Those of you with older children with LD's - help please please please

[yurt1]

Does it ever get less physical? DS1 has come on in so many ways this year, but we are losing the battle in a physical sense.

I ache all over. My knee has gone from being pulled over my him in the street. My wrists are killing me from taking him out yesterday. I took him for a walk round an old part of town- he tried to get into every house or pub we passed- every time I needed 2 hands to keep him out with him straining to get in. When it was time to go home he started screaming the place down and I had to drag him the first 20 yards (after which he was absolutely fine).

My back has gone from constantly having to push him upstairs- he won't go up for bed or a bath, although will accept it once he's been pushed. We can't leave him in the kitchen- he knows that and accepts it but he has to be dragged out (after which he accepts it).

If I sit down he comes and lies on my head and bends my neck. When I walk down the stairs he is constantly wrapping his arms around my neck (from behind and several stairs up) and then leaning with his full weight on me. Throughout the day he comes for a cuddle which turns into a crush and a neck grab. My neck is covered in scratches, my arms from bruises and he feels like he's dislodged something around my voicebox (sounds dramatic but he's injured it in some way).

He is only 8 years old but so strong. I really fear for the future.

None (or very little) is aggressive. Quite the opposite - it's affectionate. He's just too physical. Of course its constantly reinforced. I don't want to shout at him to get off (reinforcing) so I try to push him off, but he's crushing me so much that I have to be physically firm to move him- which he loves.

He's constantly exploring and testing boundaries. He understands that he's not allowed to do certain things but he just does them anyway then shouts and shouts and shouts when refused (he finds this very amusing).

I'm exhausted- please tell me that compliance kicks in or I can't see us getting through the teen years. This presumably is pre-hormones.

I am sure that a lot of it is sensory which is why I find letting him have a rocking chair and bouncy balls actually works far better than trying to "interest" him in activities at home that are not really on his radar!! DS also has this controlling level to his physical contact. It is often affectionate and interactive but then it changes VERY subtley and tips over into controlling verging on menacing. He puts his arms round me or puts his hand out to the top of my head, all great when its affectionate, not so great when it isn't, but others can't necessarily see the difference but I can FEEL it! There is also the manic, hyperactive behaviour where they just won't LET themselves calm down or wind down. I find DS often has to be told what to do and just saying "go to sleep" or "settle down" can really help him move on (it doesn't always work!).
You are so right about the combination of behaviours, that is what becomes harder and harder. It isn't just melt downs now and then and it isn't relentless day-to-day caring - its both. I really do believe that the residential school DS will be going to in Jan will be really good for him and I think he will really enjoy it. I am hoping so much that he will be able to manage his behaviour better, access his own life (as we've said before) and then be better when he comes home and make that a new pattern of behaviour!

I really hope it works out for you all in Jan Davros. I think its the relentlessness of it that is getting to me at the moment. I feel like I need 6 months away, I think its just reaching exhaustion stage.

DS1 is so similar- he starts with a cuddle which is lovely, but turns into a crush and then I'm stuck and can't move him. He also gets hyper and can't wind down (that's how he was last night). Melatonin will work then, but I cannot get it into him.

He reads this stuff I swear- has been merrily skipping around the house since 3am.

yurt1, my DS has a development delay, he is only 2.10 years but I was going to reply to your thread telling you what good results we've had with the instructional control steps we learnt though A.B.A.
BUT, yesterday I took him to a friend's house and I failed miserably to control him. So obviouly I am not doing it right.

I always wonder which of his behaviours are normal (little boy's naughty will-grow-out-of behaviour) and which ones are due to his neurological problems.
But reading your first post really made me wonder about the future.

Davros, (are you there?) didn't A.B.A help you control all these behaviours? I thought that was one of the main advantages of aba.

I need to fix this before he becomes bigger and stronger.

We've been running a part time ABA programme for over 3 years now. Having a good understanding of reinforcement will help in dealing with challenging behaviours but when a behaviour is compulsive or sensory seeking or due to curiosity with no understanding of danger ABA can do little really. The reinforcement comes from seeing the compulsion through, or getting the sensory feedback. Anything you do to stop it (such as me grabbing ds1's wrsits to stop him pinching me) may in itself be reinforcing.

What ABA can often do quite successfully is deal with one particular behaviour. But usually its place is filled by something else.

Of course ABA helped manage DS's behaviours and teach him skills. He is 12 now and has been doing ABA in some form since he was 2(intensive home based, then ABA school). We have had great successes - he is basically extremely compliant due to what I think of as "ABA conditioning" and will do whatever I ask him even if he is unhappy about it or uninterested, but he will not necessarily do something well or for long, he will make a half hearted attempt or lose interest very quickly. The "come here" program has been crucial, we toilet trained at a normal age (although he now bedwets) and his communication was established and developed using ABA. Despite the success of ABA, he can't help being Autistic, having Learning Disability and being anxious. ABA will not fix this but it can improve things and has really helped ME deal with DS. I learnt ABA through being immersed in DS's program, whether I liked it or not, I can come up with an ABA approach to any problem....... BUT I may choose not to use it or it may not work as, when our children get older, their behaviours become more complex and often multi-functional. As Yurt says, you then build in the sensory and/or compulsive sides to behaviour and it is very tricky AND, of course, you must pick and choose what to target as behaviours do get replaced. The behaviours we have talked about on this thread are not really harmful or obstructive to his day-to-day life but they are tiresome after some years! I think we are basically talking about stimmy/sensory/compulsive behaviours here, not when they don't understand how to put on a pair of socks, how to recognise numbers, the difference between big & little, that they need to wear their seatbelt in the car etc etc. There is no way I could have changed DS's physical behaviours in my opinion and it would have been fruitless as they are always "developing"!!! A couple of years ago he always slid down the bannisters, then he slid on his stomach, then he slid down them upside down, then he stopped and decided to jump down 2 steps at a time, now he just runs downstairs full speed. If I had tried to target each behaviour, I would have had to follow him around, worked out a way to prevent it and R+ an alternative behaviour etc - they do this at school but I don't do it at home as I wouldn't have 2 minutes to myself - and the next thing you know, he's stopped doing it or changed it. Also, if he goes anywhere else, which he does, such as Saturday Club, holiday schemes etc I can't expect them to follow through every behaviour perfectly and this is something I accept to get the benefit of the services. I also think, as you say, that some of it is exaggerated "boy behaviour" and also that it isn't so terrible to be allowed to do something that you find fun, its just a few years later with the light fittings and ceilings in danger of crashing down that it gets to be a pain!!! We simply can't provide the space and facilities he needs any more and we have found somewhere excellent that can and I think that will make him happy.

Am the chocolatiest of all teapots yurt, but am sending ineffectual sympathy from the non-SN world.

PMSL- ds1 is doing the sliding downstairs on the stomach thing now. He does a gallop as well which reminds me of your ds.

Is there anything (reachable) your son doesnt much like that could help to soften a too hard hug? My son will raise his head if I softly touch the nape of his neck or blew in his ear, for instance. This can allow me to escape from his chin clinches! Apologies if this is useless for you!

He hates duvets. I'm thinking of draping myself in one

I will try blowing in his ear- but he may like it (or I may not be able to reach if I'm pinned) - but definitely worth a go. Thanks for the tip.

Thanks for posting back, it is really interesting for me to know from people with so many years of experience dealing with this and using ABA.
When I first started with the instructional control steps, DS was responding really well, for example, if we asked him to get down from a table and didn't do it, we would make him get down for as many times as necessary until the point when he got down from the table on his own and without complaining or screaming. After one day of this, it was amazing, he was so responsive to all our requests (and we are always careful of only asking for sensible things, because after all he is a little boy).
But now, he is back to NOT doing what he is told. He is also developed a true "BOND" with the light switches and keeps turning them on/off ALL the time and everywhere. I don't know how to get rid of this behaviour. I think it is down to boredome and his innability to intertain himself through play (unless I am involved).
What would you do in this case? If the behaviour is due to boredome? I have tried diverting his attention to something else, which does work, but I cannot do this all the time, it is impossible.
THe other thing he has started doing is being a little agressive towards me and DH. We treat him well, there is no reason for this, so again, I don't know if this is a normal boy behaviour, which he will grow out of, or if it is something that can escalate.
Sorry for the essay! Maybe I'll start my own thread. Sorry for highjacking!

You can get lightswitch covers from fledglings (actually they're socket covers, but turn them upside down and they'll be fine for a 2 year old). There's a link to fleglings on my website as well.

For stimmy or compulsive behaviour preventing it happening in the 1st case is often the only way tbh. DS1 hasn't had a light in his bedroom for over 2 years now as he just flicked it repeatedly at bedtime. I did offer him one recently but he went ballistic so I've left it.

Yurt1 Im sorry to hear whats happening with your son . Im in the same boat as you but my sons 4 and im worried about his future also.
My son is strong like yours and I worry about being able to control him when he gets older. He kicks out a lot more now when he doesnt want to do something and he has a lot of strength in the kicks. I know what you mean about when the child wraps around you and leans his weight on you. I hate it when ds wont get up and im having to pull him up by his arm.
Hes been braking lots of things lately stairgates, pulling curtain rails out and hes broken a tv/dvd player. Also the screaming and tantrums are like your little boy as well.
I wish we knew what will happen in the future. im worried I wont be able to cope also but its one day at a time I suppose.
i wish I had some advice for you but im just learning as I go along. And I have actually learnt a lot about Autism from reading your posts when you went by a different name and Im so glad you are on Mumsnet

Tiny socks, have you tried a torch. When ds2 flicks the lights (it got to the stage it was taking us 5 mins just to move him from 1 room to another, as he got stuck on switching on/off)
Now if he looks like he's getting stuck by the light switches we hand him the torch, sometimes he doesn't want to accept it, but if he starts screaming he knows the lights are switched off all together & we make them stay off.
DS2 has OCD/autism & tbh the OCD is the most controlling so not sure how relevant for your ds.
Sorry yurt for butting in!

Tinysocks, its all very well continually modelling a behaviour, taking them away/down from something, and its the right thing to do with a young child who needs to learn from YOUR behaviour (assume you are reinforcing every time he lets you do this? and reinforcing at other times when he is NOT doing it?). Staying in bed or bedroom is a classic for this sort of intervention. You really need to establish "SD control" which is probably what you meant in your first post. As they get older, all the reinforcing in the world just won't work a lot of the time. We had to get to a point when DS would respond without thinking and would listen, this was all established with the early, basic ABA programs. But, to be realistic, there are some behaviours you just have to prevent (DS's light switch was moved to outside his bedroom years ago) and some behaviours you have to tolerate and some behaviours you have to accept. Something I am sure I have said on MN before is that imo the biggest "divider" (if we are allowed to use that word/idea) between our children, certainly those with ASD, is their behaviour, not whether they are verbal/non-verbal, hf/lf etc.

Yes totally agree there Davros. I was sent a photo of ds1 on a class trip earlier this week. A class of children all with severe disabilities, some perhaps with greater LD's etc than ds1. BUT all were standing there nicely in the photo except for ds1 who was straining to get away and being held in place by his LSA (who looked a bit stressed and determined when the others looked relaxed). We sniggered (oh phew its not just us).

I did ask his teacher when I bumped into her in town whether he was as unmanageable with them out and about as he is with us (and they have a good a understanding of behavioural stuff and reinforcement) and she said basically yes, and that whoever had him was completely unable to remain with the group and would have to circle around and try and rejoin the group as often as they could. This behaviour unfortunately is compulsion driven. Things like 'come here' 'sit down' etc work- but they work for seconds -especially when there's a window or letterbox to look through over the other side of the street. ABA has taught ds1 commands - and in a controlled place such as home or school we can often get a long way with that and get compliant behaviour a lot of the time- but outside where the compulsions are much stronger- he'll still obey the command, but it interrupts the behaviour (often for seconds), it doesn't replace it. And seeing through the compulsion is way stronger reinforcement than a chocolate button (or anything else) unfortunately.

oh PMSL just looked at the photo again - there are TWO people holding onto him - ds3 just looked at it and said 'is ds1 trying to run away?'

Hmm just had a EUREKA moment (thanks Davros)

I was thinking that I agreed with Davros' division about behaviour but that I also agree with stuff I've read by Donna Williams who makes a fundamental distinction between those who have autism 'condition' and flag waving autism is good and a gift aspie types who practice (if you like) autism 'culture'. She's written before about the differences in processing if you develop language before 5 when compared to developing it after 5.

Anyway the big thing she talked to us about was ds1's INVOLUNTARY behaviour and I realised that really this is our biggest problem. ABA etc has helped the 'autism' - it's given him understanding, it's allowed him to work at a table, it's given him a way to communicate, but as he's grown older his ability to inhibit involuntary behaviour out and about has decreased massively. I have a photo of him at 4 - we're in a family group stood next to a cliff and he's holding my hand. now we can't go near cliffs, now I can't hold his hand (I have to grab his wrist) and now he wouldn't wait for a photo to be taken. His involuntary behaviour has probably increased at home as well, but he can control it there, so when he does work with his tutor he crams himself into a corner (and we make sure he's there) so he can't easily jump up and run off. Donna Williams said that if we didn;t get a grip on the compulsions etc then they will destroy his chance of life and I know what she means.

When he has his next paed appointment I'll talk about risperidone (spelling?). IN the meantime it might be time to talk to Donna Williams again- she's helped with this type of stuff before.