Feel like I can't keep this up

[26minutes]

Hi, I've posted on the odd occasion here in the past, but mostly lurked and cried at reading threads with such similar stories to mine.

ds2 is getting worse adn worse by the day. ds1 is scared of him, hell, I'm scared of him at times. I've had years of having excuses made for him, years of being told it's my crap parenting that's at fault (so how come my other 2 children are fine?), and yet again been told there's nothing wrong with him.

I managed to get a re-referral to CAMHS recently, managed to go to a different one as the woman I should have been seeing at my local one just had me in floods of tears each time I spoke to her. I wrote a huge huge letter telling them what life was like with ds2, they have actually taken us seriously that there is something wrong and have actually seen him kicking off. But of course the Conners forms were all 2s and 3s on my part and 0s and 1s on the schools form, with just the odd 2. The school obs just showed a very well behaved, quiet, subdued little boy, described as 'almost too good'. So of course because the behaviours are only present at home then yet again it's clearly not anything wrong with him, but with our relationship and I need to have lessons on this.

I know there is something wrong with my son, but they keep making me doubt myself, and I just can't deal with it any longer. I'm shoving him in after school club most days because I can't cope with him at home. That's hardly fair on him. I feel guilty, but at the same time relieved that he's not here beating me or ds1 up. Not gouging more lumps out of the wall. Not ripping up more parts of the carpet. etc etc etc.

And now, because I'm being made to doubt myself and I'm angry at the fact that nobody can see that there is something wrong with him I'm being horrible to him (and ds1 as well - he listens and does as he's told and is no trouble whatsoever so lots of the time he's being told off and shouted at for no reason becasue I need to get the frustration out of my system and he just gets on with it without meltdown so it's easier and more satisfying for me to tell him off and make him do things that ds2 should be doing. Just to get an easy life).

He is classic ADHD/ODD at home, but nothing elsewhere until he is comfortable. He's not comfortable and relaxed at school hence no signs of anything. A PMH from CAMHS who we were seeing for a couple of years said earlier this year that she thought he had ADHD but couldn't begin assessing until he was 7 due to a testosterone surge at 5/6. Next time we saw her she discharged him, wrote the discharge letter to GP saying there was nothing wrong and that I was handling his behaviour well. We went straight to GP, told her she was talking bollocks and what about what she said aboiut ADHD, GP said if she'd said that she'd have written it so therefore she couldn't ahve said it. Then I waited the 3 months, got a re-referral to CAMHS, spoke to the head PMH worker who was hte most patronising cow I've ever spoken to. Had me so upset it was unbelievable. When I mentioned what the previous person had said about ADHD she said "Oh, L wouldn't have said that". Then I complained, got the appointment at the different offices, and I honestly think they only did the COnners forms and the school obs to shut me up, knowing that he is not showing signs of this at school.

I've bookmarked a load of threads for DH to read later, threads that say the same thing. DC is not nt, but as it's only happening at home then the 'professionals' say there is nothing wrong and it is the parenting that is at fault. I've spoken to people in ds1s class who say exactly the same thing. They've been begging for help with their child since 2, but as no probs elsewhere there's nothing wrong, go on this parenting course. Then, hey presto, they reach 7 or 8 and the child starts causing issues at school and suddenly they are being taken seriously and gettign statemented.

Sorry for such a long post, no-one needs ot reply I just need to get this off my chest as no-one seems to understand. I've got no-one in RL who I can spout off at, there are no support groups locally and I just need to scream adn shout.

Thank you for your reply. I think that thread may be one of the ones I've bookmarked for later reading. I just want to be able to enjoy my son. It feels like we're living on edge, worrying about what he'll do next. He needs help, we all need help. Real proper help, not just more leaflets and the same old parenting courses rehashed with a different name. DH is going to get some cctv cameras and put them up in all of the rooms so that we have some footage of the things that he does. They told me the same, that at school he is a lovely little boy, and I should be very proud. How the fact that he knows how to behave means that I've obviously done something right and I shouldn't be disheartened. I think that makes me feel worse if anything.

"he tries so hard all day to 'hold it together' that when he gets home (safe place) he collapses/goes nuts/ is hard work???"

Yes yes yes!!! DH and I have said that pretty much word for word. I was dreading the summer holidays as I had no idea how I'd cope for 7 weeks, but it got to it and I didn't want September to come because he was so much better than he had been when he'd been at school. I was seriously considering Home Ed, but I don't know how I'd cope with that.

One of our GPs has seen him in meltdown mode and so has one of the people from CAMHS but they haven't seen his normal day to day behaviour which I think sums him up much much more, because thats not 'bad' but certainly not what you'd expect from someone who is nt. We've taken videos but it always looks like he's playing up to the camera, hence the cctv idea.

We're the opposite end from you - Portsmouth. DS is just 6. How long have you been trying to get a dx? I've been seeing people about his behaviour since he was 2 and a half, but knew long before then that something 'wasn't right' with him. There seems to be so many people in this position that we're both in.

The list one can join from he-special.org.uk is about home educating special needs children. Joining does not mean any commitment to actually deregistering, it is just a forum for discussion/support/understanding.

You do not have to recreate school at home, but do it your way, a way that allows your child to relax and thrive in their own way. (As opposed to spiraling out of control with the profs standing by blaming and threatening.) When I need to explain home education briefly I say it is like the summer holidays:)

There is a book called Paths Are Made By Walking which has pieces written by parents who have home educated their children with various special needs. It is written by current and previous members of that list.

I lent my copy to my Elective Home Education person from the Local Authority to read. He said that it was most helpful for his understanding.

26minutes - you will know from the threads that you have saved that there are many of us out there that have DCs with Jekyll and Hyde characters. I have DS1, but he has been dx with dyspraxia, hypermobility and SPD - so there are some physical manifestations that can't be denied.
I have even had a couple of therapists say that it should be treated as a compliment to you that the relaxed child's behaviour seen at home - however destructive. You have created an environment where he feels he can be himself.
Yes to the video, but it does need to be seen in context of how the situation starts, showing your parenting skills at trying to alleviate any harmful action.

Thank you TooJung. I think my main issue with the Home Ed is the thought of being with him 24/7. I think I would actually love the H-Ed itself, it's more the feeling of being trapped that I would struggle with. I'm not sure if that makes sense, I mean that I'm not sure if I would feel that I had no time away, no time to myself. I've looked into local H-Ed and there is a local group that seems active, that have weekly meet ups at a local adventure playground, plus do regular days out, so there would definitely be local support. Plus I have a friend who home educates her 3 DC. It is something that I would still be very keen to look into but I think it's something that I need to really prepare myself for it.

Auntevil - yes, I have had that 'compliment' paid to me as well. DH is able to get a large staff discount on trade items such as cctv so we would be able to get enough to cover every room and always be recording, so would get things as they start, as things move onto other rooms, would show how I deal with it and more importantly for us show how he is day to day - he has a lot of movements and expressions etc that we have tried to explain but he doesn't do them when he's not relaxed, and when other people are around he's not relaxed so obviously doesn't do them. A mammoth task, but something that we're feeling is really necessary if we are to get across how he is.

My son (8) also behaves very differently at home from at school.

At school he does not prance/tip toe walk, he doesnt obsessively re arrange his school things, he doesnt "need" things a certain way.

I dont know why...I think its because he is comfortable at home and can be his "real self" IYSWIM?

Have given up trying to get school to understand he has asd. It will never happen.....not at his current school anyway.

I am sorry you (and imogen) are going through this....HCPs automatically blaming the parents is the lowest of the low IMO

Although, even if the school did believe you in a dx, you might get what my DS's school said when they read the report: 'can't really believe it's the same child'. So they have acknowledged that he has different behaviours at home. They work hard on his physical skills, and do some work on transitions - but that's pretty much it.
Part of me can see it from their point of view. How can you 'help' a child when they don't exhibit the behaviour that they do at home. But someone should be responsible for offering support and advice?!

Oh Imogen, I could have written that post myself. It really does sound as though we are in exactly the same boat. Is your boy in yr2 or 3? The swinging round lampposts, regardless of whether they're right next to the road or not, squeezing through gaps, climbing through and pver railings, pulling leaves off of hedges and trees as we walk past, constant running hands along walls etc, stamping on anything that is laid on the ground - the noisier the better - drinks cans, plastic packaging are the best - picking up little bits of litter from the ground, then the trying at every opportunity to trip ds1 up, to punch him, swing at him, kick him, anything he can to attack him (apparently the attacks on ds1 are just to get at me). All that, while it's hard work to say the least, I can kind of deal with, what is impossible to deal with is the panic that sets in when there's a loud noise. A noisy motorbike, car revving it's engine, sirens, the loud hiss as a bus goes past, any of those set him off and then I can't control him, can't predict what he's going to do. He just panics, darts around, across the road at times, no amount of calming him down will work, he can't listen to me when I'm trying to catch hold of him and tell him it's ok and that I'll keep him safe. I've recently applied for a discretionary blue badge, but I'm not holding out much hope. DH is going to borrow my dads car next week so that I can have our car then at least if we do need to go anywhere I've got that so it will make it easier for me.

Becaroo/auntevil - I'm lucky in that the school have been really supportive. I've been in a few times for a cry and the deputy has been brilliant, she's said anything they can do, to just go in, but there's not really a lot they can do. His teacher is very 'old school' but I've had a few hugs off of her in the mornings, she can see when I've had a bad worse than normal morning and gives me a hug or just a look. They do seem to understand though that children do behave differently at home and school and the deputy even said that if his behaviour was so different between the 2 then that clearly shows that something isn't right. Well if a teacher can see it, why can't a qualified MH worker?

Its the whole system that is at fault for us really though. When our DCs hit education age, the school is expected to help with strategies and deliver programmes to assist. The trouble is when the same behaviours don't exist at school - what do they have to work with? DS1 is social, he is above average academically - so there is nothing holding back his learning. He does not get into any trouble - actively avoiding playground/class squabbles. The physical issues of poor motor skills/planning, slouching (sleeping ) on the desk, pencil control etc are all addressed - daily OT, break out sessions to do a sensory programme of physical activities. I really couldn't expect the school to do more - when you look at who they have. They don't get to work with a trouble maker, tantrummy, sometimes with red mist aggression toward friends and family. They don't have the zoned out child that can't dress himself, eat properly, follow simple instructions. Who is meant to help with strategies then?
Nobody involved in his case has ever disputed that he is 2 people - tbh, i just don't think that they're particularly bothered as long as i just get on with it

Do you think that if you removed the primary source of stress in his life (school) then being with him for a lot of the time HEing would be less ghastly than dealing with his post- and pre-school behaviour?

As I see it, you don't get the choice of an easy life (none of us here on this board get that choice), we just get choices between harder and easier ways of coping with the life we've been dealt.

If you ask on the HE-special email list, you'll get heaps of replies from people saying that the melt-downs disappeared when school was removed from the equation. I certainly can't begin to imagine the stress and distress that introducing school into our daily lives would add and, for my family, that's a deal breaker - we'd rather home ed.

Maybe find ways of avoiding the 24/7ness of it? Like: arranging some kind of family-shift-system with your OH so each of you gets some genuine time out of the family each week; some kind of child care (perhaps where someone comes to your house to look after your child there, quietly engaged in a computer game or something, for a couple of hours while you go out with the younger child?); hiring local teens to come and be a mother's help (I do this at least once a week - it means that when someone does a runner outside I can yelp "catch them" at the teen, which reduces a whole heap of the stress, and they play with some of the offspring at home while I can concentrate on other(s)); finding HE groups where there are children with similar needs and interests who can bore each other to tears about star wars lego rather than you

For us, HEing is completely the right thing at the moment. For other families, getting the school provision optimised is a better option. For lots of families, the optimal solution is different from year to year.

Honestly?

I have given up in a sense. By that I mean that my son goes to school for the social aspect of it - he loves playing with the other children and enjoys being with his friends.

But education/sen wise? Its down to me!