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 put the melatonin in DS's last drink. Capsules are a bit fiddly to open, but he doesn't notice it. He also is on Phenergan which keeps him asleep until about 5am - 6am (which is better than it was!)

Can't offer any more advice, just sympathy and hugs

Yes that's what we were doing, but he knows now (LD's may backside) and he won't eat or drink anything at all after bathtime. Actually he won't eat yoghurts (the last thing we hit it in when orange juice was refused) at any time at all now. (For a while the yoghurt threat was enough to keep in bed, that seems to have stopped working tonight).

Yurt I have all those thoughts/concerns/issues too.. about residential etc.

We've given up on the melatonin. On average he is the same with it as without.

And as I mutter to myself WHY don't they make it in some way EASY for our children to take. Pink syrup might work. Liquid might work (we have some liquid stuff Davros sent me but it's not as strong and doesn't seem to have the desired effect). Fucking capsules or horse pills. Hmmm.

And as I mutter to myself WHY don't they make it in some way EASY for our children to take. Pink syrup might work. Liquid might work (we have some liquid stuff Davros sent me but it's not as strong and doesn't seem to have the desired effect). Fucking capsules or horse pills. Hmmm.

Oh! All we've ever had is orange flavour liquid!! The last lot was called KiddNapps...

Really- how strong was it? DS1 gets 2.5 mg in capsules- knocks him out within half an hour but we literally cannot get it into him (unless dh pins him down and I take 20 mins to forcefeed him- which to be frank I'm not prepared to do; I wouldn't do it to ds2 or ds3).

Oh Yurt, I may be giving you false hope, but many of the physical problems you mention ( the painful physicality, damaged voice box, dislocated fingers, having to be dragged, running off laughing, etc) remind me of our ds 2 -3 years ago. Ds now has early speech, (borderline) SLD, ADHD and moderate ASD so although our sons are similar in age, I think we have it a lot easier! The point is it has got slowly easier! Ds is learning gentleness and even restraint at least some of the time! I wouldn't exactly say compliance has kicked in but on a better day he understands rewards and time out at last! He even brought me my pillow the other day when I was ill, (as I had done for him the day before) rather than his usual panicky poking into action! I have no advice, our kids are different! However I have found with our son exagerated parental emotion (very loud ow, hugging of injury and ignoring ds) now works, even though all the books say not to shout!
I hope this gives you some hope.

God, this sounds tough Yurt. Would Steven have any ideas do you think? Could you do a one-off phone call? GM see children right up to adulthood don't they, so may have some reassurance for you even if you've already tried all their ideas.

It is 1mg in 1ml (200ml bottle) and there is at least half a bottle left. Would you like it? I have no use for it..

I just lay DS on his back and squirt it down the side of his mouth with a syringe while distracting him with a song he likes.. same as I do with all his meds (Epilim, thyroxine ground up and in warm water). He is never any real problem with meds actually. And I don't ever plan to start giving him tablets.. can only handle liquids.

Thank you all, will digest everything tomorrow when hopefully things will seem better - am going to head to bed now. Shiny- the liquid stuff I have has 1mg per dose and it has no effect! Perhaps I should double the dose.

Well let me know if you want it.. DS's dose was up to 9ml a might.. was told that was the dose for any child from two to 18.. that it's not done by weight.. (Paed's words)

Even 9ml a night did not knock the little bugger out for longer than two hours..

Going to bed too

Morning Yurt, Hope you have a better day today! That approach training looks like it might be similar to what I suggested! Hope you get some access to something like that.

yurt have nothing to add as obv can't begin to know how it is, but just wanted to let you know that I was thinking of you.

could you get your mum to stay for a few days so you could get away and have a bit of a break? I know it's not a long-term solution but a few days away would give you a chance to recover and have some "me" time .

Thank you all- bit better today. DS1 came in for a cuddle this morning and was gentler than he has been.

I did think about Steven Sphil, but I kind of know that getting him off is reinforcing because I'm yanking him quite firmly and just need to try ways of releasing myself. I'm going to try quietly asking him to be gentle. It might work. Or just walking off (which is hard to do when he's pinning me down).

I'm going to ask school how their staff are trained and see whether parents can have a session as well.

wannbe- mum works full time (& I already ask her to do quite a bit) & already does loads (and is covered in as many bruises as me) so I can't really ask her for anymore help.

DS2 has only just started to be physically rough and it's nothing like you're experiencing but the quiet 'No pinching - it hurts Mummy' with the sign for 'pain' works atm. He still goes for the pinch but stops before actually doing it iyswim.

I thought you might know what Steven would say! I just thought he or Kaitryn might have ideas about the pre- puberty/hormonal aspect and how long it was likely to go on.

Yurt, my severly autistic cousin was exactly as you describe at your the same age.
I know everyone is different but with him
He was very physical until he was about 8 or 9 when he seemed to mature a little & calmed & was less difficult.
His mum said it was as if he grew out of the terrible 2's he also was much more able to learn both at school & home.
When he hit his teens he was again v hard to cope with at home, I think all those hormones & ASD were a poor mix. It was then he went to residential school.
His mum still believes had she not sent him to residential school he would not be the calm man he is now.
He is in his early 30's still largely non verbal but has a good mix of signs t et by, he lives in supported housing & is a charming man.

No advice or help i know, just wanted to say sometimes it does get better, fingers crossed.

I have just caught up with this thread. Two things come immediately to mind

• Team Teach training which I have prob mentioned here before. It is physical restraint, diffusing situations, recognising trigger situations etc etc. LOTS of professionals have this training and very few parents Google it or find out if DS's school does it for staff and see if one could be organised for parents
• Mindfulness (bear with me). Although this sounds like something I would immediately class as Mumbo Jumbo, I went along to a one day session almost by accident and it made a big impression on me and has stayed with me. It is all quite obvious, "choosing" to deal with situations without letting yourself get angry, thinking more consciously about difficult situations and planning not to overreact etc etc, thinking about how you think. I don't know how easy it is to come by Mindfulness, a group called Aspect did the session I was on www.aspectcounsel.co.uk It was run by two women who are parents of children with ASD. It might be worth contacting them if you are interested to see if they know anyone working in your area

NEXT....! I know SOOOOO well what you are talking about. I can't say that DS's physical behaviour has reduced but it HAS changed as he's got older. One of us used to have to follow him around everywhere for years, partly pure and simple safety and partly "tricks" (leaving taps running, pouring stuff down plugs etc, climbing on everything and jumping off). I remember the morning that I had DD (4.5 years ago), I carried him down 3 flights of stairs on my back , par for the course in those days. In the last couple of years he has stopped climbing (too big and heavy) but has substituted it with bunny hopping all the time which I think has the same sensory feedback as the hard landing he used to enjoy. He RUNS everywhere, up and down stairs so it sounds like the house will fall down, he's jumped through 4 beds in his time and all sorts of other things. But we don't have to follow him around any more, the safety issues seem to have reduced as he's gone through just about every permutation of unsafe behaviour there is, we've troubleshot the whole place and he's just too big for some of his old behaviours. he does tend to hang around in his room a bit like a "Kevin". Mind you, he does have a good, strong rocking chair in his room, a couple of big exercise balls he sits and bounces on, music on the go etc etc. I also thought that it would be longer before we came to the decision about residential but, apart from the crisis we had which prompted serious consideration (and I think was a regression), there are other day-to-day reasons such as pysical space, room to express and enjoy himself, his dreadful repetitive eating etc etc. I also know what you mean about the prospect of years and years to come. For me, I have to get up in the night almost every night, OK that isn't going to kill me, its not good though. But the prospect of getting up every night for the next 10, 20, 30 years?????!!!!!

Thanks all. It has been better today. Apart from one very scary moment where he had my neck in a vice grip, my hands pinned and was trying to rock me backwards onto our wooden floor it's felt more manageable. It did occur to me that over the weekend he got hold of lots of gluten and it's a reminder that it does still affect him and that I need to get a grip on his access to food.

I did think of talking to Kaitryn sphil about my reactions to it (which is part of the problem) and Davros - it sounds very like mindfullness. Because Growing Minds were originally Son-Rise trained they call it attiutudinal training but it sounds very much the same sort of thing. Before going on the course/having the 6 months of sessions with Katiryn I thought it was going to be mumbo jumbo bollocks, but it has actually ended up being one of the most helpful things I've done. I will keep it up my sleeve at the moment and will ring her if things continue.

I remember you talking about your ds jumping Davros and I remember sniggering when ds1 started doing it. He jumps down whole flights of stairs. Today it was headbang the wall, jump down 5 stairs. repeat & repeat & repeat. So much of the behaviour seems sensory seeking. A lot of the grabbing and squeezing is. It's like spending your time with an enthusiastic and strong young tiger or something. I think I end up feeling as if I have.

Mymate- I sit opposite someone at work whose son went to residential school as a teen and she has said something similar- that it really helped him with independence etc.

Davros - getting up every night year in year out is mind blowingly awful. It's too much. I suppose its recognising when the combination of behaviours becomes too much.

God its hard isn't it? He is far calmer today though, has just gone to bed and hasn't come down once. .

it is more about independence, they concentrated on practical living skills, social rules & acceptable behaviour i'm sure a little bit of basic typical schooling was thrown in but for the vast majority of the students qualifications for employment purposes is not a consideration.
The residential school meant they were teaching those skills 24/7 & when staff are only doing an 8 hr shift they have the patience to constantly re-enforce.
Not an easy decision but for him it was worth it.
Glad you've had a better day.

Yes that's what I like abut his current school. Life skills and a lot of sensory input. They do a really good job. I wish they had a boarding unit so that he could do perhaps one overnight a week..... They're fiddling with the special schools here so perhaps they will.