Can't deal with this anymore but I know we have to

[ShinyHappyPeopleHoldingHands]

DS (7) is out of control. I don't know where the lovely child he used to be is. I can't believe a child with such a degree of physical disaibility (can't walk/stand unaided and is very clumsy and uncoodinated) can throw with such deadly accuracy. He smashed a Thomas train into DD's head last night, without warning. They were just sitting on the sofa together and BANG; he sees an opportunity; he takes it. She cried for ages.

DH and I are covered with the battle wounds of the weekend. Nearly every time I pick him up (to carry him to the car, put him in his chair etc) he takes the opportunity to pinch bits of my skin between his fingers as hard as he can. The tops of my arms are so painful and covered in small purple bruises. My neck is red raw but DH's is worse. And he has the skin scraped off his the top of his head in a number of places. Just when one scabs over and starts to heal DS rakes the scab off and makes it bleed again as well as doing another couple of good measure.

DH has done the school run this morning. He is so angry and stressed (from despair at DS!) that I'm sure he shouldn't even be driving. And he has to do 40 mile run in total, taking the others into school and then off to horse riding (RDA) for DS and then him into school. I said "sorry" (pathetically.. helplessly! ) as he went out the door with DS in his arms who was attempting to slap him round the face and he roared at me "IT'S FINE!" with real anger. I know he's not angry with me really but we have worked so hard to keep our relationship on track lately. So many marriages break down when there is an SN child in the family. And most of them are probably not as challanging as DS is now. We try to be a united front. But DS2 is pushing us to the limits of our endurance I swear. This morning was bedlam. DD (8) was so stressed at being chased around the (small) living room by DS2 who was trying to pull her hair (and he drags it from the roots ) that she and DS1 (15) had a big argument which just fuels DS2 2 even more. He seems to feed off it.

I don't know what to do anymore.

There is a CHN (child in need) meeting on the 17th at the respite carers house (came about as DS attacked me in paediatrician's office and she demanded an urgent meeting)aimed at getting us more respite I think. But even the respite carer is struggling because he is sometimes violent at her house. School are having similar problems. Why should anyone else have to cope with DS? And God, at the moment the 17th seems such a long time away.

We just can't handle this as a family. But we have to. Not handling it is not an option.

Sorry for whinging. Can't whinge to anyone else.

Thankyou 2isP. I didn't know we could see a ed psych.. can we? Who do I ring? We haven't seen one since the early days of statementing when he was 2!

Yes maybe you are on the right track with my DS as well. I don't know how much he understands about his own disabilty.. I wish I could see into his head!.. but he has a constant example right there of what other children can do and he can't.. DD - who is only 18 months older than him and similarly sized.

Sometimes it's as if he seems to love us and hate us at the same time. I don't understand it. Yesterday when I got in from church, with my neck clawed red raw and sat there in despair for a few minutes he cralwed up to me and said "You hate me!" He has never said that before. Although he shouts "I hate you!" a lot.. (His language is indistinct and very delayed but ever improving.) I said "no I don't DS, I love you.." which seemed to give him food for thought for a moment.

DS does the same as yours.. random nastiness and tantrums... but also the more "normal" kind, when tv is switched off eg.

Last night, after being horrible, he started being lovely to DH so DH told him to come over to me to apologise to me. He said "kiss!" so I put my face next to him.. and he bit it!

How does that work? I don't understand him at all. A behavioural specialist (who seems to have deserted us!) said it was all about power.. he is controlling his environment in the limited way he can. And I can believe that.

The trouble is that even if you can understand in theory why a child might be aggressive or have tantrums, it doesn't always help much when you are in the middle of it does it? And especially if there is actually bugger all you can do about the reason i.e that they have disabilities .

Sorry that's probably just depressing and not any help at all.

BTW Shiny and Fio if you meet up in Faversham please let me know. Its less than an hour from me. Would love to see you again Fio (and meet mini Fio) and meet Shiny... if its a day I can make I'll definitely come (she says totally inviting herself).

I know just what youre going through my 13 yr old dd does just the same to us and the other kids.Shes only the size of an 8 yr old and very slim but shes so strong,she also harms herself in many ways too.I know what a strain it puts on family life and i dont have any answers but i really wish you well.

Oooh another Shiny Thank you for the support - sorry you're going through it too. I fear for the future; he is so big and strong now, incredibly uncoordinated but amazing upper body strength. He didn't even have pincer grasp until a couple of years ago.. but he mainly uses his new skill to hurt people!

HitC.. would love to meet you.

Shiny ,do you have any respite?,we get 5 hrs once a fortnight when dd goes to a play session its not much,but we look forward to taking the other kids out cos we cant take dd out at all,shes just to difficult to handle.

We get six hours daycare every 3 - 4 weeks and have recently started getting 1 overnighter every six weeks. We used to get six hours day care a fortnight before the overnighters started.

I think the overnighters are in danger of being stopped though because he's not sleeping for her and she doesn't take non sleepers. He has just started on Melatonin though so is a little better than he was.

I do feel guilty asking for more (which is what will be discussed at the CHN meeting I imagine) but we aren't coping v.well at all.

Hi Shiny

So sorry you are going through this

Have you ever considered sending your ds to a sn school? It could be that he is finding it hard at ms. I know loads of people whose lives have been turned around by having a school that deals specifically with their childs needs. You find the school is more supportive and you find friends whose children are similar to ds.

I think about it often Blossmhill.. but I can't see it making that much difference. he has constant 1-1 and there are lots of disabled children at his school although he is undoubtedly one of the more disabled ones. He is making progress and seems happy there.

Hi Shiney
so so sorry you are going through this.
My DS is 10 now ( he has multiple complex needs, very limited language and his primary diagnosis is severe ASD).
He used to attack me and his brother repeatedly when he was smaller - ripping and biting my neck was his favorite.
I had a good ed psyche at the time who helped me enormously although it was a few years ago now and that time is a bit of a miserable blur . It was mostly identifying what was provoking the outbursts and how to deal with them.
With DS it was mostly disorientation and fear and frustration - plus he had become completely obsessed with me and controling my reactions. He particularly liked to headbutt me whenever i leant over him - even to kiss him.
He has improved massively over the years but still has a need to pinch me REALLY hard when he is upset. He can draw blood one minute and then be trying to kiss me better the next. It is hard.

We had to adopt total no tolerance for him being in any way rough with siblings and if he hurt either he would imediately be removed and i put something beloved of his in the bin. That always used to make me cry so hard because his fav things are so important to him.
he got the idea quite quickly though and has actually never once hurt his younger sister and has not hurt DS1 for several years.
He still pinches me though - ithink it is a strong means by which he connects with me when he is at his most upset and frustrated.
I doubt that any of this is any help - mostly wanted to just post my sympathy - hardest thing to deal with X

We did

we are hoping for overnighters soon,but the same as you our dd is up most of the night and melatonin and chloral hydrate dont work on her,its so much harder to cope with little sleep.Like you i dont like moaning about it but its so nice to talk to someone who is going through a similar time ,hugs to all of you.

((Shiny)). You're not whinging, it must be very stressful for you all, including your ds. Sometimes even he may not know why he's reacting to something, or be able to control it. I frequently get very wound up and agitated with my dh because he is committing the heinous crime of not having his hands where I want them to be, or he's breathing a bit loudly (insert embarrassed smiley) and my issues are mild, especially compared to your sons and I'm not violent, I just snap and fret and get stressed. Afterwards I'm able to rationalise them and say "for goodness sakes, it's only minor" but at the time all I can think is that the feeling of rightness isn't there. I don't think I'll ever explain it fully.
The issues with your ds will be different and his reasons for acting as he does will be different but I wanted to let you know that you're not alone with living with someone who acts irrationally a lot of the time. My son does a lot of things that seem irrational as well but he's not verbal enough to let us know exactly what bothers him. Whereas my husband puts up with someone who can be very controlling, even when I try my best not to be.

freind of mine has just had her 6 yo (hemiplegic CP and severe learning disabilites) reffered for special behavioural therapy. He hits and punches and because he can bum shuffle, can get to places you'd rather he didn't. But he has no understanding at all - functions at about a 6 month level. I can't recall what the thingy is called (I'm so useless) but the paed thinks it will help teach him that hitting is wrong.
I don't know what else to suggest as dd (severe quad CP) is still only 3 and would be unable to hit but she does have monstrous tantrums. Someone at Scope once told me that kids with CP have hair trigger emotions because of the brain damage, especially if there's any in the frontal lobe. Fat lot of help of course but might suggest ADD type meds if you want to try that route?

NMC he went on Ritalin once.. (he has a "diagnosis" of ADHD and lots of small diagnoses but no main one) and it sent him off the wall after 2 (1 day's worth of)doses. He came straight off it.

Paediatrician has mentioned other meds but I am scared. I would rather have him like this believe it or not, that have him dopey.. or worse still, trigger his epilepsy again.

He generally functions at about a four year old level, so they reckoned at his last review. But that is open to negotiation.. he is such a mixture of contradictions; I don't think you can put a figure on him like that. His pre school teacher once described him as having a "high degree of social intelligence" but that was 4 years ago and before he turned "nasty".

TBH the "nastiness" dates back to 2005 when he had 2 massive fits (none before or since.. 9 weeks apart.. first one nearly killed him!) and subsequently being put on Epilim.

No brain damage at all is visible on MRI scans but regardless, his brain obviously does not work how it should and never has.

I'm so sorry things are so hard for you all

I can understand being wary of medication. I have heard of children being given risperidone with good results but I think it's trial and error as to whether it helps or not.

I hope you get some help soon.

Shiny,I think i mentioned it before but have you thought about Unisafe training? DS's social worker arranged ours, its really worth thinking about,,,,,,,,,,,,, Lots of love and hugs to you and your husband xxxxxxxxxxxxxxxxxxxxxxxx

Lottie if you did I must have missed it. It have just looked at up, specifically "unisafe at home" for parents/carers. I have printed some info out; will discuss it with DH and we'll probably mention it at the CHB meeting. Thank you

I like the sound of something like this; it seems so much more proactive than sitting around waiting to be granted more respite, which, whilst I know the value of it (don't I!!) and am very grateful for it, it doesn't really address the issues at hand does it.

Shiny

So sorry you are going through this. Forgive me if I am telling you stuff you have already tried but here in Cambridgeshire there is a specific group called the "Child Disability Team" who will visit you in your home and help to manage and support you with difficult behaviours due to a child's disability. They include child pyschiatrists as well as nurses etc. Do you have anything like that that you could access? Even if they have little practical advice sometimes it just helps to have someone to be at least trying.

I think you could ask your paediatrician to see an ed psychologist. Also, I second what Blossomhill said - sn school. Have you considered looking around a sn school? You could get a good idea of the kind of class he could be in, right for his level of understanding.

Our ds school is fabulous, and I feel a lot of frustration is curbed because I can talk to ds about his friends, for example when he kicks up about having his night splints on, I tell him about his friends at school and their splints/exercises etc. He doesn't feel totally alone and different because most of his class also has cp.

School does some physio every day too, which takes the pressure off me a bit.

Shiny... just seen this. Sending love and hugs. Please ring if I can do anything. I am thinking about you and will email.

Shiny, just wanted to say I feel for you! Hang in there!
I have no wisdom to pass on just a few thoughts!
Ds (now 7 also with complex mix of Dxs includind ADHD) used to bite my nose instead of kissing (and had a lethal aim/ viscious pinch/ and could scratch for england)! It was so hurtful physically and emotionally! I dearly wished I could have a holiday from parenting !!! It was as if some impulse or crossed wiring occurred! Almost like a short circuit. His impusive/reflex like actions had an accuracy his poor coordination does not allow with deliberate actions. It felt abusive! Things improoved for me once he matured enough to show supprise and learnt to say sorry.
I always punish nonaccidental hurting (isolation/ time out worked for DS before he matured) and found it was helpful to enphasize the hurt rather than the stiff upper lip approach! I found a way of holding Ds that protected me from fingers,feet and teeth!
Life has improoved as his understanding and physical control have improoved. We have found medication helped slow down the impulsiveness although it took several trials to find a helpful one!
I hope you get respite soon and life improoves for you too.

Shiny, the only idea I had has already been mentioned and is probably stupid anyway (gloves). That and a stiff whisky, and a hug.

Sorry bad spelling day!! I tried gloves,slippery hand (nail softening) cream, which our DS hated but a furry glove puppet (the tickly fur warns of approach) became a friend! Soft (sgiggy) fiddle toys in the hand on car transfers (blutac is useful), helped keep hands and minds occupied! Hope something works for you shiny. Sometimes little solutions put together can help!