in the bath

[flipper]

Hmmm...

 

A couple of years back I suggested doing this to gather evidence to show to CAMHS, of what J was like at home, how he wasn't manipulating us, how out of control he got etc etc. CAMHS said that I could only do that if I told J I was going to, showed him where the camera was etc, otherwise I'd be 'infringing his human rights'. I kind of thought that telling him would defeat the purpose. We never did do it, and the CAMHS nurse's expert advice was to 'put him on the naughty chair'. As you can tell, I don't have much respect for our CAMHS team...

 

Karen

x

 

I would have thought (though I'm no expert) that as his parent - assuming he's still a child - that you have jurisdiction over his "human rights" - in other words, you can do what you consider to be right for him as he's not legally old enough (or, perhaps, mentally capable) of making an informed decision.

 

I could be wrong, of course.

 

Phil

[paulathomson]

I would have thought (though I'm no expert) that as his parent - assuming he's still a child - that you have jurisdiction over his "human rights" - in other words, you can do what you consider to be right for him as he's not legally old enough (or, perhaps, mentally capable) of making an informed decision.

 

I could be wrong, of course.

 

Phil

 

 

this is exactly what i think..children do not know what is best for them and that is why its the parents responsibility to look after them appropriately...i think that not getting the help a child so desperately needs could be seen as neglect under the childrens act.. if i remember rightly... so to capture 'meltdowns' on video in order to get the help for the child is ok...most parents will do what has to be done to look after their children...

 

my child takes methylphenidate..he is not old enough to make a decision for himself as to whether it is good for his body or not...and if he didnt want to take his medication.. as he finds it so difficult.. that also could be seen to impinge on his human rights...however CAMHS dont ask the child if they want to take it.. they ask the parent...

 

we did film my ds in his 'glory' and one time i told him i was filming him and one time i didnt... the intended use was for camhs but lickily i had a good paed and didnt need it... but i would have done anything i could to get them to see and therefore help him.

[Clare63]

As ever I would make the decision on each individual, no two children are the same and as a parent we know our child best, that's why I would not do it as per my post above (20th Oct 6pm) but that my choice and others will make their own choices dependant on individual circumstances etc

 

Clare x x x

[Caroline-]

The paed was very interested to see the video evidence of Hayden (Hayden was present & didn't mind me showing him) the paed said that it's helped him form a wider picture of things & he didn't realise just how difficult things are. He has decided to up his medication (not because of the video) but because he saw Hayden in full action this afternoon & i've told him that the dose he's on during the day isn't having any effect on him even though the night time one is working brilliantly. There was two trainee doctor's in the room as well who were taking notes on the way Hayden behaved, I'm pleased the paed saw him in full swing today & that he saw the video, he needs the full picture in my mind so he knows the best way to treat my son

 

P.S thanks for all your replies

[Clare63]

The paed was very interested to see the video evidence of Hayden (Hayden was present & didn't mind me showing him) the paed said that it's helped him form a wider picture of things & he didn't realise just how difficult things are. He has decided to up his medication (not because of the video) but because he saw Hayden in full action this afternoon & i've told him that the dose he's on during the day isn't having any effect on him even though the night time one is working brilliantly. There was two trainee doctor's in the room as well who were taking notes on the way Hayden behaved, I'm pleased the paed saw him in full swing today & that he saw the video, he needs the full picture in my mind so he knows the best way to treat my son

 

P.S thanks for all your replies

 

Caroline,

That's brilliant news, so glad you got such a positive outcome, very good too that there were two trainee doctors who were able to experience first hand what its like, this should help with better understand in the future for other children in their care.

 

Clare x x x

[Caroline-]

Caroline,

That's brilliant news, so glad you got such a positive outcome, very good too that there were two trainee doctors who were able to experience first hand what its like, this should help with better understand in the future for other children in their care.

 

Clare x x x

 

Hi Claire, Thanks for your reply

 

It was such a postive outcome & i'm so pleased that Hayden's paed has now got a better understanding. I find it very positive knowing now how the paed can really help him now he can understand him so much better & what he has to go through. He has also reffered Hayden to the Sussex Autistic Society

 

And like you say it is very good that the two trainee doctor's where there so they also can learn more about special children like my son - we need more of them lol!

[lynyona]

I tried to vidoe kieran once but id not got the cam corder in the right place and completely missed what i wanted to capture no budding david bailey lol but i had hidden it on the cupboard then he couldnt see it

 

 

lynn

[Frangipani]

Hi Caroline, <'> <'>

 

Well done you!! I know how you feel when you said they needed to up the dose on the meds as they were not working. My son has had to have his meds increased for the same reasons and quite frankly when I see how comfortable he becomes in his own skin and happy and smiling and able to live independently without that super short fuse like a time bomb waiting to happen, you know in your heart the Paediatrician did the right thing. On many occasion a few weeks after my son came up and thanked me for taking the time and taking him to the doctor to sort out his meds - his words he feels much better with his meds, they help him talk to people better. They give him more mental energy to have a conversation. They help him in class to listen and understand what the lesson is about, whereas before it was just confusion and chaos and he felt sick and anxious and needed to go outside as it was too much he didn't understand Meltdown city....

 

We book ahead and see the Paediatrician every 3 months but if there is a dilemma or adjustment with meds he will see him assp then constantly weekly or more till he is satisfied that my son is smooth sailing and happy again. Usually he has had to have adjustments with meds because they go by body weight and severity of deficits. Because of his constant height and weight increase at 12 he sprouted to 5'7 by 15 he was 5'11 now he is 6'3 I call him my gentle giant.

 

Fxx

[Caroline-]

Hi Fran, thanks for your reply <'>

 

The paed see's Hayden every month due to his difficulties getting worse & his meds. The Atomoxetine (strattera) capsules he was on during the day were doing nothing at all for him, so the paed told me to try the higher dose & if that doesn't work he'll talk to CAMHS to see what they can offer. His night time meds are working fine (at the moment) so hopefully this new dose will work better for him.....we can but try. The ritalin med he has tried before was dreadful & we took him off it after three days, didn't like the effect that had on him at all.

 

Caroline xx