help please

[devientenigma]

Someone help me please.On DS list of diagnosis is severe challenging behaviour. Although this should be changed to extreme.
Can't cope anymore. Thanks for the vent.

Sorry your finding it difficult, what about his behaviour do you find challenging? If you tell us I am sure someone will be able to suggest some things that might help.

sorry you are going through such an awful time. I think you have had some dire experiences with SWs IIRC, are you getting any decent respite to help you get a break?

hello devientenigma - is it getting worse?

Hello, what happened with your new social worker? Did she turn out to be any good? Sorry you are having such a horrible time. Has anything in particular happened or has everything just got on top of you?

Hi all, thanks for the replies.
Weekends are getting terrible, just can't seem to work out what the triggers are. His self harm and violence is getting a lot more.
It's his head banging I can't deal with. Also the worry of him not brushing his teeth especially after having 12 out.
Have to say the SW seems ok although she has been on the sick for a while. As with his behaviour therapist who's been on the sick all year and his OT who's been on maternity leave since end Feb.
Anyway I hope all of you's are doing ok.
Take care x

you might want to write to my sis, her son is non-verbal, autistic with challenging behaviour. Been through a few double glazed windows in his time and vast amounts of head banging. He is 20 now and is much happier now, as they go lots to theatre, boat trips, cinema etc. But still, as with this weekend just gone (will be moving to a new home soon) can tigger it off. She will probably have a few ideas up her sleeve.

motherofshrek.blogspot.com/

Hi de - have things calmed down for you this week? Is it the change in routine between the week and the weekend that is upsettng him, do you think?

HI,
marmoset, I have been watching and they may be a link with the change in routine. He's gradually got worse over the last few days, however it is the start of the hols.
This morning he's had a fit also and been really aggresive since, although for the past hour or so he's been lying down.
I had a docs app in between the fit and his outbursts so my doc saw quite a bit of it, she wished she had of taped it. lol.
The SW and behaviuor team are coming out this week to work on teeth brushing. I might tell them how hard it is going out as I ended up phoning hubby from work to help. I was just thinking a few extra calls went to hubbys mobile yesterday and today so thats the phone billgoing up and because he leaves work (unpaid)to help thats the wages going down. Whoopedo!!!
Anyway have just had my contraceptive implant changed although 6 month late!!
Hope all you guys are ok
Is all the sensory stuff still going well MGC? Still haven't heard back from our last profile which I think was maybe around March?
Take care everyone.

It must be so hard for you, you're coping brilliantly. Out of interest has your DS's behaviour got worse as the years have gone on? The only reason I'm asking is that DD2 is starting to become a handful more and more. I wonder if that's how things go when they have SPD.

The sensory stuff is going well. We finished Therapeutic Listening a month ago and has kept all her new skills which is great. She still has a little bit of auditory sensitivity, mainly when she sees or hears a baby and she also has issues with her vestibular sense which is impacting her gross motor big style. Apart from that we're slowly ironing out the sensory stuff and she copes really well in new situations and new places which is what was becoming more of a problem.

I can't believe you've been waiting since March for your profile, you should have had it by now!! I hope your SW and behaviour team can help you with the meltdowns and teeth brushing, good luck and let me know how you get on. xx

Hi MGC,
yes his behaviour has got worse as hes got older. He tends to add to the probs he already has rather than things being a phase. He's also getting bigger and stronger.
DS is also down syndrome and severe learning (if you didn't already know) so doesn't realise his own strength. Apart from the SPD, behaviour could also be put down to his SLD{?} Keep a diary of her behaviour and any noticable triggers.
Glad the sensory stuff is working. If the auditory is still a prob try ear defenders maybe. Have sent a few photos of son with his on, hope the links work!!
www.facebook.com/editphoto.php?aid=2026142&success=4&failure=0#/photo.php?pid=30447144&id=1541926646
www.facebook.com/editphoto.php?aid=2026142&success=4&failure=0#/photo.php?pid=30447145&id=1541926646
www.facebook.com/editphoto.php?aid=2026142&success=4&failure=0#/photo.php?pid=30447146&id=1541926646
www.facebook.com/editphoto.php?aid=2026142&success=4&failure=0#/photo.php?pid=30447147&id=1541926646
The behaviour team are going to start on the teeth brushing soon. Still waiting for the OT, SW going to chase her up again!!! will let you know what happens.
Take care x

Must add, the noise must outweigh the touch as he wears them. however he would rather get cold than wear a hat, probably hence the pneumonia each year.

Hi de - great photos - the smiles always make these cheeky little guys look like angels, don't they!! v pretty girl with him - is she one of yours? We had a major meltdown this week but this was my fault for trying to take him shopping which he absolutely hates... lots of shouting, swearing and lashing out (luckily he can't say his 'f' sound yet ). It really kicked off in a lift- not sure if it was connected to the lift or not but he said sorry and it passed. Funnily enough we passed two separate young men with DS out shopping with their mums so I live in hope! Do you get any help in the holidays?

marmoset, thanks Re photos. Thanks for the pretty girl, yes shes one of mine, 12yo, believe it or not ADHD/ADD/ODD.
Yeh we have to live in hope! Your ds sounds very like mine, my ds also doesn't say the f, his comes out with a B. Although his faviourite comment at mo is cheeky b***d. I like the way you caused the meltdown!!!
As for the holiday help, apart from playscheme, nothing for the nearly 4 weeks after that before they go back to school. What about you?

Hi de - just back from a few days away which went quite well. I have booked ds into kids club for a few days next week although he's usually there for most of the summer. I'm on Maternity still and thought that it would be nice to have everyone at home but he's bored and if I have to listen to Bat Out of Hell one more time, I'll throw myself out the window . He does love his music and the Top Gear CD is burnng a whole in the player just now.

Our 'f' comes out as 'b' too!

You definitely have your hands full - you must spend all your time sorting out strategies to suit both of them. Shouldn't you be wonderwoman?

Hi marmoset,
Wonderwoman??? no too big for that now, need to loose weight to be wonderwoman. lol.
Glad your break went well. Know where your'e coming from with the repetitive hitlist, only for me it's still mickey mouse club house and tweenies. Though I would rather have that then bat out of hell although I could watch top gear.
I wouldn't of looked at it as strategies just staying 1 foot ahead of the game. Although DD is fine most times and sometimes quite helpful. I give her space and she takes breaks on the trampoline etc.
First day of the school hols, couldn't do his nappy so phoned DH home from work for help, 2nd day I couldn't get him out of the docs, doc, nurse, receptionist, my mam, dd and me all tried together. The doc said he's not hearing anything we say he's just fixed in his own world so ended up phoning DH from work again to help get him in the car. I thought great phone bills go up, wages go down.
Then playscheme started. Nearly 4 weeks after that ends until school and I have been offered a helping pair of hands 3 afternoons a week until he goes back to school. I feel like I've went from nothing to everything.
We are used to quite a bit of energy around the house as DH been married before and has 4 other kids (part time) 2 of which are also SLD and another who comes with a grandson.
Hope the rest of your hols go well!!!
When do you go back to work?
How many is everyone at home for you???
Only if you don't mind me asking. Take care xx

Hi de - wow, that is a busy household! . There are 5 of us here plus the dog. Dh and me, ds1 as you know, plus ds2 who is nearly 11 and dd of 9m . I go back to work at start of September which is a bit scary - I am not quite sure how we'll all get out of the door on time.
My ds also refuses to move when out and about - he'll often just sit down and refuse to get up. the funny thing about him though is that if you find the right combination of words, he'll get up and do as he's told. After lots of misses, the School and I came up with 'ready, steady, go' and '1,2,3,' which both work miracles. For how long, i don't know but while it works, it works. My mum's cousin had DS and his dad was always being called out to get him until he grew out of it.
As you say, 1 step ahead while you can!
Brilliant that you've got more help - makes all the difference.
x

Hi marmoset,
my hosehold busy!!! at least half of mine is part time. I'm sure you'll all get out the door on time and after a while probably start enjoying work.
I'm going to try the 1,2,3, and ready steady go, sorry taking your ideas.
Also just wanted to add DH sister's daughter is also DS.
Take care x

I meant household!!!

I don't know if I am stating the obvious, but could he be in pain? When ds1 is behaving particularly badly - especially if distressed - we usually give a dose of paracetamol just in case. I have noticed friends' SLD kids go into meltdown because it is the summer holidays and all routine - and most help - goes out of the window. Good luck

de - Good luck with the 1,2,3, etc! For us, it buys ds1 time to process the instruction and he joins in with the '3' or the 'go' - hope it does the same with you. Another little routine i've just discovered which may or may not work is on toothbrushing. I have quite a lot of trouble there chasing ds round house with brush - he's too strong for the old headlock routine I got away with when both my boys were younger !! Anyway, yesterday, I started singing 'here we go round the mulberry bush, this is the way we brush our teeth' under my breath and he stopped fussing and we got an extra few seconds brushing time. Result! Worked again today - fingers crossed for tomorrow.
Is your dh's niece younger or older than your ds?
donkeyderby - that's an interesting point. i had a paed once who told me that if ds was grumpy, assume pain in joints and give him calpol! He can identify 'sore' now so I can check that first but it is something to look out for. i'm also trying to get him to take cod liver oil which we have to do in liquid form as he won't swallow pills- it is supposed to taste of orange but actually tastes of orange fish. Not a 100% hit rate there but tuna covers it well

Hi Guys,
Marmoset,
Niece is older than my ds by about 7 years. They are constantly compared within the family. We often get remarks such as.. she doesn't do that, she was doing this by now. etc etc.
She does not have the probs ours has such as heart condition for a start, not too mention the challenging behaviour side. She was walking by 2 ours couldn't stand or walk until 5.
They have had genetic testing, we haven't. Ours has been dx as T21, however it would be nice to know if he has translocation downs (hereditory). Do you know what type your ds has?
Hope everything's going well?
Donkeyderby, ds doesn't complain regardless of how he is. He just seems to get on with it and the docs have said he has a really high pain threshold. 2 years in a row now they have wanted him in hospital on a drip and oxygen for double silent pneumonia, however he's put up such a fight not too let this happen. He also had 12 teeth out in March and pulled all the stitches out more or less straight away. Thanks anyway.
Take care guys x

Hi Devientenigma, been a while since I've checked here. Thanks for the links, but I'm afraid I'm one of those really sad people who aren't on facebook, just never got round to it so couldn't see your lovely pictures.

Very pleased to hear you're getting some help now, 3 afternoons a week is lovely. I'm amazed how tactile defensive your DS is if he has such a high pain threshold, the pneumonia and stitch pulling made me wince. I will keep a diary of DD2's behaviour, that's a good idea. She seems to be getting more and more willful now and all her therapists seem to feel it's down to me not being firm enough with her but I do try.

Hi MGC,
With his tactile, it's anything iritant, tags, texture, gentle touches, kisses etc. He won't touch paint, grass etc. He needs held firmly. Hope this clarifies it a bit more.
I would also look for triggers to the behaviour(hard to do I know}. I do find parental skills is something that is blamed much too often. Do you have more children?
What I find works around the profs is don't ask your dd tell her e.g are we going to the car? option to say no and create. Come on car! no choice. Sorry if i'm teaching you to suck eggs!!
We are about to start the listening programme and therapy on his vestibular in 2 weeks time. Next week there is a programme going in around the teeth brushing.
If I can send you the pics another way I will.
Take care and hope everything's going well.

I think our DC sound very similar. We had massive improvements on Therapeutic Listening so hope you do too. We're due to start again at the end of August to iron out the last of the sensory stuff, in fact her auditory and vestibular are the last of the issues. No, not teaching me to suck eggs, I do find I'm quite weak with DD2, I was much stricter with DD1 (4yr NT). I will try the more direct approach.

Hope the teeth brushing program works for you, I know it's been one of your biggest problems. Let me know how it goes.

If you could send the pictures to mumgoingcrazy at yahoo co uk that'd be great if it's not too much trouble. Thanks xx

Hello everyone - hope you've had a decent day.
de - as if it isn't hard enough having to compare ds with non-DS kids! There can be such a lot of difference between kids with DS - I know a boy with DS who is almost the same age as mine but who has great speech, reads, writes and plays computer games. No comparison at all but i have it on good authority (Prof Sue Buckley who started the Downs Ed Trust) that kids at the severe end of the scale can keep progressing - even if it takes a long time. I know that it's really irritating if people pigeonhole all DS kids as the same and sort of look at you as if you haven't been trying hard enough!
MGC - totally agree with de on commands, not questions approach!