People don't want us in their houses because of DS. (obo Shiny)

[Boogalooblue]

"Of course I have been aware of this subconsciously for some time. It's the way friends say "when is DS next on overnight respite? You'll have to come round..." and DH and I have laughed about it privately.. because, to be honest, we can't blame them. DS trashes our house completely and daily, and when people come round and see, nobody in their right mind would want him round their's.

And we found ourselves having these saddo conversations amongst ourselves to the tune of "well bugger 'em.. we're fine as we are.." but to be honest, as the invites have stopped, it's not only us and DS2 (SN age 7) who miss out but DD (8) too. She is perfectly able to behave herself round people's houses so it's quite unfair on her. (DS1 is 15 and doesn't really desire to go out with us anyway luckily!)

Our closest friends (who do visit us but even they get a bit narked about what DS does to their house on the rare occasions we do still go round to them) are at a Halloween party today. She mentioned it, possibly accidentatlly, when they were round here 2 nights ago and I realised that we were invited and went along last year and said, without thinking "Oh we came last year didn't we!" Then realised.. it'll be DS. Everyone knows how his behaviour has deteriorated in the last year and how nasty, detructive and unsociable he has become. So I said "oh.. it's because of DS isn't it!" and friend admitted that yes it was and that there had been a discussion about it and the friends whose party it was had thought that apart from anything else, it would be a miserable experience for DH and I trying to control him so it 'wouldn't be fair' to invite us.

So I asked if they'd mind if DD went along with our friends and she's been 'desperate' to go to a Halloween party and they said yes of course. I spend a day or so feeling a bit sad and resentful about the lack of invite.. after I quickly replaced what DS broke last year! (casserole dish during apple bobbing) but I suppose he does ruin other people's experiences. I can't pretend not to understand how they feel.

Is anyone else in this position? I can't help but feel anxious about it. The whole of half term has been miserable because the weather has been foul, we've been broke as usual and it's impossible to even take DS for a walk in his wheelchair because he can climb out and it's stressful and unsafe. The wheelchair service don't seem to be able to solve problem. They said he doesn't need heavier duty restraints due to posture and therefore they can't provide them. hmm

If I was ever a single parent (heaven forbid) we would be almost totally isolated I know. At least DH and I deal with it all together and have each other. I hope to God our relationship doesn't go the same way as many with SN children, especially with DS's kinds of needs. We've had bad patches but so far have always pulled through.

We used to be able to take him anywhere. Now it's just not worth it and the worst we had to cope with was people staring and the diabolical lack of disabled facilities but now the effort and humilation involved are just too much. We still have a few friends but we rarely get invited anywhere as a family and this will be even less now because our overnight respite has stopped because the respite carer couldn't handle non-sleeping DS at night, and still function the next day! We have to wait for him to be referred to a centre which will take some time.

How do other families deal with having a "house unfriendly" SN child? Do you all actually still have friends??"

(from ShinyHappy)

We had been getting 6 hours a fortnight daycare respite and this started over 2 years ago now. Earlier this year, the soc serives panel finally granted us one overnighter every six weeks with the same carer at her home. This dropped the daycare back to less however.

The respite carer (a fab lady, font of knowledge, living and caring and a wealth of info and experience) says he is the most challenging child she has ever cared for. Has now been decided that she won't have him overnight any more because she doesn't get and sleep and then struggle with her day care duties.

So it has to go back to panel to see if we can get overnight respite at a centre. This is looking like a lengthy procedure with a waiting list. The places are like gold dust. But in the meantime we have been regranted the 6 hours a fortnight day care again so that's something!

In the beginning we used the daycare hours for "quality time with DD and DS1".. now most often we fall alseep on the sofa while DD amused herself!!

They are Lindam dog gates Yurt1. About twice as tall as a normal lindam safety gates. Nobody could jump them (well maybe an olympic athlete!) but certain children like DS have a bloody good go at climbing them. He hasn't succeeded yet. His best tactic is just to break them.

Our house is too small to have someone come in Yurt1. It has been suggested but anyone who knows out set up first hand can see that the only way to get a break for DS is to not be in the same house as him.

Even our new house (which we should have moved into last spring and will help matters somewhat) will not be suitable for someone to come in and help out. Unless it was a big f off mansion, DS would not be kept from the rest of the family!

Sorry Shiny - just worked out you and Boogaloo are one and the same and you already mentioned respite care.

It is shocking that people are left to sink just because they appear to be coping OK. It is short sighted to say you don't need to the help when a little help could go a long way to help you cope for longer and better. But you know all that I am sure. Again apologies for being naive.

I really hope you get a place in a centre. That really has to be a better option doesn't it, since there are more people to share the burden. I can't imagine being able to relax with somebody else staying in my home either - I would still feel ultimately responsible for my own child which is not what it is about, is it?

Shiny, love. Just popping in to say you and ds2 are always welcome here. (I know you know that, but just felt the need to say it again.) Will email. Have a (((hug))) for now.

Shiny, sorry to hear about your situation. My SIL started calming down "with age", she is 20 now, and has been calm for the last 5 years. This summer when I saw her she was almost "mellow" in temper.

This summer was the second time after having kids we wisited OHs family due to my SILs violent and erratic behaviour. Now we could see that the situation has changed, and we would even consider to let OH take the kids on his own to see his family.

My SIL goes largely undiagnosed. No doctor has seen her the last few years, MIL thinks "novelty" has worn off, and they are simply unable to figure it out. It is almost like development stopped at 18 months old. She cant feed herself, she cant go to toilet, she has no language, she cant pull herself up, she cant walk unaided. She is strong like a bull.

Does your DS go to school?

I hope that your DS will also become calmer as he grows up.

Niecie I'm not Bugaloo, she just posted for me because I (and a few others) could not start a new thread in the SN section, for some techie reason. And seeing as Tech was half way across the atlantic at the time and I didn't want to wait, Bug offered to post for me.

Scary that's encouraging. I could cope with anything but this behaviour; any physical. medical needs etc (although God forbid that he should be ill.. at least he's robust and generally healthy these days.) It's so depressing to have to get up to him behaving like that from the outset, having been listening to him shouting and banging his gate since 5am (and invariably a few times through the night.) And then, as we try to change him (he always poos first thing in the morning) he is kicking stratching biting and shouting "you're horrible, I HATE YOU!". We always respond with "well you're lovely.. and we love you.." which stops him in his tracks for a few seconds and he sometimes hugs us and says "sorry.. sorry.. I be good boy" and then, next second, he hits you in the face again and starts with the "you're horrible I hate you" stuff. This has been this mornings experience. He's still here because he's got a blood test before school. I went on the school run with DD and left DH sitting in the middle of the room, surrounding by carnage where DS has thrown everything he could reach and DS was banging him over the head with a hand mirror. DH wasn't even defending himself. I think we're both losing it.

I just wish I knew why he's like this. Someone said below I think that their child is just responding to compulsions all the time which I think is the same with DS. Although he does have genuine rages as well when he is preventing from doing something.. like scaling the window sills and crashing on the windows.

Thank you Ellbell. The one downside of posting on here is that people like you who know me in RL might worry. I know you would have us at your house, but I wouldn't bring DS; your house is beautiful and even though it's child friendly, it's not DS-proof. Nowhere is. Except maybe a padded cell. What a dreadful thing to say about your own child eh!

It is a tricky one, I think if I was your friend I would be reluctant to leave you out but also I would not want my house trashed either so I think I would arrange outings that don't involve being in the house. I rarely invite any families around as every time ds has his pre school friends over things get wrecked I'm not overly precious about my things or particulary house proud but last time I had ds's friend over 2 of his toys got broken, our white linen got drawn on, a vase got broken and our newly painted landing walls had scribble on! I find it much more relaxing to meet people outside of the home, but I appreciate that might not always be easy if you have a child with SN.

Shiny I am appalled (but sadly not supprized!)that you get so little respite! I too have lost almost all friends. Sociallising with Ds is very difficult - not least because of the way I feel when he does damage things or hurt/upset others! Keeping Ds under control is a full time occupation so conversation is almost impossible. It has become harder as hes got older and still behaves like an oversized overactive toddler! I invite only close family home as our small house is alway messy (Ds can mess make faster than I can tidy!)and chaotic! It is very isolating. Fortunatly Ds is no longer aggressive at least outside a meltdown and life has improoved for us all. I think he just matured out of that stage! Please dont beat yourself up for a hand slap- I doubt many have not reacted instinctively under such provocation they just dont admit it! I almost dropped Ds when he bit my nose whilst carrying him in the house (I stubbed toe and tripped on the threshold. I was so upset (i had espected a kiss!)I left him in the hallway! Nothing like pain or endangering loved ones (on top of sleep deprivation and general exhaustion) to break through the calm!. I hope you get some decent level of respite soon! I wonder if looking less poised and calm at next respite meeting would help? Take care Magso

Not worried, Shiny, just sad for you (the whole family). I still think that 'stuff' can be replaced and at the end of the day doesn't really matter... people matter.

I use DP's to pay someone to have ds1 in their house as well. He goes 2 Sundays per month at the moment. DP's are also used for people to help out in our house and take him out without us. That's the beauty of dp's I find- total flexibility. It did take me quite a long time to find people who could cope with him, but it was worth it for the flexibility it gives us.

It was me who mentioned compulsions. It is very difficult, because as you say preventing them results in meltdown (we've had a very, very difficult weekend with them). We haven't gone down the medication route but I think iirc small doses of risperidone are a possibility. Might be worth considering. I keep medication up my sleeve as a possibility for things becoming too difficult to manage anymore.

Shiny just wanted to send best wishes to you and your DH.

DS3 has repeatedly headbutted me recently and although he is only three it still damn well hurts, and it makes me worry for the future.

Do you parents of autistic children think the behaviour I have described from DS suggests autism as well? His respite lady has mentioned it.

Well I would ask someone to look into it. Asd and Adhd can be linked.

Shiny, have you heard of Crelling harnesses? They are supposed to be good for houdinis! They do wheelchair and vehicle harnesses.

www.crelling.com

someone may have already suggested this to you as it is pretty obvious I guess but instead of your dd missing it can't one of you take her to parties like this?

obviously it helps if you get an invite in the first place though

Oh yes pub next week!!

I was going to invite another local-ish Mumsnetter if that's ok.. Christ I've forgotten her MN name and she took DD and I to Bluewater (with her DD) last week. She is lovely! Is that ok?

Yes.. change of meds. Am starting to think the same thing. Did your friend's DD have any reoccurance of siezures? I would put up with anything for DS not to have any more of those..!

(I HAVE been to your house WITH DS.. and I KNOW you would invite us again.. stop stressing woman )

Update: We always go to the fireworks (whichever) with one set of friends. Said to her last night at a club our kids go to "So what we doing for fireworks this year?" She said "I hear there's some good ones at [such a place] but we're going to a party. At [suchaperson's] house. Sorry"

Felt stupid as we see fireworks with them every year so when I asked I was just assuming.

I pretended I didn't mind.

I do mind actually. Surely DS can't be seen as that much of a liability in someone's garden? But I suppose it will involve food and going inside the house. I expect that's the problem.

DH said "Bugger em, we'll go to a display on our own." I know we can but

Shiny - Aw

I see you posting all over MN, giving advice here, having a laugh there, I had no idea of the problems you have to deal with. Respect.
By the shedload.

Ju

Thank you BALG (intrigued by your name), that's a nice thing to say. Not sure I deserve your respect, all I seem to do on the SN board is whinge. But it's a good job I can let it out here. The friend to which is refer is my best friend in the world, she really deserves that label; has been there for me through thick and thin and I her (the friends who keep having the parties are more their friends than ours but we did used to get invited to stuff at theirs) and I would hate her to know I was whining about it. But sometimes you need an outlet. And I certainly don't want to make waves by saying "couldn't you have said no, sorry we're going to do [whatever] with the ShinyHappy's" even though it was in my head. Maybe I expect too much. It's up to other people what they want to do for firework night. And DS really is the pits sometimes. I suppose they've just had all they can take of him. He is horrid to their children at times, although they seem to take it their stride (our kids and theirs are almost like siblings.)

He is no too bad in a field watching fireworks though.

My boys are like dogs, they need a dammed good run daily.
Just fancied a change from my normal boringnickname

Hi Shiny.
What distressing reading.
I think oyu know that I am a salt who works with people with SN. I have a special interest in challenging behaviour (of this sort) and am doing an MSc in ABA in order to add new insight to my work.

The biggest issue at the heart of CB seems to be an inconsistent approach by those around the person involved.ABA is really helpful at
1.) defining target (ie unwanted) behaviours
2.) working out the antecedents and consequences of target behaviours
3.) deciding on a new approach to target behaviours

I am developing a protocol at present for use of this system in schools which allows staff to come together to decide on a uniform approach. We are piloting it at present and the data we have from three individuals with severe CB is very encouraging.

I would ask about ABA.

If all else fails, get hold of a book called 'Don't Shoot the Dog!' (about £6 by Karen Pryor) and read it.It is ABA in very easy terms.

So sorry,it aounds dreadful for all of you.